Hodgkin's Lymphoma - Nodular Sclerosis
In the spring of 1995 I was diagnosed with Hodgkin’s Lymphoma . Of the four types it was the mixed cellularity type. The cancer first appeared as a lump on the right side of my neck and soon progressed as a series of smaller lumps heading for my chest. The way these lumps developed and traveled and the fear with it, made me refer to the cancer as “the beast.” A CAT scan also revealed that I had a tumor in my lower right sinus cavity, which is not supposed to happen with Hodgkin’s. After having four cycles of chemotherapy and radiation to my right sinuses and mouth it seemed that I beat the disease or beast. At least I thought I did. Below is my story:
One year, two years, five years, or the ten year milestone, it didn't matter, I just wanted to forget that I had cancer. I wanted to put it behind me. During one of my treatments during my second bout with cancer I made the mistake of asking the nurse too many times what each chemo drug was for and what physical effect it had. She seemed to be irritated, lecturing about all the drugs again as she hung the bags on the iv pole. It simply was a matter of conditioning. You learn a skill, such as painting, or playing the piano and you are rewarded, but when you are administered pain, it is the kind of conditioning that makes you forget. I just don't know why I was so stupid to keep asking, because I really didn't care too much about the details of the drugs as long as they worked.
After the last time I had cancer, the oncologist told me that if I would have a recurrence it would start where it left off. That was great to know. No matter what, the beast was going to get into my chest anyway. There was no way of winning. The only way was not to get cancer again. That was my only chance and my only choice.
The First Symptom Shows Up
Six or seven years later I stopped going to the doctor for any kind of checkup. I didn't think it was necessary. I could check for lumps on my own, feeling for them at the base of my neck or under my armpits. So, thirteen years later, when a lump appeared on my right leg near my groin, I didn't think anything of it. It was early July, after a four mile run when I first noticed it. I always like to do sprints so you have the tendency of hurting all over when you are done. Considering your legs are taking most of the punishment I assumed I simply pulled a muscle. I was concerned that I might have herniated it but eventually I forgot about it because it didn’t hurt. Every once in a while I would check my leg forgetting about it for weeks on end, but the lump was always there.
Next, Some Weird Symptoms Begin
The “no pain” aspect should have been the alarm. Even though I felt fine, the first symptom reared its ugly head during the same month that the lump showed up. For about two weeks I lost my appetite and ten pounds with it. For me, this was not good since I am somewhat thin anyway, but I eventually regained my appetite and the weight.
Everything was back to normal until November and December when some truly bizarre symptoms showed up. The first real noticeable one was drooling. Yes, I was drooling. Even though the radiation more than a decade before dried up my saliva I still slobbered all over everything when I slept. I put stains on all my pillows. I put a stain on my winter coat when I fell asleep on the couch. I tried desperately to counter it by sleeping more on my back which I am uncomfortable with and I hate to do. At first, I was inclined to think this was a good thing. Maybe the saliva gland on the right side of my mouth was now back to normal, but this unfortunately wasn’t what was happening. The last time I had the disease, before the lumps showed up on the right side of my neck, I would sweat from my right armpit for no reason. I wouldn’t even have to exert myself. Standing, sitting, it didn’t matter. It was so random. It was like turning on a faucet and the odd thing was, it was exactly like a faucet. The sweat didn’t smell. It was only water! However, as sudden as the drooling started, it just as quickly stopped a couple of months later.
The next weird symptom, which occurred at the same time as the drooling, is my becoming a human candle. It first started in the morning when I was still in bed. I could actually feel heat coming off the top of my head. Soon it progressed into my waking life. I was on fire any place where it was cold, the heat just bobbing off the top of my head, whether I went out to get the mail, walked to my car at the supermarket, or if I stuck my head in the freezer. This symptom lasted longer and got worse as spring rolled around but it never morphed into night sweats.
The Real Problems Emerge
These two symptoms however paled in comparison to what was to come next. By mid January of 2009 I ended up in the hospital. It started one Sunday when I ate too much. By the time I went to sleep I did not sleep. I couldn’t because the bed wouldn’t stop moving. My heart was racing and it would not stop. It pounded so strong and so fast that I couldn’t keep still. In the morning my sister took me to the hospital. In the emergency room I laid in bed with a heart rate of 120 beats per minute. Any attempt to bring it down did not work. I was then admitted for the night where again, I did not sleep. Yes, stay the night where we will take care of you and find out what is wrong. Don’t worry. Get a good nights sleep.
Well, that is what should have happened, but instead, I was harassed every hour or two by a revolving door of nurses. Let me check your EKG. Let me draw some blood. Let me take your blood pressure. Then is started all over again. I started to doze off initially but I eventually gave up. This was compounded with an iv in my arm that prevented me from moving much in bed, and then considering that the iv was a blood thinner, I had to get up constantly to urinate. Obviously that night was not very good. My heart rate should have been 220.
By morning I was taken for a stress test. I was convinced that they were going to find something wrong. They had to since I had a family history of heart disease, but to my surprise they found nothing. I was fine. The explanation for my racing heart rate was a combination of acid reflux and stress. A few hours later I was home and my heart rate was somewhat back to normal.
The second serious symptom started innocent enough with my simply going to the bathroom more times at night than usual. At first I thought it was only a bladder infection. Some of the times I had some low level pain but it always seemed to go away when I drank cranberry juice or when I drank a lot of water. Then, one day, while working out in my basement on the treadmill, I thought I pulled a muscle. It didn’t really hurt. I only felt some discomfort at the crease between my right leg and my groin area. I tried to continue exercising but it only got worse. One day, after using a rowing machine, I was horrified when I urinated pure blood. Now, did I go to see a doctor. No. Despite how shocking it was I believed that I only injured myself and that I would heal on my own if I was careful, and this is what seemed to be happening. The blood diminished over a period of two days and then it disappeared. I guess I didn’t want to see any evil.
However, once I started any physical activity the blood would return. I still wanted to cover my eyes, not wanting to see the inevitable. The main reason is that I always seemed to rebound quicker. Eventually I didn’t notice any blood for a couple of weeks. This really shows how stupid I was. One day I felt the area between my groin and my leg and noticed a number of small lumps. It reminded me of the small string of lumps on my neck more than a decade earlier, but this time I felt quite a few more. What did I do? I did nothing. When I noticed a slight swelling on the right side of my groin, what did I do? I did nothing. It wasn’t until the blood returned and a parade of family members calling one after the other that I finally relented.
