Linda (Kaywood) Bilyeu is a self-published author. Her books are available on Amazon. She writes from the heart—there is no other way.
Florida Hospital East Orlando...Our Home Away From Home
Team Cap's journey with Prostate Cancer began in Jan. 2008 when Dave's PSA was found to be elevated during a routine blood test for his Life Insurance policy. It had been an emotional roller coaster ever since. I had no idea what a prostate was or what it's purpose was until my husband was diagnosed. That moment will forever be etched in our memory and had transformed our lives. We learned many lessons along the way, which I will share with you while you embark on our journey.
Needless to say, I now feel I am educated enough to write a book, such as this book, on the treatments associated with prostate cancer. That's what happens when we are forced to deal with the unknown. We research until our brain cells are exhausted and scream for a break. We cry and console. We walk around in shock and disbelief. We wonder how one tiny moment can change our lives so drastically. The one thing we never, ever do is give in....we fight back!
I have learned many basics that I feel I need to share. PCa is genetic even though my husbands first urologist who performed his biopsy said it wasn't, yes we dropped that doctor like a hot potato. Dave's father lost his battle to PCa in 1994, his older brother and younger brother are both in remission, as far as I know since the brothers don't communicate. A father and three sons battle with the prostate cancer beast tells me and anyone else with common sense that prostate cancer is genetic.
I've learned that all is takes is a simple blood test to check the PSA can save a man's life. Yes it's that simple. Every man should know his PSA baseline by age 40 not age 50. If that baseline number rises your doctor will know what to do next. A rise in PSA doesn't always mean cancer, there are other reasons, but a baseline is mandatory. A PSA baseline isn't 4.0 anymore, I've spoken with PCa patients who had cancer with a lesser PSA. Prostate cancer isn't just for old men, I've spoken with men in their thirties and forties with prostate cancer and some beat it while some died from it. A sad story which continues to tug at my heart is of a young dad whose wife had just given birth to twins when he was diagnosed. He died a short time later. Just not fair.
PCa (short for prostate cancer) can be caught early and cured with either surgery, radiation or hormone therapy just to name a few. The sooner it's caught the better. It has no early signs or symptoms, this is why the PSA test is SO imperative. A DRE (digital rectal exam) is just as crucial to have performed. Sure, men joke that there is no way they are going to bend over and cough...really? You could always put your legs up in cold stirrups and spread 'em! Or better yet, have your ta-ta's compressed between two plates until they are the size of a pancake! That's right...Man up! Get checked!
Dave and I together as a team have been through countless PSA tests during our journey of the past 7 years. We have been through numerous doctor visits, tests, xrays, radiation treatments and hormone therapy injections. My husband was truly my hero. He never complained or asked "Why me?" He handled every step of the way with his chin up saying "Bring it on!" He was a fighter who never had a pity party. Dave, Manned up!
My purpose here is to save a few lives by simply asking you to be your own advocate, have your doctor perform a DRE, get your PSA blood test and know your baseline number....don't allow Prostate Cancer to win!
We are often asked how the name, Team Cap, came about. My response...We are a Team. Dave is a fan of Captain America. He was a proud owner of many Captain America shirts in which he wore for his treatments. I would post the photos on social media, where we had a huge following of supporters. They would post, "Go Cap!" in which we became, Team Cap.
Dave was very proactive with having his PSA checked yearly, beginning at age 50 and also a DRE for good measure. His PSA was always below 4.0. In 2007 his PSA was 3.4, higher than 2.0 in 2006. His family doctor suggested a repeat PSA at 6 months instead of a year, but since the PSA was still under 4.0 Dave opted out and waited the full year. It was during this time that Dave's older brother was diagnosed with prostate cancer, but considered the diagnosis personal and didn't notify his brothers. If Dave had known at this time, he would have went at 6 months for a PSA test. If wasn't until after he was diagnosed that he found out about his older brother and was then told by his mother, "Oh, your brother was diagnosed last year." Wow! That was a MIND BLOWN moment. I can not emphasize enough the importance of sharing medical history with your family. I think Dave's story is a perfect example of how you could help save a life.
Guidelines state PSA under 4.0 is normal, so I can understand why Dave didn't panic. But I sure wish he took the doctor's advice. In 2008 his PSA was 5.6. That jump between 2006 and 2007 is when the cancer began. So in reality his post-surgery PSA that was rising was not his "new normal" it was the cancer that had escaped in his bloodstream. I figured this out on my own and I am not even an "Ologist!" I am a wife who was determined to fix what was broken.
Urologists and oncologists who care for prostate cancer patients, listen up...
I write letters for therapeutic reasons. At times I share the letters, then again at times, I do not. A letter is a way of having your voice heard while getting your point across. I wrote this letter to the clueless Urologist/Surgeon who performed Dave's robotic surgery in 2008. While his surgery was well done, he was obviously in need of further education for his post operative care.
This letter is not intentionally directed at just one medical professional, it's directed at many. I feel compelled to share some misinformation that my husband, I and many other patients received while in your care for prostate cancer. The data I collected over the past few years might apply to just a handful of people or maybe a few thousand. At this time I don't know how many people are affected, but hopefully I'll find out. If someone is ever in the same situation as we are I hope this message offers some insight for their journey.
After completing a successful robotic surgery on May 30, 2008 you, Mr. Ologist, informed us that my husband's post surgery PSA of 0.1 was "Outstanding, that's exactly what we wanted." Biopsy results showed cancer was organ contained, margins were clean, negative lymph nodes, no extra capsular extension and the seminal vesicles were clear. In your words, "Perfect results." We were ecstatic with the news. We made the correct decision to get 'er done and have the prostate removed. We can stop worrying and finally have a life again. Dave beat the beast. Since we were told countless times that "most men die WITH Prostate Cancer not OF" we assumed we were good to go.
But.....the PSA began to slowly rise, huh? How could that be? You told us, "don't fret, this is probably just your "new" normal PSA level." We were seeing your team of urological specialists, who work under your guidance. With you being "the BEST in the country" who teaches worldwide, we felt confident you knew what you were talking about. You were also the surgeon who performed the prostatectomy, because you have performed thousands of them and were highly recommended. How is that BEST title holding up for you these days?
Your team continued to hound us and try to schedule appointments for a penile pump. Are you serious? A penis pump? The PSA is RISING, you idiot! There is something wrong here that a penis pump will not fix! We would go into your office for follow ups. Before each visit Dave had to fill out a survey. Does your penis work? Erections? Urinary issues? Each time we shook our heads and said, this Doc is totally clueless with Prostate Cancer. He might be good at removing the organ, but when it comes to after care, he is a major fail. It was time to move on, unfortunately it was a bit too late. I think it is safe to say that we wouldn't be celebrating in Celebration, Florida.
Prostate cancer journey began on 1-29-08 with a PSA Alert of 5.8
Feb. 19, 2010
Aug. 20, 2010
Feb. 21, 2011
March 4, 2011
November 8, 2011
May 24, 2012
Casodex (added fuel to fire, use caution with this drug)
Oncologist ordered a break until further notice due to low enough level of testoterone.
October 4, 2013
January 23, 2014
May 23, 2014
Sept 8, 2014
Dec 29, 2014
April 20, 2015
Prostate Cancer journey continues...
How could you not now exactly was going on? The PSA continued to slowly rise. Hmmm? We asked you a few times couldn't the cancer have escaped via the bloodstream? Your cocky response was, "Absolutely not possible, even if maybe a few cancer cells escape they need their buddies to survive and without them they die." Well doc, we have news for you....it is possible and the buddies came along for the ride. You offered no other explanation as to how there were still cancer cells present and accounted for with Dave's perfect post-biopsy. You did mention that we had no worries for at least five years because prostate cancer grows at such a slow pace. You then told us Dave might possibly experience a chemical recurrence. do you think? We beg to differ, doc, there is no "might!" You were wrong, yet you never offered an apology. Something was wrong and you allowed us to waste months of precious time. You should be ashamed of yourself.
You then suggested we see a radiation oncologist. You passed the buck since you obviously had no clue as to what was going on. I sure hope you furthered your education and did not lead other men to believe they were cured when in reality the cancer was continuing to fester in their bloodstream.
So....we placed our trust in the radiation oncologist since the "best doctor in the country" had no idea what to do next. Dave went through 39 radiation treatments and handled the side effects like a trooper. Guess what, his PSA continued to rise. Obviously the cancer wasn't in the prostate bed, now was it? Kind of a waste of time and major bucks, wasn't it?
So....Doctor of Radiation Oncology you suggested a bone scan. Imaging showed metastasis to the hip area. You suggested radiation treatment to the hip area. Oh my. Here we go again. We asked you, "doesn't radiation cause cancer?". Your response was, "there's always a chance down the road, in maybe 50 years." Guess what doc, you were incorrect. In the past 3 years we've heard of 4 patients who developed bladder cancer from radiation treatments to the prostate bed. Dave now has microscopic blood in his urine, we'll get back to you if anything should come of this (minor issue). Fifteen treatments later PSA jumped from a 4.9 to 23.2! Are you serious? Are you doctors truly this clueless? Did you piss off the cancer? What happened?
So....you suggested a urologist to begin Hormone Therapy. It kind of felt like we were being pushed along, like we were on a conveyor belt, from one Ologist to another. Move along now....next! All the while no one really had a clue as to what was happening.
We went to visit with the Urological Oncologist. He seemed very confident as to what we should do next. He answered questions thoroughly. He gave us no misguided information and warned us about hormone resistance. We were confident this would work. Dave began Hormone Treatment. First injection was a success. Second injection wasn't. PSA began to slowly rise again. Mind you it's been three years since this roller coaster ride began. Bone scan ordered and completed. Results next week. Trust me Ologists, I will keep you posted on our journey that according to you, we shouldn't be on.
What's up doc? It would be nice if you were all on the same page. Don't sugar coat a diagnosis. We want the facts. Don't procrastinate. If we don't ask that "magical question" that you are waiting for us to ask, tell us the answer anyway. You took the oath to save lives, do your job. Thank you.
Disclaimer: This memo is not intended for all doctors, just a select few. Based on my opinion if you encounter a overly confident medical professional with an enlarged ego, seek another provider immediately.
In addition to the first urologist that performed the biopsy and diagnosed the prostate cancer, I have a message for you ... Prostate Cancer IS hereditary. So never, ever, ever tell a patient it isn't. Your lack of knowledge in genetics makes me fear for your patients lives. My husband's father died of Prostate Cancer within months of being diagnosed in 1994 because along with doctors being truly clueless back then, the PSA test wasn't even part of the yearly physical. Years later his three sons were all diagnosed with this disease within a 4 year period. Dave had the most aggressive form while the older and younger son were just treated with seeds and surgery. Obviously the bravest of the three sons had the most aggressive form of PCa. My step son had his PSA tested at age 30 for a baseline number. So Doc, this is a perfect opportunity for you to think before you speak. My step grandson is also at danger of having prostate cancer, so kindly remind men that this dreadful disease is genetic! Also, consider retirement.
