I have been having a difficult time ever since the end of April, when I injured my ribs, and the surrounding muscles and tissues are still giving me a lot of discomfort, I try not to take to much pain meds, and as I said before on a previous post, my hematologist said that he would take me off a while if I still have pain and discomfort but I told him this past August, that I was still having problems, but I did not want to stop the tki's because I wanted to see how my PCR was. it improved and I go back this November, but I am rethinking not being taking off the meds, because I hurt so bad when I lay on my right side and it has been so long and I am getting so tired of hurting, and not being able to enjoy life, because this injury has really side lined me, for about three months, I was semi bed confined, because the only position that helped was laying in my bed. I read somewhere that tasigna causes wounds and muscles to heal slowly. Have anyone gone off their meds for an extended time, and did it cause you to regress of lose a significant response.
How Long To Safely Go Without TKI
Posted 02 October 2012 - 08:36 PM
The real issue is that I doubt you would find any significant pain relief, and likely none at all. The healing may be slower in tendons and ligaments, but not muscle or other soft tissue.
Posted 02 October 2012 - 11:49 PM
I'm so sorry you're still in so much pain after all this time. Especially your ribs. That takes a long time to heal anyway. I notice that anytime I hurt myself it takes longer to heal, Ron took all the sharp knives away from me a couple years ago. I do agree with Trey, I doubt that going off your T will help. But we never know whats going on in our bodies any more. I keep repeating myself but 3 weeks after dx I got pneumonia, that's when I got my new onc that I have now, I was released from the hospital and my new onc wanted to see me in a week. When I went back to him he did bw and took me off Gleevac for about 8 days. My wbc must have still been low.That was only 5 weeks after my dx. The break didn't affect my bw at all. Then almost 2 years ago onc gave me a 5 week break from Gleevac,Then I switched to Sprycel and it didn't affect my bw at all. And I'm still a zero. Take those pain meds if you need them. I hate pain meds, and after any procedure I've ever had done the doc gave me a script for pain pills. I would get it filled but I very seldom used them. I preferred to take ibuprofin and if that helped me cope with the pain. But I knew I had the pain pills if I needed them, but I never hurt my ribs like you did. I know they don't wrap them any more, the hell with that I have every size ace bandage there is on the market. I'm not very graceful, which is how I earned the nickname Grace. I have my mineral ice, ace bandages, heating pad, and ice pack ready to go at all times. So if onc wants you to take a break from T don't worry about it. Women cannot follow doctors orders, the docs tell us to go home and do nothing and stay in bed. Yeah Right. So you're probably overdoing it. So please try to relax, I know it's so hard to do that so soon after dx, Just rest as much as you can, and remember not everything is cml related. Take care Lots o Luv Billie
Posted 03 October 2012 - 12:39 AM
i ended up being off of gleevec for almost a month when my platelet count dropped below 50. recently i was given permission to stop for 7 days because of my side effects. i've had no particular ill effects from either. as a matter of fact for those 7 days i felt better than i've felt in about 3-4 years. (shows how long i had CML without diagnosis i guess)
i think i'd talk to your doc and see if they have thoughts for other pain meds, and if they suggest specifically that stopping TKIs for a short time, i think i'd try it.
Posted 03 October 2012 - 05:50 AM
Did you have an MRI to rule-out a tearing of one of the Intercostal Muscles ( Avulsion )? Regards, Frank
Posted 03 October 2012 - 07:50 AM
While I have a great deal of respect for many of the posters here, I'd be very careful when considering the advise suggested. I have doubts that your onc would arbitrarily take you off your meds without a legitimate reason. When I was on Sprycel, I had a whole plethora of aches and pains. After taking a five week break they all disappeared, and I was subsequently put on Tasigna, and haven't had nearly as many issues. If you are having concerns about your onc's suggested course of action, I'd suggest seeing a cml expert. While this is a great forum for discussing the experiences that others have had, I prefer to defer to the trained professionals when deciding on actual treatment.
Posted 03 October 2012 - 10:04 AM
that's my feeling. i went away from here for months because i felt like i was being given medical advice every time i turned around. :::shrug:::
to the OP: most doctors are actually pretty competent, and i think if yours actually is recommending a break from your TKIs, i'd listen. the harm, if your CML is currently under control is probably going to be minimal, while the help might be immense.
Posted 03 October 2012 - 10:27 AM
Welcome back Castlefiber, I think of you from time to time. I hear what you are saying. But I do think that doctors minimize the side effects and the dangers of low counts and the trade off. I do feel many times we are over drugged. with these newer patents we are more like guinea pigs because the drugs got early patents. However I am aware of the reasons why. I think a lot of the folks that do trials are probably because they don't have insurance for the approved drugs, etc. Yes I am fortunate to have Gleevec, but I don't care to go to a newer patent just because they are looking for more guinea pigs, I do not feel like I have to be PCRU. As long as I am stable with CBC count close to normal I'm not worried. I am looking more at the quality of life and I am soon to be 65 years old.