I Finally Go to the Doctor
The whole blood incident began in late March. Four weeks later I saw the doctor. The first thought was that maybe I had a kidney stone. I was reluctant, but I showed him the lump on my leg. He was concerned. This was the first time that it hurt since he pressed on it pretty hard. After I told him how I noticed it after running, he even thought that it could be a herniated muscle.
He sent me for a CAT scan. When he got the results a few days later the news wasn’t good. All of the lymph nodes on the right iliac chain were enlarged. This is the region where I noticed all of the little lumps at the crease between my right leg and my groin. There were also a good number of enlarged nodes along the inguinal chain. These are the lymph nodes that run along the abdominal aorta which branch into the legs as an inverted Y. The large lymph node on my right leg was on this chain. The enlarged nodes had spread up the abdominal aorta as far up as my intestines. The only good and perplexing news was that my stomach and my spleen were clear. It was odd because if the disease was going to reoccur, it would have spread down from my chest. This caught the doctor off guard. Even he was confused, but there was no doubt that the cancer had returned. It was a weird experience talking to him. He felt uncomfortable giving me the bad news. I felt uncomfortable that he had to do this. The news was shocking, but I wasn’t devastated. I wasn’t crying. I had been through this before. I just thought, here I go again. The doctor then told me that I had to go see a surgeon for a biopsy. Then he walked out of the room without saying anything more. I have to admit, at that moment, I felt alone.
I checked into a surgical clinic on May 4th for the biopsy. The surgeon removed two lymph nodes, the one in my leg and one in my groin. He told my sister, who was in the waiting area, that these were the largest lymph nodes he had seen. Apparently the beast was back with a vengeance, so it seemed. I still held out hope, but that was pretty dumb. What else could it be? I was even dumb enough to think that the lymph nodes could be infected. It is surprising how the mind can defy logic when it is confronted with something unappealing. If all those lymph nodes were infected I would have had a fever of 200.
The Cancer Returns
A few days later the surgeon called me about the results and yes it was again Hodgkin’s. Another few days later I visited the oncologist, the same doctor that treated me 14 years ago. The last time I saw him was in 2001. When I walked in, he happened to be sitting at the desk near the receptionist. When I signed in, he greeted me by my name. With all of the patients he has and did have, I was surprised that he remembered me. It was a warm feeling. At that moment I felt like I was in good hands.
When I finally got into a waiting room and the doctor looked over the biopsy report it became obvious how unusual my case was. The reason why the disease didn’t reoccur in my chest like it was suppose to was because it was a different type of Hodgkin’s. This time I had the more common nodular sclerosis.
I guess I am just an enigma. There were two facts that the oncologist stated that surprised him about me. First, he couldn’t believe that I got the disease again after 14 years. This is not suppose to happen. If you get through the ten year mark you are suppose to be safe. Second, he never heard of anyone getting another type of Hodgkin’s or having two types in a lifetime. This is not suppose to happen. When he presented by case in front of the tumor board, all the doctors couldn’t believe it.
“That can’t be”, was the most common statement among them. A second type, 14 years, tumor in my sinus cavity, these are all oddities but they aren’t the only ones. Why has the disease only occurred on the right side of my body? When the cancer appeared on the right side of my groin, it headed straight up toward my intestines and my stomach without going anywhere else. In other cases that I researched, if it started on one side of the groin it would not only go up but it would also migrate to the other side. Why didn’t this happen to me? If there is any doctor that can answer this I would be happy to hear the explanation. One final note, this may not seem right, but when I heard about the “tumor board”, I found the name funny and amusing.
From the time of the first biopsy to my first treatment it took an agonizing eight weeks. This is in comparison to four weeks the last time. I can’t believe all the tests and procedures that I had to take before I could start. I had to have a bone marrow biopsy, then a PET scan, then a echocardiogram, then a pulmonary test, then an infusion port inserted in my chest. It took over three weeks just to schedule the PET scan.
The waiting was frightening. My symptoms were getting worse. My heart was racing more often as I ate less and less. I could barely lift anything or exert myself without blood showing up in my urine. I also had the added complication from the first biopsy. After the two lymph nodes were removed the two vacant areas were replaced with fluid, which at times was painful. Before my body could adjust and compensate for the missing lymph nodes, I had some fluid build up in my right leg in the thigh and ankle which wasn’t comfortable either. It took five weeks for the fluid to drain allowing it to heal. During the entire time walking was a chore especially climbing stairs was difficult. Wearing tight underwear was impossible. At the third week I developed a low grade fever and was put on antibiotics.
To complicate matters, the aftermath of the bone marrow biopsy brought its own set of problems. I had two holes drilled into my hips on both sides from my back. Sleeping was a real trip. In order to change sleeping positions from one side to the other I had to get up on all fours to do it. Rolling over on my back caused so much pain I would have had my head stuck in the ceiling if I tried it. Rolling over on my stomach was out of the question also, because of the fluid in my leg and groin. I also realized how painful it was to run. Once, while trying to get across a parking lot, I ran to avoid the cars. I can’t believe how much my hips hurt when I did that. It probably would have been less painful if I would have been hit by one of the cars. Yes, life was really great at that point.
I have never been a person who judges someone for their vices. I don’t smoke and I don’t drink, but I have never judged others because I am just as human and just as susceptible to addiction. I definitely realized this when I had both biopsies. The drugs that they gave me were great. I could have easily become addicted to them. Of all the horrors that I went through, those two times were the best. Those were the only two times that I was very happy.
The complications and the pain had a mixed blessing. It kept my mind off of what was really happening. By June I was much better and now my mind turned to the disease. Nights were particularly stressful. Lying in bed, the only thing I could think of was how the beast was growing and boring and drilling deeper inside. I so desperately wanted the treatment to begin. I tried to visualize my own immune system attacking the cancer but in this battle it was losing badly.
Before my treatment began the oncologist was trying to figure out how to treat me. There is a lifetime limit for the chemotherapy drug that he wanted to use. Since it was used for my treatment 14 years earlier, this posed a problem. It was compounded when the PET scan revealed that my cancer was stage 3 and not stage 2. The scan revealed a possible cancerous lymph node near the right side of my heart. Now radiation was out of the question and thus, the required treatment was eight cycles of chemotherapy (16 treatments). One alternative was to alternate between the drug I had been given before with an old standby drug primarily last used in the seventies, but there was more possible side effects. The primary concern was that this drug could permanently damage my bone marrow. Talk about friendly fire.
This wasn’t going happen. I wasn’t going to take the chance. I didn’t want to be treated with that drug. The oncologist finally decided to put me on only two cycles (4 treatments). I would then wait two or three weeks, have another PET scan, and then go from there.
