I need advice. My wife was diagnosed back in August. When diagnosed the dr says she was at 100% bcrabl. They started her on hydrea witch wiped everything way down. She was only on hydrea for two weeks. Then the dr switched her to glevic. Glevic worked for a month and her bcrabl dropped to 23%. Although it dropped the bcrabl it also took her platelets and everything else down to low. So they switched to spyrcel. Last bcrabl was done in February and it was at 67%. Today my wife received a phone call from her oncologist and saying to stop the tki that her blood work was to low. I know she said something about the toxicity levels being to much for her. So I guess my question would be what options are out there. Do we need to do a transplant or is it to early. Keep in mind I’m from South Dakota and we are always last to learn new things we are always behind the learning curve.
You are here
Not sure if wife tki’s are working.
It sounds like your wife took Sprycel from September to February and her bcr/abl went up from 23% to 67%. If this is accurate and there was no breaks then I think mutation testing should be performed. Sprycel was a fail if taken consistently but another TKI might help if Sprycel resistant TKI is identified. It is important to identify any mutation soon. Even if transplant is decided upon they will more than likely want to do a mutation test to decide what can bring her numbers down the soonest before proceeding. It's possible a mutation can be identified and another TKI will be successful.
As far as numbers dropping too low there are a lot of informative discussions on the forum regarding how people fought through it.
Hi Jason,
The early treatment stages of CML is often the most difficult. We need more information.
In addition to bcr-abl testing (PCR), she should also have had a bone marrow biopsy near diagnosis and then FISH testing. FISH counts actual CML cells (as a percent of normal cells) whereas PCR measures CML at the molecular level. Right now FISH is most important.
Also - has she been taking her Sprycel EVERY DAY? This is critical. Missing doses could easily explain a rise in PCR (and/or FISH). A mutation test is absolutely warranted if she has been truthfully taking her sprycel every day.
Hi Jason, I was just thinking about you guys the other day and wondering how things were going. It might be beneficial to get a second opinion at this point. If you can get an appointment with a CML expert, that would be best.
For those not familiar, here's a list of Jason's posts about his wife'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
Hi scuba. I will have to ask her about her fish test and bone marrow biopsy results. I know she had 1% blast cells. We just found that in some paper work last night but I will track down this info yet tonight it seems this is something we should know of the top of are head to fully understand the cancer. As far as taking the chemo. Yes she takes them at 8:30 at night right before bed every night. There has been some missing due to changing insurance. It took forever to get approval and when we mentioned it to the dr they didn’t do to much until it had been a month. I’m not sure we gave glevic a fair chance. Glevic was the one that was around a month late then we found out her bcrabl spiked and they switched her to the new one right away. Thank you for responding to my thread I always appreciate your knowledge and help with my question.
Hi RC Kirk. We actually have an appointment with dr hook from the Mayo Clinic in June. I am hopeful it sheds some new light and much needed information on my wife’s diagnosis. Thank you for sharing my story on here. I hope my story helps a new comer in some way. I can honestly say the information on this forum has been the most helpful for us in this journey. You guys are great. Thank you
Your response explains much. Being switched to sprycel is probably just as well. As long as she takes sprycel every day and does not miss a single dose, I suspect her PCR will fall. It may very well fall dramatically.
My only concern would be dose. 100 mg sprycel is now considered too high. She should be on a lower starting dose (no more than 70 - and 50 would be great). The NCCN guidelines are out of date, but still the standard until the new guidelines are published. Assuming she is on 100 mg - she should be monitored weekly for blood counts to verify no significant myelosuppression (especially neutrophils and platelets). All will normalize with time.
Hi Jason, Like Scuba said, if the Sprycel is causing myelosuppression then it would be better to take a lower daily dose than to have breaks in treatment. The doctor and pharmacist will probably tell you not to cut the tablets, but I've done it and lived to tell the tale. When her blood counts come back up, she might consider taking half of a tablet every day to see if her blood counts won't go too low. If they still go too low on half dose, then quarter dose would be the next thing to try. If you can get her doctor on board with this approach, then they can prescribe smaller dosage tablets.
Is she having blood tests every week? Was she prescribed 100 milligrams per day tablets?
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.