Updates for Dave's journey with Prostate Cancer
4/28/11 Bone Scan revealed metastasis to spine. We will meet with the Radiation Oncologist on May 10th. We also discovered some shocking information from a new doctor. Why didn't you ever mention to us three years ago .... Dave's Gleason was 4+3 which we knew BUT what you neglected to tell us was that 5% of his cancer was a Gleason 5 which is more aggressive.
Hmmm....this doctor was curious as to why you didn't suggest radiation treatments immediately after his post-PSA went from 0.1 to 0.3. I told him that I mentioned it to you, but you thought we should have 3 PSA rises first. Next time you might want to recommend differently. Patients might not have went to medical school, but we actually have more common sense then you might think. A framed piece of paper displayed on your office wall doesn't make you a genius, it makes you a human who is licensed to make mistakes. It's because of this the 39 rad treatments to the prostate bed Dave were pointless. You had us wait to long and we trusted you.
5/11/11 Radiation Oncologist notified us there is a tumor in the area. He suggested 10 external beam radiation treatments to the spine. CT-Scan tomorrow. Treatments begin next week.
6/3/11 Radiation Treatments are complete. PSA test to follow in 6 weeks.
7/15/11 PSA 59.1 .... this is not a typo. We are still in shock how a cancer could get caught "so early" and still be so out of control.
8/4/11 PSA 98.7 ... THIS IS NOT A TYPO. We found out today from our new oncologist that our urologist neglected to tell us the accurate PSA of 98.7. How does a doctor looking at your chart not share with you your own PSA of the test that he ordered? He told us the PSA of the test the previous oncologist ordered which was 3 weeks earlier! So Dave's PSA went from 59.1 to 98.7 in three weeks! The NEW oncologist also suggested against everything the urologist suggested! Why can't these doctors work together and figure out the best game plan and stop using their patients as guinea pigs? Very aggravating.
The urologist also neglected to tell us about lesions on Dave's lungs for a CT SCAN that he ordered, but the Oncologist spotted them immediately on the scan! Repeat CT Scan in 2 weeks and then decide on the next move. Chemo, Provenge, Zytiga.... the list goes on. Yes, I made the urologist aware of his mistake. We have to be our own advocates and always right a wrong! Update: The wrong has been righted. Urologist just phoned me, his staff never entered the latest PSA in Dave's file and the suspicious spots on the lungs weren't in his files either. Clerical error.....at least we found out. Everything happens for a reason which is why we heard this info from the oncologist and not the urologist. Began Xgeva injections for bone strength.
8/26/11 Results of CT Scan was fine. Second Xgeva Injection. PSA is now 189 .... Provenge treatment to begin soon. Dave and I have both decided that PSA is irrelevant at this point. We will no longer allow those numbers to control us. Dave feels great. No issues. He works 40 hours a week and loves life. He's a fighter and my hero.
9/23/11 Third Xgeva injection.
10/11/11 Still waiting for Provenge Treatment to start. It's been a LONG wait. Dave has more back pain, less of an appetite (which is shocking), food taste different, more fatigue. Cancer is on the move, I wish the oncologist moved also!
10/20/11 Provenge Treatment will begin on October 28th at the blood bank for the leukapheresis, followed by the infusion on the 31st at the oncologist. I was tired of waiting for the oncologist office to send us a schedule and I went straight to the top! I was in contact with the Chief Medical Officer of Dendreon the manufacturer of the Provenge Vaccine and he had a schedule for us within hours, not months. Thank you Mark and Beth! Dave has lost 9 lbs in the past 3 months. His loss of muscle mass is obvious to me. Fourth Xgeva injection was today. MRI for back pain is scheduled for next week.
10/28/11 Provenge Treatment has begun. Leukapheresis process went smoothly (4 hours from start to finish) as did Provenge therapy (3 hours start to finish) on 10/31/11.
11/4/11 Visit to the oncologist. MRI results were good. Weight is steady. Appetite is back to normal due to taking Megestrol which helps increase appetite. PSA is now 559. Wow! Testosterone is 28. Up from August when it was 18. Hemoglobin is 8.2 down from 9.2 one week ago. This is a dangerous level and could cause a stroke or heart failure. Blood transfusion is set for Sunday at 8:30. We were warned that the leukapheresis process could weaken hemoglobin levels and as we all know so does cancer. Oncologist suggests we begin Eligard again. YA THINK? I thought we should have 2 months ago, but what do I know since I didn't go to Medical School. Injection is scheduled for Nov. 8th.
11/6/11 Blood transfusion was today. It went smoothly. We did the Type & Cross on Friday and it did save us some wait time at the hospital today. Transfusion took 6 hours for two pints of blood. Dave is tired from the treatment but feels good otherwise. At this time I would like to do a shout-out to the nurses and staff at Florida Hospital Cancer Institute. Their kind hearts, patience and caring ways to the patients and their family members goes above and beyond. I commend them for their hard word and dedication.
11/11/11 and 11/14/11 2nd Leukopherisis and Provenge Treatment.
11/17/11 - Oncology appt. Hemoglobin is 10.6! Great news! Weight is stable! Xgeva injection.
11/25 and 11/28/11 3rd and final Leukapheresis and Provenge Treatment. Except for the one blood transfusion the Provenge treatment went smoothly. No problems. We won't know if it was successful for a few weeks.
12/1/11 MRI for knee pain. Results were arthritis. A knee replacement is needed at a future date.
12/16/11 FIRST PSA since Provenge treatment. Results 323 which is superb considering that his pre-Provenge PSA was 559 and his oncologist repeatedly warned us NOT TO PANIC because the PSA will DOUBLE after Provenge! Hmmm. Still clueless I presume? We are thrilled. Hemoglobin is low at 8.6 we go for a recheck on Monday. Xgeva injection. Next oncology appt is 1/5/12 we will see what happens with chemo then.
12/19/11 Hemoglobin is 7.9
12/20/11 Blood transfusion
Cap puts up a good fight!
Prostate Cancer journey continues in 2012
1/5/12 PSA is 315 Hemoglobin is 10.9
1/26 Hemoglobin is 9.3
2/2 PSA is 302
2/10 Hemoglobin 8.3
2/16 Blood transfusion.
3/19 PSA is 384 and Hemoglobin is 8.3 Potassium levels are also up.
Another new treatment begins today. Zytiga along with prednisone. Normally after the Provenge treatment steroids should not be used for at least a year. Under Dave's circumstance he doesn't have a choice. So we will never really know if Provenge was a success. We do know that it lowered his PSA for only three months.
3/22 CT Scan - Chest
3/23 Bone Scan
3/29 Hemoglobin 8.7
4/6 Multiple X-Rays to hip, spine, shoulders
4/13 X-Rays show activity in areas, not sure if it's Provenge or Zytiga in action or cancer mets. Hemoglobin 7.0
4/14 Blood Transfusion. 3 units needed instead of the usual 2
5/4 Hemoglobin is 8.2
5/7 Procrit Injection for anemia (These injections will be performed weekly to help build up the hemoglobin)
5/10 PSA is 617
5/11 Blood Transfusion
5/21 Procrit injection
5/24 PSA 544 Hemo 9.3
5/29 Procrit injection
6/4 Procrit injection (doesn't seem to be working well)
6/8 XGeva Injection and Hemoglobin 7.9
6/9 Blood Transfusion
6/11 Hemoglobin 10.9
6/18 Bone Marrow Biopsy...Results on 7/5/12 were as expected Bone Marrow Dysplasia due to mets.
6/21 Hemoglobin 9.5 and Procrit Injection
6/29 Hemoglobin 9.3
7/5 PSA 507
7/9 Hemoglobin is 8.8 and Procrit Injection
7/16 Hemoglobin 8.2 and Procrit Injection
7/19 Blood Transfusion
7/26 Hemoglobin 9.8
8/2 Hemoglobin 8.9
8/6th, 13th, 20th - Procrit Injections
8/10 Hemoglobin 8.7 and Xgeva
8/15 Orthopedic surgeon suggested a knee replacement due to arthritic pain. Oncologist nixed the idea due to potential blood loss. I bought Dave a cane which helps reduce the pressure. He also had a steroid injection in the knee which has pacified the discomfort for now.
8/16 Hemoglobin 8.8
8/23 Hemoglobin 8.4
8/24 Blood Transfusion
8/30 Hemoglobin 10.2
9/7 Hemoglobin 9.0 ~ PSA 732 ~ Zytiga is no longer working. Next step is chemotherapy with Taxotere. 3 weeks on, for one treatment a week and then one week off. Repeat as often as needed.
9/10 Procedure to insert chemo port went smoothly. The port is the size of a quarter and could now be used for chemo, blood transfusions and IV antibiotics if ever needed. It took me about 7 hours today to finally schedule an initial chemo appt. for Wednesday. All I can say is never, ever, ever give up.
9/12 Initial Taxotere treatment went OK. Received Procrit injection. Tested hemoglobin which was low as I suspected. 8.0
9/13 Blood Transfusion
9/19 Taxotere treatment went smoothly. No side effects as of yet. Hemoglobin is 9.6 and platelets are low at 33. Benadryl and Decradon are administered via an IV. 20 minutes for each followed by 60 minutes for Taxotere. Received a Procrit injection.
9/26 Third Taxotere treatment. Side effects are a bit of tingling in fingertips, fatigue and slightly, slurred speech? Has anyone experienced this with Taxotere? Hemoglobin is 8.9 and platelets are 28.
9/27 Visit with Oncologist. PSA is 842. Doc is optimistic that PSA will drop soon. We hope so! CT Brain Scan is scheduled for Monday to be sure there is no mets to the brain due to the slurred speech. Weight is steady. Dave is tired. His bum knee is his worst complaint. He's a trooper.
10/1 CT Scan revealed mets to the Dura. The brain barrier. He was now part of the 1% of men who had brain mets involvement due to the relentless prostate cancer. They are pushing on the right side of his brain causing the slurring of words. The scan was at 4:00 and the oncologist phoned us at 5:00. WOW talk about panic when a doctor calls you that quickly! We now need an MRI and 10 doses of radiation. The rads is subject to the Radiation Oncologist meeting sometime this week. The Taxotere chemo treatments will not help the mets since supposedly chemo doesn't penetrate the brain due to it's ability to fight against toxins. We keep on learning and keep on fighting.
10/5 CBC revealed that hemoglobin is holding steady at 8.9 and the platelet count is higher, 28 last week to 40 this week. That's very good news. At this point we will take ANY good news we could get. PSA test was given. Will know the results next week. We also had an MRI test performed for the brain. We will know those results on Tuesday when we see the Radiation Oncologist. Procrit injections have changed from 20K to 40K. Why this wasn't done sooner we don't know. We can't help but wonder if Dave didn't ask the oncologist if slurring of words could be a possible side effect of Taxotere when they would have scheduled another MRI. We need to be our own advocate. I don't know how many times I must repeat that. We must insist on tests, question the "professionals" and never take NO for an answer.