The Chemotherapy Finally Starts
The first treatment took place at the end of June. It actually was not that bad. It is amazing the new anti nausea drugs that are now available. I wish I had them the first time I had to go through this. However, there was one side effect. I didn’t sleep too well that first night. One of the nausea drugs was a steroid, making me stay up half the night wandering around my home. When I did fall asleep I went out like a light. I didn’t hear the phone nor did I hear my sister banging on my front door the next morning. Luckily I never suffered this in the following treatments. Maybe I also couldn’t sleep because of my excitement. I was excited that my treatment had finally begun. I knew that the beast was going to take a beating and in the following days I found out that it did. Immediately the swelling in my groin went down. When I gained my appetite back I found out I could eat without my heart racing. My blood pressure even went down. I also found out that I could use the treadmill or lift something heavy without blood showing up in my urine. When I first mentioned the blood the oncologist became alarmed.
“You have to see a urologist” he said rather demanding. I tried to brush him off by telling him that it probably was the kidney stones that the CAT and PET scans detected. Initially I don’t think he believed any of these symptoms were caused by the cancer but I knew better. It was my body. I knew the enlarged lymph nodes were pushing on my bladder and on the abdominal aorta. I realized, though, that of all the possible doctors I could have decided to go to, I definitely picked one of the best oncologists. Actually, I was referred to him by one of my sister’s friends. During a follow up exam, after the first cycle and a half of chemotherapy, I told him about the symptoms going away. He was pleased and open minded about it. He wrote this down in my medical file.
The rest of the chemotherapy treatments went well. All of the swelling disappeared after the second treatment. Most of the time I slept, sometimes as much as 16 hours a day on Saturday and Sunday. Like the last time I had cancer, my treatments were on Thursday, so appetite wise Saturday was the worst day, but it was never really that bad, mostly a change in taste with a revulsion for sweets.
I was finished with chemo by mid August. I went for another PET scan in early September. Three days later I had a message on my answering machine from the doctor’s assistant. She was excited. The PET scan came back negative, no sign of cancer. The doctor then consulted with an oncologist at the University of Michigan on what to do next. He was pleased that I responded so well and hinted at the possibility that I might not need anything more. However, the doctor at the university suggested one more cycle of chemotherapy which I finished in October. On November 3rd, I met the doctor at UofM. She looked over my results and then told me that she would consult with other doctors and then decide what to do next. The following Friday she called and recommended follow up radiation only at the groin area and then that would be it. However, when I talked with the radiation oncologist, who also was the same oncologist that I went to 14 years ago, he still was against treating me with radiation. Now, the doctors will consult each other again and my treatment is up in the air again.
As I write this I haven’t a clue what my next treatment will be or for how long so maybe it is premature for me to state that I survived cancer a second time, but there is definitely one thing I do want to state. I don’t want to ever write another article about me surviving cancer a third time.
This is the conclusion to the my personal story "Surviving Cancer - Hodgkin's Lymphoma" that I wrote about above. This is about my final treatment and my road to recovery.
I never received radiation as part of my treatment. The university doctors recommended radiation only at the groin area since they believed the lymph node near my heart was a false reading in the PET scan. However, the two doctors that were treating me which included the radiation oncologist disagreed. If the single node was a false reading then why did it go away after two cycles of chemotherapy? Radiation would have to cover most of my body to include this one lymph node and the consequences were pretty grave. Mostly, it could permanently damage the bone marrow.
So the radiation was out of the question and for two months I enjoyed a vacation hoping that I didn’t need anymore treatment. But I was crazy to think nothing else was going to be done. It is not surprising how delusional you can get when you are in this situation.
I got the first clue to what they were going to do when I had the monthly port flush. The nurse told me she heard the doctor on the phone talking about a different chemotherapy treatment. It most likely was going to be the ICE regimen but she wasn’t certain. I went and looked it up and was not too pleased on what I found out. It was a treatment for aggressive and recurring lymphomas. It required an overnight hospital stay with a one day drip. The primary concern was the drugs could damage the kidneys and cause bleeding in the bladder.
By early December, I was called and told when to come in to see the doctor. The anticipation of what was going to happen next made me nervous. I dreaded what I was going to hear, and yes, the doctor finally decided on ICE. I told him about my concern with bleeding and he reassured me that another drug would be administered that would prevent or alleviate this symptom. So, as an early Christmas present, I was admitted to the hospital on the 16th. Initially everything seemed to go well. I stayed in the cancer ward where I had a room all to myself, courtesy of a large donation to the hospital. The next day I went home and then the fun began.
The first thing I noticed is it burned when I urinated. This lasted about a day and I dreaded every time I had to go to the bathroom. At least I didn’t see any blood. The main symptom was how I felt which I can’t exactly explain. I simply felt horrible. Not only did I sleep a lot but I moved in slow motion. I was in pain in ways that I couldn’t describe and it was evident in that this chemotherapy hit me harder than what I was on before. For my first occurrence of Hodgkin’s and the first three cycles of my second occurrence I was on the ABVD chemotherapy regimen. This is the chemotherapy that has a lifetime limit which forced me to go to ICE. On ABVD I lost my hair but not all of it. I lost most of my facial hair but I still had to shave. On ICE I lost my hair completely. I last shaved on the 23rd of December and didn’t pick up a razor until the end of March. I was also hit harder in blood counts. I was used to having low white blood counts but with ICE they became almost nonexistent. I even became anemic. During one of these extremely low blood counts I was exposed and contracted the 24 hour flu. It was rough but I did, out of some miracle, get over it in a day.
Unfortunately I had do endure the ICE treatment three times as they pumped more chemicals into me. With names like, ifosfamide, carboplatin, and etopside, these sounded more like chemical names to me than drugs. Almost as if they were being pumped directly from a car battery.
Surprisingly, the only thing that was normal was my appetite. Unlike the nausea under ABVD, I actually had a good appetite and eating did alleviate the other symptoms. However, I did have another symptom that did not have to happen. I had serious stomach pain that would occur at all times of the day. Most of the time it would hit at around 3AM. I was prescribed vicodin and yes it did make me feel very good but the pain still persisted and I had a feeling as to what may have been causing it. Back in September when I was given a month and a half off from chemotherapy, I suddenly developed severe heartburn. I then took one of the antacids, where you take it daily for only a few weeks and then it should control your heartburn for about four months. Right before my last ICE treatment which passed the four month mark, my stomach pain suddenly stopped. Apparently, since chemotherapy affects your digestion, the antacid compounded the problem. So, my word of advice, don’t take any of the long term antacids when you are on chemotherapy.
