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