10/8 Dave began Short Term Disability. Chemo is kicking his butt. His energy is low, but his strength is to be admired.
Ten Foods That Could Prevent Prostate Cancer
- Green Tea
- Pomegranate juice
- Licorice Root
The floor caved in under our feet once again...
10/9 PSA is now 1336 (WTF!)
Once again we did as we were told to do. On Oct. 1 one hour after having the CT Scan our oncologist's assistant phoned us to make us aware that a lesion was discovered on the right temple of the dura, not the brain, not the skull ... the dura (a layer of tissue that surrounds the brain, just inside the actual bones that comprise the skull). We were told to schedule an MRI and visit with the Radiation Oncologist. This is what we were told. We did what we were told SINCE the doctors know what they are talking about and of course we trust them. Right? WRONG!
Today we visited with the Radiation Oncologist to discuss treatment to the lesion on the dura near the right temple. Right? WRONG! We were told that the ENTIRE dura was effected and thickened. We were also told that there are FOUR tumors within the brain. WTF? We were so not prepared for this. Neither was our RAD ONC who was also a bit taken aback that we were not told by our oncologist. During our five year journey this doctor is the only one we ever truly trusted, from the start he told us like it is. He had tears in his eyes, but he held tough. We thought surely this was a mistake since this grim diagnosis only affects 1% of men with advanced prostate cancer. If the ONC had paid closer attention to Dave's medical history he would have suggested an MRI sooner.
Why didn't he? Because in the studies performed to men with Dural Metastasis they had 1- previous spinal mets, 2- they were hormone resistant and 3- their PSA continued to rise despite treatments. There you go, it's that simple Dave qualifies for all three. If the ONC had taken a few minutes to stop and think possibly the Dural Mets could have been prevented. Yet, the clueless doctors failed him once again.
The plan is to continue with chemo that does absolutely nothing for the brain. We are scheduled for radiation planning to begin ten treatments to the brain. There is no cure. Only slowing down of the mets. Dave's cancer is rare. There are no two cancers alike. This mets via the blood stream to the brain could have happened in one month (per Rad ONC) or has been going on for six months (per ONC). There is no way to tell. Since Dave had no symptoms, an MRI was never ordered. The most common symptoms are lower back pain, seizures or headaches.
If Dave didn't mention his slurred speech he would have been dead within 2-3 months. Having rad treatments will give him 4-10 months. Possibly a year or two. We do not know. He's a fighter. He continues to fight. He says he's fighting for me. I suggest he doesn't. He refuses. Bless his heart.
After we received the dreadful diagnosis I texted our Triage nurse that our oncologist failed us. Within 30 minutes our oncologist phones us. He's upset, I'm upset. We bicker back and forth. We regain our composure for Dave's sake and continue with our mission to help buy him more time. This is my news from today. I leave you with Cancer sucks and Prostate Cancer doctors are still clueless!
10/10 This morning Dave had radiation simulation. It went smoothly. 20 minutes. A mesh mask was formed for his face. During radiation which begins on Tuesday the mask will be clamped to the table so that his head doesn't move and the radiation beams hit the right target. This afternoon was Taxotere treatment #4. He lost 10 lbs and is down to 175. Hemoglobin is up to 9.2 (from 8.9) and platelets are up to 60 which is good news! We are thankful for any bit of good news we receive. He's made it 4 weeks without the need for a blood transfusion, which is more good news.
10/11 We have so many questions for the ONC, yet he's unavailable since he's on vacation. As is his assistant. Makes me feel all warm inside knowing how much certain oncologists care. I was told today of an oncologist who is part of this group who actually gives his cell phone number to his patients in case they have any questions. Bless his heart. Not sure why we never heard of him until today. For some reason Dave still respects his ONC.
10/12 Procrit Injection and once again we heard from the lab tech..."I don't understand why your physician only ordered 20,000 ml instead of 40,000 ml." I also realized today that the clogged ear feeling that Dave has been having for the past 3 weeks is most likely from the "moderate left mastoid inflammation" that is detailed on the MRI Final Report. The ear issue began a few days after the slurring of his speech. I now also remember puffiness under his left eye that came and went during the past 3 weeks. Just a few times.
A few days after Dave filed for Short Term Disability he officially retired from Winn Dixie. He rarely, if ever missed a day of work since he was 14 years old. Dave wasn't ready to retire, he enjoyed his work. He was the #1 Meat Man in Orlando for many years, no one could run a meat department like him and he wasn't going down without a fight. Yet, he only had energy for one fight at a time. Life goes on...the journey to kick cancer's ass proceeds.)
Area and percentage of involvement that mets occurs in men with advanced prostate cancer is:
1% The brain
25% The liver
50% The lungs
90% The spine
Radiation and Chemotherapy
10/16 Today was the first radiation treatment out of 9. It was originally planned for 10 treatments, but the Rad ONC upped each dosage a bit so that Dave could end his treatments on Friday the 26th instead of a Monday. His mask was adjusted and held his head in place during the treatment which lasted 10-15 minutes.
10/17 Rad number two. Chemo followed. Taxotere was dropped from 61ml to 59ml since platelet count dropped to 24 from 60 last week. Hemoglobin is 8.7. Weight is now 170. Dave noticed pitikia spots on his abdomen, could possibly be from straining due to constipation (common with chemo) or low platelets.
10/18 Rad number three and Oncology visit. I suggested we adjust meds. He was taking both Prednisone (from Zytiga days) and Dexamethason (inflammation around brain). No more prednisone. Received a script for Oxycodene, just in case he needs it, but he has no pain now. Over the counter Prilosec for stomach upset from chemo. He's developed thrush from chemo so he's now swishing around with Nystatin. Also Generlac for constipation. We also received a script for a wheelchair which is covered by insurance. Doc's explanation as to how Dave developed brain mets. People are living longer with cancer due to new medications. With resistant cancer the damn cells will still find a place to spread. There was no way to determine that Dave had brain mets because he had no symptoms. He also suggested I stop trying to find an answer because I will make myself insane. In other words, don't try to do my job. In other words, I don't want you to know more than me. I told him I actually felt sorry for him and fellow doctors because as hard as they try (most of them) to save a life, they are still so clueless. He agreed cancer knows more than they do. Cancer has a will of it's own. Cancer sucks.
10/19 Rad number four. Procrit injection. Thrush seems to be getting a bit better. Dave's rinsing with Nystatin. I also have him eating greek yogurt with live cultures. He places a tbsp of yogurt in his mouth a few times a day and allows it melt away. We also noticed edema in his feet, he's drinking more green tea and also the left side of his face is a tad bit puffy. We also ordered a wheelchair via Blue Cross Blue Shield due to his knee issue getting worse and his lack of energy due to treatments.
10/22 Rad number five.
10/23 Rad number six. Also had a visit with our Rad ONC. There is swelling in Dave's left ear which is causing the "full" feeling. Ear-drops prescribed. Most likely due to rads, even though he had the issue before rads started. Facial swelling and edema is most likely due to Dexamethasone. Will reduce to 4mgs on Thursday. Dave is tired, very tired. Not very hungry, but I'm trying my best to force feed him. Still working on the thrush issue.
10/24 Rad number seven. CBC (Complete blood count) before chemo didn't go well. Hemoglobin is 8.2 and platelets are 18. We scheduled a Blood Transfusion and Platelet Infusion for Friday 10/26. On 10/25 we scheduled a Type and Cross. Supposedly when a cancer patient has chemo and rads concurrent the platelets take a real beating as does the patient and the caregiver. Chemo proceeded as usual.
10/25 Rad number eight. Type and Cross set for tomorrow. We finally received Dave's new wheels! His wheelchair was delivered and he was attempting to pop some wheelies :)
10/26 Final radiation treatment! An MRI will be performed in 4 weeks to see how or if any progress was made to Dave's dura (brain barrier). Blood transfusion and platelet infusion went smoothly. Nurses at Florida East Hospital are so incredibly awesome! Dave is doing well besides being fatigued. His left ear still has the full feeling which makes him not hear as well, or so he says :)
Prostate Cancer journey continues
10/29 Oncology visit. Weight 167. He's lost 20 lbs in 6 weeks. Energy is very poor. Ear is still clogged. Oncologist noticed some fluid, but said to stop using the ear meds and pressure should pop on it's own. Mind you he's been complaining about his ear since Sept. 7th to the oncologist. Full feeling was off and on, it became completely blocked a few days before radiation began. All opinions are welcome if you'd had this issue before. This might seem like no big deal with everything else is body is having to endure, but I had my ear block up for 2 weeks and I know how annoying it could be. Began taking Diflucan to aid the Nystatin in ridding his body of the thrush. Began drinking Ensure to help fatten him back up.
10/31 Hemoglobin 9.3 and Platelets are 23. Weight 169.8
Labwork and PSA were performed.
11/1 I scheduled an appt with our family doctor to get his opinion on Dave's ear issue. He immediately suggested upon examination that it's a blocked Eustachian Tube and an ENT should be able to drain it. That appt I scheduled for Nov. 6.
We also received an urgent phone call from Annie our triage nurse that Dave's calcium was dangerously low at 6.3 and he need two calcium infusions immediately. We proceeded to have one done today. This procedure took 2 hours. He's now ordered to take 2400 mgs of Calcium pills a day. He was on calcium, but kind of slacked off a wee bit two weeks ago. Uh oh! Exgeva injections make the calcium levels plummet.
11/2 Calcium Infusion. Dave's new PSA is 1167. We are excited. His PSA usually doubles after radiation, we were expecting around 3000. We'll take the 1167, down from 1336. Happy weekend! Time to recoup and breathe a bit.
11/5 Oncology visit. Dave will continue on Dexamethasone to help give him an appetite. Weight is 166.
11/6 ENT visit was a success! Dr. Harrington drained and placed a tube in Dave's left ear. He's now able to hear again from both ears. There is no more annoying buzzing in his head. I'm so relieved for him and I'm glad I didn't stop at three doctors opinions at why his ear was blocked. The fourth doctor who sent us to the fifth doctor finally took care of the issue.
11/7 Chemo visit. Hemo is 8.5 and platelets are 26. Even though hemoglobin is low he can't have a blood transfusion unless he's under 8.0 due to dangers of excessive iron build-up in his system which would halt transfusions until that's treated. Asking for positive thoughts that his immune system gives his hemoglobin a natural boost. Procrit injection.
11/14 Chemo visit. Weight is up to 169. Procrit injection. Hemoglobin is low at 7.9.n
11/15 Blood transfusion. Two units.
