Treatment #1 - Friday, March 31st
Anxious didn’t begin to describe the multitude of emotions I was experiencing prior to my first chemotherapy session. While I had received four information sheets describing the long and short term side effects of the ABVD, I was completely unaware of how I would be affected as I was told the side affects varied substantially from person to person. I had heard that some people continue to work, albeit a lighten load, during their treatment, while others suffered substantially, spending a fair amount of time in the hospital. A second front added anxiety, the desire to begin my treatment as soon as possible and get going on my way to beating this disease.The treatment began at 3pm, and after an hour or so of intravenous hydration, the injection of the chemo drugs began. The first three, the adromyacin, bleomyacin, and vinblastine, went in quickly and painlessly. The DTIC, however, was a different story. First off, I elected against having a catheter inserted in my chest, so all the drugs were injected through my forearms. The DTIC is notoriously the most toxic to the veins, and this proved to be quite problematic going forward. The rate of infusion is self-controlled, and I was told to let the chemo flow as long as I could tolerate the pain. This process took about two hours and was quite painful.
I soon found out that eating a large meal before the treatment was not a good idea as I shared the meal, a much less pleasant version that is, with everyone else in the injection room. One potential benefit to anyone who is trying to rid themselves of a certain food, like chocolate or sweets, is to eat that food before the session. To this day, I still can’t eat my favorite pizza or carrot juice. Odd combination, I know, but my mother read that carrot juice is an effective anti-carcinogen. My ex post facto aversion to carrot juice was so strong that the mere sight of it two days after chemo induced another vomiting session. However, the inclusion of some Adavant (I think) eased the vomiting and allowed me to slip into a trance-like state. I highly recommend including this in your regimen if the DTIC proves problematic.
Upon arriving at home around 8 PM, I soon found myself starting to chill. Shortly thereafter, I found myself shivering and shaking uncontrollably and fairly violently. After about an hour and 15 minutes and three Tylenol, my fever, which peaked at 102.4, and the shakes (later identified as rigors) subsided. I recommend asking your nurse for the Amgen chemo kit that includes a digital thermometer. The thermometer proved very easy to read and accurate.
The next day wasn’t too bad, but the following day the nausea and general discomfort peaked. By the fifth day, I was feeling better, but my fingernails and mouth started to hurt. The mouth pain was normal, but the fingernail pain was not. The mouth pain, which included my teeth and gums, continued for a few days and made talking quite painful, but generally improved as time went on. By day four, my right forearm, a few inches from where the chemo was injected, started to hurt, swell and turn red. The arm pain and irritation peaked on day six. On day eight, I saw the doc for the routine mid round evaluation, and the arm pain turned out to be a partial clot in my vein, or fibulitus, considerably irritated by the DTIC. A three-day steroid prescription and a lot of hot packs helped rectify that problem. On day nine, I attempted to play basketball but that proved to be a mistake as I was exhausted for the next two days.
The tumor at the base of my neck already appeared to be decreasing by the end of the first treatment. My hair was still holding on strong.
My parents and siblings continued to do research and heard from a multitude of sources that Aloe was very helpful in reducing the nausea. My sister sent me two bottles of the Aloe, but unfortunately it was not very effective for me. However, as with a lot of suggestions, it usually doesn’t hurt to give it a try and sometimes you will be pleasantly surprised.
Anxious to get this whole ordeal over with quickly, I begged my doctor to speed up the treatments, shortening this cycle from the normal 14 days to 11. However, my white blood cell count turned out to be 1,400, too low for treatment since the cutoff was 3,300. So, I received my first shot of Neupogen, a catalyst to increase white blood cell production, and went home.
Treatment #2 – Friday, April 14th
Neupogen, as I found out, was a wonder drug. God bless Amgen! I was able to start my chemo at 3:30pm, but again I encountered a fair amount of problems. The DTIC again triggered the same shaking and slight fever. The nurses were more alarmed than I, and proceeded to give me some morphine which only seemed to induce quite a prolonged period of vomiting. The whole process lasted about seven hours.The following day was not too bad as I was able to hold down a little food and water. However, the following four days were not good. Continued vomiting precluded me from holding down any food or water throughout the period. Finally on day five the vomiting stopped, and I drank water, a lot of water. The following days I continually improved.
