I have been on Glivec 400mg since diagnosis two and a half years ago. I have never got remission and for the last
six months I have been having worse side effects than usual. Mainly I cannot walk properly. My consultant changed me to tasigna
yesterday and I feel lost at sea. has anybody changed from Glivec to tasigna and what are the side effects you have actually encountered?
Does anybody know if hairloss is one of the side effects as I don't think I can cope with it. I'm not being vain I just feel like eveyone else
on here, been through enough. I'm afraid my consultant didn't give me the chance to ask these questions and my google searches are
pretty much showing the same side effects as Glivec. I will be on 300mg of Tasigna twice a day which is frightening in itself.
Thanks in advance everyone.
I was diagnosed with CML July 29th 2005 at the age of 57 years. I have been on Hydrea for 1 month for high platelets & Gleevec since Oct 2005.
My Labs for FISH stay between 92% normal and 100 % normal or undetectable, even though they may find a few fusions or signals, sometimes the lab will still say 100 % normal or still say undetectable. For a few years my PCR were undetectable until the lab changed their metric system over to the International scale. There lab results were questionable.
I went to another doctor where they do their own labs and interpret them.
I was only positive for the P210, which I think is great after 6 years of Gleevec, no other mutations.
P190 BCR_ABL Not Detected!
FISH was at 1.5% (3 ph+ cells in 200). 200 nuclei were examined 3 nuclei demonstrated 2 fusions signals. No cells demonstrated loss of the ASS gene probe.
THE NOMENCLATURE IS WRITTEN AS:
nuc ish 9q34(ASSX2,ABL1X3),22Q11.2(BCRX3)(BCR CON ABL1X2)3/200)
PCR was 7.623 for the b2a2 & the b3a2 BCR/ABL fusion gene. The test is compliatnt with the updated international (IS). I am not sure how many cell they studied the test result read;
7.623% %IS (<==100,000)
I can't compare the result with the other out of state lab. So I don't really have a base line yet.
However noncompliant these results might be the national guidelines. I am really happy with the last results, I think only 3 ph+ out of 200 is terrific. As you can test a dozen different drops of blood and get a dozen different results, plus I always consider a 5% margin of error. As far as the PCR well, others would say that is bad, but I look at it differently!! I am not sure but I believe that PCR have a large range of error. Also even if I was undetectable I could still have a million PH+ and the Ancient CML mother stem cell is still at large, so the TKI never really get to her or the root cause of curing or wiping out CML.
Looking at even a bigger picture is to consider are all my other labs:
COMPREHENSIVE METABOLIC are all normal except the,
GRF MDRD IS 58L range is >59. GFR Cockroft-Gault Est 51 is Low range is >=59.
Two cardiologist have told me in the past it would be better if I could quit taking the diuretic or take is every other day, as it causes kidney failure. However if I don't take them my hands swell up and I can barely use them it has been that was long before CML. Like I started taking a diuretic back in 1997.
HEMOGRAM & Auto differential are all norma, Except for a couple that are boderline or off my a fractionl!
I know there are the some who would want to move on to another drug. But when I consider all of the labs, I what I have been thru to adjust to the toxic side effect of gleevec over a 6 1/2 year period.
Not only that but even if you have a PCRU the person still has approximately 1 million leukemic cells in the body. The theory being if you can eradicate them will the ancient mother cml stem cell exhaust herself or die.
Well I read another article that people who had use interferon and TKI might have a chance of that.
Also read where there is a study or theory that HDACI might eliminate CML stem celss and also taking TKI to eradicate the PH+ BCR/ABL.
The thread i took some of this info from are:
I think if I were newly diagnosed I would try the Tasigna, but since I have been on Gleevec I happy to stay in a range, as long as my other labs are good and I am tolerating the drug, as apposed to traveling down uncharted territory and who knows. I am 64 years old and adjusting to meds is difficult for me physically and it is also stressful. I know that in the beginning of Gleevec my life was consumed with Cancer, and doctors, and labs, hospitals, and sickness. So for me I am happy to stay where I am, not saying that wouldn't change, but that is how I feel today!!
I am sorry to take up so much of your thread I think I will start a post of my own, with my new first time labs from Indiana University.