I have a few questions regarding testing and side effects. I was originally diagnosed in 08, was treated with Gleevec 400mgs and achieved PCR-U in about a year. I remained that way and eventually switched to 300 mgs (April 2011)to help with side effects, I was on 300 mgs for about a year and my April PCR showed a positive result that was .014%. My onc says that this could be due to the difference between the labs and we will wait and see what happens with next PCR, will get the results in a week. I understand that there is a l;ack of standardizing for measure of the PCR, but I would think it should be fairly simple to consistently report the presence or not of the gene; it's either there or not. My Onc does not seem too alarmed and said it is still a great response, far past a 3 log response which it sounds like he consideres a perfectly suitable response. My oncologist also said that if I was diagnosed now he would probably treat me with one of the other TKIs. This makes me think that he is contemplating recommending a drug change. I guess I am stressing about this a little more then I thought because I am mentally preparing myself for a drug change and maybe a BMB. Does the change in labs and procedures really cause such inconsitent results in the test. If so it really reiterates the importance of getting on a standardized scale.
I had been doing great side effect wise until the beginning of this year. Quite frankly I wonder if something else is going on. Almost every morning when I wake up now I am in really signifigant pain in back/flank area, can be ieither side but more often on my right. It is really bad that it forces me to get up, but then I have dfifficulty walking, the pain radiates down to my groin area and usually improves after an hour or so. When I googled it it seems that it sounds like kidney stones, I have heard that can be extremely painful for days, cause fevers etc...but I do not have that severe of symptoms. I occasionally get nauseated from it but it passes in an hour or so. I also have generaly muscle pain in my arms so bad that I have difficulty raising my arms above my head. I also have been dealing with suspected salivary gland stones, it startted near my ear/cheek in the parotid gland, I went to an ENT specialist and he recommended some at home remedies it that has improved, I have a vague feeling something else is not right in my mouth/throat, it feels almost like there is a lump in my back of my mouth/throat and get a strange metallic taste. I wonder if these could be more salivary gland stones. I was wondering if the kidney stones/salivary stones and occasional gout like pain could be related. Does anybody else experience these typoes of side effects/conditions. I noticed that the Onc also had blood drawn for Lactate Dehydrogenase which appears to be something that measures muscle break down. Does anybody else have these types of side effects / symptoms or know what the rationaly is for this Lactate Dehydrogenase test.
Sorry to ramble so long but seems like alot of things are beginning to creep back up on me.
Thanks to all.