I hesitated in posting this, there is usually enough negative news lurking around. But, because I mentioned several times I had little to no side effects on the Sprycel, I believe it is important to update my information, many people, including myself, look for past experiences of others. It has been almost two months since I began the 140 mg Sprycel after my 3 week break due to blood work results. Upon restarting I had litlte or no side effects, nothing like the initial beginnings on Sprycel 100 mg. I noticed about five weeks ago I had a rash of sorts close to both sides of my nose on my cheeks, this ran the entire length of my face and between my eyes and a bit on my forehead. The beginning of the rash held no discomfort, it was unattractive for personal vanity, but nothing I paid much attention too. In the past three weeks the rash has become angry and irritated, it does seem to have cycles throughout the day, when it is really red, I feel a bit uncomfortable throughout my body, nothing I could describe in one part, just an odd and unpleasant feeling. The rash is also very hot, feeling and to the touch, almost like a serious sun burn after a day at the beach. The interesting part of this is the hot and major redness cycle, (I guess I mentioned this before). It does not stay hot, nor does it stay sun burn red, the entire cycle lasts between 30 minutes to an hour, but can happen several times a day. I secured a prescription for MetroGel, I have only had it two days, too early to tell if it seems to be helping or not.
The other side effect, and perhaps the one that is bothering me, again for vanity sake, is hair loss. It has become serious in the past few weeks, my pillows are full of hair, my clothing and coats are loaded, and I can not see very thin patches, especially on the left side of my head. I have stopped washing my hair every day, sometimes I go three days but it about drives me insane, I have considerable hair loss in the shower also, lightly scrubbing and using small amounts of a gentle shampoo does not seem to help. I usually have to clean quite a bit of hair out of the drain, I thought at first it was my imagination, then I thought it would be just a short term side effects, perhaps from just not being completely healthy, but I have had to come to the conclusion it is probably the Sprycel and unless I am able to reduce the dosage quickly (even then it may be too late) I am preparing myself for a bald is beautiful phase. I have read many stories, facts, and personal experiences with TKI's and hair loss, and the one thing I hold on too, even at the 140 mg dose is, the hair cycle seems to become dormant for about three months, the hair falls out, the follicle remains dormant, and then somehow the body adjusts and the hair begins to grow again. It will be a long few months I fear, it is funny I have never worried about hair much, mine is natural curl, so if I spent ten minutes on it, I always said it was about 8 minutes too long. Guess humility is yet another trait I am relearning because of the leukemia. In the scope of life, overall health, response, and the battles so many face concerning leukemia and other cancers, hair loss is nothing, but for some reason it is bothering me more than I ever thought possible, even though I know it should be insignificant. I would like to focus on the fact the TKI's seem to be destroying the leukemia cells, and if the latest labs come back as positive as the previous ones, I have had an awesome response after such a rough start, but I mourn the loss of my head of hair like an old friend. Such a silly thing, but I can't seem to stop the emotions.
