Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Hi Sharon T I am a Sharon T too. I remember having joint and bone pain . I had it on glevec also But it did pass. And even now I have it sometimes at night and I am now on Tasigna (600mg) and I am PCRU But it passes. I always think about my sister who just got through with 6 treatments of Chemo for O.Cancer and how she used to wake me up at night with her bone pain. She suffered way more then I did so I considered myself lucky. I always told her it was the bad cells being killed off by the good ones and that meant that the chemo was working. She took Advil for her pain. It helped a little. You are newly dx so as you will see from other comments-it is very very common to have bone and joing pain. Hang in there and it will pass. A warm bath always helped me. Take care Sharon T _____ From: [mailto: ] On Behalf Of trudell_7 Sent: Tuesday, January 26, 2010 7:24 AM Subject: [ ] bone & joint pain Hi- my name is Sharon and I was diagnosed with cml in Sept 09. My wbc count at the time of diag. was 286,000. My onc determined I was in the chronic phase by looking at the slides & this was confirmed with a BMB. I now have a white ct of 6,200 & PCH and FISH testing showed overall tx progress going as planned- I am on gleevec 400mg daily. My question is I suffer from bone and jt pain and although improved over the last few weeks I still have this pain sporadically and it can be quite debilitating at times. I was just wondering how common this is and was wanting some insight from other group members. I get a lot of good info. from reading these posts. thanks a lot! sharon t. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 I'm just a little ahead of you (July 09 and wbc of 480k), and bone/joint pain is my #2 side effect, behind fatigue and ahead of nausea. For me the answer to the pain is light exercise and 600mg of ibuprofen, when my stomach can handle it. My pain is mostly located in my hips, so taking a walk with the dog helps me enormously. I noticed that I did not experience much bone/joint pain until I started back to work, and started to spend my days sitting again. I would experience pain strong enough to keep me awake at night, which is quite a feat, considering my fatigue. Thankfully it didn't take me long to make the connection that when I spend the day working on my mini-farm I have no pain, and when I spend the day sitting I can have a lot of pain. It seems like an irony that I feel great after mucking out the sheep pen and tossing around bales of hay, but am in agony after a week of sitting in a cushy chair in front of a computer. Go figure. [ ] bone & joint pain Hi- my name is Sharon and I was diagnosed with cml in Sept 09. My wbc count at the time of diag. was 286,000. My onc determined I was in the chronic phase by looking at the slides & this was confirmed with a BMB. I now have a white ct of 6,200 & PCH and FISH testing showed overall tx progress going as planned- I am on gleevec 400mg daily. My question is I suffer from bone and jt pain and although improved over the last few weeks I still have this pain sporadically and it can be quite debilitating at times. I was just wondering how common this is and was wanting some insight from other group members. I get a lot of good info. from reading these posts. thanks a lot! sharon t. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Hi Sharon, I was on 800 mg Gleevec for quite awhile before changing to Sprycel. I had severe bone pain in my back and the only thing that helped was Ativan (tabs but sometimes IV). Also, I used IcyHot pain patches that helped somewhat. Best wishes, Virginia [ ] bone & joint pain Hi- my name is Sharon and I was diagnosed with cml in Sept 09. My wbc count at the time of diag. was 286,000. My onc determined I was in the chronic phase by looking at the slides & this was confirmed with a BMB. I now have a white ct of 6,200 & PCH and FISH testing showed overall tx progress going as planned- I am on gleevec 400mg daily. My question is I suffer from bone and jt pain and although improved over the last few weeks I still have this pain sporadically and it can be quite debilitating at times. I was just wondering how common this is and was wanting some insight from other group members. I get a lot of good info. from reading these posts. thanks a lot! sharon t. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Hi Sharon T. This is a good topic. I am PCRU also, and I also have Arthritis. I can tell with the Arthritis in my neck and knees, but I go through periods with pain at night and muscle spasms that make me jump up a few times a night. Then toward the morning hours, everything stops for some reason. I get my best sleep in the early morning hours, and it has caused me to oversleep at times. I do not take Tylenol, and was told no Advil due to kidney problem. I live with the pain. I am still on Gleevec 400mg. Anybody else still going through all this after many years of treatment. I can understand people having all this with just being in treatment for a few months or even years. > > Hi Sharon T > > I am a Sharon T too. > > I remember having joint and bone pain . I had it on glevec also > > But it did pass. And even now I have it sometimes at night and I am now on > Tasigna (600mg) and I am PCRU > > But it passes. > > I always think about my sister who just got through with 6 treatments of > Chemo for O.Cancer and how she used to wake me up at night with her bone > pain. She suffered way more then I did so I considered myself lucky. I > always told her it was the bad cells being killed off by the good ones and > that meant that the chemo was working. She took Advil for her pain. It > helped a little. > > You are newly dx so as you will see from other comments-it is very very > common to have bone and joing pain. Hang in there and it will pass. A warm > bath always helped me. > > Take care > > Sharon T > > > > _____ > > From: [mailto: ] On Behalf Of > trudell_7 > Sent: Tuesday, January 26, 2010 7:24 AM > > Subject: [ ] bone & joint pain > > > > > > Hi- my name is Sharon and I was diagnosed with cml in Sept 09. My wbc count > at the time of diag. was 286,000. My onc determined I was in the chronic > phase by looking at the slides & this was confirmed with a BMB. I now have a > white ct of 6,200 & PCH and FISH testing showed overall tx progress going as > planned- I am on gleevec 400mg daily. My question is I suffer from bone and > jt pain and although improved over the last few weeks I still have this pain > sporadically and it can be quite debilitating at times. I was just wondering > how common this is and was wanting some insight from other group members. I > get a lot of good info. from reading these posts. thanks a lot! > sharon t. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2010 Report Share Posted January 27, 2010 Hi Sharon, I was diagnosed August 2006 and am on Gleevec 400 mg. Though my bone pain is less now than during the first year, my joint pain is much worse. So I honestly don't know if the joint pain is caused by Gleevec or getting older (I'm 60.) Good luck to you! JoAnn > > Hi- my name is Sharon and I was diagnosed with cml in Sept 09. My wbc count at the time of diag. was 286,000. My onc determined I was in the chronic phase by looking at the slides & this was confirmed with a BMB. I now have a white ct of 6,200 & PCH and FISH testing showed overall tx progress going as planned- I am on gleevec 400mg daily. My question is I suffer from bone and jt pain and although improved over the last few weeks I still have this pain sporadically and it can be quite debilitating at times. I was just wondering how common this is and was wanting some insight from other group members. I get a lot of good info. from reading these posts. thanks a lot! > sharon t. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2010 Report Share Posted January 27, 2010 Hi Joanne: Lets blame it on our age. I have been on Gleevec since 2000, and I am 62. I figure were bound to have some kind of joint pain at our age. I do have Arthritis though. I used to worry about every little ache and pain, and could it be this or that. Well, its 11 years later, so I do not worry anymore. > > > > Hi- my name is Sharon and I was diagnosed with cml in Sept 09. My wbc count at the time of diag. was 286,000. My onc determined I was in the chronic phase by looking at the slides & this was confirmed with a BMB. I now have a white ct of 6,200 & PCH and FISH testing showed overall tx progress going as planned- I am on gleevec 400mg daily. My question is I suffer from bone and jt pain and although improved over the last few weeks I still have this pain sporadically and it can be quite debilitating at times. I was just wondering how common this is and was wanting some insight from other group members. I get a lot of good info. from reading these posts. thanks a lot! > > sharon t. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 Hi All. Does any one go to Dr. List in Moffit Center in FL. I am having hard time to reach his nurse for appointment as she does not return my calls T Sent from my Verizon Wireless BlackBerry [ ] Re: bone & joint pain Hi Sharon, I was diagnosed August 2006 and am on Gleevec 400 mg. Though my bone pain is less now than during the first year, my joint pain is much worse. So I honestly don't know if the joint pain is caused by Gleevec or getting older (I'm 60.) Good luck to you! JoAnn > > Hi- my name is Sharon and I was diagnosed with cml in Sept 09. My wbc count at the time of diag. was 286,000. My onc determined I was in the chronic phase by looking at the slides & this was confirmed with a BMB. I now have a white ct of 6,200 & PCH and FISH testing showed overall tx progress going as planned- I am on gleevec 400mg daily. My question is I suffer from bone and jt pain and although improved over the last few weeks I still have this pain sporadically and it can be quite debilitating at times. I was just wondering how common this is and was wanting some insight from other group members. I get a lot of good info. from reading these posts. thanks a lot! > sharon t. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 I have the same problems and side Effect. It got better when I reduced my med to 200mg whicH I don't recommend due to the risk of loosing your PCRU. I learned to live with side effect. One thing helped me is swimming or walking to relieve some of the pain. GOD bless you all T Sent from my Verizon Wireless BlackBerry [ ] bone & joint pain > > > > > > Hi- my name is Sharon and I was diagnosed with cml in Sept 09. My wbc count > at the time of diag. was 286,000. My onc determined I was in the chronic > phase by looking at the slides & this was confirmed with a BMB. I now have a > white ct of 6,200 & PCH and FISH testing showed overall tx progress going as > planned- I am on gleevec 400mg daily. My question is I suffer from bone and > jt pain and although improved over the last few weeks I still have this pain > sporadically and it can be quite debilitating at times. I was just wondering > how common this is and was wanting some insight from other group members. I > get a lot of good info. from reading these posts. thanks a lot! > sharon t. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 I go to Moffit, but I see Dr. Pinilla who is fabulous. Matt Florida Sent from my iPhone On Jan 28, 2010, at 7:14 AM, mtadros9@... wrote: > Hi All. Does any one go to Dr. List in Moffit Center in FL. I am > having hard time to reach his nurse for appointment as she does not > return my calls > > T > > > Sent from my Verizon Wireless BlackBerry > > [ ] Re: bone & joint pain > > > Hi Sharon, > I was diagnosed August 2006 and am on Gleevec 400 mg. Though my bone > pain is less now than during the first year, my joint pain is much > worse. So I honestly don't know if the joint pain is caused by > Gleevec or getting older (I'm 60.) > > Good luck to you! > > JoAnn > > > > > > > > Hi- my name is Sharon and I was diagnosed with cml in Sept 09. My > wbc count at the time of diag. was 286,000. My onc determined I was > in the chronic phase by looking at the slides & this was confirmed > with a BMB. I now have a white ct of 6,200 & PCH and FISH testing > showed overall tx progress going as planned- I am on gleevec 400mg > daily. My question is I suffer from bone and jt pain and although > improved over the last few weeks I still have this pain sporadically > and it can be quite debilitating at times. I was just wondering how > common this is and was wanting some insight from other group > members. I get a lot of good info. from reading these posts. thanks > a lot! > > sharon t. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 It can sure keep you up at night, can't it! I found when I was on Gleevec it was quite pronounced for the first few months, then lightened with time. Now I am on Sprycel and it's baaaaaaack. If it gets too bad, I take an oxycodone but I prefer not to. On Tue, Jan 26, 2010 at 7:23 AM, trudell_7 <trudell_7@...> wrote: > > > Hi- my name is Sharon and I was diagnosed with cml in Sept 09. My wbc count > at the time of diag. was 286,000. My onc determined I was in the chronic > phase by looking at the slides & this was confirmed with a BMB. I now have a > white ct of 6,200 & PCH and FISH testing showed overall tx progress going as > planned- I am on gleevec 400mg daily. My question is I suffer from bone and > jt pain and although improved over the last few weeks I still have this pain > sporadically and it can be quite debilitating at times. I was just wondering > how common this is and was wanting some insight from other group members. I > get a lot of good info. from reading these posts. thanks a lot! > sharon t. > > > Quote Link to comment Share on other sites More sharing options...
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