I was suppose to finish ICE by mid January but with my blood counts dropping so low after each treatment, I didn’t finish until the first week of February. I then had to wait another month until the next PET scan. Despite that the second PET scan back in September showed no signs of cancer, I was still nervous about what was going to happen next. Without radiation, normal treatment was suppose to be eight cycles of chemotherapy. I had only six so far. I dreaded the possibility of having two more cycles of ICE.
During the following month everything slowly returned to normal, relative of course. After having ICE, the process was slow. I didn’t feel that well until right before the PET scan, but eventually the blood counts returned to normal and the liver and kidney tests showed no signs of any problems.
On March 3, 2010 I had the PET scan. Right before the test I talked with the doctor and he recommended that I should see the radiation oncologist for an opinion on possible radiation treatment to the groin area. Two days after the scan I was scheduled to see the radiation oncologist but he cancelled the appointment when he got the results from the scan. He said that I was fine, that I didn’t need any further treatment. On March 11th I had my final appointment with the doctor. I was finally declared in remission. This was good news to hear and a relief. He said that I responded so well that the full eight cycles was not necessary. However, he did have one warning. He was concerned since I now had two types of Hodgkin’s over the past fifteen years. He told me that I may now have to consider having a bone marrow transplant, but this is not something I have to have right away. It could be done at anytime but definitely it will have to be done if the disease comes back. Obviously I hope I don’t get it again but if I do, the next experience is going to be completely different.
Gene W Strasser (author) from Lake Orion, Michigan on December 17, 2015:
To leastamplbc, much has changed between the two times that I had Hodgkin's. Back in 1995 chemo was harsh. While Hodgkin's had over a 95 percent cure rate, non Hodgkin's only had a 30 percent cure rate. However, in 2009, chemo was so much easier to deal with because of the progress in anti nausea drugs. Also, the non Hodgkin's cure rate is now near the cure rate of Hodgkin's. A lot of progress in 14 years. Any cancer is serious, but the side affects, including temporary and permanent, are much less severe for Hodgkin's then for any other forms of cancer.
leastamplbc from Fowlerville Mi on December 14, 2015:
Thanks for sharing your journey. My wife is going in for surgery in a week she's 42 with a 9 year old daughter. She has a lump under her chin Doctors said Hodgkins lymphoma don't no which one yet. She's been told she will be getting chemo. Surgery being done at Henry Ford Hospital in Mi. It was good to read the chemo is not an automatic death sentence. I always heard a lot of horror stories.
Gene W Strasser (author) from Lake Orion, Michigan on July 12, 2015:
To zy, I have not heard about ozone treatment. You mentioned you have had three cycles so far. From my own experience, I had six cycles with the last three using ICE which is far more potent than ABVD. If you want to try the ozone method should you maybe try after six cycles of chemotherapy? Just a thought. Whatever your plans I hope you are doing okay and I hope for the best.
zy on June 18, 2015:
Had my 3 cycle of chemo today. Ctsan shown that my lumps strung a little. Stoping chemo and going for ozone treatment soon. Hv u heard abt this ozone.
TS on February 24, 2015:
Thank you for answering. the 'mental noise' is really hard to silence, worrying and getting anxious about these things. I am hoping for the best. Thanks for your time. :)
Gene W Strasser (author) from Lake Orion, Michigan on February 21, 2015:
It has been quite awhile since I have been in remission so I don't remember if I did have small lumps right after my finale treatment. However, I was running and working out at the time so the muscle that I had built up might have masked any lumps. For yourself, if you did notice a dramatic change during treatment then that obviously is great and that is what I am gathering from your comment. More importantly you mentioned that your symptoms are gone which is great too. I can't say what is going on but I have wondered what happens after the cancerous white blood cells are eliminated. It is remarkable how large the lymph nodes get, considering their normal size, when they are cancerous. I can't see them returning to their small size immediately. Maybe this is what you are feeling. The lymph nodes have to heal. Hopefully that is what is happening.
TS on February 20, 2015:
Hi! I was diagnosed of HL, and about to go for CT scan after my chemo sessions. I'm female, 27. My blood test results came out great. My oncologist is positive that I am doing well. All my symptoms have gone. However, I do feel some small lumps in the groin area (both sides). My doctor said it could be scar tissues (?), but cannot be really sure until after the scan. I'm just wondering if you have similar experience after your treatment? If you have scar tissues or any palpable lump after your treatment. I am worried. Also, thank you for writing this story many years ago. I'm hoping you still check this page.
Gene W Strasser (author) from Lake Orion, Michigan on May 09, 2013:
Yes, having a great appetite is not a bad thing anymore, especially since the anti nausea drugs are so good now. I simply lost my appetite for a few days after treatment. I still could eat, I just didn't want to. In contrast, 14 years before, when I had cancer the first time, I was very sick for days after. It is remarkable how the drugs have improved.
Fransina on April 30, 2013:
is it a good sign for a person receiving chemo for hodgkins and he gets great appetite?
Gene W Strasser (author) from Lake Orion, Michigan on April 06, 2013:
I am sorry that I didn't answer sooner. I don't recall getting an email alert about your comment.
I am sorry about your father. I don't know what to say. The doctor that I had was fantastic. He has a good track record against NHL but that is only from some of the people that I know who went to him. I didn't have NHL but since I was diagnosed a second time and there is a lifetime limit to how much certain drugs you can have, I was put on ICE chemotherapy. ICE is used on all lymphomas especially aggressive lymphomas. So I am curious if your doctors tried ICE?
I don't know where you live but regardless you could probably have your father's doctors call the doctor (who treated me) for consultation. I don't want to give contact information here but you can do a search. His name is Roman Franklin and he is located in Michigan.
firstname.lastname@example.org on March 27, 2013:
hi my daddy has got NHL he has gone through 5 lines of chemotherapy for 15 cycles but disease still persist his disease still persist and doctors gave up on him I dont know what to do ???
John on December 16, 2011:
Just found out I have HL for the second time in 5 years. My Doctor is thinging of Chemo,radiation, and stem cell transplant. I hate this.
Yvonne on October 10, 2011:
Iam begining to think late reoccurance are not as rare as we think. My husband had a relapse November 2010 after a 14 year remission. Had a stem cell transplant March 2011 and is doing good.
Gene W Strasser (author) from Lake Orion, Michigan on July 28, 2011:
It is good to hear that you are on the road to recovery and that you have a good attitude. Unfortunately I can not completely guarantee that you won’t ever be diagnosed again, but I am pretty sure that you will not have a reoccurrence if you get past the one, two and five year milestones. From experience with other people that I have known, the first year seems to be the most important. Get past that and you are almost home free.
