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Out of MMR… again

40 year of female taking 100mg Sprycel. In three months, I will have been diagnosed for four years.

Recently I started adding Quercetin because I thought it might help. My BCR ABL went from .05% to .15%.

I realize that this is not a huge jump that demands immediate action… (I’ve done this long enough that I try my best not to freak out about increases) but is definitely not fun. I can’t help wondering if adding Quercetin was actually harmful. Honestly, I had never felt better. I swear Quercetin helped me sleep better (which helps with energy tremendously). I have been running 6 miles a day and eating good and doing the whole vitamin D3K2 and curcumin thing. I felt maybe too good?

I am going to stop that supplement and see what happens next go around. You can be doing everything “right” and still not find success. I wonder if there is less ability to see if any added supplement works when you are a deep responder by default.

I wanted to add my perspective. Yes, I am a bit jealous of people who respond deeply… and I wish I could change that. Sometimes it feels lonely being a suboptimal responder and I am a bit disappointed.

I am hoping to start a clinical trial because I do not see a way out for me without an advancement to CML therapy.

Quercetin alone is unlikely to impact CML one way or the other and works as a strong anti-inflammatory. It helps old cells enter apoptosis (cell death).
Your "rise" in bcr-abl is not insignificant, but likely has nothing to do with quercetin. Quercetin is a strong anti-oxidant and supports the immune system. I take it every day.

I assume you know your vitamin D level and it is greater than 60 ng/ml. Do you also take selenium? (200 mcg per day)

There are no tests specifically for Quercetin with dasatinib for CML response. Yes, you can patch research together that gives you hope that it will work synergistically, but it has not been specifically studied for CML. I seriously felt SO great on it. I could do Sprycel forever if I had the same energy I had while on Quercetin. My experience though has made me believe that it might actually be bad for me to continue. For people who respond deeply, it might be no big deal, but I have no wiggle room.

I felt like my perspective is worth mentioning. Supplements are not without potential interactions. I had been below MMR for over a year until this blip. It has been touted on here as if it could be a solution.

I am always wishing that something could fix my CML… I am so frustrated and tired of fighting… while being a mom. It seriously stinks! I wish there was more support and perspective from those that will obviously never get a deep response.