My personal disclaimer: My spelling and typing are not the best these days. Please forgive my errors if you are one who reads this before Cami and Angie fix all the mistakes they find. :)
I had a clinic visit last Friday, September 3. The visit included lab tests, a pentamadine treatment, a visit with the new doctor on the team, and a visit with Dr. Peterson who has been on the team since I was diagnosed. It was a long day! Luckily, there is always somewhere to plant my head to rest and plenty of heated blankets to keep me warm. My lab results look good. My hematocrit is holding steady around 30 - so my tank isn't full yet. My platelets went up. My white cells and neutrophils went down - probably due to allergies or a minor cold I have.
This is the new doctor on the team, Birgitta Mitchell. She had been working with in-patient, so this was my first visit with her. I really like her. She was thorough and easy to talk to. I often make goofy remarks (right Kim!) and she could handle it. My check up by Dr. Mitchell went well. My check ups are generally focused on looking for signs of graft vs. host disease (GVHD). I haven't had to deal with GVHD on a large scale, maybe not even on a small scale. Who knows . . .
Dr. Mitchell did give me and my mom great news. The results regarding the translocated chromosomes 4 and 11 came back negative. The pathologists no longer see the translocation. This is wonderful, fabulous, exciting news!
My pentamadine treatment went as usual. It is a breathing treatment I get once each month. I first do a treatment of albuterol to open up my airways, then I do a treatment of pentamadine. I spend most of the time gagging and dry heaving because the pentamadine is disgusting. I would much rather do the pentamadine once a month than get a horrible fungal pneumonia. Just one of the few preventative medicines I take.
My visit with Dr. Finn Peterson was fine. I was glad to finally get a picture with him. He is a great doctor from Denmark. I love his accent; it reminds me a bit of my Grandma Hill. As I said the meeting with Dr. P was fine, but a let down at the same time. This was the time I was supposed to be told what the next step is going to be. Unfortunately, there are no clear-cut answers. Remember, the options are to do a DLI (donor lymphocyte infusion) or to do nothing. Dr. P had spent the week or so before my visit conversing with doctors from around the world and with the other doctors on the team at LDS. This is the info my mom and I were told during our visit with Dr. P:
There is no data supporting one option (see above) being better than the other. I do have donor cells in a freezer at U of U and, because of this, some doctors think I should have them infused since they are available. The doctors have discussed the fact that infusing the cells can result in severe GVHD, where the donor cells attach my body. GVHD can be manifested in many ways: skin rashes, scleroderma, problems with the liver, heart, eyes, teeth, mouth, lips, etc. It's overwhelming to think of all the possibilities. Oftentimes, GVHD is just as bad, if not worse, than leukemia itself. Infusing the cells can also result in my donor cell increasing resulting in a better engraftment. There is no guarantee of not relapsing if I go this route. Now, the flip side.
Do nothing regarding an infusion of cells and continue to monitor my progress. My counts have been going up. The main counts my doctors look at are my platelets and my neutrophils. My platelets have been on a steady climb up, and I have not had to have platelets infused since May (I think). My neutrophils are not high, but they are not low enough for concern. A lot of things can affect the neutrophil count (allergies!). There is no sign of leukemia in my blood, bone marrow, or spinal fluid. The translocation is gone. I am feeling well. Because of these things, some doctors feel that monitoring my progress is the way to go. They feel that my transplant may have already accomplished its task and that my body may be working on correcting it's errors on it's own. If an infusion is completed, the positive process my body is (?)doing(?) may be destroyed, leaving me worse off.
Dr. P explained that the doctors he has conversed with around the world and on the team are split. That you could literally split them in half with a knife: 1/2 supporting DLI, 1/2 supporting monitoring. The decision is left to me. I have had many thoughts going through my mind that I don't have the energy or brain power to type about at this time. The one thing I know for certain is that there is one Being who knows what I should do, my Heavenly Father.