One thing you have to realize is that my situation was very unusual, to have it hit me twice with such a long period of time in between. When I was in high school many many years ago, I had a good friend, who was about your age, when he was diagnosed (Hodgkin’s). This was way back in the seventies. The chemo that they used back then was far more destructive on the body than what they use today, but he got through it and nearly 35 years later he is cancer free. He never had a reoccurrence.
Soon you will be going through radiation treatments. It has its own set of side effects but combining it with chemotherapy allows the doctors to dramatically reduce the amount of radiation that you will receive, and that is good. But like chemo, you will get through the rough points and you will then be fine. I met two people that refused the chemo and only wanted the radiation instead. Despite having to receive more radiation they all did well. Overall, the good thing about Hodgkin’s is that the radiation dosage required, regardless if you use chemo or not, is way lower than for other cancers.
For myself, I wrote a follow up to my final treatment and posted it as a separate article but the website flagged it as a duplicate so it was blocked. I just cut and pasted it above and yes I am now in remission for more than a year.
As being an inspiration, you are the inspiration, for being so strong for having to go through what you are going through at such a young age. You so remind me of my friend so long ago because he was an inspiration to me when I was first diagnosed.
I wish you well, and take care.
Olivia Maddix on July 26, 2011:
Hi my name is olivia maddix i am 15 years old and about 3 months ago i was diagnosed with hodgkin's lymphoma stage 2 1/2. i found my cancer tumor in the left side of my neck above me clavical. i have another seven tumors in my chest a a large fist sixe one around my heart. i also have two small ones in the left side of my neck. i found the tumor above my clavical late january and thought nothing of it but still told my dad and he thought nothibng of it aswell. then i watched the Oprah show and a man was the guest and he found a lump on the side of his neck very similar to the one on mine (which was the size of a golf ball) and that really got my modivated to finally tell my mom and have a doctors exam scheduled. some of my other symptoms were night sweats and between August of 2010 and March of 2011 i lost 31 pounds. i had a blood test, ultra sound and x-ray to prove that i had tumors on the upper half of my body. i then had PET and CT scans to show that they were cancerus and to finish bone marrow and biopsies to find out they were hodgkin's. i now have a PICC line in my right arm and on Thursday i am going to sickkids hospital to get it removed :) and another PET and CT scan to show i am cancer free:) my last round of chemmo is about to end the 1st of august and then i start three weeks of intense radiation. your story has truly inspired me not to be scared that there is still a chance of having cancer a second time, because if you cvan beat it a second time then i have faith theres a chance i can if it occurs. thank you for sharing your story and (pardon my french) hope that you kick cancer in the ass a second and final time!!
Jeff from Where ever the road takes me.... on May 25, 2011:
To all on this post....you ALL are inspirations to alot of people. I too had HL back in 1997, then in 2009. Good to go now...The worst thing one could do is to give up, so NEVER quit fighting the beast! God Bless!
Gene W Strasser (author) from Lake Orion, Michigan on May 10, 2011:
Sorry for not responding sooner. Hope that your husband had the PET scan and all is well and the cancer is gone. If he responded the first time fifteen years ago to the chemotherapy then there should be no reason why he shouldn’t respond this time. In my case, both times the lumps or swelling disappeared after only two cycles. My response to the chemotherapy was identical even though my treatment was 14 years apart. So, he should be fine.
Even though many of the doctors that heard my case said that it was impossible, there was one doctor that I consulted that wasn’t surprised. He said that the time in between the occurrences was rare but he had seen it a few times before with other patients. He said that for some reason, they don’t know why, but these mutated white blood cells sometimes just go dormant. Once in this state, they don’t divide rapidly and thus, no form of treatment will kill them. They are acting like normal cells. This is probably what happened to your husband and this brings me to a question that I would like to ask. Over the years I have heard a lot about how diet and exercise can prevent and fight cancer but recently I have heard from someone who claimed that he fought prostate cancer only through diet. The diet that he claimed that worked consisted of the following: vegetables, fruits, whole grains, no beef, no processed foods, and no dairy. Fish and poultry is allowed though. Even though I have occasionally indulged myself with other things that are not on this list, I have pretty much adhered to it without realizing its supposed benefits. I also do exercise and I have never been overweight. I was told that this is what could have kept the cancer in a dormant state for so long. So, I am curious, if you don’t mind me asking, can you please tell me what you and your husband’s lifestyle is like? Do you exercise and eat well? (Maybe lifestyle is a factor but on the other hand it seems like the healthiest people are the ones who seem to get this disease in the first place.)
janet gardner on May 04, 2011:
You are not alone, my husband went 15 years cancer free from Hodgkins Lymphoma and was diagnosed again in 2010. He also had it in a different area. He has just finished 8 months of chemo and is about to have a Pet scan. The experts said he was unlucky to have a reoccurence after so long but are positive they can put it into remission. I just want everyone to know that I am very proud of him.
Gene W Strasser (author) from Lake Orion, Michigan on March 19, 2011:
To: 18 male diagnosed with HL:
What I meant to say in my comment above, "I was told or recommended to use a fluoride rinse along with brushing."
Gene W Strasser (author) from Lake Orion, Michigan on March 19, 2011:
To: 18 male diagnosed with HL:
Sorry for not responding sooner. By now you should have had your PET scan. I didn’t even pay attention to your initial comment that you had a CAT or CT scan. I have only had PET scans so I assumed that is what you had at first. Considering that it was a CT scan, it can’t really detect cancer so the large lymph nodes could be as your doctor mentioned, scar tissue or large lymph nodes with no cancer. I never thought about it, but when your lymph nodes fill up with the mutated white blood cells they swell to enormous size. After the cancerous white blood cells are killed the lymph nodes may still be large and it may take time for them to return to normal size. I hope that is what is happening. Yes, PET scans are expensive. I have had to pay a deductible on a few of them and I can’t have two in less than six months, but they are the best way to detect if cancer is present or to prove that it isn’t.
Radiation has its own side affects and it depends where it is applied. The two people that I mentioned in my last comment had their Hodgkin’s in their chest so the radiation wasn’t that bad. I didn’t have radiation this time around but I did have it back in 1995 after my first bout with cancer. Since my cancer was in my neck and sinus cavity, my mouth was radiated. Half way through treatment, I lost all taste and my mouth was scorched. I could barely swallow. My taste came back in about a month but I could not taste certain sweets for about ten months. The saliva gland on the right side is permanently damaged and so, I have reduced saliva which is permanent. For oral care I was told or recommended to use a fluoride.
So, it depends where the radiation is applied to get the best affect with the least side affects. Like chemotherapy, radiation does have its own problems.