Also doc's don't have to take the pill every day, live with the side effects. I remember going on Gleevec and bottom out, and nobody was listening to how miserable I was, and I think it went on for a couple of years until I had my gall bladder out. Surgeon said my gall bladder looked good, normal, no stones, but I guess it quit working. I did get better after wards. I have often wonders if my gall bladder went bad due to the CML, Gleevec, Hyrox, who knows. But I do remember I was not sick with high fevers and vomits until after Gleevec. The Onc at MDAnderson said CML had been working on me for several years. I know that to be true, because I went back to the primary doctor and pulled some old labs, she never told me my platelets were high and granulates were off a few years earlier, I don't know how she could have overlooked it and I trusted her completely. I don't trust any of them. Especially after I took care of my elderly mom for 3 years and my sick son for 3 months on life support. Lots of mistakes, make sure somebody is making notes and keeping track of what is going on.
My unprofessional opinion. PamSouth
Posted 03 October 2012 - 10:40 AM
i should probably have said things differently. i listen to my onc. and then i look at my life, and make decisions for myself.
i don't think that people here should do more than say "this is what i would do".
for me, i took 7 days off because i have nasty side effects constantly (i'm actually planning on having a discussion about switching meds this month because the side effects are getting worse and worse actually), and i suggested that i needed a vacation. i take a week every year and go primitive camping. the thought of taking gleevec and having to hang out next to port-a-lets for a couple hours every time i eat was not appealing. so i suggested the possibility of the drug vacation to my onc. my counts are under control and i'm "reasonably healthy".
if the OP is in the kind of pain that she is suggesting and the TKIs are the reason she can't take adequate meds to deal with it, if it were me, i'd take the docs advice and take a break from the TKIs. unless it turns into months i wouldn't worry personally. i've gotten over a lot of my fears of dealing with CML. i've decided in the last year that quality really is more important than quantity. that's why i'm considering switching meds. gleevec and i do not get along. :::shrug::: i'm interested in having a life.
my point isn't that i think oncs know everything. but i sure don't think i know everything because i'm a former research librarian who can't stop myself from reading every single article about CML i can find. i think we have to be our own best advocates medically. i decided to come back and find people who were dealing with what i'm dealing with, but personally, i'm entirely uninterested in lay people's medical advice. tell me about what you've dealt with, etc. (awesome!) BUT i read a lot of comments here that basically suggest that people shouldn't listen to their oncologists. i think that's a bad concept. instead if possible find an oncologist you trust, and actually talk to them. and then look at your own life and make your own decisions.
the hardest thing for me to come to was that i was in charge of my health not the various docs i see. most of us were taught to trust docs implicitly, and questioning them is certainly hard for me. but now i think about what i need and talk to my onc about it. and he and i are both happier with the situation i think. i know i am.
Posted 03 October 2012 - 02:18 PM
I had a MRI,CT Scan Xrays, but nothing showed up on the tests. My doc said just because it does not show up on any of the tests, it does not mean much. Sometimes you can not see injuries like that, I even have hip joint troubles that causes me not to be able to walk for exercise like I used to. Thanks Sneezy
Posted 03 October 2012 - 02:20 PM
Billie I had been doing a little more housework, because things around the house needs to be done, for months I was not able to do it. And I was just feeling down, Thanks everyone for your feedback. I will try to take it easy some. I will talk to my dr again about it in November when I go back.
Posted 03 October 2012 - 02:29 PM
Thanks to all the responses, I will ultimately make the decisions about what I will in the next month or so. I will talk to my Dr next months and see what he recommends, but I will again decide what I am going to do. Feedback makes you sort out a lot of things, and I like hearing others comments.. With the doc,opinions and myself, I will decide what I will do. Family and friends really do not understand all this if they are not going through CML, that is why I appreciate this Forum.
Posted 03 October 2012 - 03:57 PM
I'm at the point where I am willing to take a chance on switching drugs. I have been on Gleevec 2+ years. It has done well by me and for the most part my side effects have not been horrible, but they have been building slowly over the months and I have gotten to the point where I feel pretty old. I'm only 39 I have trouble getting out of bed, picking things up, moving around. I use to be quite active and now basic exercise hurts. My muscles have weakened considerably measuring by the amount of weight I can lift. On the flip side I am PCRU, normal counts, sleep well, no bathroom issues, etc. I tried for a long time to not rock the boat. But I have decided to try something new knowing I can go back to Gleevec if I need to. I will be switching to Sprycel on Nov 16. I will be taking a family vacation the week before and I intend to stop taking my TKI drugs while on vacation to purge my body a bit and make the transition to Sprycel hopefully a bit easier. I assumed my doctor would not be on board with this as the topic of taking a break was always met with a stern "NO". I told her I know she would not support the week off, but I feel it is what I need to do for my body to give it a break and make a better transition. to my surprise she said she agreed and felt it was fine for me to take the week off while on vacation and start Sprycel when I got back. I think my PCRU status helps. I am also realistic and do not think all my side effects will go away as soon as I stop taking my pill, These side effects took a while to build up and I suspect they will take a while to go away. But the reduced stress of not being on vacation and not taking the pill mentally will likely help me enjoy things a bit more. Mostly I am not taking the drug because I want it out of my system before I start putting the next one in. From what I have heard of other people's experiences, the ones who took a few days off in between seemed to transition easier that the ones who went from one pill one day to another the next day.
Posted 03 October 2012 - 08:09 PM
Within 3 days after I went off Gleevac my gi problems went away. They didn't just subside they disappeared. It was great, Billie
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