It's late at night and I'm off to work in the early morning... So I should try to keep this short.
Today I was back at Sloan-Kettering to see Dr. H and, I thought, to pursue discussions of chemo regimens. The basic tests on the bone marrow have come back negative, though one set (chromosomal tests) is still pending.
I spent about 45 minutes with Dr. H, and the crux of our conversation was that his uncertainty about my diagnosis still persists, to some extent. I guess I can best describe his attitude as "proceeding with caution". In his words, this is most likely a T-cell lymphoma, but it is not absolutely typical of T-cell lymphoma, and that continues to give him pause.
For one thing, while the pathologists over there are now "officially" concurring with the diagnosis, they still believe the microscopic appearance is not what they usually see, and they are making the diagnosis on less direct tests. Another thing, the lesion in my mouth (the only known lesion that we can easily keep an eye on...) seems to have completely healed.
Dr. H's recommendation right now is to go ahead with the previously discussed needle biopsy of the lung nodule, and see if that makes the picture more certain. If it does, then it's full steam ahead to chemo.
As for the chemotherapy itself, we did finally start discussing concrete recommendations.
The standard "textbook" treatment for T-cell lymphoma is a regimen known as CHOP (chemo regimens are typically referred to by acronyms which stand for the names of the drugs. In this case, Cyclophosphamide, Doxyrubicin, Vincristine, and Prednisone. The letters don't match because the acronyms mix generic & brand names). Normally a dose of CHOP is given once every 3 weeks, for six cycles. This is sometimes followed by a high dose of chemotherapy, accompanied with a bone marrow autotransfusion. (The high dose chemo destroys the bone marrow, so some must be taken away beforehand, and is given back after the chemo is over. More of a self re-infusion than a transplantation, actually)
There seems to be pretty widespread consensus that the results achieved by this CHOP +/- high-dose chemo & transplant is not so great, however. So people are always trying to find things that might work better. In my case, both sets of oncologists had alluded to using more aggressive chemotherapy regimens, mainly because I'm young and healthy and so my body would be resilient enough to take it.
So the specific protocol that the Sloan group recommends for someone in my position is to start with four rounds of CHOP, but compressed into two week cycles rather than three. This would be followed with two or three cycles of ICE (Ifosfamide, Carboplatin, Etoposide--a more agressive chemo soup...) and then the high dose chemo with transplant.
All this, however, may be on pause for now. Dr. H will get in touch with me tomorrow, after further discussion with the Lymphoma faculty at MSKCC. In the meantime, we will proceed with trying to arrange a new CT to look at the lungs (it's been over 3 weeks since the last one, so perhaps there may be some change in the nodules).
If the nodules are still there, biopsy time.
If the nodules are shrinking, continue to wait and see.
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