Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 : My doctor would tell me that my nose bleeds and cramping were not a side effect of Gleevec, even when I told him that when I went on breaks, they would disappear. I did not want anything to alleviate them, but I did want him to validate that I was having issues. And while he was my good friend, I finally had to find another doctor who did care about my QOL other than just " grin and bear it " . As for leg cramps, I have always found that heating pads and hot soaking tubs would help me. It also helps if you have a massage therapist or even a good friend try to massage your legs and stretch them. If cost is an issue, you can sometimes go to massage therapy classes where they need willing subjects, which I have done on several occasions. Tonic water, salt tablets and other items have always been suggested, but good stretching and warm heat are what has worked best for me. I hope you sleep well tonight. With the warmest regards, Matt CML of Florida Dx January of 2005 Gleevec March of 2005 Tasigna November of 2007 Number 1078 in the Esteemed Zavie Zero Club Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2009 Report Share Posted August 25, 2009 I have had cramping and aching for months now but my Dr says that the Gleevec has nothing to do with them. Maybe it don't but they don't care enough to find out why I have such horrible pain...I ache from my neck to my toes and most of the time it is severe pain. Now the general Dr that I went to once says that he wants to take me off the pain meds, xanax and zoloft. I ran out of the zoloft and haven't had the money to get it refilled and I am almost out of the pain med..God forbid when I run completely out and also almost out of the xanax so I will probably be a real witch once I run out of all of it. The pain is the worst and it really scares me to think that I won't have anything to help with it but HE is the Dr so I guess HE knows what he's talking about. They think they think it's all in my head! Maybe it is!!! Not feeling so good, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2009 Report Share Posted August 25, 2009 I haven't read all the posts but I am concerned that the dosage is being reduced down to 200 instead of changing meds. I read somewhere that lower than 400 is a sub therapeutic and could lead to resistance. Maybe it no longer holds true From: dickie_64012 <dickie_64012@...> Subject: Re: [ ] Leg Cramps Date: Sunday, August 23, 2009, 11:21 PM I was diagnosed in 2003 and I had leg and foot cramps most of the time until the fall of 2008. We tried the iron infusions, iron supplements, quinine, potasium, and nothing seemed to help. My diagnoses included iron defiecency anemia and finally the 400mg of Gleevec was causing my RBC to fall and I required transfusions and finally took Procrit. When my RBC reached 11 I no longer had leg cramps. While I have been on a Gleevec vacation for 24 months I am anxious to see my next CBC+Dif in 2 weeks as I am experiencing some minor foot cramps when I sleep. I will also send off my RT-PCR so I will have the results by the end of the month. The bar of soap did provide some relief but it was only a temporary solution. H. > > Don't know if this is a correct answer or not... but when I get those... I > eat a banana with a few meals the next couple of days. I think it is low > potassium. > Tammy > >_____ > > From: karynt@... [mailto:karynt@ ...] > Sent: Sunday, August 23, 2009 12:55 PM > groups (DOT) com > Subject: [ ] Leg Cramps > > Hello Everyone- > Ive been on Gleevec for 13 months now and have tolerated it fairly well. > However, The leg cramps i would get now and then have now became an > everynight event sometimes 2 or 3 times a night i will awake to horrible > pain on my left leg or foot. Does anyone have any suggestions? Are there > supplements or vitamins i can take? Please let my know if you have > experienced the same thing and how you handle it. > Many thanks, > > Karyn > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2009 Report Share Posted August 25, 2009 I think that is a legitimate concern so we are going to watch closely. Sent from my Verizon Wireless BlackBerry [ ] Leg Cramps > > Hello Everyone- > Ive been on Gleevec for 13 months now and have tolerated it fairly well. > However, The leg cramps i would get now and then have now became an > everynight event sometimes 2 or 3 times a night i will awake to horrible > pain on my left leg or foot. Does anyone have any suggestions? Are there > supplements or vitamins i can take? Please let my know if you have > experienced the same thing and how you handle it. > Many thanks, > > Karyn > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2009 Report Share Posted August 25, 2009 Hi Chi, You're absolutely right. There is a very real concern about resistance forming if a patient takes a sub-therapeutic does. There have been a very small