Shifting to a new Battlefield

During the last 20 months of fighting this disease I have constantly been reminded of how tough my opponent is. My CML has been unusually aggressive throughout my care, and each bit of new news reminds me of that. As it turns out the Spinal Punctures have not reduced the amount of Leukemic cells to a satisfactory level. The Thiotepa chemotherapy was working somewhat with only one dose's results examined. The combination of the 5 spinal punctures with chemotherapy with a net result of lowering my leukemic cells in my spinal fluid from 35% to 16%........(these are approximates with slight margins of error) was not enough of a drop to warrant proceeding with that method.

So we are switching the focus over to radiation therapy. We heard this news on wednesday and I had my first consultation and simulation for this therapy at the UW yesterday. We met a few doctors, assistants, radiation treatment specialists and they seem to be a really great group to work with. The main doctor I spoke with has essentially told me that up until this point, what has been thrown at me has essentially not worked in doing what it should have. Because my CML is so strong and so aggressive, they will need to bring out the "Big Guns" to battle it. That would be radiation treatment. My SCCA doctors could have started with this plan, but because of its side effects and the fact that it is a much tougher route they really felt the spinal fluid chemotherapy injections were a better option. So here we are moving on to a different plan..."again"!.........

I understand that the doctors are doing their very best to take care of me, and under normal circumstances these methods usually work. It is just very hard for Mandy and I to continually be disappointed with bad news about how tough my CML is. I just want one treatment plan to go right..............That is all we want right now! Fortunately the one thing going right so far has been my Nilotinib medication (oral chemo taken daily)........just like the Gleevec and the Sprycel......it is doing a great job at least right now in keeping my CML under control to keep me feeling fairly heatlthy. It is extremely important that this continues for awhile longer so I can go into a transplant as healthy as possible.

So briefly about the radiation therapy since Ive only just learned about it. It is a highly successful way in attacking cancer cells. For a minimum of two weeks, I will be going to the University of Washington for these treatments. There will be what we understand to be 2 treatments daily of radiation. One treatment will be for my head, and one will be for my spinal column. They wish to be very aggressive in the amount of radiation they give to me because of the nature of my disease. They explained they wish to give me the maximum amount of radiation spread over at least 2 weeks but possibly up to 3 1/2. They have to give it in small applications so as not to do major damage to me. The reason they will need to give radiation to both areas is that the cerebral spinal fluid extends up into the cranial area, and they need to make sure "all" of the cancer cells are attacked.

The side effects explained to us included nausea, bathroom issues :o).........they said something else of course, feeling very tired most of the time, hair loss, possible skin issues, esophogitis, mucositis possibly(mouth sores and difficulty swallowing), and a few more I dont even remember right now. These sound very scary as always, but I have been preparing for all of these already and know that day would be coming soon anyway. Up until this point I have been extremely fortunate with side effects so I guess its time to even the score. Mandy and I feel very good about the UW team we are working with and with some strong prayer, good fortune, or whatever each of you believes in this treatment plan will be the one that finally gets me to a ready position for the transplant.

We will continue fighting this disease for us, and for all of you supporting us!.........Thank you again for constantly lifting me up!! I truly am a lucky guy to have the best friends possible, and such an enormously big hearted family that has taken care of me at all times! Now it is time for me to head down to the SCCA for another blood draw.......

Tyler