11/19 Oncology visit. Weight is 170, which is nice news that he's gaining a bit. The oral thrush is cleared up. I give Dave 2-3 Boost drinks a day, plus his appetite is good. We had his calcium drawn on Nov 7th, but no one could find the results. Re-draw on Wednesday, hopefully the results won't get lost this time. Eligard is being placed on hold since testosterone is non-existent. The wheelchair has been a godsend. We are able to get out of the house more often for walks or shopping. Dave is doing well and getting plenty of rest. I'm going to consider getting a bit more rest also.
11/21 Chemo. Weight is 173. Hemoglobin is only 8.8 which is a bit disappointing since Dave just had a blood transfusion six days ago. His platelets went up to 32, which is good news.
Follow up MRI Brain Scan is set for 11/26. This will tell us how or if the radiation treatments were a success. We will receive the results on 11/28. I'm asking for as many positive thoughts that you could spare.
11/28 I can not begin to thank each and every one of you who continue to send us positive vibes. You amaze me with the strength of your power! We received good results today. The radiation seems to have served it's purpose which is amazing. We have a follow up scan in 2 months. Dave's hemoglobin is holding steady. His weight is now at 173. The plan is continue with Taxotere. We have no doctor visits for one week which is outstanding! Thank you again. Y'all know who you are.
12/5 Chemo and Procrit injection. Weight is 167. Hemoglobin is 8.7. Platelets are 50. The best news of all is Dave's PSA is 718. Dropped from 1167 on Oct. 31. That's outstanding! Taxotere must be working. Amen to that! Time for him to rest and for me to fatten him up a bit. Taxotere makes him very tired, but he's a trooper.
12/11 We decided upon a second opinion from the Radiation Oncologist regarding the post-MRI radiation results. He's also pleased with the outcome. The radiation will continue to kill off the cancer cells for a few more months. I asked him if he's sticking with his 4-10 months of life and that it will be the brain mets that takes Dave down. He said "Yes, due to past patients life expectancies in a similar situation." One day at a time.
12/12 Chemo. I decided to wean Dave off of Dexamethasone. His face is swollen and the Radiation Oncologist also suggested it. He was taking 4mg. a day, from today until Monday it's going to be 2mg until we see the Oncologist. Weight is up to 170. Hemoglobin is 8.3. Possible blood transfusion next week. He's feeling well. Just fatigued and tired of steroids.
12/17 Oncology appt. Hemo is 8.3. Weight is 170. Doc agreed with my decision to cut the Dexamethasone in half and just give Dave 2mg. per day instead of 4mg. MRI in 4 weeks to check progress of rads. Depending on results of MRI and next PSA we might change to Xtandi. For now we continue on the Taxotere.
12/18 Blood transfusion. 2 units.
12/19 Chemo. Hemo is 9.9. Weight is 168. Procrit injection. We are done with chemo until next year. We have no doctor visits until Dec 26th.
I thank you for following our journey this past year and for some of our dear friends the past 5 years. I hope you have learned along the way. I've heard from many people via private messages and I thank you for each of your emails and I continue to wish you all the best of health. Merry Christmas to each and every one of you.
12/26 Hemoglobin is 10.2
That's a nice way to ring in the new year. Wishing you all a happy and healthy 2013.
Dr. Carlos Alemany
A new year is upon us...
1/3 Chemo. Procrit. Weight 162. Hemo 10.1 and platelets doubled from last week to 121. There was a lot of cheering in the chemo dept. by the nurses. Rarely do they see platelets double within a week during Taxotere. The hemoglobin holding steady at 10 is great news also.
1/4 Oncology visit. Weight 166. We actually visited with our oncology assistant. She, along with Dave and I are pleased with his progress.
1/9 Chemo. Procrit. Weight 162. Hemo 9.1 and platelets are 92. PSA is 360. (Previous PSA was 718 in Nov. and 1167 in Oct.) Taxotere must be doing something right.
Dave's feeling and I quote, "not bad" ... Has fatigue, good appetite despite slight weight loss.
1/16 Chemo. Procrit injection. Weight 166. Hemoglobin 9.1 and platelets are 70.
1/17 Follow up MRI for Brain mets. Results on 1/23.
1/23 ONC visit. Weight 168. Results of MRI were "OK" as quoted by ONC. The dura seems to be thickening again, which our Rad Onc told us to expect. Activity within the brain has shrunk, which is good news. A Bone Scan is next on the list. Knee Surgery is out of the question. Dave has to deal with the pain and discomfort. With the brain issues the pain seems more tolerable. The plan is to continue with chemo. Xtandi is still on hold since PSA is lowering and he has no complaints. One day at a time...
1/30 Chemo. Procrit injection. Weight 169. Hemoglobin 9.4 and platelets are 85. PSA is 305. We like receiving good news!!
2/1 Bone Scan. Results to follow.
2/7 Results of bone scan are stable. There's been no additional mets or activity in 18 months. Hemoglobin is 10. We are now seven weeks with no blood transfusion needed.Platelets are 65. We are pleased with all results!
2/14 CBC (Complete Blood Count) Hemoglobin is 9.7 which makes this eight weeks since a blood transfusion! Great news! Platelets are 86.
2/15 Chemo. Procrit injection (since hemoglobin was under 10) This completes another cycle of Taxotere. It's been six months and this treatment seems to be working well. Next chemo is in two weeks. Oncology appt on 2/20. In the meanwhile we anticipate the birth of a new grandbaby! Lily is due any day now :)
Dave's Prostate Cancer Journey continues...
2/20/13 Oncology visit with Dr. Carlos Alemany. Dave's weight is 174 which is progress. His hemoglobin is holding steady at 9.7. Platelet count is up at 97. Testosterone is less than 2. We confirmed in person that the Bone Scan results are good with no activity in the past 18 months. The scan has actually improved from previous reports.
We discussed Dave trying Physical Therapy to help build up his muscle mass that he lost while taking Lupron. His mobility is limited due to his knee so time will tell if the therapy works or not. If only his upper body benefits that's better than nothing.
I was also curious if chemo patients had an odor. I have caught a whiff of a different type of smell since Taxotere began. I received confirmation that it does. It's not an offensive odor, but it sure isn't pleasant. Chemo excretes via the pores and bodily fluids. Supposedly, it's not dangerous to others.
Dave is going to continue with Taxotere since it seems to be working well. I asked Dr. Alemany why he administers Taxotere once a week for three weeks instead of once every three weeks. He has found that the body tolerates the drug better. Patients are receiving the same amount of medication, just spaced out to allow the body time to rest and adjust.
We had a good visit.
3/1 - Chemo. Procrit. PSA rose slightly to 312. Platelets are 89. Hemoglobin is 9.9. Weight is 172. Also on this day we were blessed with another granddaughter Lily Elle. Lily's older sister Faith is tickled pink to finally have a sibling. She is healthy with 10 fingers, 10 toes and huge brown eyes.
3/8 - Chemo. Hemoglobin is 10.6 Wow! The last time hemo was this high was almost a year ago. Platelets are 81. Weight is 174.
3/15 - Chemo. Hemoglobin is 10.3. Platelets are 101. Weight is 180. Very good! Dave's appetite is outstanding. He's feeling great. PSA rose once again to 369. Are we concerned? Yes, but remaining optimistic. To be discussed on Monday with Dr. Alemany. I haven't given a shout-out to Dr. A's Head Nurse yet. It's due. Shelley is awesome! She has so much patience for her patients! She's supportive, sincere and we'd be lost without her.
3/18 - Oncology visit went well. Weight is 183. Hemo is 10.3 and platelets are 122. Dr. A is very pleased with Dave's progress. He has decided to continue with Taxotere even though the PSA is rising. Re-check the PSA in 3 weeks. He requested a Brain MRI in early April. Restart Xgeva every 3 months. Dave has had blurry/dry eyes most likely due to Taxotere, so he'll continue to use Artificial Tears (over the counter). If PSA continues to rise we have a choice of Jevtana or Xtandi. We'll worry about that when or if the time comes.
3/19 - Physical Therapy. Today Dave was able to ride an exercise bike. Do stretches with the guidance of his therapist. A cold pack and electricity was placed on his knee for 10 minutes. He received at home exercises. We also had a walker delivered by our insurance company. Dave was able to take a short walk outdoors which was very nice.
3/28-3/29 - Labs and Chemo. Hemoglobin is 10.0 Platelets are 82 Weight is 184 and PSA is 387. Yes, PSA rose slightly once again. On May 28th we were blessed with yet another granddaughter. Emma Noelle was born. She joins her two year old twin sisters Lorelei and Mackenzie who absolutely adore her.
4/1 Brain MRI immediately followed by Physical Therapy for Dave's knee and muscle strength. He worked out hard and developed from swelling in his feet, but it's better now.
4/4 - 4/5 Hemoglobin is 9.8 Platelets are 77. Chemo treatment. We communicated with our oncologist and there will be a new game plan for treatment since the PSA is still rising. To be discussed on Monday.
4/8 - Oncology visit. Weight is 189. Hemoglobin is 10.4 and platelets are 116. These results are fantastic, yet PSA continues to slowly rise. MRI of brain was satisfactory. The brain is stable. Possible memory loss in the future due to radiation. According to our onc due to rising alkaline phosphate levels in the past 3 months, this is most likely an indicator that bone mets is slightly more active. Even though Taxotere has been a success Dave is now stopping it. The new game plan is Xtandi. Four pills a day. He is also being weaned off of Dexamethasone. No more steroids. Mostly due to eye irritation. We now close one chapter and begin another. We also discussed XL184 and Jevtana as additional treatments down the road.
4/9 Chest/Abdominal/Pelvic CT Scan. Results on 4/22. Also Dave's Short Term Disability ended. My advice to you is to purchase Long Term because one never knows when or if you might need it.
4/10 Xtandi treatment begins. 4 pills a day.
Dr. Carlos Alemany
First results after Xtandi
4/22 Oncology visit. Hemoglobin is 10.6 and platelets are 87k. Weight is 193. This is actually Dave's weight from one year ago. He's gained back all the weight he lost. His appetite is outstanding. His Alk Phos is 661. The reason this number is high could be for two reasons, one being the bone is remodeling itself or two, the cancer is infesting the bone. We are hoping for number one.
PSA is 146. It dropped 241 points since he began Xtandi, which was within 10 days. The reason most likely being is that he still has Taxotere in his system. The Xtandi and Taxotere together as a team kicked the PSA's butt. At least this is what Dr. A is suggesting. Either way that's a nice drop and we'll take it.
The CT Scan showed a couple of enlarged lymph nodes near the aorta and some fluid on the lower lobe of the right lung. Nothing to be concerned with for now.
Dave's energy is sluggish. In the past few days we noticed less pep in his step. This is most likely due to the weaning of Dexamethasone.
All in all this visit was a success. Next visit in 3 weeks.
4/25 Xgeva injection. Weight is 192.
