This is a familiar story and many here have faced low blood counts of various types due to the combination of CML and TKI drugs. It can take a while for the body to produce good blood cells again in sufficient quantity since the body attempts to control the cell overproduction by nearly shutting down good cell production. Although CML is mistakenly thought to be a disease of the neutrophil White Blood Cells, it is actually a disease at very high levels in the blood making system, so it affects all cell lines (white, red, platelets). Once the TKI drug slows down the leukemic cell production the body must restart the good cell production, and that can take some time. So overall the real answer is that time (a year or two -- sometimes more) usually fixes the problem in most patients. In the short term the drug breaks help, but at the expense of response, so these patients tend to have slower responses. But that is not serious as long as there is an acceptable level of continued response, and your son has a zero FISH so has done well. But it can still be a juggling process for a while. Platelet drugs can be used but I would only use them if absolutely necessary to achieve or maintain an acceptable response.
Is your son a child?
My son is 22 yr. old.
Thanks for this input and explanation. Another couple questions but first here is a run down of his history...
At diagnosis beginning of July and still at end of September...PCR 100 dasatinib 100mg...
At this time was switched to 140mg dasatinib
1st of November..PCR 31.8
1st of December..PCR 3.4(these results were from a different lab. Lab that was usually used showed somewhat higher.)
May 3..PCR .89 This was when he was taken off of meds first time for low platelets.
June..taken off of meds 2nd time
July 7...PCR 1.67 also the 3rd time off of meds
July 20..biopsy...zero FISH
Now with this look at his history...would switching meds be a good thing to do? Or would he be ok to stay on desatinib awhile longer with the breaks,when needed and give it more time? I read somewhere else where a patient who had the side effect of pleural effusion had certain days of the week/month that she did not take meds to try to stave off the pleural effusion longer. Would/could that be an option for the platelet issue? Instead of being off a whole week at a time? His Dr. is unhappy with his PCR results and I'm getting the impression he thinks my son should've reached .1 by now. Although they have told us before that they want him to that point between 12-18 months post diagnosis. Since the disatinib has been working so well for the CML and he has had no other side effects I hate to see him have to change but I know he can't keep having such low platelets either. I have found it interesting on here reading about the "turtles"...realizing that everyone doesn't reach the goal as quickly as others. I'm not sure his Dr. sees it like that tho.
We have already talked transplant and we do not want to go there if at all possible. I guess we're just feeling a little confused right now.
Now on a side note..I'm just curious...are you a Dr? Researcher? Fellow CMLer? I've noticed you really seem to be very knowledgeable and people refer to you quite often!! I also appreciate your advice!! Thanks!!
Dx July 1, 2015 PCR 100. Chromosomes 19/20. Started on 100mg Sprycel. End of Sept. numbers same as at diagnosis..switched to 140mg Sprycel. Numbers dramatically improved..
May 3 - .89 Also started with side effect of low platelets. Was taken off meds for a week at a time in May, June and July to allow platelets to recover.
July 20...FISH- negative
July 28..switched back to 100mg Sprycel because of continued low platelets
August 30...PCR..2.0, Platelets..44
Oct.25..PCR..1.7, Platelets..41, Still on 100mg Sprycel
Nov.6, 2016..changed to 600mg Nalotinib
Dec.20..PCR- .87, Platelets..117
Jan. 31,2017..PCR- .809
Aug. 21...PCR- .18