Mylosuppression

Hi,

I am 38. From USA. DXed 2017. Wbc at dx was 550 and 4% blast!!. Started with lukoferecis, then hydra then 100 dasatinib. Went through severe platelet and nutrophil suppression from after 3 to 4 weeks. Once platelet dipped to 15. Had phases of dose reduction of dasatinib with cotinued mylosuppression. Had to stop for a 4 weeks stretch which triggered pcr to 46. Then started on imatinib 400. Mylosuppression occured but with lesser magnitude. Finally settled with 300 imatinib generic. Continuing on it for last one year plus. Just reacched .09 pcr. Now, have normal wbc hb rbc but below normal platelet. From 20s and 30s range it gradually climed up to 90s range over months and its been there.

Wanted to tell you that please dont loose hope. Keep faith and keep fighting. Some combination of tki will work for you.

You probably should not have been put on Hydrea.  It "overkills" your blood-making cells and it takes time for them to recover.  And in that time period, if you have to be off the TKI, you're wasting time.  However, do not worry about resistance developing or the CML progressing rapidly. Doesn't work that fast.  Most people are started on Gleevec, which causes less thrombocytopenia.  (Sprycel causes more.)  But, having said that, and to answer your questions:  Generally they don't want your platelets to go below 50.  I had normal platelets the two years I was on Gleevec, but when I started on Sprycel, the platelets went as low as 62.  And, looking back at my records, they stayed low (averaging around 100) for about 4 more years.  I went from 100 mg Sprycel down to 70, then 50 and now 20 mg.  My platelets are generally on the low end of normal now, around 150.  Many of us live with blood counts on the low side, to no detriment.  I think I would ask my onc to put me back on Sprycel at 50 mg (it's adequate as a starting dosage - there's research, although it's not in the NCCN guidelines yet.) and if you can inch your platelets up to close to 50, I'd relax and let the drug work its magic on the CML and let your body start making platelets.  If your onc is bound and determined to switch drugs, ask him why not Gleevec?  Bosutinib has its own problems! 

Hi,

I am a 35 year old female also diagnosed recently (caught by OB at 6 weeks postpartum visit). I was also started on hydroxyurea along with a TKI (gleevac) at diagnosis. After a month I felt like complete garbage and went for follow up (2 wk cbc was normal). My WBC count was 1 with 0 neutrophils. My oncologist didn't have a choice but to stop the gleevac. I was off for a week. Now back on and waiting for repeat labs. I have been anxious about the situation and compulsively posting to various forums. From what people have been saying, it can take some time for your body to "adjust" to the new medication. I have also been assured by my oncologist (who appears to be very well read) that the disease will not progress rapidly if off TKIs for short periods at a time and there is no evidence to support any mutations or resistance being induced during these breaks. You are not alone! 

Hi Brett,

I’m another member to suffer low platelets although mine came from Nilotinib. They dropped as low as 21 and I was off all treatment for 9 weeks. My neutrophils also dropped to 0.4. The way it was described to me is that although my platelets and neutrophils had crashed, it meant the bone marrow wasn’t really ‘working’, as in not creating the required cells to bring the counts back up. What this also meant is that the CML also couldn’t really increase rapidly either even without treatment. I had an increase from 6% to 6.7% over that 9 weeks.

I was then restarted on Nilotinib at a very low dose which continued to slowly reduce my BCR/ABL but not crash my platelets as bad. They reduced to 50 the second time and over around 5 months they have slowly increased to 72 at the last blood test. My consultant says anything above 50 is absolutely not a worry and you can have major surgery at that level. Below 50 is where some concern starts, treatment would likely be stopped below 40 and below around 15-10 you would most likely start discussing platelet transfusions.

It may be a lengthy road but hold in there on a lower dose of Dasatinib and your body will most likely adjust over time. If it stabilises above 50 you have no worries 😊

Hi - Yes, dasatinib 100mg was stopped completely. Waited couple of weeks. Then restarted on same dose. Same mylosuppression returned. Reduced to 80mg and retried. Same pattern. Reduced to 70mg and retried. No luck. Then moved to imatinib. During these dasatinib episodes plateletes always declined in a steady pattern. But please note that was me. Every human being is different. It can very well be different for you.

Disagree. If it were I, I would go back on Sprycel at 50 mg and tough it out.  You are not in danger with platelets at 47.