The past few days Dave had edema. His feet, ankles and calves were swollen and he had what looked to be a red rash on his calves. No pain, not warm to the touch. I mentioned this issue to a few members of my online groups. Diuretics for 3 days was prescribed by his oncologist. This helped a bit. Compression socks were suggested by a member of a group. This seemed to work good. 12 hours on, 12 hours off. I also learned that edema is a common side effect of Xtandi. His appetite isn't as good as it was on Taxotere. He's also a bit sluggish. He lost some pep to his step.
5/6 and 5/9 Dave had two Physical Therapy appt's this week. Mike his therapist worked him hard. Dave claims the therapy is helping with his core and leg muscles, which in turn benefit his bum knee.
Physical Therapist - Mike Dodaro
Physical Therapy for Prostate Cancer and Knee Pain
5/10 Labs. Weight is 194. PSA continues to drop to 75. Hemoglobin is 10.1 and platelets are 88. Alkaline Phosphatase is lower. Xtandi seems to be working well at this point. Besides Dave being sluggish with his reflexes, walking via walker or cane, eating...he just seems to be in slow motion. I'm a very hyper, energetic person. So you could imagine how our days are :)
5/14 Oncology visit. Weight is 199. Obvious edema in legs. Continue with compression socks. 12 hours on and 12 hours off. Diuretics and potassium pills are also needed. Swelling of the legs could be due to Xtandi or low protein, doc isn't really sure, but everything else looks good. Numbers are good. Dave also received Dr. A's blessing to have knee replacement surgery. Now we need the blessing of the orthopedic surgeon. He had a chest xray today due to the slight fluid in his lungs via the CT Scan and he developed a dry cough in the past 3 weeks. The cough isn't too bad. I keep track of the coughing more than Dave does. Supposedly the chest xray should have been done after our last ONC visit, but they forgot to tell us that. Oops.
5/17 Chest Xray results were good. No new activity. Activity that was present previously is stable. Received a call from the ONC that Dave's calcium is low, so he needs to up his calcium pills to 3600 a day. Not sure why he didn't mention that at our visit on Tuesday since he was reading the lab results while we were all in the same room. Oops.
5/28 Physical Therapy. We also had a consultation with our Orthopedic Surgeon for knee replacement surgery. He also gave Dave a go ahead. Surgery is set for July 15th. Am I nervous? Heck yes! Dave's excited, yet cautious. He still has to get an OK from a cardiologist. Labs and PSA must remain stable or else the surgery is off. He also must get approval from insurance. As we all know nothing in life comes easy. In the meanwhile Dave is doing well. Very sluggish since he's been on Xtandi and no longer taking Dexamethasone. His appetite is good. He still has edema, but it's not as severe.
5/30 We had labs done today which were very good. Hemoglobin in 10.2 Platelets are 119.
6/4 Physical Therapy we also went for a consultation with the cardiologist for his "thumbs up" for knee replacement surgery. So far Dave's ticker is ticking like a Timex.
6/5 Physical Therapy.
6/7 MRI for Knee Surgery. This is needed so the hardware could be accurately made for Dave's new bionic knee.
6/10 Physical Therapy seems to be going well for Dave. He has developed strength in his core and legs.
Journey to Knee Replacement Surgery
6/11 Back to the Cardiologist for a Chemical Stress Test since Dave obviously can't do the traditional Treadmill Test.
6/12 Part 2 of the Chemical Stress Test went well. We now await results.
6/13 Back to Florida Hospital East since Dave's knee MRI scans were blurry. He had to have a CT Scan done. We also had labs drawn. Good news! PSA is down to 67. Hemoglobin remains steady at 10.2. Platelets are up to 138. Alkaline Phosphatase is lower at 421. Calcium is up since he began taking 3600 mgs four weeks ago. So far so good with knee replacement surgery.
6/14 Cardiologist is slightly concerned with Dave's coronary arteries so he is scheduled for a CCTA Scan of his arteries on 6/27. On the flip side we checked his weight today and he's at 195 lbs. Yay weight is steady. His appetite isn't great so I thought his weight would be less. Also the edema in his feet is getting better and he stopped the Lasix a couple of weeks ago. He continues to keep his feet elevated when possible.
6/18 Oncology appt. Weight is 197 lbs. We discussed lab results...good thing I brought a copy with me which was readily available. All is going well. It was a short and sweet visit. Dr. A wished Dave good luck with his knee surgery and we will see him again on 7/30.
If it's not one thing it's another...
6/25 I celebrated my 50th Birthday! We forgot about cancer for a few days (I don't believe in one day birthday celebrations) and had a good time!
6/26 Physical Therapy - Dave's therapy went smoothly today. Maybe it's because he's been doing more exercise at home or it's his awesome therapist Mike at Florida East Rehab Center. I'm going to say it's a mixture of both.
6/27 Today we were scheduled for a CCTA Scan.
(Excuse my meltdown) A scan of Dave's coronary arteries because his Stress Test came back abnormal, which is common. His heart rate is too fast. I made sure he followed prep directions to a T. I was up at 4:00 a.m. to make sure we arrived on time at 7:00. Everything went smoothly UNTIL the third hour of medications were administered and they still couldn't get his heart rate lowered. We are now scheduled for another CCTA Scan at another hospital (Celebration Hospital) on next week because they have a larger machine that could take clear images even if they heart rate stays in the 90's.
During my frustration I realized that there is no doubt that cancer sucks. But, at times cancer has nothing on a bad knee. If it wasn't for his knee that was weakened due to treatments he would have been able to return to work. He would be mobile and not needing a cane, wheelchair, walker, physical therapy or surgery. His life and mine would be a bit less stressful. Yes, cancer caused his knee to deteriorate. Yes, because of cancer he couldn't have surgery sooner. But, now he can since his cancer is stable. Due to the surgery a clearance was needed by a cardiologist and an MRI. Between the Orthopedic surgeon, Cardiologist and MRI so far we've been to 8 medical visits because one thing or another wasn't up to par. And we aren't done yet. More visits coming up. So once again I need to reschedule and juggle medical appointments for next week due to crappy cancer and a dysfunctional knee.
So as I was driving home I thought about Cancer vs Bum Knee and I truly want to kick that bum knee to the curb. My meltdown is over. I feel better.
6/28 Xgeva Injection at Florida East Oncology Center
7/2 Another successful Physical Therapy session with Mike. The muscles surrounding Dave's knee are strengthening with each PT visit. Thanks to Mike and Sunshine as his trainers. Mike is much nicer than Sunshine.
7/3 Today we spent the morning at a Total Joint Replacement Preoperative Education class. Even though we don't quite yet have cardiac clearance since the CCTA Scan was now moved to July 8th we are still proceeding ahead for knee replacement surgery. The class was held at Florida East, actually by a longtime friend of mine, Sher Bent. It was very informative and we along with the other patients who attended feel more at ease now about our upcoming surgeries. If you should ever need joint replacement and are offered this class, make the time to attend.
7/8 Repeat CCTA at Celebration Hospital. We further realized that Dave indeed has a faster than average heart beat. It took two hours of medications, but the tech was finally able to get the test done. We now await results.
CT Scanner at Celebration Hospital in Orlando, Florida
The road to knee replacement surgery...
7/9 Had an appointment with an ENT today. Dave's ear had become an issue recently. He was once again having blockage in his left ear. We discovered that the tube that Dr. Harrington had placed in Dave's ear had shifted. He's all better now! Yay! I know how uncomfortable and annoying it could be having a clogged ear. I highly recommend Dr. Harrington at Orlando Ear, Nose and Throat.
We also had Physical Therapy with Mike. Dave had his re-evaluation and he passed! Yay!
Dave also received his cardiac clearance from Dr. Harris. The CCTA revealed moderate to mild blockage in one artery. An 81mg aspirin has now been added to Dave's list of meds. Also his Lipitor has been doubled. Yay for cardiac clearance!
7/10 Today we visited with Dr. McFadden, the Orthopedic Surgeon. The visit didn't start off well since the staff triple booked appointments, but it ended well. We had some questions regarding surgery answered. Most importantly I asked the doc if he felt comfortable operating on Dave due to his health condition. He said, "Yes." I said, "Good answer!" We then went to Florida East to preregister for surgery. An xray was also needed. While there we had a CBC done. Fantastic results! Hemoglobin is 11.4 and Platelets are 170. Next up is knee replacement surgery. Yay!
7/18 Dave's surgery on 7/15 was a success. He now has a brand new titanium knee! He received raving reviews from his nurses and physical therapist. He broke post-surgery records with how quickly he was walking after surgery. Cap, along with Couch Sunshine did so well we were released 24 hours earlier then usual. So we only spent two nights at Florida East. We were on a mission for a new knee. He got it. We are now home and Dave is recooperating well. He does have pain. He also has a collection of meds to help him along with his recovery. His hemoglobin dropped to 8.6, platelets dropped to 153 and hematocrit dropped to 27. A new challenge for me to bring those numbers back up! We had a traveling nurse here today and she gave his progress a "thumbs up!" A shout-out to my daughters and granddaughters who cast their sunshine before, during and after our stint in the hospital to make our transition a bit better. Thank you for all the well wishes, thoughts and prayers. They are appreciated, as are you!
7/22 ... For updates on Cap's Total Knee Replacement Surgery, just click this link. Total Knee.
From Knee Replacement we go back to fighting cancer...
7/18 Today we had a traveling nurse and physical therapist visit with Dave. They were both very impressed with his progress so soon after knee replacement surgery! Go Cap!
7/25 As Dave continues to heal from his total knee replacement, we continue with our battle against the beast. Today we had labs. PSA is up from 67 to 134. Not good news at all. Xtandi worked great for 3 months. We will find out on 7/30 what our next move is. Hgb is still low since surgery at 8.9 so a Procrit injection was administered.
7/26 During pre-op for knee surgery a nurse had asked when the last time Dave's chemo port had been accessed. We said about 3-4 months, not since his last Taxotere treatment. We were informed that a port should be flushed monthly so that when it's needed it will be functionable. No one ever informed us of this. So today we went to have Dave's port flushed at Florida Cancer Institute. It fired right up. Hopefully he won't need it soon, but if he does, it's good to go.
7/29 We had a successful visit with Dr. Alemany. Dave will continue with his Xtandi treatment for another month. We aren't going to allow a PSA rise to interfere with his rehab from Total Knee Replacement. His hgb is 9.9, hct is 30.4 and platelets are 246. His Alkaline Phosphatase is lower. All of this is good news. Dave will have a Brain MRI in 3 weeks to check if there is any new activity there. PSA check in 4 weeks. In the meanwhile he will continue to recover so he could be more mobile. We appreciate Dr. Alemany's positive outlook and attitude. We make a great team.
8/13 Follow up Brain MRI. No new activity. All is stable.