When it comes to pauses in your treatment, don't worry. Hodgkin's is slow in growth. After thinking about my diagnosis, I now realize that it returned more than two years before I was diagnosed in 2009. It took that amount of time until the symptoms got worse enough to force me to go to the doctor so pauses of a month or two are should not be a problem.
Otherwise, I hope you got your results and I hope the news is good.
18 male diagnosed with HL on March 14, 2011:
Thanks for your support and giving information and showing your experience
Well I hadn't any appreciable Note in all of my analysis results before each treatment ..except 3 or 4 of them showed lack of calcium ..another showed more sodium than average ..and they were all near to average and the rest of results were just clear ...
i always felt happy for not losing many hair and the fallen ones come back to grow again during my treatment...but i also got worried if the same happens to the cancerous cells in here..but i just said to myself that my hair can be different from these cells ..
Anyways i went to the doctor few days ago ..and he said that i need to go for a PET scan ..because maybe there are SCAR TISSUES formed around these nodes after it shrank ..or it's all dead not cancerous ..so the PET Scan will show whether it's cancerous or not ...That was a WAY to go ...
The Other one was ...to just Go for radiotherapy as the doctor said the CT scan is not showing any bad yet..so i can just go on for radiation(as you said) and no much need for PET Scan if it's not affordable ..yes it's a bit expensive where i live
So that was my doctor's say about that ...and he didn't mention any thing about coming back to CHEMOTHERAPY
So i decided to go for PET Scan....
But if ill do my PET Scan ..it will be Tuesday next week ..so then it will have been a month since my last chemotherapy dose ..that makes me a bit worried about any development that would happen to the nodes ?
and another general question i'd like to ask
i always felt like Radiotherapy is better but if really Radiotherapy is Easier, no much suffering,no long term effects or complications and it requires even less time to reach remission for that kind of cancer....then why we had to go through chemotherapy ?!
but anyways you're right hopefully Radiotherapy will kill the beast!
Thanks! ..peace :)
Gene W Strasser (author) from Lake Orion, Michigan on March 13, 2011:
To: 18 male diagnosed with HL
I am sorry to hear that you aren’t responding well to the chemotherapy. I was very shocked by your comment that you posted. First I want to start off by telling you that radiation should and will work. A number of years ago after my first diagnosis the oncologist, that treated me, asked me to talk to a patient about your age, who was considering what treatment path he should follow. I had gone through the combination of chemotherapy and radiation. I told him how long it took and in the end, he didn’t want to go through five or six months of treatment so he chose to only have the required two months of radiation. I heard later on that he was in remission. I also found out from a fellow coworker years ago, that his wife also only had radiation treatment when she was diagnosed with Hodgkin’s. At the time, she was in remission for about five years, so obviously she had beaten it without resorting to chemotherapy.
Sometimes when tumors shrink the blood supply near the tumor gets cut off or gets restricted making it harder for the chemotherapy drugs to get to the tumor. That is where radiation fills in. It doesn’t depend on blood supply so it can finish off the tumor so to speak.
Some people for whatever reason, they don’t know why, don’t respond to chemotherapy. This brings me to a question. Did your white blood count go down significantly after each treatment? If it did, then it means that the drugs were working or suppose to be working but for some reason they weren’t killing the cancer cells. Chemotherapy will stop any fast growing cells such as your stem cells that produce white blood cells. If your white count didn’t go down it could still mean the same thing but then there is an added wrinkle. Either you don’t respond well or the drugs weren’t administered properly. The three drugs in abvd have to be injected at the right quantities or ratios in order for them to work. I can’t say if any of these guesses are correct because I am not a doctor but I do have experience. Another clue is the hair follicle. It too is fast growing and that is why people lose their hair during treatment, and it could be a very good indicator if you are responding well. My PET scan showed no sign of cancer after only two cycles and as I mentioned before, I lost my hair all at once a little more than two weeks after the first treatment. You mentioned that you really didn’t lose much hair and that initially surprised me.
Another word of hope and encouragement is the fact that there is always a backup plan in the medical field. Radiation is one of them but there are other chemotherapy drugs. As I also mentioned, because of my being diagnosed twice, I couldn’t use abvd all the time because of the lifetime limit so the second half of my treatment involved switching to ICE. Like abvd, ICE is a combination of three drugs. It is meant to be used on aggressive lymphomas so its affects were more dramatic. With abvd I lost most of my hair but actually not all of it. But with ICE I went completely bald. I lost all body hair including my eyebrows. This was definitely proof that ICE was doing its job.
So in closing, hang in there. Radiation should take care of it and if your doctors want to do something else, the tools are there such as ICE (and even other drugs). They are not empty handed. I wish you luck and I want you to comment again later telling all of us that you are in remission.
18 male diagnosed with HL on March 08, 2011:
i had a CT Scan before my Chemo Cycles ..it showed:
"NECK : multiple enlarged cervical lymph nodes are seen in the upper and lower deep cervical submandibular and sub-mental regions forming multiple discrete soft tissue masses at their anatomical sites. the largest is seen at the upper deep cervical group measuring 1.8 X 1 cm along it's Max. transverse diameters.No breaking down or matrix calcification"(everything else was clean)
"CHEST: Few Mildly enlarged retro-sternal and pre-vascular lymph nodes are noted forming discrete soft tissue densities at their anatomical sites .The Largest measuring about 1 cm in diameter.No breaking down or matrix calcification"(everything else was clean)(abdomen ,pelvis and bone marrow was clean)
NOW the CT scan results I had yesterday ..shows ..the measuring of the LARGEST in neck is now 1.3 X 0.5 cm
and in CHEST ..it SHOWED No apreciable changes :( it still measures 1 CM in diameter ....im freaked out...4 monthes of chemotherapy ..and NO CHANGES in LN in chest?!! ...am i going to take more ABVD cycles ..or maybe that's still fine to go on and have Radiotherapy and ill be fine?
Gene W Strasser (author) from Lake Orion, Michigan on January 29, 2011:
To 18 Male diagnosed with HL
It is good to hear that you are doing well. I am glad that your number of rough days was like what I went through, only three per every two weeks. Too bad that you vomited once though. I should have mentioned and you probably know this by now, you shouldn’t go into chemotherapy with a full stomach, or you shouldn’t pig out before and just after treatment. Yes, like you, I didn’t lose weight. I ate very well during the off week and the beginning of the week of treatment. But by Tuesday, two days before treatment, I would slow down. For me, being full, going into chemotherapy had the potential of making me feel very sick. This was something I especially had to watch when I was diagnosed the first time back in 1995. During one treatment I had a birthday party the following day and I ended up eating way too much. That turned out to be a big mistake. I ended up in bed for three days unable to get up. Boy was I sick. However, back then, the treatment for nausea was not that good as it is now but I still stuck with my idea to “diet” just before treatment, and overall, it has served me well. The second time around after my second diagnosis I simply didn’t have an appetite and I was tired and that was it.
