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High Dosed Therapy... (for Allo Man)

witek
Posts: 3
Joined: Nov 2003

Sorry for these abbreviations... my doctors uses them while talking with foreign students at my Clinic (it is university Clinic) so I am used to them. CBV is a kind of chemio mix: cyclophosphamide, carmustine (BCNU) and etoposide (VP-16) just like BEAM (composed with BCNU, VP-16, cytosine arabinoside and melphalan) that is usually used as high dosed chemo, but not in my case. I got dexaBEAM, a kind of slight BEAM, during rescue chemotherapy but it did not worked: I had early relapse.
HDT is just high dosed therapy and it is of course followed by autoSCT i.e. autologous stem cells transplantation.
Well, so to describe my situation better… I was diagnosed 2B with 3-4 risk factors in January 2001 (2 little tumours on neck and 5,5 cm tumour in chest, night sweats, slight temperature round 37,2, dry skin) and got ABVD from February till August 2001, then radiotherapy from September till November 2002. Then I was said to be cured. Unfortunatelly after hard skiing in March 2003 I got some pain in my loins. It was getting stronger and stronger. Control resonance revealed 5 cm tumour outside spinal column but also penetrating it and pushing on spinal cord. Well it is an early relapse, HD stage 4, and quite rare case (only around 5% locate on backbone). I was planned to get not more than two or three chemo to mobilize the material for selection from blood for transplantation. But there were problems. I got five lines of chemotherapy: two times ESHAP with steroids, then DICEP (it was terrible), then the strongest one theoretically applied without necessity of transplantation i.e. dexaBEAM (I felt fine and HD felt fine too. It started to relapse two weeks later again in nearly the same place). They could not mobilize my stem cells from blood when my WBC was growing fast after Neupogen (made by Roche probably) but there we not enough of this stem cells CD34+. They also made punctions, but even in marrow there were not enough of them. At last, when it started to relapse after dexaBEAM, they even planned to do three operations to achieve the material... (so called harvests). After next punction it appeared that one will be enough. I was operated by four doctors, 5 hours, they pinned my back around 600-700 times and taken 3,5 liters of blood mixed with marrow. They got 2,4 mln CD 34+ per kilo what is minimum for transplantation. After that I got one more chemo: half of ESHAP” (i.e. without ARA-C) and steroids to stop relapse.
As you see my HD is very aggressive primary resistant as they say when it relapses even during treatment… well, primary resistant for chemo for sure. I hope that HDT followed by autoSCT will help, as it usually does, but… They already think about next step: new radiotherapy, but radiologists say that it would be dangerous, because that area was probably already radiated with mantle radiotherapy in August and September 2002 (they are gonna check it). I also think about immunological method (some CD30- antigens that are on Hodgkin cells are destroyed by other cells) that is tested right now. Probably in France. I wonder what are the costs. Have you heard something about it? Well I want to survive.
Now you know everything. I want to know something about that CBV which they want to apply instead of BEAM. How it works? How one feels? Tell me some more about transplantation if you had one. Is it so terrible. They want to take me to the Clinic not earlier but on next Wednesday. Waiting for your reply. Thanks.

(I do not know if I do correct to send new letter as reply for Allo Mans letter. I could not find the way to communicate only with him on the page. I am waiting for more answers of course. I'll be very thankful for each one).

Witek, 29, Poland, Cracovia

AlloMan
Posts: 47
Joined: Jul 2003

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.

amasurvivor
Posts: 15
Joined: Sep 2002

Hi Witek. My prayers are that your treatment is going better than expected, and successful. I had the CBV with an autoSCT four years ago. I'm hopeful that you are having some aspects of a normal life right now. I'd love to share my story or just listen to yours, if you need an ear. amasurvivor@tampabay.rr.com

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