8/26 Dave and Coach Sunshine have been busy with Physical Therapy for his knee replacement for the past few weeks. All is going well. Dave is walking without any aid, but we still use the wheelchair when out and about because he tires easily and walks a bit too slow and can't seem to keep up with me. Today we had a PSA check...good news! PSA is down 10 points to 124. Hgb is 10.9. Labs were all good. We can't complain! :)
8/28 Oncology visit. All went well. Dave is staying on Xtandi and Dr. A has a few more tricks under his sleeve in case Xtandi stops working. We got the go ahead for Dave to have cataract surgery. We found out last week that he has two cataracts in one eye. One of them were caused by chemo. The eye doctor was sure of this.
9/10 Today Dave graduated Outpatient Physical Therapy for his knee. He actually finished ahead of his class :) in 5 weeks instead of 8 as ordered by his Orthopedic Surgeon. He was also released from his Orthopedic Surgeon with a follow up visit in one year. Great news! We also went to meet with an Opthamologist for cataract surgery. We found out via this visit that the cataracts in BOTH eyes were brought upon by Prednisone. In other words the pill from hell.
9/11 Labs - Hgb 11.8 / Hematocrit 36.2 / Platelets 222 / Weight 190
Prostate Cancer journey continues...
9/25 Dave had cataract surgery today for his right eye. He has cataracts in both eyes, but his right eye was in worse condition. Surgery went well. He could now see more clearly.
9/26 PSA is now 176. We have now discovered, yet not confirmed that surgery does compromise the immune system and will most likely increase the PSA. Surgery does possibly allow the cancer to take control again. This could continue for 6 weeks and then PSA will hopefully drop again. This is a guessing game. No one could confirm this. I'm basing my information on what we've heard from the oncologist. What I've read from first hand stories in cancer groups. We just don't know. Dave is feeling good. He has an appetite. He's able to walk more freely now due to his bionic knee. We just might put off having cataract surgery on his left eye.
10/1 PSA is now 207. We also discovered today that his testosterone level hasn't been checked in 6 months. Not good! Someone neglected to order that important test. Dave's testosterone is 25.39...up from < 2.0 in February. How frustrating. We reminded our Onc that he recommended Eligard be stopped 11 months ago because the testosterone was suppressed. Except he didn't request the levels be checked. I didn't either. I should have requested the test. I didn't. It's not my responsibility. Anyway tomorrow we have a CT Scan and Bone Scan planned. A Lupron injection on 10/4. PSA test on Monday and a follow up visit with our Onc on Tuesday.
10/8 PSA is now 210 and testosterone is 46.42. We had our oncology visit. Dr. A apologized for not keeping track of Hormone Therapy since he suggested that Dave take a rest. He received his last injection in June of 2012 (6 month injection). Testosterone is normally checked every 6 months while on HT, every month without. Dr. A assumed he was still on HT. We gave Dr. A the benefit of the doubt since the Urologist administered HT. One of the three of us should have caught on quicker that the testosterone was being neglected. Dave is going to continue with Xtandi and have labs again in 3 weeks. Visit with Onc in 4 weeks. Bone and CT Scans were actually better than the last ones. No new activity. Dave feels good. His weight is at 194.
11/9 PSA is now 320. Testosterone is less than 2. Dave has no pain. No symptoms to guide us as to why his PSA is rising. The oncologist ordered a repeat CT Scan and Brain MRI to be performed in 3-4 weeks. He'll continue with Xtandi since labs are all great. We, along with the oncologist are baffled.
Dave (Cap) continues to kick Prostate Cancer to the curb...
Nov 25 - Today Dave had the Brain MRI and abdominal CT Scan. PSA is up to 414. At least it hasn't doubled or tripled. We are thinking positive. All other labs are very good. Hemoglobin is 13.1 and Platelets are 175. Now we await the results of the scans. Dave is doing well. He has no pain, with the exception of aches and pains that we all encounter. His appetite is good. He is loving life.
I don't think I mentioned this lately, but we are so thankful for Florida East Hospital in Orlando. Literally everyone who we encounter for one reason or another has made our stressful journey much more pleasant to deal with. We laugh, chat, hug and cheer each other on. This is our hospital of choice for labs, scans and surgeries.
12/4 We received a phone call from the Onc. It seems that the cancer has spread to the liver. The brain MRI was good. New game plan coming up soon. Xtandi has come to an end.
12/9 Oncology visit which by the way was very dysfunctional. They are going to a computer system and nothing was going right. We did finally find out the new game plan which was just as we thought...Jevtana chemo, every 3 weeks. Followed by a dose of Neulasta to boost the white blood cells. This chemo should help clear up the liver mets. Dr A isn't concerned as much about the liver mets since it's two small spots. There are some lymph nodes affected in the pelvic area which should also be cleared up with Jevtana. We continue to await XL184 to be approved for Prostate Cancer in the meanwhile. Dave's weight is 194 and he's doing very well. Wish us luck for the next part of our journey.
12/11 First Jevtana infusion went smoothly. Along with chemo, pre-meds were given via IV. Benadryl, steroids and anti-nausea meds.
12/12 First Neulasta injection. So far the only side effect has been aching legs. 2 Tylenols took care of the issue. Weight is 198.
12/15 We celebrated Dave's 63rd birthday today. He had a wonderful day and is feeling fine.
Happy New Year - 2014
Dave and I are now entering our 7th year in our battle with Prostate Cancer. It continues to be one heck of a ride.
In October 2012, according to statistics, Dave was given 4-6 months to live due to brain mets.Obviously the doctor was wrong. He didn't intend to mislead us. He shared with us what was common among his patients. Yet, there were treatments that helped Dave to keep up the fight.
I am amazed at the new cancer treatments that become available at alarming rates. I'm also shocked at their hefty price tags also. It would be much better if they just develop a cure. Possibly a vaccine that could wipe out cancer altogether. I'm wishful thinking.
We continue to carry on our fight as a team into the new year. Who knows what 2014 will bring? No one does, which is why we take it "one day at a time."
Jevtana Chemo Treatment
1/2 Cap had Chemo #2 today. The treatment went smoothly. Weight is 197. His appetite is well. He likes his food! Hemoglobin is 10.9 which is awesome! Platelets are a bit low at 111, but that's common with chemo treatments. Hopefully they will pick up again soon. WBC are excellent. He does have some fatigue, which again is common.
1/3 Neulasta injection and Xgeva
1/9 Latest lab results are in: PSA is 563. Up from 414 on Nov. 25th. Dave's had 2 Jevtana treatments so far. I know Jevtana works slowly, but we didn't expect a huge rise. Anyway, we see the Onc on the 16th. I'm guessing it's the liver that's causing the issue. All other labs are good. WBC is a bit high, again I'm guessing it's due to Neulasta.
1/16 Onc Visit. Weight is 194. Dave is feeling good. He is experiencing some weakness in his legs which is most likely from his Lupron treatment. Dr. A "thinks" that the PSA rise could be from a Jevtana flare OR due to his Alkaline Phosphatase number being higher, the rise could be from bone mets activity again. We aren't sure which. His liver functions are stable so he highly doubts that the liver lesion is causing problems and he thinks that Jevtana took care of that. We go forward with one more Jevtana treatment. Then a Bone Scan and CT Scan (w/o contrast due to a rise in kidney lab results which is most likely due to Dave not consuming as much water as he normally does because he favors coffee and iced tea). Followed by a PSA check and a visit with the Onc on Feb. 7th.
1/23 Jevtana Chemo #3 along with a saline hydration (2 liters of IV saline solution) requested by Dr. A due to his previous lab results with a Creatinine level that was a tad elevated. A Lupron injection was also administered. Hemoglobin is 10.3 and platelets are 104.
1/24 Neulasta for WBC
2/3 Today Cap had his Bone and CT scans along with labs. We did learn something new today. There are two types of contrast used for the CT scan. The IV contrast is excreted via the urine and the oral contrast is mostly excreted via the stool. The reason I mention this is because Dave's oncologist didn't want him to have contrast with his CT scan, but he didn't specify which contrast, so we did no contrast at all. The scans were clear and revealed that there are/were actually 3 lesions on his liver. I say were because it looks like Jevtana killed those lesions. Which is great news! There does seem to be an issue with the kidney. Oncologist says it's not a stone. Next stop is back to the Urologist for him to check it out. PSA went down to 553 from 563. Which is a good sign. Bone scan revealed additional mets. Dave is not in bone pain, which is very good. The plan as of now is to continue with Jevtana and recheck the PSA.
If the PSA doesn't drop anymore chances are Cap will move on to Xofigo and DES. I've heard many stories about both of these drugs that frightened me. Dr. A relaxed our worries a bit. Xofigo is not the end of the road. Many men are on this drug and lead productive lives. Xofigo (Radium223) is radiation injection performed by a radiation oncologist. The drug mimics calcium and helps to build up the bone and marrow. DES (diethylstilbestrol) is a hormone treatment administered via a daily pill that's been around for many years. It did cause heart issues and pulmonary embolisms in the past, because the dosage was too high. The doctors have learned from trial and error. Unfortunately patients lost their lives while the oncologists were learning, but how else could the medical field advance without trial and error. Let's just hope for more trial.
2/13 Chemo #4. Hemoglobin was 9.5, so Dave received a Procrit injection to help boost this hemo back up. Before a Procrit injection is given the patient needs to have an Iron Panel done. There's a certain ratio the iron levels have to be, in order to be eligible for this drug. The oncologist ordered another hydration due to kidney levels being high. Hopefully once we see the Urologist on Tuesday we will finally clear up the kidney issues with a simple fix. There are such things as simple fixes, right? The hydration, which is a saline solution IV drip takes about 2 hours extra. We have another hydration scheduled for next Friday. Weekly, if needed. All other labs were good. Dave is doing well. Weight continues to be steady at 194. He has a healthy appetite. We enjoy being outdoors and soaking up the beautiful Florida sunshine.
2/14 Today was the usual, day after, Neulasta injection. Quick visit. Long enough to wish all the amazing nurses at Florida East Cancer Institute a Happy Valentine's Day.
2/21 Today was a quick visit to the Florida East Cancer Institute for an Xgeva injection. While we were there Dave had a CBC (complete blood count) and since his Hemoglobin was 9.9 he was given a Procrit injection to help boost his RBC (Red Blood Count). All other labs were good.
2/25 CT Scan of Uretha and Kidney due to slightly elevated creatinine level.
2/26 Results of CT Scan: Most likely it's a lymph node, due to PCa, that is compressing on the uretha. Dave has no symptoms, which is good. His kidneys are fine and not enlarged any longer, especially his left one. He could have a stent placed, but decided to wait on that. For the first time his spleen was a bit enlarged. Urologist had no answer as to why.
2/27 PSA is now 507, down from 553.
3/3 Oncology appointment. Weight is steady at 195. Hemo is 10.7. New game plan for chemo due to CT Scan ordered by the Urologist revealed another lesion on the liver. Obviously Jevtana is not working. Oncologist had no answer as to why his spleen is a bit enlarged. Dave was not prescribed steroids along with Jevtana, except for Decadron with chemo infusion. Oncologist said steroids weren't needed. The new chemo will be Carboplatin/Paclitaxel. Again no steroids were prescribed, except for the Decadron. I suggested Taxotere again because it worked so well, but Dr. A doesn't go backwards with treatments. Also, Taxol/Carbol is less toxic than Taxotere/Carbol. Yet, Taxol/Carbol has a side effect of Neuropathy which is a tingling of the fingers and toes, which at times could linger for months. On the flip side it looks like XL184 will be approved by May.
