November 13, 2006
Kathie and I had our two-hour “chemo class” last week. Most of the class was reviewing how the chemo affects the body, especially regarding blood cell production. We went over red blood cells, white blood cells, neutrophils, and platelets, and what the normal levels of each are in the bloodstream, and how each one is affected by chemotherapy. Since the chemo drugs kill lots of blood cells in addition to cancer cells, I’ll be getting a blood test halfway between each chemo session, and another right before the next session to make sure my counts are within allowable limits. The sessions are two weeks apart, and two sessions is a “cycle”. I’ll have 6 cycles of chemo, which means about 6 months. Since they know the chemo will affect my white cell count, I go back the day after each session to get a shot of Neulasta which increases new white cell production in the bone marrow. If the blood tests show the red count dropping as well, then they’ll give me something to counteract that. About a week after each chemo session is when the white count is going to be lowest, which will make me more susceptible to infection, so I’ll need to be sure to avoid sick people and other germ sources as much as possible.
I got prescriptions for Emend which is a relatively new nausea-prevention drug taken before chemo and again the following two mornings, which they said works extremely well at preventing nausea from starting, and Compazine which can be taken if needed after nausea starts.
My schedule is going to be something like this, recurring every two weeks:
- Monday: Blood test to check red/white counts
- Wednesday: Take first Emend (nausea-prevention) pill in the morning
Chemo via IV in doctor’s office for 4 hours or so
- Thursday: Take second Emend
Back to the doctor for a shot of Neulasta (white cell growth factor)
- Friday: Third (final) Emend
Compazine as needed for nausea going forward
Week 2
- Wednesday: Doctor visit / check-up and mid-cycle blood test
I’m hoping I can work Monday and Tuesday of week 1, and all of week 2, but I won’t know for sure until I see how the chemo affects me. A few people seem to be able to work 8-9 out of the 10 work days, most seem to work 6-7 days, and a few can only work a little. Some people on the Hodgkin’s forum say it’s common to sleep 16 hours a day for a couple days after receiving each chemo treatment (the fatigue is caused by the red blood cell count dropping dramatically after treatment). Time will tell!
All in all, I’m not too worried about it. The Hodgkin’s ABVD treatment is one of the less harsh chemotherapy regimens, and the drugs they have to counteract the side effects are getting better and better. I’m hoping I have minimal nausea and fatigue, except maybe for the day or two after treatment, and I’m not overly concerned about losing my hair!
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November 10, 2006
Well, I sent an email to my oncologist (I love having a doctor who does email!) asking about the implications of the new pathology report’s comments about spontaneous regression and immunosuppressive causes, and he replied saying, in short, I still need the chemo:
“That statement was something I had never heard of in Hodgkins Disease, to be frank. There is no literature to support it, while there is some data in people on significant amount of immunosuppression with a Non Hodgkins Lymphoma subtype called PTLD but that’s different. 6MP is a miniscule form of immunosuppression, by the way (PTLD is associated with immunosuppression associated with organ transplant levels of immunosuppression). My and others impression is that if you wait, you run the risk of relapsing with a significantly higher stage of disease (and not as curable, potentially)”
He reviewed the findings with five other doctors, three in his practice, and two at the Johns Hopkins Cancer Center, and all agreed that chemo is really necessary. One of the Hopkins doctors summed it up pretty well:
“I would treat with ABVD [chemo] and hold the 6MP [immonosuppressant] at least during treatment. Hodgkin’s responding to withdrawal of immunosuppression is an interesting thought but I don’t think I would pursue it except in the context of a study.”
I’m still trying to set up my consultation at Hopkins, but based on this, I assume they’re going to say the exact same thing to me. So… chemo starts 11/29.
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November 9, 2006
Two new sets of results in one day! I just got a call from my gastroenterologist. The pANCA/ASCA test results are back, and they are positive for Crohn’s disease. The pANCA/ASCA test isn’t a definitive test, but it’s a strong indicator (something like 80%) for Crohn’s. So, my GI doctor says I probably do have Crohn’s, even though the first pathology report said “no evidence of Crohn’s disease indicated”. Since I’m not having major symptoms from the Crohn’s right now, he says I should continue to deal with the Hodgkin’s situation and resolve that first, then if I have GI issues, we can resume some Crohn’s maintenance / treatments.
The roller-coaster ride continues!
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November 9, 2006
Today I got back the results of my follow-up tissue analysis, this time done by the NIH/NCI lab (National Institutes of Health / National Cancer Institute). They also confirm the Hodgkin’s Disease diagnosis, but they also add some interesting information on the connection with Crohn’s disease, and in particular with the 5 years or so I’ve been taking 6-MP immune suppressants and one year of Remicade anti-TNF treatment:
“There are cases reported as extranodal classical Hodgkin lymphoma arising in Crohn’s disease treated with long-term immunosuppressive treatment, and recently, also with anti-TNF administration. In immunosuppressed patients these cases are nearly always EBV positive and they may spontaneously regress after reduction of immunosuppressive therapy. Given the clinical setting of this patient, reduction of immunosuppression may be an option, especially if the EBV driven process is localized”.
So, I want to discuss this further with my oncologist to find out if I really need to start chemotherapy right away or if I can just stop my immune suppressants and then monitor the Hodgkin’s over time. Maybe I’m getting my hopes up too much, since I’m not really looking forward to chemo, but I do want to at least discuss this further to understand what it means.
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November 7, 2006
Well, my first chemo session is now officially scheduled for November 29th at 9:15am. Then I go back the next day for Neulasta to increase my white cell production. Tomorrow is chemo training class for two hours. That should be interesting. I was also contacted by a co-worker today who heard about my situation, and wanted to let me know that he was diagnosed with Hodgkins 7 years ago, went through chemo and radiation, and has been cancer-free since then! It’s always reassuring to hear success stories, and to be able to talk to someone you know, who has gone through something similar.
In other news, our post-surgery, pre-chemo vacation is finally coming together! We got plane tickets to St. Lucia although our original hotel plans fell through (the hotel had no vacancy for the final day of our vacation), so we’re looking for new accommodations. It looks like there’s quite a few nice places to stay on St. Lucia so we should be able to find something good.
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