CML and pregnancy - Sprycel Treatment

I haven’t gone through this yet but hoping to soon. I am 30 and been on treatment for 1.5 years. I brought it up with my doctor earlier this week actually and he said he’d consider letting me stop dasatinib in a year or two. I think it’s dependent on how your labs have been. Where have your PCRs been running? 

Hoping to hear some responses of women who have gone through pregnancy while having CML!  We were planning on adopting when we learned about CML, but found out my state doesn’t allow any cancer patients to adopt. We could eventually pursue a private adoption but we’re looking at $50k+ so that won’t happen immediately.

A very close friend of our family who has CML gave birth to twins after stopping therapy during her pregnancy. She asked me for an oncology reference back in the day and I referred her to my doctor at the time. She was not quite MMR when she had to stop. I don't recall if her pregnancy was 'planned'. I don't think it was - but she viewed it as a blessing.

As expected, her CML counts started to rise during her pregnancy. By the time she was at term, her PCR was well above 60-70% as was her FISH counts. Her doctor stayed the course since blast cells were zero. This is key in CML. As long as she was not experiencing blast cell expansion, her CML was in chronic phase only and CML progresses slowly in this phase. CML takes years to progress from chronic phase to blast crisis if left untreated. Most people who develop CML don't even know they likely had it expanding for years until they develop symptoms with very high white cell counts. Even with PCR > 50% and FISH levels approaching 80%, her blood counts remained normal. If you recall, when you first started treatment, the first success milestone is a return to normal blood counts (or near normal). This happens quickly even though CML cell counts are still high. Only when FISH is at or near 100% do our bodies lose the race to keep CML in check. So even though her CML counts were rising significantly during the 9 months, she still had time to take her pregnancy to term - as long as blast cells remained zero or very very low. She was tested once a month if I recall and she followed some of what I was doing to regarding vitamin D/Curcumin which helps leukemic blast cells differentiate. This may have bought her more time by slowing CML blast development.

After she gave birth, she continued off drug for another 3 months in order to breast feed. Her CML was "smoldering", and not expanding (~80%) quickly, so her doctor enabled her to continue a bit further off drug. After the 3 months post pregnancy, she returned to low dose therapy (same as me) and her PCR/FISH levels plummeted straight away. She is now back to near "undetected" at PCR < 0.01%. And her twins are amazing.

If you PM me, I will ask her is she would like to reach out to you privately via email for her first person experience.

Got it - I think that I look at it a little differently than DCF 🤣 I know this is not something that should shorten my life expectancy and I also know that many people/companies/entities are not familiar with CML. For instance, I can’t get life insurance. Life insurance companies look at antiquated data and refuse to even consider covering me. Sounds like your DCF is doing the same. They hear cancer and start painting with a broad brush without being understanding of the individuals situation. I’ve really started thinking of this diagnosis like a blood disorder as opposed to cancer but I know not everyone looks at it that way. I really hope that you and I both get to have kids someday naturally and that if that does not work out adoption is not made to be overly burdensome!