3/6 Dave had his first Taxol/Carbo infusion today. It went well. our Oncologist said it would be a 4 hour visit. I told him 5 because that's what scheduling had told me. Again, he said, 4. He was wrong. It was 6. Actually should have been 5, but the chemo nurse wasn't feeling up to par. Labs are usually done first, but since Dave just had labs on Monday, they weren't needed. He had 40 minutes of pre-meds...Zofran for nausea, Decadron for steroids to help aid against side effects, Pepcid for nausea and Benadryl just in case of an allergic reaction. The Taxol took 3 hours. The Carbo took one hour. Due to the "Steroid Buzz" Dave didn't sleep well and he's been a very, funny guy!
3/7 As recommended we went back 24 hours later for Neulasta. He also had a one hour hydration along with a dose of Decadron and Zofran. Cap is doing great!
3/25 So far, Dave is doing so good on Taxol/Carbo. PSA is 471. Down from 507. We are thankful for any drop in PSA we get. Labs are good. WBC, RBC are a bit low. Platetets are up. Hemoglobin is 9.4. We did go to the infusion center each Thursday for labs. Last week (3/20) his hemoglobin dropped to 9.9 so he received a Procrit injection.
3/27 Taxol/Carbo treatment #2. All went smoothly. Today's visit took 5 hours.
3/28 Today was our oncology visit. Dr. A is pleased with the progress Dave is making with his new chemo cocktail. We then proceeded to Florida East Infusion Center for Part 2 of Chemo. He had his hemoglobin checked again and it's now 8.9. Procrit was given. Along with a Neulasta shot for WBC, which seem to be doing well. Cap also had a one hour hydration.
4/4 Hemoglobin is up to 9.1 which is good news! We are dreading having to go through blood transfusions again. The transfusions were beneficial, but we prefer to avoid them when we are able to. Procrit and Neulasta injections were given. The remodeling to the Florida East Infusion Center is almost complete. Yay!
4/17 As Dave and I continue with our cancer journey, we often encounter other cancer fighters and their families. One thing that we all have in common, besides the fight, is we all haven't lost our sense of humor. We continue to remain positive and to always remember to find laughter in each and every day. Laughter is TRULY the best medicine. Today was Chemo #3 with Taxel/Carbo. Hemo was down 8.6, which is common. Taxol was reduced to 2 hours which went well. The infusion center is completed! It's spacious and very comfortable. The good news is the patients no longer have to be alone, there is a chair for one guest. Yay!
4/18 Today was a one hour hydration, along with Zofran and Decadron. Xgeva, Procrit and Neulasta injections were also given. Happy Easter weekend to all.
4/25 PSA rose to 473 from 471. We would have preferred a lower count, but we are thankful the rise was just a small bump. We never thought that numbers would control our lives so much. In the beginning of our journey PSA counts would make us a nervous wreck. Such an emotional roller coaster. As time went on, we began to realize that no matter how much we worry, the count would still be what it is. Now, instead of stressing out, we just say, "it is what it is" and hope for the best. We no longer allow numbers to control us. Labs were good, they could have been better, but hemoglobin is staying steady in the 8.8 range, Procrit was given. We carry on...
4/30 Today was Dave's monthly oncology visit. Dr. Carlos Alemany is pleased with the progress Dave is making. Even though the PSA is 473, he will continue with Carbo/Taxel.
5/8 Chemo #4. All went well.
5/29 Chemo #5. PSA is down to 328. Creatinine levels are back to normal. This tells us that Carbo/Taxel is doing some good. On the flip side, blood counts are low. Which as we all know is normal during chemo treatments. Cap is doing well. He feels good and is always thankful for another day. I'm thankful to be part of his team.
6/4 Oncology visit. Since Dave is doing well, we basically just chatted. We did find out there is a new standard to how Prostate Cancer will be treated in the beginning stages and I totally approve. I could get into the "if only" stuff, but I won't. It is what it is in Dave's case. We also found out that recommendations for Provenge will be a bit more strict...meaning, men with a low PSA and no metastatic disease will be referred to a Provenge Treatment. This makes total sense to me. The majority of men that I have been in contact with and have had Provenge and Mets, the treatment did NOT work. But they had hope. The men needed something to believe in. Never give up hope!
June 4, 2014 ... New recommendations for Prostate Cancer
- ASCO: A 'Home Run' in Prostate Cancer Tx
CHICAGO -- Overall survival in metastatic prostate cancer improved by more than a year when patients received docetaxel at the start of androgen deprivation therapy, according to trial results that on
6/12 Hemoglobin is low at 8.1 so Dave was administered another Procrit injection. This is becoming a Friday ritual, it would be nice if his hemoglobin began to rise again. Xgeva was also given, he gets this injection every other month. So many men are having dental issues and it seems like Xgeva could be the culprit. This medication plays havoc on the calcium in the bones.
6/17 PSA rose to 354. Hemoglobin is at an all time low of 7.8. Hematocrit is also low at 23.3. I contacted the Oncologist and he gave Dave clearance for chemo. He did say that if Dave should begin to feel like he needs a transfusion that he would set one up. "OK, Doc, I'll keep you posted on whether or not Dave needs one, since I am now, supposedly qualified to diagnose potential heart failure due to low hemo and hematocrit." Excuse my attitude, but I'm going through a burn-out stage. You know, when you are mentally and physically exhausted and feel like things are out of your control and you place your worries in the hands of a higher being. Yep, that's where I am, now. I also found out today that on June 4th, the Onc's office checked Dave's PSA...really? No one told us...until today. PSA was 408...Huh? In May it was 328, then 408, now it's 354. PSA seems to be having some issues of it's own.
6/19 Chemo #6 went smoothly. The steroid buzz, once again, kept him awake most of the night.
6/20 We returned for the follow-up Hydration of 500ml of Saline Solution, along with Procrit due to low hemoglobin and Neulasta to boost the white blood cells. Dave's blood pressure was a bit low today at 94/55 and his cheeks were a bit rosy, but after the treatment he began to feel better.
7/1 Oncology visit update...PSA is now 329. Dave is officially on chemo break. During the break he'll be taking DES, a hormone therapy pill, along with continuing with Lupron...the reason for the DES pill is that Lupron needs back up to keep the cancer cells from multiplying during this short hiatus. In a couple of weeks he'll need labs, CT Scans and a Bone Scan...we will then meet with our Radiation Oncologist to see if Dave qualifies for Xofigo. If he has organ mets, then that treatment is a no-go. If this happens, and his blood has recovered from chemo, he could then go back to Carbo/Taxol or try another two treatments that Dr. A has up his magical sleeve. It's not looking good for XL184 being approved at this time. Too many complications. Hemoglobin is still low at 7.9, but Dave wants to hold off on a blood transfusion because he feels good.
7/3 Dave began DES treatment. This is a compound medication that's found at specialty pharmacies only.
7/7 Hemoglobin is 7.5 ... We found out today that there are new guidelines for blood transfusions. It used to be that if hemoglobin was bordering around 8.0 a transfusion was warranted. Now protocol is for 7.0. What's the reasoning? So that patients do not build up antibodies in which case their bodies would reject new blood. Now this is not set in stone...it all depends on the health of the patient. If a patient is tired, sleeping too much, short of breath or dizzy of course they would be transfused. Dave is feeling fine. We will recheck the hemo next week.
7/14 Hemoglobin is 8.3, which is great news! We did not want to travel the blood transfusion route again.
7/18 PSA is 215, down from 329 after two weeks on DES. Yay! He had a CT and Bone Scan done. Some minor issues, but the reports seem good to us. We'll know more when we see the Onc.
7/22 Today we met with the Radiation Oncologist to discuss starting the next chapter of our journey. Xofigo is Dave's next option. There is protocol that must be met before treatment could begin. Most importantly are labs. The hemoglobin and platelets must be at a certain level. Hemoglobin is good at 8.6. Platelets are below 100k which they must be above to begin treatment. Xofigo is a radioactive injection. It's calcium to the bones to kill off cancer cells. It's given once every 3-4 weeks about 4-6 times. Labs are checked in between. The number of injections and the time in between each all depends on the lab count. If labs begin to dip, we wait until they rise again. In the meanwhile Dave continues to take DES and Lupron. Dave is doing well. His weight is steady at 196. He has no pain. He has some fatigue which is common with DES and Lupron. One thing cancer has taught us is patience, because even though we would prefer to have the upper hand, we don't, cancer does, but with patience we are still in the game and have a chance of winning. No one likes to lose, but at least we gave it our best shot.
7/28 Hemo is 8.6 and platelets are 75. We will try again next week.
8/4 Hemo is 9.9 and platelets are 91. We were so close, but still a no-go to begin Xofigo. During the last week I made sure Dave drank plenty of extra water which helps the body produce more blood cells. I'm thinking this simple task helped boost his blood count.
8/7 Monthly oncology visit went smoothly. We requested a CBC and PSA. Platelets are up to 135K, that's amazing in only 2 days. PSA is 189, which is also good news. Hopefully Dave can begin the Xofigo treatment next week. We have another CBC on Monday. I have noticed that since he began the DES treatment, he has been a bit more sluggish and his vision isn't up to par...not sure if these are side effects of DES, but I do intend to find out soon.
8/19 Hemoglobin is finally above 10 again. It's 10.5, so a Procrit injection was not needed. Great news. Unfortunately the platelets do not want to behave accordingly. They are still too low for Xofigo to begin. Chances are they will probably never be in the range required via proper protocol. Today we met with Doc Sombeck, which as always was educational and entertaining. If all doctors had his bedside manner, going to a physician would not be as bad. Anyway, back to the main topic...it looks like Dave will be trying a different treatment, which is similar to Xofigo, but it's only one injection and not six. It's an old school treatment. It's also $60,000 cheaper than Xofigo. It's called Quadramet. I'll keep you posted.
8/20 Today was a sad day. Our Team lost a good friend. Dave Dazell lost his 5.5 year Prostate Cancer battle. He will be missed by many.
