I am getting my treatment for CML diagnosed 2 1/2 years ago inNY at Sloan Kettering . I have been on Gleevec 400 mg daily and my numbers have steadily gone down. I go for blood draws every three months and this last one jumped from 0.004 to 0.116. My doc wants to repeat the bloods in one month and has told me not to worry. However I am sooo frightened!!! Anyone have similar issues?
Thanks
Welcome Bendicco!
I went through something similar during the last couple of years. I started having increased PCR scores after the pharmacy changed me over to generic imatinib. Hopefully yours is just a false result. Are you still on original Gleevec or did they switch you to generic? Anyway, you need not be frightened as there are plenty of other options if your result is repeated on the next test. I switched to Sprycel for a while and I've had my best PCR scores since changing.
Kirk
Here's my response history: My diagnosis started after I gave a routine blood donation to the Red Cross. The hematologist with the Red Cross notified me that my WBC was high and recommended I follow up with my general doctor.
09/2012 p210 transcript 118.7% IS @ Dx, t(9;22) translocation in all 20 of the metaphases examined, FISH - 93%, WBC 65.5, began Gleevec 400mg/day
12/2012 003.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome, FISH - 5.5%
2013 000.914%, 000.434%, 000.412%
10/2013 000.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormality
2014 000.174%, 000.088%, 000.064%
2015 000.049%, decrease to Gleevec 200mg/day, 000.035%, 000.061%, 000.028%
2016 000.041%, 000.039%, 000.025%
2017 000.029%, 000.039%, switched to generic imatinib 200mg/day, 000.070%, 000.088%
2018 000.233%! Tried switching to dasatinib 100mg/day - I want zero #4 back! Dasatinib at 100 and then 50 mg/day did not agree with me so I went back to generic imatinib 300mg/day. 000.013% The dasatinib did seem to be effective. It was probably just too high of a dose for me. Went back to a lowered dose of dasatinib, hopefully that will keep the side effects away and still be effective. 000.007% Dasatinib at 25 mg/day seems to working! 20mg/day Sprycel or 200mg/day imatinib 000.006% 11/19-21 three day fast
Thanks for your response. I’ve been on generic Gleevec from the beginning. Although there was a brief time initially when first diagnosed and seeing a local oncologist that I was on Sprycel for a week and landed in the hospital for four days with horrible spasms in my calves. That’s when I switched to Sloan in NY and since have been on Gleevec and edoing well till the jump in numbers now. I hope you’re right and either the results were false for some reason. I’m not looking forward to experimenting with other meds but I gotta do what is needed. Thanks again and I wish you good numbers!!
Hi Bendicco and welcome,
This latest PCR result rise is more than likely a 'blip' caused by some problem with the blood sample- i.e it may have been contaminated between the draw and arrival in the lab... or for some other reason. Please do not be scared. This often happens as PCR testing is very sensitive and it depends on lots of things being right. PCR results are viewed as a trend rather than a one-off.
Best wishes,
Sandy
Thanks Sandy, I’m hoping that’s what it is! Interesting that two years ago the pharmacist told me not to continue taking the garlic supplements I was taking along with some other supplements as they may interfere with the Gleevec. She said to be safe I shouldn’t take any supplements with ingredients beginning with G. Of late I have been using a lot of garlic powder and wondering if that did it. Have you ever heard of anything like this?
Take nothing beginning with G? Besides grapefruit, that doesn’t sound like sound scientific advice!
In general, TKI takers like us want to stay clear of things that muck around with a family of enzymes called P450 enzymes. Particularly CYP3A4. Grapefruit is the one that is best known that has a significant effect. Lots of other things have effects on it too, but usually very small and nothing to be concerned about.
All the same there is some evidence that garlic powder can interact with some P450 enzymes, but crucially not CYP3A4 which we are most concerned about.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2951329/
David.
