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Stem cell transplant

Hi, I was diagnosed about 4 years ago and have had serious side effects with Gleevec, Sprycel, Tasigna and Bosulif. I am currently back taking 300 mgs of Gleevec, the lowest dosage my doctor will let me go to as I'm just above MMR. My doctor rarely recommends transplant but due to my age, 58, and overall health when not on TKIs, which is excellent, and the fact that my sibling is a perfect match, he has me scheduled for transplant in August. I've been in contact with Be the Match and they hooked me up with someone who's been through transplant about 5 years ago, but I was looking for some advice from anyone who's been there more recently as many new developments have arisen.
I'm going to OHSU in Portland, OR and having the full chemo (not the reduced intensity kind).

Any advice is greatly appreciated. I'm a little anxious but the prospect of being cured is exciting.

Thanks all!

What were the side effects you were experiencing?

What is your current status (PCR/ blood counts)

PCR 1.2
Gleevec- gastro, skin, bleeding, fatigue weight loss
Sprycel - chest pains, dizziness, gastro, pleurisy,
Tasigna - enzyme issues, anemia, numbness in legs
Bosulif - couldn't tolerate at all and jaundice, elevated liver enzymes.

Quality of life has gone downhill. Had to go on disability.

Consider returning  to sprycel low dose no more than 20 mg.

It will likely be more effective than 300 mg gleevec and you may avoid side effects that you can feel at that dose.

It is much more desired to try this before transplant. Transplant is an absolute last resort - and then only if your PCR is rising and you have excess blast cells and CML is in run away mode. Yours is not. Usually transplants are recommended by doctors who do transplants.

Give yourself a fighting chance. Improve your vitamin D level - especially if below 30 ng/ml. Take selenium (200 mcg per day) or eat 2 - 4 brazil nuts per day. Drink green tea (jasmine, my favorite) (sooth gastro and dizziness). Consider taking Curcumin (w/ bioperine) at greater than 4 grams per day - ideally 8 grams until PCR under control.

Eliminate sugar from your diet.

Drink wine (good for the soul).

None of this is a guarantee - but it does give you better odds.

Thanks, I was already in 20 mg of Sprycel and was admitted to ER twice.