8/22 Quadramet didn't work out this week. You know what they say about too many cooks in the kitchen? Yep, that happened, except nothing was spoiled, just delayed. The Oncologist requested a CBC differential test to see if the platelets were clumping and causing the platelet count to be low. He prefers Xofigo. In order to do this I had to cancel the order for Quadramet and in turn, I think annoyed the Radiation Oncologist. I don't blame him for being annoyed. But, if these two doctors who work in the same hospital, for the same cancer center, only a couple of floors apart...would just pick up the phone to discuss Dave's treatment this wouldn't have happened. It's called Teamwork, Docs! Get with the program. I should not have to be the middleman and be the bad guy who pisses people off, because in turn, I get pissed off. I am a good guy, I prefer to stay that way. In a nutshell, the test came back as not clumping. Proceed with Xofigo since the platelets are 109K - according to message from Onc. Message also said that both the Onc and Rad Onc communicated...YES...via phone! Great news! I call the Rad Onc to schedule an appt for next week. "He's off today, we will call you on Monday." We shall see what happens on Monday when we go for Dave's weekly CBC. Hopefully the platelets will still be above 100. I give up...I need a break from all the cancer drama. Happy Weekend. (I apologize for the rant).
8/28 Xofigo Treatment has finally begun...If you would like to follow our extended journey, the link is below.
9/8 PSA is 187, same as last month. Dave had Xrays done due to pain in his shoulder. Results show metastatic disease. No surprise there. Hemo and platelets are holding steady 10.9 and 99.
9/10 Today was our annual eye exam. Just as we do each year, we have our eyes checked. No big deal, right? Wrong. Not with sneaky cancer looming in the background. The optometrist spotted something suspicious behind Dave's right eye. His optic nerve looked swollen. She panicked. We didn't. I think we are panicked out. We got irritated. She set up an appointment with an Ophthalmologist.
9/12 We went to see the Ophthalmologist who specializes in the optic nerve. He was kind enough to fit us into his busy schedule. Once I mentioned Dave's history of brain mets and that he had radiation of the brain two years ago, he sent us for an MRI. We went to have the MRI after we left his office. Results coming up next week. In the meanwhile we are reconsidering keeping up with annual visits of any body part since we don't like surprises. Kidding!
9/16 Teamwork! The Ophthalmologist, Oncologist and Radiologist combined their thinking skills and came up with, we aren't sure what's going on with the Optic Nerve or if anything is going on at all. The brain is stable. No sign of cancer. Dave is having no symptoms. Next up is a consult with a Neuro Oncologist for a possible spinal tap to check the spinal fluid for possible mets. This appt is set for Sept. 25th. The same day at Xofigo #2.
9/25 Xofigo #2 is complete. Cap is glowing. Kinda. We are both sad that our Radiation Oncologist, Dr. Sombeck, that we've had since 2008 won't be there for #3, etc. He's leaving due to hospital politics. The Neuro Onc visit went well. He along with the Radiation Oncologist are pleased with the MRI results. No mets. They are assuming the issue is from possible mini strokes. Not to worry since there are no symptoms. If symptoms do begin, then he'll do a spinal tap. For now he wants a Carotid Ultrasound in 2 weeks. A brain MRI in 2 months and see him again in 2 months.
9/29 Weight is 191. Blood pressure is 107/62. Dave's BP has been running low for the past few months. We mentioned this to our Family Doctor. She suggested he take 1/2 a 25mg of Metoprolol a day instead of the usual 25mg. So far, so good! Great idea, doc!
10/1 Oncology visit. Since Dave has been having dental issues, such as two teeth literally falling out, the Onc suggested he take a 3 month break from Xgeva. Xgeva has it's pluses and it's minuses, such as it causes dental issues. Dave was also put on 30 days of antibiotics for a gum infection due to, Xgeva. I recently read that Xgeva stays in the body for up 12 years, not sure how factual that is, but if so, that's one powerful drug.
10/2 Cartoid Ultrasound. This test is short and simple. No prep is needed and it took about 10 minutes. Results were good. No sign of stenosis, which is hardening of the arteries that lead to the brain. We still don't have an answer about the mysterious "swollen optic nerve" but we don't know if we ever will have an answer. Our Family Doc told us about a patient who had a similar journey, he didn't have cancer, but not even Mayo Clinic could figure out what was causing the issue.
10/6 Labs. Hemo is 10.8, holding steady. Weight is 188. Cap needs to eat a bit more, but since his gum infection, eating isn't easy. Then he has to drink more protein. Our nurse suggested upping his calcium pills to 2400 mgs while he is on break from Xgeva. Good idea! Hmmm, wonder why the Onc didn't suggest it.
10/27 Labs are holding steady. Hemo is 10.8. Last week Dave should have had Xofigo #3, but due to the worldwide shortage because of a botched batch in the manufacturing plant in Norway, there is no Xofigo available. We continue to await Bayer to produce the treatment once again. According to studies, men could take an 8 week break...Dave is on week #5. We recently passed the 2 year mark since Dave was diagnosed with Brain Mets. His prognosis was just a few months...2 years ago. Amen.
11/6 Xofigo is back! #3 was administered today. 3 more to go. PSA is up to 334. Ugh. Weight is steady. Labs are good. Dave is feeling fine! Yay! Had our monthly oncology visit. Reduced the calcium intake to 1200. Not concerned with PSA since Xofigo was delayed. Weight is steady.
11/11 Today Dave had his Brain MRI which was ordered by the Neuro Onc, two months ago, due to the possible swelling of the optic nerve, or whatever they thought they seen...no one has figured it out yet. Reports show more decreases than increases...for that we are thankful. Follow ups are recommended.
11/13 Follow up with the Oral Surgeon. The extraction site is healing. Dentures are a no-go since the jaw and gums are just not healthy enough due to Xgeva. The doc also suggested never to use Xgeva again and to take antibiotics for one year. The oncologist has the final call.
11/14 The Oncologist called. No cancer in the brain. Yay! His concern is vascular, the blood vessels. He wants Dave to start taking baby aspirin, I told him he has been BUT I forgot to add it to the med list for the doc. Ooops. Excessive white matter is present which we knew was a side effect of the radiation, this means he will become more forgetful. We might or might not keep the appt with the Neuro Onc next week now. We will make that decision next week. He also said antibiotics for 3 months and then see the Oral Surgeon again.
11/17 We went for labs today and Dave's BP was abnormally low at 91/54 and his heart rate was 85. He also seemed a bit flush, we thought it was the cooler temps in Florida until the CBC results were done... Hemoglobin is down for the first time in a while. 9.8 and a Procrit injection was administered.
12/1 Hemoglobin is back over 10...Yay! PSA is 400...Boo! It was 334 last month. Dr Alemany ordered CT Scans of the chest/abs/pelvis to see if there is anything going on with the organs. Dave is feeling good. Xofigo #4 is this Thursday.
Ketoconazole and Prednisone
12/11 Oncology visit today. A well informed and a few tweaks kind of visit. There is mild progession of the disease. Ya think? First off, the scans were good. Lung mets and liver mets are stable, but trying to get noticed. The kidneys are the issue now. The lymph node that was causing problems last January is back in action. It's pressing on the ureter which could damage the kidneys, so a consult with the Urologist is in order. Most likely a stent will need to be placed while under anesthesia, of course!
DES has run it's course which is the reason for the PSA rise, along with the lymph node, and premature activity in the liver again. DES served it's purpose for a while,but we bid it farewell. The new drug will be Ketoconazole, pill form, along with 5mg of Prednisone. Cap isn't happy with taking the prednisone again, but he'll adjust. Our pharmacist did warn us that Ketoconazole and Lipitor do not blend well together, so Dave will be taking a break from Lipitor and Fenofibrate which is used for cholesterol. Ketoconazole is similar to Zytiga, it was the drug used prior to Zytiga being created and approved and cost of treatment to go through the roof. Ketoconazole is old school and only $10 a month with insurance. 400mg twice a day is the order for now. Ketoconazole drug does interfere with many prescription medications so it's best to take your recommended dosage two hours before or two hours after your other medications.
Finish Xofigo. There are two more injections. While the Xofigo only protects the bones and not organs or soft tissue, it's still helping with Cap's extensive bone mets. A new chemo will begin in February (or sooner if needed) called Mitoxantrone. Since Xofigo and Chemo can not go hand in hand, he must wait to finish one to start the other. This chemo could affect the heart, so the stronger the ticker, the better. An echogram is required before starting the treatment. Mitoxantrone is given every 3 weeks for 8 treatments. No more. After 4 treatments another echogram is required.
The brain is stable. No need for concern now. The brain continues to prematurely age due to the radiation. Dave is 64, but his brain is that of an 80 year old man. It's sad, but if he didn't have the radiation, he wouldn't have had an extra two years to live...so far. Rarely does a patient survive past 8 months with metastatic brain cancer. Dave's survival is a rarity.
This concludes our oncology visit from today.
12/12 The stent insertion surgery has been scheduled for 12/16. We passed on a 12/15 surgical date since that's Cap's 64th birthday and who wants to party while knocked out and wearing a surgical gown? The stent will push the lymph node out of the way and open up his Ureter which will reduce the pressure and bloating of his kidneys. Which will also help to prevent the need for dialysis in case of kidney failure. Today we had a consult with the Urologist and had lab work and an EKG done for surgical pre-registration. The stent is a metal coil, it's springy and flexible which means less discomfort. It lasts about 6 months to a year due to encrustation of the urine, the stent is then removed or replaced. It can be removed easily in the urologists office if need be.
12/15 Labs were good!
What is Creatinine?
For those of you unfamiliar with what creatinine is...this is what I have been told. Creatinine is a marker that measures the kidney function.
Like PSA is to the Prostate, creatinine is to the Kidneys. The lower the creatinine, the better which means your kidneys are functioning well, the higher, indicates that the kidneys are in distress.
To learn more about Creatinine, I found this link useful.
Ureteric Stent Procedure
12/16 The surgery went smoothly. Dr. Zamip Patel of East Orlando Urology is an excellent physician who besides having a great bedside manner is a master of his trade. If you need a Urologist for kidney stones, cancer or fertility we highly recommend him. Dave was a champion patient and is recovering well. One day at a time.
12/19 Dave had a echocardiogram today in preparation to start chemo in February. He aced his test! "30 year old men would be envious of the condition of your heart" were his test results. It's good to know that his heart is one organ that has never been an issue.
12/22 Weight is at 191. Blood pressure is normal. Hemoglobin dropped to 9.6 so a Procrit injection was administered. We have no medical appointments until 12/29. Hooray! In the meanwhile I would like to wish y'all a Peaceful Christmas season. I'm sending you positive vibes for a successful and healthy 2015.
12/29 Hemo is low at 8.6. Cap also caught a flu bug on Christmas Eve. He developed chest congestion and a cough. His legs were also very weak, which caused him to take a tumble during our lab visit at Florida East this morning. Luckily he had no injuries, except for his pride. Regardless I suggested to his Onc we reduce the Ketoconazole to 400mgs instead of 800mgs because my gut instinct is telling me that Keto could also be the culprit for his weakness. Time will tell.
12/31 Xofigo #5 was completed. While we were at the Radiation Oncologist I picked up a copy of the CMP from Monday. Creatinine is 2.32! It was 1.69 post stent surgery two weeks ago! Ferritin is 1,753! It was 923 in July and he isn't inducing excessive amounts of iron that I'm aware of. I