[DanL]

Data,

I have had maybe 5 drinks since transplant - prior to transplant, I could see the impact of drinking a single beer on my platelet function - I had about 25k to 30k platelets and did well for a long time, but drink a single alcoholic beverage, and I would bruise like nobody's business, so I stopped entirely.

Maintaining liver enzymes becomes an issue after transplant, especially if you have had a lot of transfusions. Liver toxicity is really pushed by all of the post-transplant drugs and the chemotherapy for conditioning. I have been taking a drug called Actigal (ursodiol) to help keep the enzymes in good shape and have not had any elevated enzymes since transplant. Drinking on top of the drug stress could cause some issues - but i think it is probably negotiable with your doctor based on the evidence.

The Tylenol question is an interesting one as I have been told all along that Tylenol is the best to use. I have been taking percocet (which is basically part oxycodone part tylenol) for my hips for over three months without problem, but we keep monitoring my enzymes to ensure that the toxicity isn't increasing.

NSAIDS like Advil, Motrin, and Alleve all have marrow-suppressive characteristics and can cause some issues - again probably run this by your doctor.

the mutations - ASXL1 - this is a common mutation in hematologic disease. I think that MD Anderson was working with some drugs that targeted this mutation. The deletion of 7q22 is pretty common in MDS as well. The extent of the clone (mutant chromosome) also matters - how many of the cells are affected? Is it 20% or 90% for example. You are probably in that tough decision period about what to do - My doctor told me that you will know when it is time to change paths - for me, it was November 10th, 2013. I had been diagnosed and sat in watch and wait for 3 1/2 years at that point, my energy level, overall feeling of wellness, and morale were all dropping quickly....I knew that it was time.

According to my team of doctors an the others that i consulted with, because there isn't any drug that cures the disease, the presence or absence of mutations is more about information and maybe some minor adjustments to drugs that may be more effective for the particular mutations, but in the end, transplant is the cure....that is until we finally have enough research and drug development to knock out the mutations.

Sorry for the ramble, just want to be sure I hit all the points.