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Patient Experiences & Guidance

Tony's Story - My CVP experience in the randomized Idiotype vaccine study

Hi Ted, this is Tony replying to your post on beginning your CVP. I am in the Genitope trial and had my first CVP chemo last February 8, 2002 (my 45th Birthday). Third vaccine shot (hopefully vaccine) is on March 10, 2003.

I was going to originally post in reply to your questions on the Genitope trial, but it sounded like you had already done a ton of research (more than I had, anyway) and probably didnít need my input. I was surprised when you posted that you had had your first CVP treatment, because it sounded like you were going to possibly try another approach. Well, now that you are in the Genitope trial, WELCOME ABOARD! Hope you get the vaccine.

First a little about why I chose the Genitope trial. My second CT scan after initial diagnosis showed my disease was progressing and I had what was considered ďbulky tumorsĒ. It was time to make a decision and I went looking for a clinical trial. Almost from the moment I was diagnosed I decided I was going to do a clinical trial. My thought was at the very least I could some part in furthering the progress towards a cure although with the understanding that probably wonít occur during my generationís time.

I finally decided on a vaccine trial based on some research I did, certain input from this group, and a comment that I remembered from the LRF Education Forum in Chicago, October 2001. Dr. David Maloney, from the Fred Hutchinson Cancer Institute in Seattle said something to the effect that if he himself had indolent NHL and had to make a treatment choice, heíd opt for something that had a vaccine component to it. I had hoped to avoid the chemo, but there were no Phase I or II trials available for me at that time, so that just left the NCI or Genitope Phase III vaccine trials with the randomization and chemo aspects. Again, based on research I had done, plus input from this group, I decided to save CHOP for later use if necessary and so, went with the Genitope trial.

Once I made the decision to join the trial, then I knew chemo was coming. I had about 2 months or so before I had to have my first chemo and, based on feedback and info I gathered, I was nervous, stressed and scared of the chemo. I was worried about neuropathy, nausea, damage to tissue and organs, and long term effects. The hair loss aspect didnít bother me all that much, but I suppose nowadays with so many men shaving their heads it not as big a deal for men. As others in this group can agree with, coping skills become so important with the situation we are in, and I knew I had to come up with a way to deal with my stress about the upcoming chemo. As luck would have it, on subsequent doctor visits I had 2 different oncologists in 2 separate visits both comment that they thought I would tolerate the CVP pretty well. It took about a week for these comments to sink in and finally I came up with the following thoughts that ended up working for me throughout my chemo: I KNOW ALL OF THE SIDE EFFECTS THAT MIGHT .

From what I remember, there are a few other people in the Lymphoma Vaccine group who have had CVP and tolerated it pretty well like I did. Now on to my CVP experience.

I always had my chemo on a Friday, figuring Iíd have the weekend to recover somewhat and be ready for work on Monday. I only missed work on the days I took chemo. I always tried to get a good nights sleep before my chemo day. I ate a light breakfast before chemo, usually toast or cereal and some fruit. I always brought someone with me to chemo for support and just in case I got ill during the chemo. Another thing I brought with me was a heating pad. My arm receiving the chemo always got to feeling cold and soon the rest of me would get cold, so after the first 2 chemo treatments I brought the heating pad to keep my arm warm. By the time the IV was started, it was about 9:30 am and I was through around 11:30 am. During chemo I would visualize the cancer cells being attacked, killed, and eliminated from my body. After chemo was done I was always hungry, so whoever went with me to chemo accompanied me to lunch. I usually had soup and something light to eat. I would get home in early afternoon and take a nap u

NAUSEA It was not much of a factor in my case. I remember only 2 times I got queasiness of any significance and both times it was my own damn fault. The first time was the Friday night of Chemo #1. Friends took me to an Italian restaurant for my birthday, my stomach felt just a tiny bit odd, but nothing of great note, so I ended up eating too much rich food. I was queasy by the time I went to bed that night and took some Compazine. I never threw up that night, although I came close once or twice. The second bout of significant queasiness was right before Chemo # 8. I brought in treats for the staff and oncology nurses at the cancer clinic and, feeling somewhat cocky, ate one of the rich pastries myself. By the time chemo was done I was feeling queasy, but again I was able to fight off the urge to vomit. But really, I never had much nausea associated with my chemo treatments. (I just checked my Compazine prescription bottle. I still have 13 of 20 pills left.) I never lost my appetite nor lost any weight tho.

VINCRISTINE This is the chemo component I was warned about the most. The two things mentioned, that I remember, were neuropathy and constipation. With neuropathy, I might have been getting hints of it after chemo # 6 but I wasnít positive. After chemo # 7, though, there was no doubt it had arrived About 7 days after treatment I had significant aching in my fingers and forearms, and a small amount in my feet. My oncologists checked with Genitope and we were able to reduce the Vincristine by half for chemo #8. As far as constipation, I never had trouble with it. I donít know if it was just my constitution or the fact that I made sure my diet had a lot of beans and roughage in it, especially for the first week after a chemo treatment. I bought a recipe book called ďEating Well Through CancerĒ by Holly Clegg and Gerald Miletello, M.D. (ISBN # 0-9610888-7-7) I thought this book was pretty good. It organizes recipes in chapters according to whether you currently have diarrhea, neutropenia, constipation, so

