It looks like we are going down the transplant road. My wife was diagnosed over a year ago and we haven’t really gained any ground with the tki’s. It seems the tki’s are to strong for my wife as the take the CBC to low. Specially the platelets. She was prescribed a platelet booster but it hasn’t worked well enough. We were told today that if we don’t have something figured out by January we will do a transplant. It’s pretty scary. Anything I should know? Thank you for all you input.
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Transplant.
Hi Jason,
I don't know much about transplants, but some of the members here have been through it and can probably give you guys some insight.
When she's been able, which TKI has Sarah been taking lately, and what dose?
For those not familiar, here's a list of previous posts about Sarah's journey so far:
https://www.cmlsupport.org.uk/thread/12527/my-wife-was-recently-diagnose...
https://www.cmlsupport.org.uk/thread/12563/bone-marrow-transplant
https://www.cmlsupport.org.uk/thread/12618/finally-home
https://www.cmlsupport.org.uk/thread/12761/low-counts
https://www.cmlsupport.org.uk/thread/12907/help-understanding#post-55678
https://cmlsupport.org.uk/thread/13001/not-sure-if-wife-tki%e2%80%99s-ar...
https://cmlsupport.org.uk/thread/13005/auer-cells
https://cmlsupport.org.uk/thread/13009/wife%E2%80%99s-cytogenetic-report
We have mentioned lower doses but as low as they’ve gone on any of the tki’s is 100’s
Hi Jason,
There's a CML forum member over at the LLS Community website. Her username is Melanie (https://communityview.lls.org/users/melanie-1) and she's getting ready for a transplant very soon. If you can connect with her maybe she can answer some of your questions as she's been battling CML for over 8 years.
I'm going to quote one of Scuba's previous posts about Sprycel dosing:
"She should not be taking 100 mg.
https://www.ncbi.nlm.nih.gov/pubmed/29723397
I can't stress this enough. 100mg dasatinib is too high as an initial starting dose for chronic phase treatment (i.e. minimal or zero blasts). Doctors who prescribe it are out of date, especially when treating patients who first started on imatinib (Gleevec) and had some response.
Show her doctor the above paper. Educate her doctor."
I believe Scuba had to have his dose reduced to 20mg before he could stay on it without tanking his blood counts and I imagine he's a little bigger than Sarah.
If you guys can swing it, an in person appointment with a very experienced CML research expert would probably be helpful. Someone who's published a lot of CML research papers like Cortes, Druker, Shah, Talpaz, Erba, Mauro, etc. There's a list at this website: https://www.nationalcmlsociety.org/cml-specialists
Here's another list. These are the doctors that write the NCCN treatment guidelines: Jerald P. Radich, Michael Deininger, Camille N. Abboud, Jessica K. Altman, Ellin Berman, Ravi Bhatia, Bhavana Bhatnagar, Peter Curtin, Daniel J. DeAngelo, Jason Gotlib, Gabriela Hobbs, Madan Jagasia, Hagop M. Kantarjian, Lori Maness, Leland Metheny, Joseph O. Moore, Arnel Pallera, Philip Pancari, Mrinal Patnaik, Enkhtsetseg Purev, Michal G. Rose, Neil P. Shah, B. Douglas Smith, David S. Snyder, Kendra L. Sweet, Moshe Talpaz, James Thompson, David T. Yang, Kristina M. Gregory and Hema Sundar
Jason,
I suffered the same issue - very low blood counts - especially neutrophils and platelets. My doctor is a researcher in the field and worked with me over a year to "condition" my body to overcome low counts.
I have a suspicion your wife does NOT NEED a transplant. It absolutely should be a last resort. Here is how my doctor described the problem and the eventual solution:
1. As long as blast counts are very low or zero, you have time to experiment with bringing CML under control. Because her blood system is largely leukemic, the TKI is killing the leukemic cells leaving few normal cells behind (i.e. low counts). Over time - if given time, her normal blood system will ramp up replacements. But this can take months to a year. It takes time.
2. Dasatinib should never be prescribed at the 100 mg dose - EVER - for someone with myelosuppression. As long as number "1" above applies, start with 20 mg and monitor CBC weekly to test for suppression.
3. Should counts drop below a satisfactory threshold - stop the drug and wait (dose interruption) for counts to rebuild. Do this weekly. Test CBC and when counts recover resume dasatinib 20 mg. Test again a week later. This pulse strategy keeps pressure on the leukemic system while enabling her normal system to rebuild.
4. Keep doing step 3 while monitoring counts and especially blast cells.
5. After several months, it is quite likely that her counts stabilize and dasatnib 20 mg can continue without interruption. At this point a FISH / or PCR test is needed to confirm CML level.
This is what was done for me. No stimulation - just dose interruption followed by low dose resumption. And remarkably, once I was able to stay on 20 mg my CML level dropped dramatically. Lower dose actually worked better for me than the higher dose!
There is good news in this. Patients who have myelosuppression during treatment usually end up with outstanding response at a much lower toxic dose than others require. It worked for me because my doctor had the experience and insight to the biology.
I am "undetected" today with near normal blood count levels (I still live with some myelosuppression, but my normal now and acceptable) and on 20 mg dasatinib.
Even 100mg of dasatinib? That’s a lot for someone who seems sensitive to myelosuppression. It increasingly looks like it might be too much for anyone!
Transplant is no joke. You must exhaust every other option before going down that route.
I take 20mg of dasatinib. I have my lowest ever PCR results on this dose.
By the way, the mg of each TKI is not directly comparable. 45mg of ponatinib is a hell of a lot more than 400mg of imatinib in terms of potency. 15mg of ponatinib seems to be the best amount.
We want to be thorough and evidence based on this forum. What doses of each TKI was your wife taking?
David.
Hi Jason,
I don’t know if this helps but I had my counts crash when I started on Nilotinib after switching from Imatinib. I had to come off all treatment for 9 weeks mainly due to platelets and when I finally resumed treatment I was put on a very low dose of the same drug. The counts did drop again but not to the same extent and now I’ve been on the same treatment for 5 months and the blood counts have climbed albeit very very slowly. The main thing is even with a low dose the PCR results continued to drop. I’m due another result in two weeks as well so fingers crossed it continues.
For separate reasons I came very close to a transplant (due to other stem cell complications and the threat of AML) but my consultant was using this as a last resort. New evidence has changed the plan for me. Transplants do have good success rates these days but tackling the problem in other ways first is certainly seen as preferable. If you can speak to a CML expert I'm sure that would be a benefit. I was transferred from a consultant in haematology to a Professor in Myeloid Malignancy when things became difficult and he was much more clued up on things. It seems if this disease responds as it should to treatment then it’s fairly simple to treat, but any complications and an expert with more knowledge is probably required.
Wishing you the best of luck and positive outcomes.