Novartis marks World CML Day with update on global research program to evaluate whether Ph+ CML patients can live treatment-free
Posted 10 October 2013 - 10:12 PM
Hi Gerry: I just did a phone survey the other day. It was one of those payed surveys, and it started out asking me my history etc. Then the rest of the time was spent asking me if I would consider stopping my TKI treatment to see If I stayed in the PCRu status. They said it was being done through Novartis. I told them that I would have to see some real results before I would do anything like that. I told them I have not even been able to get my doctor to let me cut down on my dose of Gleevec.
I know Trey and others have cut back their dose, and have remained PCRU. I guess I am just not brave enough to push the issue yet.
I wondered why Novartis would be sponsoring this survey, as they would lose money if people stopped taking their TKI drug.
Posted 10 October 2013 - 11:22 PM
I guess you would have to measure it against the prestige of having a "cure" for some people - which in turn would make it the drug of choice for people newly diagnosed. Plus remember people have to get to PCRU, which doesn't occur with everyone.
I'm also on reduced dosage of 300mg, which has made a difference side effect wise and I'm looking to stop Glivec in mid November. I mentioned to my doc I'd rather have a go at coming off (and hopefully succeeding) than have potential issues further down the track from the Gleevec. Plus my doc didn't seem keen on me only taking 200mg, so now he gets to be on my journey with zero Gleevec instead.
You need to be strong with your doc and tell here you are going to undertake a dosage reduction, if that's what you want to do. I think we've talked before about whether she is using you as a test case for long term usage of 400mg Gleevec. There is a difference in how you feel when on a lower dose.
If I had been on Gleevec as long as you and at PCRU for your length of time, I would be on 200mg, or having a go at stopping the TKI all together. But it is your choice, in the end and we all stand behind whatever you choose to do.
Posted 16 October 2013 - 12:27 PM
Hi Gerry: I am definitely going to talk to her again in January when I get my next PCR test result. I really do not think she is using me as a test case for the 400mg dose. I think she is really afraid of me losing my response after all these years if I was to reduce my dosage. She did tell me she does not have any other patients that are doing as well as me, so she has nobody to compare me with. I do appreciate everyone's feedback.
Right now I would like to have my magnesium checked, because the leg cramps and spasms have been so bad. I have to take Nexium everyday to prevent that GERD issue. I know Nexium wipes out your magnesium with long term use. I have so many other things going on also, and if I could just get some relief from side effects of Gleevec I would probably feel a lot more energetic.
Posted 16 October 2013 - 07:18 PM
Originally my doc wasn't keen on reduced dosage when I first started talking to him about, but he did come round. He also didn't like the idea of anyone stopping their TKI, but once again he has come round, especially as the monitoring will be done monthly (for the first six months) and if the CML pops its head up again, he knows I will return to taking my TKI.
Apart from your magnesium levels, it could also be that you're not drinking enough water. I have noticed the cramps are worse for me if I take a fluid tablet. You've mentioned that you don't like drinking water and prefer coffee - caffeine is a diuretic as well. You could try drinking one of the herbal teas if you don't like water.
Talk to your doctor again about dropping your level of Gleevec, even if you drop it to 300mg to start with and see how you go, Not sure if you have to pay for your PCR tests, but if you don't you could increase your level of testing to three monthly for a little while and that may make her feel more comfortable.
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