It is interesting how you couldn’t tolerate foods you liked but when you tasted them they tasted okay. For me it didn’t turn out that way. I had revulsion for sweets and when I tried to eat anything sweet it tasted like crap just like I anticipated it would.
It is good that you didn’t lose much hair. Again, this is where I also reacted differently. I lost most of mine. Didn’t lose my eyebrows though.
When it comes to fertility I don’t know what to say. I don’t want to get your or anyone’s hopes up but I do think that doctor’s will give you the worse case so you won’t get your hopes up when you finally do try to start a family. Now that you have this experience you will begin to meet and talk with other people that have gone through something similar. I met someone who had testicular cancer when he was 18 years old back in the early sixties. He had surgery to remove some lymph nodes that became cancerous when it spread but other than that they fried him with radiation since chemotherapy was somewhat more in its infant stage back then. They told him that he would be infertile. When I asked him if he was he said no, that he now had two daughters in college. So, yes, there is always hope.
Gene W Strasser (author) from Lake Orion, Michigan on January 25, 2011:
I am somewhat shocked that you considered not going for treatment and I hope that you are not considering skipping it now. Yes, there is a lot of bad information out there confirmed by the other people that have commented here. During my treatment I never really researched anything on the internet because this was my second occurrence of the disease so I already knew what to expect. The only time I researched anything was right before I was put on the ICE chemotherapy. Even though ICE was difficult I have to admit the info on the internet made it look worse than it really was, so, I guess there is a lot of bad info out there.
Otherwise, I made it through the rough times and so can you. As another inspiration I can relate another story. My brother-in-law’s uncle was not only diagnosed with lymphoma but he was diagnosed with non hodgkin’s. During my first diagnosis back in 1995, non Hodgkin’s had only a 30 percent cure rate and a lot of it involved removing as many lymph nodes as you can through surgery. I heard of one such story back then. However, it is now amazing how far they have come since then. My brother-in-law’s uncle went through eight cycles of chemotherapy using the same treatment for hodgkin’s and he went into remission. I don’t exactly know how old he is but I think he is either in his mid sixties or he is around 70 years old. As of today, he is doing great.
I am humbled about your comment that my own story is an inspiration. But in your case, that it is making you reconsider, then I am glad it is an inspiration. Please, go for the treatment. I was 34 years old when I was first diagnosed and I was almost 48 years old when I was diagnosed again. In both cases I responded immediately to treatment. As I mentioned above, only two cycles of chemotherapy revealed no signs of cancer on a following PET scan, so the treatment is very effective, as can also be seen by the comments from Carly and the 18 year old gentlemen who are now going through treatment.
Finally, if you go for treatment you can try out the great drugs!
18 Male diagnosed with HL on January 23, 2011:
Hey again ....I thank you all and thank my self because Saving the link of this page ..so i could come back as i did now and read your Inspiring story once more ..i had my 6th treatment yesterday..you're right..the rotten days are only JUST three! and then gradually back to normal .my 1st Treatment was the easiest i didn't feel anything except so little Nausea ..but 2nd one was the worst till now ...because i vomited once ..and thankfully it didn't happen again .. i've experienced a bad taste of saliva..it's almost 75% of the cause of my NAUSEA..everytime i swallow it ..i feel bad ..but i got used to this ..and i've experienced that weird phenomena that i can't even name it ...it's about certain types of food i used to like Much ..now when i think about them ..i feel so bad ..but when i force my self and eat it ..i'm like "yeah it's good ..why did i hate that?" ..and once i leave it for few seconds and think about it again i feel bad again because of thinking about eating that certain food ....HOW IS THAT EVEN POSSIBLE ?! lol..so that's from the weirdest things that happens to me ...BTW Carly ..you're so right the web is full of bullshit ..after i was diagnosed i had nothing to do except surfing the internet reading the side effects of chemotherapy ..i was like "im gonna die through this" ...but somehow i was stronger than ever ..but yeah nothing from the tons of the side-effects that ive read on the web happened to me except NAUSEA and being tired ..i didn't even lose weight ...and i lost almost only 30% of my head Hair and Thankfully almost nothing from my eyebrows and eyelashes(i was scared of losing them) ..so i just wear my ice cap as a part of my style and go out and have fun with my friends without anybody noticing that i have any kind of illness ..so it kept my good attitude of living a normal life...
What scares me now is being Infertile as my Doctor said it's a fifty fifty chance to happen ..hope it ends up in a good way ...and after all im really thankfull that it was Hodgkin's ..and i didn't have much side effects..in other words i didn't suffer much ..and life's good and Hope for you all to pass through this with no pain ..!!
and once More thank you for your inspiring story ...:) Peace Be upon you!
mel on January 21, 2011:
great in-depth story and very inspiring....just been diagnosed with HD and was even wondering if I should go through the whole risk cycle of treatment(some horror stories on the web)or risk the rate at which it might take hold(I'm 60)but this has made me think again.....btw,which drugs did you like?..heheh...I'd like some of those please
Gene W Strasser (author) from Lake Orion, Michigan on January 11, 2011:
It is always hard to write to someone for the first time right after they have been diagnosed or they are just beginning treatment. But in your case it is a little easier because of your great attitude and the fact that you are feeling better even though you are on chemotherapy! That is fantastic! It is pretty certain that at this stage of your treatment I can bet that the cancer is now gone. Yes, they have to give you more to assure that they really got it all. It actually is just a precaution.
It sounds like you went through something similar to what I experienced. I also published another account of my bizarre symptoms. One of the main ones was depression. Before my second diagnosis I was even put on the antidepressant Lexapro. Before my first diagnosis I quit a promising job because of depression. So, your doctor’s recommendation to see a psychiatrist is understandable.
Your mention of the internet is also true but I have also learned that even your doctor will hold information from you about your treatment. For example, when I had to go for radiation treatment during my first diagnosis, the doctor never told me that I could be permanently paralyzed since the treatment area couldn’t avoid my spine. I found out about it by reading the fine print of the form I had to sign. This is also true about hair loss. For many of us the hair loss will be permanent. I heard it is a fifty fifty chance and unfortunately for me I didn’t end up on the good side. My first diagnosis was back in 1995. My hair came back just like it was at first but eight years later it thinned out. Anyone would say that I was simply going through male pattern baldness but it didn’t occur over many years. I thinned out over only a two year period. I wasn’t able to confirm that the chemo did this until my second diagnosis when my beard thinned out in only a matter of months. Now I can skip a few days and I really don’t notice. When I told the nurse at the doctor’s office she said with a smile, “it has happened to you too.” I asked her if it was permanent and she said, “yes.”