On day seven, my lower right leg became quite painful and started to swell. On day eight the leg was worse, so I saw the doctor. My white blood cell count was 1,400 and so I received a shot of Neupogen and learned how to inject it myself so I could do so for the next few days. I also started taking two different antibiotics, Augmentin and Cipro, and was told that if my fever hit 101 I should go to the emergency room without question. That night, my fever steadied at 100.7 for most of the night, so I couldn’t fall asleep since I had to continually check my temperature. The following day the leg swelled more, and my fever varied between 100 and 100.5 with Tylenol. I also had my white blood cell counted tested which was up to a healthy 6,700.
Two days later, I finally gave in and went to the doctor again. Pressure on my leg from walking resulted in excruciating pain, however when I elevated my leg in bed the pain was not too bad at all. Once I arrived at the doc’s office, I was in for a surprise. To about 15 nurse's and doctor's thrill and joy, my leg was apparently quite a site. Swollen from my knee to my foot, everyone wanted to cut open the half-dollar sized white head that was four inches north of my anklebone. So I was admitted into the hospital for two days. That night, thankfully, the leg was cut open and drained, which alleviated about 90% of the pain while walking. Why wouldn’t they let me do that about four days prior I wondered? One word on the hospital, stay out if at all possible. The oncology ward is quite depressing for a relatively healthy Hodgkin’s patient as many others there are faring far worse. Also, sleep is a luxury not afforded to patients of the oncology ward, primarily due to all the unnecessary nighttime noise. Namely, loud hall conversations and the ridiculous 12 midnight and 6 am trash pickups were the problem. First, is it really necessary to announce their arrival and second, why these times? At least for myself, I did not accumulate a lot of trash between 12 midnight and 6 am, so why not come in the morning, or afternoon? Thankfully, this was just a minor setback, and it only postponed the chemo until the following Monday.
By the end of this treatment, the tumor at the base of my neck was nearly gone. My hair, as expected, started to fall out fairly slowly. The skin itch finally started to subside towards the end of this treatment which was an unbelievable blessing. The arm pain associated with DTIC continued and made sleeping difficult.
Treatment #3 – Monday, May 1st
No more delayed treatments due to low white blood cell counts this time thanks to good old Neupogen. My wbc was at 21,000, more than double the high end of the range for a healthy person but down from the 63,000 from the previous Friday. Given the difficulties of the previous treatment, a few things changed which proved to work well. First, I took two Tylenol before the DTIC started to help eliminate the rigors. Second, I was given a steroid during the hydration period along with the regular Kytril (anti-nausea). Third, no big meals right before the chemo, rather I decided to eat small portions (crackers and fruit) during the entire treatment as well as small quantities of water. And finally, the injection rate of the DTIC was slowed dramatically. While trying each of these fixes one at a time would have helped to determine what worked, one or all of them helped substantially and were continued throughout the remaining rounds.This round was uneventful with not too much to report except that I did not throw up once. I was able to keep all my food and water down which helped substantially. From this point forward, I tried during the second week of each round to take a walk down to the beach, stopping at Jamba Juice for a Power size Strawberries Wild and the newspaper. It was great to get outside and walk around and enjoy some great California sunshine.
One new development this round was leg weakness and lack of coordination. This was particularly true during the first few steps of a walk, but stairs also proved problematic and several rather painful tumbles resulted. This side effect continued throughout the remainder of the treatment. Neupogen also became part of my regular routine. At first, I was injecting myself six times a round but that generated excessive amounts of white blood cells. Later, I was able to perfect the injections, providing a relatively consistent and high level (around 10,000) of white blood cells through the round by injecting on days five, seven, eight, and ten.
The tumor at the base of my neck was gone visually, and just about completely gone to the touch. My hair was falling out in clumps at an unbelievable rate. It truly amazed me how much hair a human actually has since I could run my hand through my hair repeatedly, each time pulling out hundreds of hairs.