PREDNISONE I got a lot of input from several people on this one. Things such as it making you feel like you are on top of the world, giving you extra energy, causing you to put on water weight, if you come off of it too fast youíll feel depressed, and finally, damage to your kidneys (or was it your liver). In my case, at 100 mg for 5 days, it really didnít affect me all that much. I never gained water weight. I canít say for sure that it gave me an energy boost, although I will say that about 2 days after I was done taking the Prednisone (which for me worked out to be the Thursday following chemo) I was the most tired. The Thursday after chemo # 7 was the worst day I had for being tired at work. That was the only time I felt so tired and miserable that I wanted to go home, although I didnít because I got involved in a work project that day where my help was greatly needed. One thing I did notice was trouble sleeping while on the Prednisone, so during that time I took Lorazepam (anti-anxiety medicine)

ALOPURINOL Because I had bulky tumors, I had to take alopurinol for my first 3 chemo's. This was to protect my kidneys from the large amount of dead cells that were going to be processed by my body as the tumors were wiped out by the chemo. This also reminds me: DRINK PLENTY OF WATER DURING YOUR CHEMOTHERAPY. You want to help flushing the dead cells from your body. At work we have water coolers and an ice machine so I had plenty of cool, fresh water at hand. I also told a co-worker friend, who had asked how she could help, to keep reminding/nagging? me to drink plenty of water. I easily drank more than 64 fluid ounces per day, but right now I canít remember how much more. I continued to drink large amounts of water for several months after chemo was done and even now drink more water than I used to.

SORE MOUTH In my case it was more like ďtender mouthĒ. Again, chemo for me was on a Friday and by Sunday evening I could feel the inside of my mouth becoming sensitive to hot and cold fluids. The peak sensitivity would be the following Tuesday, but by the following Friday (1 week after chemo) my mouth was back to normal. I remember during peak mouth sensitivity that my mouth would momentarily sting the most when it was first touched by the hot or cold fluids, but after that it wasnít so bad. I remember Jell-O, pudding (vanilla, not chocolate), vanilla ice cream, non-citrus fruit juices, and other cool drinks feeling good on the inside of my mouth once the initial sting had passed. Here is another suggestion to possibly reduce the amount of mouth tenderness that might arise. Suck on ice chips during your chemo. I had read this someplace and a fellow cancer survivor mentioned this to me, but this wasnít until I had already gone through 6 chemo treatments. I tried it for the last 2 and felt it helped [quite a bit].

NEUTROPENIA Again, I didnít have a lot of trouble with this. Chemo # 5 was delayed a week due to low white blood cell counts. I guess for most people, their nadir for their counts occurs around the 10 day mark after chemo. In my case, my 10 day check up would show the counts being good, but several times the blood work the day before chemo would show my counts to be too low to take chemo. Two or three times I went to the clinic the morning of my scheduled chemo and had my counts checked again just to see if they might possibly have risen enough to still get the chemo that day. Surprisingly the counts were now okay and I was able to take the chemo that day. (I wanted to try and stay on schedule as much as possible so I could get the chemo over with.) If you do have problems with neutropenia take precautions. Wash youíre hands often. I was also told by a few different people to avoid lettuce and other uncooked vegetables, and eat only fruits you can peel such as oranges and bananas. In the book ďEating W FATIGUE I was chugging along through the first 4 to 5 chemo's with no major fatigue problems, but after # 6, I would occasionally get fatigued. There were a couple times during my daily dog walk that I wanted to stop about half way through, sit down right where I was, and take a nap. Then I knew I was fatigued. About 5 weeks after I was done with chemo was the last time this amount of fatigue presented itself. Iíd have to say that for me it seemed I didnít get back to my pre-chemo stamina until about 2 to 2.5 months after chemo was done.

CHEMO BRAIN I think I had chemo brain before I had chemo! I canít say that my memory is any worse now than it was before the chemo. I think my memory problems are more related to stress and being somewhat disorganized.

HAIR LOSS In anticipation of losing all my hair, I had it cut short about a week before I started chemo, figuring Iíd first get people used to me with shorter hair before I lost it completely. I started noticing a little more hair on my pillow sometime after chemo # 2. After chemo # 3, I would occasionally reach up with thumb and forefinger and pull on some hair. No clumps would come out, but only a few strands. What ended up happening in my case is my hair thinned a small to medium amount through chemo # 4, but after that it held steady. As a result, people who didnít know me had no idea I was going through chemo. Most likely they thought it was an increase in the advance of male pattern baldness. Anyhow, I think my hair was back to its normal thickness within 3 to 4 months after chemo, although I donít think it is as curly as it used to be.

Well Ted, I hope some of what I have written will be of use to you or anyone else coming along who has to take CVP. Iím glad that you chose a treatment that involved a clinical trial because at the very least you have helped in the march towards a cure. I donít like the randomization aspect either, or the fact that crossover is not allowed. But in my situation, at the point in time I was forced to make a treatment decision this seemed to be my best choice. For me it was actually more stressful trying to determine which step to take for a first treatment. Once my decision was made and I started this clinical trial I could just sit back and see what happens, while using the power of this group to help keep me informed so Iíll be ready if/when a second treatment decision is required.

For a while I occasionally had second thoughts as to whether or not I made the right choice, but those thoughts donít do me any good. Besides, as my girlfriend pointed out, by joining this clinical trial I may possibly have added another weapon to my arsenal for the battle that I am in. Another thought came to me a few months ago. No matter what my outcome may be in this trial, itís possible my current participation may assist in future refinements to this vaccine therapy which in turn may save my life 5, 10 or 15 years from now. You never know ... Like I said, coping skills.

Tony Glavan

Dx 7-17-02; Indolent follicular NHL; Stage 3; Tx: Currently enrolled in Genitope trial: 8 cycles CVP beginning 2-8-02, ended 7-12-02; First vaccine shot 1-16-03.

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