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CML for 6 years but new to the boards... doc asking if I want to switch meds?

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#1 RobinM1403989271


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Posted 21 December 2011 - 04:45 PM

I have been on Gleevac since the start of my CML diagnosis six years ago; I haven't had any issues (other than the normal side effects) with it and my counts look good. Doc says I am in remission. On my last visit, my doc said he was thinking of switching me to one of the new meds. I am confused... if everything looks good, then why would I want to switch? Anyone have any ideas on this and why he would instigate a switch? Has anyone switched (without it being due to Gleevac not working for them) for some longer term goal that I am unaware of? - Thanks in advance for your help.

#2 CallMeLucky


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Posted 21 December 2011 - 05:13 PM

You may want to check your doctor's schedule for that day and see who he had lunch with.  Hopefully not a pharmaceutical rep from Novartis or BMS.

When you say you are in remission, do you know what level of remission you are at?  Are they able to detect any BCR-ABL via PCR test?

If your PCR is negative then there is no reason to switch if you are happy, in fact you are probably better off not switching.  If PCR is still detectable, you could debate if it makes sense to switch.

Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%


#3 Happycat


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Posted 21 December 2011 - 08:46 PM


I'm of two minds here. Either your doc is trying to help Pharma drum up patients for their newer drugs ,

or there is something about your numbers he doesn't like and thinks anew drug would help.

I'd talk to him and ask specifically why he is considering a switch.


#4 pamsouth



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Posted 21 December 2011 - 09:42 PM


I have been on Gleevec since 2005. My old Onc has been on me for the last year to switch to Tasigna.

I thought she was crazy, still do, or just Novartis putting a big push on doctors to switch to the new patients before the Gleevec patent runs out and become generic, at a much lower price.

My PCR did go up but they were, even in the opinion of my old onc view point, much room for error or questionable .  Did another PCR a week later, dropped way down, no way could the other two PCR been correct for a number of reasons.  So I went to the lading cancer research hospital in Indiana, Indiana University, (second opinion) where they have a group of Leukemia experts (the think tank) and Doc agreed the PCR were questionable.  He said he did not necessarily go by the guidelines as they are set for the whole world, many gray areas and every person situation is different.  He did not think it necessary to have such a deep response as long as number didn't continue to climb up, to suspect that there was trouble, like mutations or gleevec not working. He even said some of his patients take holidays or go off their med's for a year and when the number go back up, the patients usually go back on some TKI.

To make a long story short I called the Lab company in New Jersey.  My labs were sent UPS from Indiana to New Jersey.  Right there is a problem in itself, in that blood becomes tainted very easily and it is processed over and over and magnified over and over, so much room for error. Anyhow the lab had switched a year to a year 1/2 ago to the International scale, so another words nothing had changed regarding my CML only the way the lab was reporting!!

Anyhow I think the old onc mostly deals with breast cancer.  I wouldn't be surprised if I were her only CML patient.  So I have changed Onc and they will do my labs in Jan, then another 1 in three months, and then another in three month to get a baseline.  They do their labs in house and interpret their own in 48 hours or less, so hopefully the labs will be much more accurate.

I am not saying I wouldn't ever change down the road.  But I certainly will continue to do a lot more home work/research and educate myself,  before I take on changing drugs.  I figure I am the patient and I am driving the bus, my choice!!  My old Onc said "oh it will be a piece of cake."  She just about drove me nuts, office constantly calling me to come back and talk to doc, what and go over the same ground, NO, we were just bumping heads!!   Well I have been reading these post almost daily.  Rarely do I see anyone who thinks going on these drugs or switching drugs new or old,  is a piece of cake.  I have even read some post where patients switched from Gleevec to a newer drug then had to go back to Gleevec and had a new set of side effect on Gleevec, since they had switched to other drugs.  So how can she know it will be a piece of Cake, she is not GOD!!

Besides my health insurance won't even give me 90 supply anymore, only 30 days right on the line.  Plus need to have doctor call UAW trust every year to verify I need the Gleevec.  What do they think she is writing the prescription or and and Medco calls me every month, only a thirty day supply right down to the wire. Will feel better when I can afford Gleevec as a generic if I should lose my insurance.  Of course the old Onc says I will make sure you get the drug.  Well I know some who complain they have to pay a lot for the drug, how do I know what the guidelines are.  I am not on Medicare or Medicaid.  I would hate to wipe out our assets.  So as long as I can stay on Gleevec I find peace of mind down the road if I lose my insurance I will be able to afford it as a Generic. 

Remember if Gleevec is truly not working then I would reconsider changing, as if Gleevec isn't working it would matter if became Generic.

I am just not convinced that I need to change. I think big Pharma and the Federal government have something to do with these expensive patents and persuading doctors to persuade patients to change. Just like cutting off the co-pays for Gleevec and giving co-pays for Tasigna I think that tells where Novartis thoughts are, money, money.  I think CMl is rare and the federal funding has been slashed for research plus the slow economy on insurance, etc.

I don't know any of the above to be true, just my gut feeling.

Pam South

Pam South


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