Tell the Bees

2008 January

The endoscopy revealed two large ulcers in my stomach. The biopsy tells us they are lymphomic.

My oncologist here in Maine calls for checking me stem to stern….a PET/CT scan ASAP, then a check of the CSF (cerebral spinal fluid), and a bone marrow biopsy. He consults with the doctors at Dana Farber in Boston. By mid January there is a proposal to start me on a new standard chemo regimen called RICE to get rid of the current active Lymphoma.

This would be followed by yet another stem cell transplant in Boston. This time they have proposed a relatively new “mini-allo” transplant. When the stem cells come from another person, it is called an allogeneic transplant. The donor may be a relative or a complete stranger. The important thing is that the donor’s blood is closely matched to yours. This is more likely when the donor is your brother or sister.

A ‘mini-allo’ transplant is really an immune system transplant. Rather than undergoing massive chemo therapy (like I did 2 years ago with the 1st transplant) – the treatment relies on the donor’s cells going to war – and beating my unhealthy cells. Compared to last transplant: somewhat experimental, less chemo treatment for me, shorter time in the hospital, but longer time of confinement at home afterwards AND we had to find a DNA-stem cell donor match.

My brothers were immediately recruited to send blood samples for review. They, of course were instantly on board.

1/22. My first 3-day chemo regimen. One night in the middle I have to stay in the hospital for a 24 hour drip of one of the drugs… back with my old friends on the 3rd floor of Mercy Hospital.

1/30. Craig and I went to Boston to meet with my oncologist Dr. Phillipe Armand at Dana Farber for a face to face discussion of the proposed transplant. It was a very emotional meeting for me. Dr. Armand said this transplant is my only chance for eradicating the Lymphoma, and it’s no guarantee.

Here’s his description of the proposed “mini allo”: It would begin with four days of light chemo aimed not at the Lymphoma (which hopefully the RICE regimen had beat down) but to make room in my bone marrow for the incoming donor cells. My own immune system will be wiped out to make room for the new cells that will grow along side my own cells and eventually attack my cells – especially the Lymphoma cells. This “immune attack” is the main thing this stem cell transplant has going for it. Then he described the downsides. The most likely is some measure of the graft vs. host effect where the donor cells attack my normal cells. This can be minor, like a skin rash, or much more serious like damage to internal organs. These can be treated with medications, but to avoid it the doctors would intentionally create “immune suppression ” in my body. The short term effect is a much longer period of restrictions following the transplant (an intensive 6-12 months).

The biggest risk is that the transplant does not work. What is the chance of it working? Dr. Armand said they have up to a 20% cure rate at DFCI, and reminded me that without the transplant my cure rate would be 0%.

He then asked me what I wanted to do. I told him I would probably do the transplant, but I was not ready to commit.