I think its time to get a second opinion about my condition. I've been on Gleevec since 2010, and I don;t feel any better. I have also tried Sprycel, and Tasigna, and had very serious side effects with those two medicines. My doctor doesn't seem to be concerned with how I feel, and really doesn't share much with me about my test. You all talk about FISH on here, or PCU, and I have no idea what you're talking about, and I think I should. I live in Connecticut, and if anyone from here is from Connecticut, and thinks they have a great care provider. Please feel free to pass on their name to me. If anybody else has gotten a second opinion, and was glad they did. I would love to here about it. I would love to hear from anyone with any suggestions on how to cope with this disease.
Posted 18 March 2012 - 07:18 AM
Posted 18 March 2012 - 12:57 PM
Start here: http://treyscml.blogspot.com/ . You MUST understand the essentials of this thing. You must understand the terms, and you must understand how to appreciate your health situation, because you're the first responsible for your life. Doctors may or may not care. If you have questions many guys in here can help.
Warm regards for CML WARRIORS out there,
Posted 18 March 2012 - 09:15 PM
Maybe as a start, but certainly not the only thing you should do, is call your doctor or stop in and sign a medical release of information so they can release copies of your labs to you if you have not yet done that. Then you could post your results on this board if you are comfortable with that and at least get a start in understanding some of your results with the help of this board. But in addition, I would pursue finding another doctor. You should have a more comfortable relationship with your physician than what you have. Hopefully someone from your area will respond with some recommendations. Hope this helps ! Janne
Dx'd: 8/2008. Started Gleevec 400 mg 11/08.
Drug break 2011.
Started Tasigna 4/11 450 mg.
Reduction to 300 mg Tasigna 1/2012.
PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)
12/2015 ? slightly detectable at probably less than 0.01% per Mayo Clinic.
4/2016 PCRU. Still at 150 mg Tasigna.
CESSATION: stopped treatment 7/20/2017.
9/6/2017: barely detectable at 0.01%.
12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.)
12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.)
Posted 19 March 2012 - 01:39 AM
Can understand where you're coming from - my initial specialist was a lovely man but didn't pass on any information, not sure if it was because he was from an earlier generation. When I changed doctors, my new doc gave me a print out of my blood test results straight away. I have also been able to access all of my results since then through my GP. Until they find a cure, it will hopefully be a long journey for us with our doctors, so you need to find one you're comfortable with.
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