I was diagnosed July 11,2016. 2 weeks of Hydrea then put on Sprycel 100mg once a day on July 26. I take it every day after I eat supper. My platelet counts went very high then normal. September 19th they started to drop to 44,000 next week September 27 platelet count down to 32,000, Dr took me off the Sprycel. Following week 21,000 and red 2.94 and white counts 3.6 dropped, this week platelets 17,000, red count 2.?, white count 2.? Taken off of work, I'm a special education paraprofessional. I assist special needs children in the school system age 11-14. So I'm wiping many noses, changing diapers, being spit on, grabbed, hit, kicked, catching their viruses. So Oncologist took me off work for 2 weeks as of today October 11. I getting really nervous about my side effects and what I can do to get better. Help!
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Dasatinib side effects
Hi Susan,
I take dasatinib too, coincidentally around the same time of day as you too.
Dasatinib can be quite myelosuppressive (suppresses blood counts) and this does seem to affect some people much more than others. With blood counts like yours, it's absolutely right to take time away from work, especially since you are mixing with kids all day who can be right little germ bags!!
I suspect your oncologist is looking to see if your blood counts rebound strongly in the next couple of weeks. If they do, re-challenging with dasatinib might work just fine - or, the other option is to take a different TKI. We are very fortunate to have several options. The side effects that one has with you (e.g. myelosuppression) just may not occur when you take a different one.
So don't despair at all ... a great many of us here, including me, have started on one TKI and for one reason or another (side effects, it not working as well as hoped etc.) we've needed to switch to another. Some people needed to switch to a third or more. But most of us have found one that works well.
Please do let us know what your blood results are in a couple of weeks and what your doctor says. If I were you, I'd have a couple of key questions for your doctor at your next appointment:
- How significant is the change in blood results for platelets, reds, whites etc. - i.e. has the pause from treatment helped
- If I am to do back on dasatinib, can I get another full blood count (FBC) in 2 weeks to see if blood levels are being suppressed again
- If they are, what alternative TKIs can we consider? (either then, or even immediately without going back on dasatinib)
David.
Hi David,
Thanks for your reply. As of now all counts are up some except the WBC it's at 2.7. So no work or Sprycel. The Dr is lower my dosage of Sprycel to 80mg when I can begin again. She has seen a reduction of the BCR-ABL at start 22 after two months of dasatinib/Sprycel it's at 19. So that's good but so slow getting WBC up.
I will ask her your questions tomorrow at next appointment.
Susan
Susan - Many people never get their blood counts all the way back strongly in the normal range, and that's perfectly fine. Your WBC of 2.7 is about what I always have, and have for 9 years! Nobody is worried. In fact, all my counts are just under normal or at the bottom end of normal, and they have been since I started TKIs for CML. The docs have their own parameters that they will share with you (but you have to ask) beyond which they start to worry. But before then, if the numbers aren't very far off, it's better to keep going on a TKI to see if they will come up. If they don't, a slight reduction in dose can help. Myelosuppression is a big scary word, but unless you have REALLY REALLY low numbers, it's often just a fact of CML/TKI life. "New normal."
Just wanted to give my example in support of Kat. My WBC has never been at normal levels. 30 years ago when I had a testicular cancer it was around 2.5 or 3. That is when I had the radiotherapy which probably caused my CML. That was diagnosed 11 years ago when I moved home and the new GP wanted to get a baseline test done of my low WBC. When it was not low and increasing I was referred to haematology and diagnosed Ph+ CML.
On 400mg imatinib my WBC is between 1.6 and 2, with Neutrophils around 0.9. Early on the consultant reduced my Imatinib to 200mg as she was worried about it, but went back to 400 mg as my BCR-ABL was taking longer to come down than we were happy with. Recently gone back to 200mg and still maintaining better than log 4 (test again next week) and WBC up to around 2.3. I carry some broad spectrum antibiotics but rarely have to use them - the last twice I have had a prescription from my GP was because they had gone out of date, not because I had used them!
Hope that helps.
Alastair
Me too:
3/27/18 (12 mos. post diagnosis): WBC 2.9 (should be at least 4.5), RBC 3.38 (should be at least 4.2), HGB 11.7 (should be at least 12 -- very close!), Platelets 115 (should be at least 150).
All counts are below normal, and have been consistently low since about 1 mo. after starting Imatinib 400 mg. Had not reached MMR yet, but hope to at next visit later this month.
Doctor says this is OK. I still haven't been sick a single day since long before diagnosis. Immune system seems very strong, just couldn't kick this!! My only real complaint is swelling around eyes and fatigue, occasional leg cramps. That's it.