Update on previous post

Janlyn,

A transplant should be the absolute last resort when it comes to CML treatment. There are many drugs which will work when one does not. Only after trying other drugs and those fail to work should transplant be considered. Bone marrow transplants are dangerous. Risk of death in the first two years post transplant is not insignificant. Doctors who recommend transplant BEFORE trying other drugs are incompetent and should be avoided.

The fact that your son missed doses (that you know about) is more likely the reason his PCR has risen. It is vital that your son take his medication at about the same time each day every day. It's also a good idea that his vitamin D level be checked to make sure his immune system is not handicapped.

What drug is he taking and what dose?

He is taking Tasigna 600mg. He was started on Sprycel 100mg at dx but after 3 months he had not responded to therapy so they upped his dosage to 140mg Sprycel. He got good results with the 140mg but then it started wreaking havoc with his platelets, causing his platelets to drop very low. He was on several med breaks because of the low platelets. Then he was dropped back to 100mg again but still had some trouble with low platelets and bouncing PCR. So was switched to 600mg Tasigna.

Most doctors won't know much about vitamin D and its role in cancer, immune response and heart health. But he might if he reads.

Ideal level for people with cancer (or people in general) is greater than 50ng/ml and less than 100 ng/ml. I try to keep mine around 65-70 ng/ml. I do this by taking 5,000 IU's of vitamin D3 per day in summer with food that has some fat in it (avocado, meat, etc.). In winter I take more vitamin D3. Everyone is different so it is best to know your baseline which is why testing is important. I test my D level twice a year.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3166406/

Before any consideration of stem cell transplant, you should continue to try new drugs (Bosutnib ...) - even going back to Sprycel since it did work better than Tasigna.

In my own case, Sprycel did not work for me at first because my Neutrophils dropped to dangerously low levels, but my doctor had me go on and off until my Neutrophils stabilized. Even though my PCR would go up and down, he felt the risk to me of progession was low as long as my blast count remained at zero. CML is not a killer in the chronic phase. What kills is when it transforms to blast crisis. Blast crisis can only happen when you have excess blast cells forming. As long as there are no blast cells (below 2%, but in my case I had zero), that gives doctors time to work sorting out dose and response. I now take only 20 mg Sprycel and I am PCRU ("undetected"), but it took a few years. Once his blood counts are stable and his PCR trends down, you will be in a good place.

By the way - blast cells are undifferentiated precursor blood cells. Vitamin D is needed to drive differentiation of blast cells. When I increased my vitamin D level, my blast cells went from about 3-4% to zero within one test period. I have never had a blast cell count above zero since. Another reason to make sure you have a high normal vitamin D level.

Another update... The Onc called today and we had some good news! PTL!! His PCR retest results showed that his PCR dropped from .28 to .19. So his Onc and the transplant dr. are saying to put the transplant on hold and sit tight on the meds right now. His Onc has decided to up his Tasigna dose to 800mg and see if that gives him the extra push to get his PCR all the way down. His only concern is if the 800mg will effect his blood counts, especially his platelets. As that was the problem with the higher dose of Sprycel. But we will try it and see. He also is working with/for us to refer him and get an appointment scheduled with a CML expert for a second opinion. So we're feeling a good bit relieved right now!