High Dosed Therapy... (for Allo Man)

Dear Witek,

Sounds like you're on a long, strange trip. I'm sorry to hear you're having such a tough time. When I was first diagnosed with HD (12/00, nodular sclerotic,stage IVB) I was told more than once, if I was going to get a cancer, this was the one to get, because it's so "treatable."

I've had the drugs of CBV as you've described them. I think there were part of a combo referred to as Stanford V here in the states, so I can't say specifically their side effects on me.

When initially diagnosed, primary involvement was glands in my abdomen with tumors in both lungs (I had symptoms for 2 years my doctor ascribed to viral infections). I relapsed 6 months later. I got the standard "salvage" (or "rescue") chemo her in the States, ICE (I think the "I" is ifosfomide, "E" is etoposide, don't recall what the "C" is...I assume this is the "ICE" in "DICEP"...it was the toughest chemo I've had). That only did half the trick, so I got what was referred to as DI-CE. That got rid of 85%-90% of the tumors. I then got high dose BEAM and an auto transplant. Relapse 10 months later. Three tumors in my liver. Possible tumors in a lung.

Because my Doc was giving me CT scans every 3 months, the tumors weren't big. I was put on another "rescue" regimen, an experimental combo of gemcitabine/navelbine/doxil. I was able to get back into remission after 2 1/2 cycles. In May I had an allogeneic bone marrow transplant (thus the "Allo Man" name...my sister was a ready, willing and able donor).

I've tolerated treatments well so far, they just haven't worked very well. My auto transplant was without complications, infections, mouth sores. It was done on an outpatient basis. I was pretty weak and queasy (bald as a billiard ball too) but once your counts come back, you get back to normal. My transplant was in February and I think by May I was back to work full time. The auto transplant was a drag, not terrible. Even the allo transplant went well (other than being stuck in the same hospital room for a month, being given the worst food I've encountered in my 37 years).

I assume what you mean by "radiotherapy" I would refer to as "radiation." I relapsed in my lungs and liver, two areas that don't tolerate radiation well.

Prior to my allo transplant, I did some homework and came upon some trials of a CD30 vaccine, but decided to give the transplant a try. Here in the States I believe Memorial Sloan Kettering Cancer Center in New York City and the Mayo Clinic in Minnesota were doing trials. I can vaguely remember reading a synopsis of medical journal article on it. If I remember it correctly, the results of some animal studies were that only 10% got into full remission, and that lasted only an average of three months.

MD Anderson Cancer Center in Houston, TX, is doing a trial on the use of Rituxan and Zevalin for HD. They're drugs approved for Non-Hodgkin's Lymphoma. It's my understanding Rituxan latches onto a genetic marker on the tumor. Zevalin does the same (or does it latch onto the Rituxan?) but is also impregnated (somehow) with a radioactive particle. I didn't go these routes, so I'm no expert on them.

As far as treatment options, I would suggest you try to get info on the gemcitabine/navelbine/doxil combo. It's the up and coming HD rescue therapy. I would suggest you or your doctor contact Dr. Arnold Freedman at the Dana Farber Cancer Institute in Boston, MA (it's a highly regarded cancer center here in the States, I went to see Dr. Freedman for his opinion after my 2nd relapse). His e-mail address is: arnold_freedman@dfci.harvard.edu .

On 11/17 I had a clean CT scan, so this will be the first December since 1999 I won't be getting, or planning on getting, chemo. I've been in remission since March. You're in a tough place. I hope you are graced with supportive friends and family. Take one day at a time. Try to think positive. Feel free to write me. You can e-mail me directly at rwarner09@hotmail.com .

I hope this helps you in some way.