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.
Tom Kidney stones usually pass within a week or 2 and you would know it when it passed as you will pee stones.Are you taking a calcium supplement. In my case I can't take them as I will get stones every time some people just can't take them. Kidney stones are calcium deposits. If the calcuim is builds up in your kidneys it will also build up in your viens as well causing heart disease. I would seen a doc for the flank pain for sure as high blood pressure will make your kidneys hurt as well. I can't help you with the other but I would see your primary ASAP.
I also have the feeling of a lump in my throat and I also am starting to think that my muscles get weak very quickly. I don't know about the other side effects and I hope everythings ok.I was just wondering about the problem you had with your ears and cheekbones? Sometimes I have alot of stiffness in my neck, shoulder, and back of head area. I feel a lot of pressure and discomfort in my ears and jaw too. Trey mentioned something about tissues swelling and so Ive been paying attention to salt in my diet to hopefully prevent this very irritating and uncomfortable feeling in my throat.
THe pain/swelling I had was most likely my parotid gland, that resolved mostly still sore from time to time but these other issues popped up with throat/rough patches in my mouth etc. I was told to massage the area, have sour items and drink ALOT of Fluids, espescially lemonade, could not drink grapfruit as suggested. the Ear Nose throat specialist seemed to be able to see thhere were issues there.
I get that strange taste in my mouth, too. I'm pretty new to CML and Gleevec, and the taste disturbances occurred after a recent dose escalation that only lasted a couple weeks. The other side effects from the escalation diminished, but the taste issues remain. These also occurred during my initial treatment after dx. Sometimes it's a metallic/blood taste, sometimes just a reduced sense of taste in general, and sometimes numbness of my tongue combined with lack of taste.
These tki's are just full of surprises aren't they. After 5 years I still get weird symptoms. But if I get something really out of the ordinary, I go to my pcp. We all have to remember that not everything we feel is not related to cml. Maybe you should see your pcp and get checked out, especially if you think you are having kidney problems. I was on Gleevac for 3 years and I had uti infections constantly, I switched to Sprycel 18 months ago and I haven't had one since. My taste buds are shot, I was never a very good cook anyway, so now my husband watches the food channel all the time and he likes to cook. I would never take that simple pleasure away from him. I hate to cook! I'm so glad I went off Gleevac and on Sprycel I have side-effects but nothing like what I suffered with G. I was afraid to change meds too, we all are, but I'm so glad I did. And I didn't have to have a bmb before I switched. I think nowadays they only do bmb at dx, unless a problem arises. I doubt you'll need another one right now. I have had an exposed salivary gland for over 3 years. And I'm not going to any more doctors, I drool a lot when I lie down, but so what, all I can think of is some frankenstein doctor wannabe will probably want to cauterize it. That's not gonna happen. If it gets too bad I'll use super glue.
I hope you feel better soon, Billie
positive should be positive period. my first 3 pcr's done at quest were all negative. since then .026% , .031%, .025%, .011% and my most recent at .014% all done through labcorp. my onc says it's comparing apples to oranges.WTF.both labs claim to use the international scale. am on 400 gleevec 33 months now. am on gleevec since it is easiest on heart. i know this doesn't help but i know your frustration, hang in there buddy.
OMG! Was at the gynecologist today. Mind you, it is almost 100F degrees today. The courier was walking out of the office, talking on cel, with an insulated bag that was wide open and falling sideways off her arm (heading out to the the hot weather outside). Hope nothing falls out or gets too hot. Kinda scary. We rely so heavily on these couriers to transport our precious bodily samples... Anyway, my onc uses LabCorp. They informed me that they are not on the Int'l scale. So why would not all of their offices be on the same scale? Crazy. My blood flies to NJ.
Best of luck to everyone,
Hi Tom: Sounds like you have a few different things going on. Have you had the kidneys checked for stones? I think you were referring to Parathyroid Gland which can be from the kidneys also. I have a problem with my Parathyroid, and have had scans etc. They decided it was from my kidneys, and I always have a high normal Calcium level on my blood tests. If I even take something like TUMS for upset stomach It used to raise my Calcium level. I have a lump in the front of my neck, and its a Calcium Deposit. My other question is did you go back up to 400mg after you had a increase in your PCR test to see if it came back to PCRU.
I was thinking of cutting back on my 400mg dose of Gleevec which I have been taking for 11 years, but I am waiting to see what my Oncologist thinks. I would like to see if it helps my kidney functions and Platelets.
This all can be very frustrating, and I hope you get some concrete answers.
actually was parotid salivary gland was very inflamed and saliva not a normal consistency....could be related to Kidney stones as well
I was kept on 300 mgs. because the issue is cloudy regarding the change in labs. big appointment this week to determine what new steps if any need to be taken.think that is a good conversation to have with your Onc. I imagine I could get either get bumped back up or switch drugs depending on my next PCR.
I actually feel a little better now but it seems to come and go. I plan on talking to my onc and/or go back to Primary Care Doc regarding these issues.
I'm sure you'll get lots of thoughts on these symptoms. I had two thoughts when I read your post:
1). Funny taste in mouth - could this be a result of acid reflux? If you have it, it can cause inflammation, and might be the reason you feel a lump back there.
2). Flank pain - what you describe reminds me of my BILs appendicitis, but I don't know if that is right or left side pain.
LDH can be used to check for cell turnover. A high cell turnover is seen in cancer patients. It can be also used to check for hemolysis, or breakdown of RBCs. Did your RBCs look to be in the normal range?