For you, I don’t think you are going to suffer the same fate. First you are young and you are female which will work in your favor but more importantly you are one of the few exceptions where your hair didn’t fall out at all! That is great! I have heard of this before but like I mentioned, it is rare. You are very lucky.
But at this point vanity shouldn’t be the main concern. As you mentioned, it could be worse. I also try to look at it from a positive side. Now shaving is easy. I haven’t cut or nicked myself in over a year.
Finally, I can say that I had the same calmness after I was first diagnosed sixteen years ago. Initially it alarmed my family because they thought I was giving up. On the contrary I wasn’t. It also just happened to be that death itself does not scare me (the method of dying does though) so this is what might have alarmed them, but I even remember one of my brother-in-laws telling me that he couldn’t believe how brave I was in face of what I had.
So, it looks like you are doing great and I wish you a speedy recovery from this dreaded disease. Obviously you are well on your way! Take care.
(On a side note, I published my second bout with cancer on this site but never wrote about my first occurrence because I gave exclusive rights to another site. It can be found by clicking on the following link: http://www.associatedcontent.com/article/2303757/s...
carly on January 08, 2011:
I was diagnosed with HLabout 2 months ago now and I just had my 4th treatment yesterday. Your story really is inspring. Personally I knew right from the time I was diagnosed that everything was going to be okay, a weird calm came over me and while very one else was crying I was okay, it was the stangest feeling one could have. For me though I had had a feeling that there was something not right for a solid six months or so I had exhausted my doctor to the point where he wanted to send me to a physiciatrist. My first appt. with her ended beeing the day after I was diagnosed LOL. Anyway I think for anyone with any kind of illness ESPECIALLY CANCER! you need to abide by my commandments they so far have worked for me and I think the can be inspirational for everyone 1. Attitude attitude attiude(that should be one two and three) 2.Dont look on the internet(unless your on a cancer website like canadian cancer society, or american cancers society, the web is full of useless bullshit that will only bring you down, and most of the time the information is completely inaccurate)3.Dont listen to anyone else (this One is kind of contradictary. HOwever if you go into this with out knowing anything then you only have one prespective, and that perspective is the only one that is important.YOUR PERSPECTIVE. Preconceived notions about what your treatment is like is only a recipe for disaster because everyone has a different experience!) for example I am 4 treatments in honestly I still have all my hair which sits 22inches down my back, and I haven't felt this good in about 5 months. 4. Listen to your doctors they are the m,ost wonderful, most valuable , honest people you will come across. Sometimes brutally honest but when you have cancer thats what you need. if they say they can get it, they'll get it and dont ever let your mind wonder from that. Also remember that HODGKINS LYMPHOMA IS ONE THE THE I STRESS CURABLE KINDS OF CANCER!!!!!!!! so sonsider your self blessed and lucky for your situation because it can always be worse.
Those are just a few words of my wisdom and anyone who reads this and needs some word of incouragement, someone to talk to or vent to can email me at email@example.com
IM 27 FEMALE half way through my 8 chemo treatments and know that i am going to be fine. And with an awsome attitude you all will too. This persons storey is an inspiration to everyone and she is a true warrior. ANd We all will be too!
Gene W Strasser (author) from Lake Orion, Michigan on October 23, 2010:
I don't know what to say. I feel bad that you have been diagnosed but with a positive attitude, which you definitely have, you will make it through this. It will be tough but it is easier today than it was 10 or 15 years ago. The first time I was diagnosed the treatment was rough. I had the same chemotherapy back then as I did this time but there weren't as many drugs to treat the symtoms. There is much better treatment now so you won't feel so nauses.
Going into particular detail about my treatment, my chemotherapy day was every other Thursday. Each time, I actually had a big dinner after and enjoyed it. The loss of appetite didn't hit until the next day on Friday. Surprisingly the appetite came back by late Sunday and I then felt fine. So, the number of rotten days will only be three days out of every 14 days. During these bad days I still ate but I couldn't tolerate anything sweet. That was the one thing that made me sick and it didn't taste right. One thing you will notice is that foods will taste different during those three days.
The only other symptom that really affected me was sleep. I slept a lot, probably 12 to 14 hours a day during the weekend after each treatment. A few times I developed a low level fever because I didn't get up to drink some water. I had become dehydrated. Once I drank something my temperature would almost instantly return to normal.
There are three more things I have to mention. First, don't use any kind of long term antacid while be treated like Prevacid. Second, make sure you have short hair going into treatment. Third, you will be given steroids so you might not sleep initially.
After two cycles of treatment I was given a six week break. I had bad heartburn so I took Prevacid. This was a mistake because after my third cycle I developed horrible stomach pain. Chemotherapy affects your digestion so you don't want to compound it by using an antacid. Tums or Rolaids should be okay though. Cutting your hair is obvious because you are going to loose it anyway but be aware , it will fall out in one day. Both times for me it occurred about 19 days after the first treatment. So be ready for that. To treat your nausea they will be giving you steroids. After the first treatment I didn't sleep that Thursday night. Luckily for me it only happened once and I adjusted. Hopefully you will too.
The ABVD treatment is probably the best one with the least side affects. However there is a lifetime limit a person can have. In my case, since I was diagnosed twice, I was treated with another three cycles of what is called ICE. ABVD is a much easier treatment than ICE. ICE was hell. But I got through it and last Friday I had the infusion port in my chest removed, my last PET scan came out clean.
Sorry for such a long comment. If you already started treatment then you know all of this by now. For me, I was actually excited after the first treatment because my cancer symptoms were getting worse and I desperately wanted to start treatment. Even after only one treatment, or a half a cycle, the swelling in my groin went down dramatically and most of the symptoms went away. I just want you to be aware, once those drugs are administered for the very first time, you are well on your way to recovery.
I hope this advice helps and I wish you well. I hope you get through this with very little pain and discomfort. Make sure you have family and friends nearby. That obviously will help also.
18 male diagnosed with HL on October 21, 2010:
18 male diagnosed with HL on October 21, 2010:
your story really gave me strength to fight the "beast" and glad for you to survive for second time in almost 3 cylcles..i see you didn't complain about any of chemotherapy side effects except nausea ..is there anything else?:) and if you can give me some advices to follow through my ABVD journey&after it,i would be glad ..thanks, peace:)