Treatment #4 – Monday May 15th
This treatment, like the one before it, was relatively uneventful which is obviously a good thing. One big development, though, occurred when I was receiving the treatment. I started talking to the fellow next to me who also loved to mountain bike in his prior life. More importantly, he said that he handled the treatment fairly well, which he attributed to eating excessively whenever he started feeling sick. While I had heard this before, after each treatment I was generally ambivalent as to whether I was hungry or not, so I wouldn’t eat. However, I soon realized that eating was a good thing and reduced the nausea. From this point forward, I ate as much as I could whether I was hungry or not. This helped reduce but by no means eliminate the negative effects of the chemotherapy. Eat, and eat whatever you can, I learned. You’ll have plenty of time to work off the spare tire once you’re done. Overall, I lost about ten pounds during the treatment yet still acquired a small spare tire. I ate more ice cream in my five and one half months of chemo than I had in the previous 29 years, but it was definitely worth it as it really made me feel a lot better. Due in large part to the eating, this was my best treatment yet. My strength returned faster, and I actually made it out for a quick nine holes of golf. Although I was very tired for two days after this, I highly recommend any activity you can do that makes your life seem a little more normal (even if it is as frustrating as golf!).Leg pain and some bone pain, probably attributable to the Neupogen, generally persisted from here on out. I also had a hemorrhoid from here on out as well, which wasn’t a whole lot of fun either. Hot Epsom salt baths worked well, but generally they only provided short-term relief. Thankfully, all of these side effects went away quite quickly after the chemotherapy stopped. Since the first treatment, the arm pain had become more persistent and painful. Even though the injections were in different veins with each treatment, the cumulative effect of the DTIC appeared to be building.
At the end of this treatment, I had a cat scan to determine the regression of the tumors in my chest. Two days prior to the test, paranoia set in. I started feeling chest pains again and believed that the tumor was returning in my neck. All false, thank God. The results of the scan were promising, showing that the large tumor in my chest had decreased from 11cm by 4.5cm to 4cm by 1.5cm. Assuming the tumor was completely rectangular which it obviously is not, that’s a 96% reduction in volume after two months. The measurements of 11cm by 4.5cm are of the tumor’s greatest length and width, and I assumed in the calculation that its depth was the same as its width. Regardless of the exact reduction, it was very substantial and everyone was thoroughly pleased with the results. Furthermore, Hodgkin’s notoriously leaves behind substantial scar tissue, therefore the remaining mass was hopefully just scar tissue that should slowly shrink over time.
Treatment #5 – Friday, May 26th
While I continued to eat excessively, I did not feel quite as well throughout the early stages of this treatment. I was sick more frequently, and generally felt worse. As hard as I tried, I could not attribute it to anything I had control over. However, the final days of my treatment were much better, and I actually had the strength to take a day trip up to Santa Barbara.Throughout the first five sessions, I had severe difficulty concentrating and lacked focus (much more than usual, I should say). While I felt extremely sick, I understood that. But on the days in the second week of the treatment when I felt better, I couldn’t figure out why reading a book or a newspaper or a magazine was so difficult. There’s only so much CNBC a person can watch in a day before insanity sets in, so this lack of focus just further exacerbated my frustration. Visitors helped significantly. My memory was also very weak, and forgetting the most basic things was just something I had to accept. It was strange since I knew I had stored the knowledge of what I was trying to remember, but for some reason I just couldn’t recall it. This lack of focus and poor memory didn’t help in the preparation for Level II of the Chartered Financial Analysis exam (a three part test covering investment analysis). Studying for this test was, shall I say, unproductive, and so after just a few hours of "studying," I decided to postpone the test until next June. Of course, our money grubbing friends at the AIMR didn’t buy my sob story and kept my $400 enrollment fee. Anyone going through ABVD shouldn’t worry too much about this memory issue since my doctor said this phenomenon just affected myself and was not a normal side effect of the chemo. At least I think that’s what he said, I can’t remember.
