Dinner with a mantle cell survivor

On Friday evening I had a brief supper and discussion with a Maryknoll priest who in 2000 was diagnosed and treated for the same type of lymphoma that I have. Since I didn’t ask his permission to post this, I am just going to call him Fr. M.

It’s a funny coincidence that my good friend Judy Anderson knew this priest from her days working at Maryknoll. In fact I think she may have taken him a few times to his chemotherapy sessions.

Anyone new to this web journal should probably go and read some of my earlier posts before reading this one – like Chemotherapy Tomorrow  just to get some background.

Father was diagnosed with mantle cell lymphoma – his recollection is that he was told his variety was a more aggressive one. He was treated at Memorial Sloan Kettering, and remembers my lymphoma Doc, Dr. Zelenetz, although that was not his primary lymphoma physician.

Within a month of diagnosis he had started on the same protocol that I am on. He had RCHOP chemo as an outpatient, and then ICE chemo with two night stays in Sloan, and then the stem cell transplant.

What I was most interested in was his experience with the stem cell protocol. Father’s recollection is that he was hospitalized for 28 days. For much of that time he was “sick as a dog” as they bring you “to the brink of death” before bringing you back. Father M seems to have had some trouble with respiratory infections, and was taught to suction himself.

Father’s description of the protocol was approximately this: first they take out some stem cells (presumably from your bone marrow) and then he received three days of radiation. This was news to me, since I was only told that I’d be getting “high dose chemo”. So perhaps they’ve changed the protocol, or simply haven’t given me a full description.  After the radiation came the chemo. The purpose of these is to destroy your immune system – the white blood cell count goes down to literally nothing.

After several days of chemo, and the satisfactory destruction of the immune system, came the great anti-climax of his stay. A nurse walked in with a syringe, pumped the contents into his IV and said, “you’ve just been transplanted” returning his stem cells to him!

The stem cells know what to do. They migrate to the bone marrow and go to work.

Then it was a question of waiting for his white blood cell count to go up. Which Father M described as a long process. There was a graph kept at his bed and each day they would fill in the progress – nothing for several days, then a very slow rise in the graph and then a sudden jump.

As I understand it, the purpose of doing the stem cell transplant, or reload, is the hope that the rejuvenated immune system will do a better job of recognizing and attacking the lymphoma cancer cells, if and when they recur. It seems to work, since the recurrence rate is put off longer for patients who have the transplant, then for those who don’t.

The results for Father M seem to have been good. Since the procedure in 2000 he’s had no recurrence of the mantle cell, although he developed just this year another health problem. It seems that his doctors do not think the new issue is related to either his lymphoma or the procedure.

Father M was a delightful guy to talk to – he was ordained in 1976 and spent many years in Bolivia, Chile, and Peru. He went to Peru after his lymphoma treatment. So he clearly made a good recovery.

I was not surprised by his description of his stem cell treatment experience. Obviously when you are having toxic chemicals poured into you, and your immune system is destroyed – that’s going to produce some shaky days. I’m not a rocket scientist but I’d already figured that out.