My 30th birthday came and went, and I must say it was not how I had anticipated spending it a few months earlier. My friends though, somehow managed to pull off a surprise party with about 30 or so people. It was a lot of fun and great to see everyone, but as with most anything those days, it was very tiring.
At this point, my neck tumor was completely gone, the chest pains were less and less frequent, and my hair was still falling out but decent coverage remained.
Treatment #6 – Monday, June 5th
This treatment went fairly well. While I had learned the painful lesson of overindulgence with food during the treatment, I had developed a pattern of eating which seemed to reduce the nausea while the toxins dripped into my body. I usually started out with the fruit plate, for some reason I craved it and it appeared to be easy on my stomach. After that and for the duration of the treatment (for me, some lasted nearly nine hours), I would snack on something basic, usually saltines. Water also seemed to help as I usually had a cup an hour. This way, I felt, my stomach was keeping busy but not overwhelmed to the point of revolting and returning the food and water to me. Different things work for different people, so this is just something to try if you are having problems.Eat, eat, eat, that’s all I did. After the initial few days, the middle part of the treatment went relatively well, relatively being the operative word. Oddly though, the days 11 – 14 were not that good, and unfortunately, these coincided with my graduation from the Anderson Business School. So, I missed the ceremony and the diners and everything else. It was frustrating because I had been shortening up my chemo cycle from the standard 14 days so that my graduation would fall on day 11 of the cycle, hoping to be able to make it. However, as I knew my health and strength during the treatment could be very random, it was just one thing I had to accept.
Treatment #7 – Monday, June 19th
The treatments were becoming fairly routine and mundane with very little to report. My strength however, was much stronger in the last few days at the end of the period. Again, this was inexplicable in terms of things I could control such as eating or sleeping. This strength was welcomed as it was not expected since I knew the toxicity of the chemo was cumulative, generally resulting in more harsh side effects and less strength in the latter stages. However, I justified and rationalized it as the cancer itself was weaker and probably had a much less negative impact on my body.While my hair on top of my head had remained fairly thick, the sides had become very noticeably thin. On July 1st, I woke up and without much thought, shaved my head. With a relatively tan face and body, my paper white scalp looked quite amusing. The arm pain continued to get worse, though, and every day I regretted not getting the catheter before the treatment started.
Treatment #8 – Monday, July 3rd
With this potentially my last treatment, there was nothing else I could think about. Thankfully, the treatment itself went fairly well, but the first few days after were a little more harsh than usual. Once that passed, everything was downhill. Worst case, I surmised, would be that I would have at least 17 days before my next treatment since I had PET and CT scans scheduled for Monday the 17th. Best case, I would be done with the chemo altogether and just have four to six weeks of radiation.The PET and CT scans occurred on July 17th as scheduled. My appointment with my doctor was not until the 19th, so I had two days to think about the results. The emotions ran the gamut, of course, but I did my best to accept the fact that at that point it was out of my control and so I tried not to worry about it. As with this and many of the other waiting periods during my treatment as well as many other instances in life, I found the best thing was not to worry about an outcome over which I had no control. Pretty basic concept, I know, but with the ramifications associated with these tests it was more important than ever. Whatever little time I dedicated to the pending outcome, I concentrated on knowing what questions that needed to be asked once the outcome was delivered. Most of the time was spent keeping busy with friends and not thinking about the magnitude of the outcome.
Great news from the doc that Wednesday as the main tumor in my chest had decreased in size from 4cm by 1.5cm to 3cm by 1cm. More importantly, the PET scan showed absolutely no abnormal metabolic activity that meant that all residual masts in my neck, chest and groin were most likely just scar tissue. So, what did this mean?? To my absolute and complete surprise, I was told I was done!! No more chemo and no radiation at all. To say I was shocked was a gross understatement.
A few of my friends threw a party to celebrate my remission. Even while I was having my first glass of champagne, I wasn’t completely comfortable with the events of the day. I was thrilled beyond explanation to be done with the chemo, but yet I wasn’t sure that this was the best course of action to avoid a relapse. After all, I only found two other people (through their own Hodgkin’s journals) that had only had four cycles (months) of ABVD, and one of them had radiation as well. In addition, both were only Stage II while I was Stage IIIB. So, the following day the phone calls started again.
Most of my family doctor friends were hesitant to contradict my own doctor and rain on my parade, but it was obvious they thought six months was still the protocol. Through a friend in Houston, I was able to speak with a few doctors at MD Andersen; one of whom was supposedly the doctor who prescribed four cycles of ABVD for one of the patient’s whose journal I read. However, liability concerns, I assume, did not aid in the flow of concrete information, but the general take away from these MD Andersen doctors was six, or possibly eight, months of treatment was standard for Stage IIIB. When I asked the one doctor who supposedly (according to the patient’s journal) prescribed the four treatments plus radiation, he denied having prescribed that, and also that he was not allowed to discuss other patient’s treatment.
With this information, I delicately asked my doctor for the research regarding the new studies he referenced four months earlier indicating four versus six cycles would do the trick. After some discussion, he said that four cycles would be fine for Stage II, but six would probably be better for Stage III. Since a biopsy was not performed on any of the masts below my abdomen, Stage III was never confirmed although assumed. For Stage III, he agreed on two more cycles of chemo. I questioned why not just one more month, and he said he would prescribe two and I could refuse the last cycle if I desired. There was only one thing that I wanted more than to be done with the chemotherapy, and that was not to have a relapse. I certainly am not a masochist, but I absolutely did not want to have to go through this process again. To me, the chemo was tolerable and therefore I accepted the short-term discomfort in exchange for long term health. The decision I had to make had to do with decreased risk of a relapse, say 30% to 20%, versus the long-term effects on my heart and lungs of the toxicity associated with the Bleomyacin and DTIC. Which was worse and when do you stop? With the numbers on both sides of the equation rather fuzzy, it was a question that could not easily be answered. Although I believed that I was already cured given the results of the PET scan and the incredibly fast reduction in the size of the tumors, I felt the tradeoff would be worth it for one more month. I had all the confidence in the world in my doctor, but since I couldn’t find anyone else who agreed with the four months, I thought a compromise at five months was the way to go. I think my doctor still thought four cycles was the best course given my progress, but he agreed on the additional sessions either to shut me up or avoid any potential liability issues in the event I had a relapse (something I would never do).
I had a second Muga heart test on July 27th to see what effect the DTIC was having on my heart. To my doctor’s and my surprise, my heart was actually pumping out 5% more blood per beat than it was when I was originally diagnosed. While this was unusual, the fact that the cancer was gone, especially the large tumor next to my heart, more than offset the degradation to my heart from the DTIC.
Treatment #9 – Monday, July 31st
From start to finish, this treatment was either my best or my second best treatment overall. This was most likely attributable to my increased strength going into the treatment since I had two additional weeks between injections. There was nothing really new on this one as I believed myself to be quite the chemo veteran, and as with the past few treatments, there were no real surprises.Treatment #10 – Monday, August 14th
This was it, and I knew it. I had the finality that most chemo patients only dream of since they never know what treatment will be their last. But I knew, and I was ecstatic. These last two treatments, in my opinion, were just insurance since I was fairly certain that the cancer was gone after the four months. Even though I felt mentally that I was done, my body had a slightly different reaction. For starters, the injection itself did not go nearly as well as the previous half dozen or so had gone. The pain in both of my forearms had become so great that I don’t think they would be able to tolerate even one more treatment. My veins protruded and felt like small, hard pipes in my arms. This resulted in a very slow infusion rate for the DTIC, and this extended time contributed to the vomiting. However, my physical ailments in no way could hamper my emotional state. Whatever was happening to me physically, I knew I would be feeling decent in a few days and only improve from there. That was the key: every day from here on out I would improve, regaining my strength on a daily basis. While the end of each of the previous nine rounds was always incredible, I always knew it was temporary and soon I would be receiving another injection. However, this was it. I was done!