number of patients however, who have been able to stick with a lower than normal dose without problems but these patients have been followed by the top experts in CML and had their blood levels monitored to see how they were metabolizing the drug. When checked, they were found to have adequate blood levels of the drug despite their reduced dosage which explains why they have been able to continue on the subtherapeutic dose without problems. If anyone is considering lower their dose to sub-therapeutic levels, I strongly urge them to consult with an expert who is willing to monitor blood levels of the drug to determine how their body is metabolizing the drug and be able to confirm that the dose is safe. Tracey > > > > Don't know if this is a correct answer or not... but when I get those... I > > eat a banana with a few meals the next couple of days. I think it is low > > potassium. > > Tammy > > > >_____ > > > > From: karynt@ [mailto:karynt@ ...] > > Sent: Sunday, August 23, 2009 12:55 PM > > groups (DOT) com > > Subject: [ ] Leg Cramps > > > > Hello Everyone- > > Ive been on Gleevec for 13 months now and have tolerated it fairly well. > > However, The leg cramps i would get now and then have now became an > > everynight event sometimes 2 or 3 times a night i will awake to horrible > > pain on my left leg or foot. Does anyone have any suggestions? Are there > > supplements or vitamins i can take? Please let my know if you have > > experienced the same thing and how you handle it. > > Many thanks, > > > > Karyn > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2009 Report Share Posted August 25, 2009 Thank so much for the info on leg cramps. Can someone explain the bar of soap theory? Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2009 Report Share Posted August 25, 2009 I think it works like wearing a copper bracelet to ease arthritis pain: if you believe it works, and you have no pain, then it works! If you believe soap under your mattress (blanket) works, and the cramps go away, then it works. No medical explanation. I don't use the soap theory, but do wear a copper bracelet, and have taken no meds for arthritis since. Bobby a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan 06/02/08 - CCR ( in 4 weeks) 02/13/09 - XL trial ended due to side effects 04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz From: Karyn Tilander <karynt@...> Subject: [ ] Re: Leg Cramps " " < > Date: Tuesday, August 25, 2009, 10:25 AM Thank so much for the info on leg cramps. Can someone explain the bar of soap theory? Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2009 Report Share Posted August 25, 2009 Hi all, Dad was given a blood test called CML-Gist Alliance Blood Level Test. It is done by Avantix Lab and they pay for it to monitor his Plasma Level. When he was on 400 mg of gleevec the plasma level was 1700. They dropped him to 300 mg and his plasma level dropped to 1460. Now he is at 200 mg and we are waiting for the test results on that. They told us the theraputic level is 1000. That's the info I have. Lottie, what do you know about this test? Tracey your info was really helpful also. I hope this lab and doctor is directing us correctly. Definitely do not want to deal with drug resistance. Lots of love, Lori > > > > > > Don't know if this is a correct answer or not... but when I get those... I > > > eat a banana with a few meals the next couple of days. I think it is low > > > potassium. > > > Tammy > > > > > >_____ > > > > > > From: karynt@ [mailto:karynt@ ...] > > > Sent: Sunday, August 23, 2009 12:55 PM > > > groups (DOT) com > > > Subject: [ ] Leg Cramps > > > > > > Hello Everyone- > > > Ive been on Gleevec for 13 months now and have tolerated it fairly well. > > > However, The leg cramps i would get now and then have now became an > > > everynight event sometimes 2 or 3 times a night i will awake to horrible > > > pain on my left leg or foot. Does anyone have any suggestions? Are there > > > supplements or vitamins i can take? Please let my know if you have > > > experienced the same thing and how you handle it. > > > Many thanks, > > > > > > Karyn > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2009 Report Share Posted August 25, 2009 Hi Lori, Your Dad's doctor sounds like he's doing exactly what he should be doing. If the blood test confirms that his blood levels are adequate at the 200mg dose then he should be fine. It's the people who reduce their dosage without laboratory evidence to support the reduction, who should be concerned. Tracey > > > > > > > > Don't know if this is a correct answer or not... but when I get > those... I > > > > eat a banana with a few meals the next couple of days. I think it > is low > > > > potassium. > > > > Tammy > > > > > > > >_____ > > > > > > > > From: karynt@ [mailto:karynt@ ...] > > > > Sent: Sunday, August 23, 2009 12:55 PM > > > > groups (DOT) com > > > > Subject: [ ] Leg Cramps > > > > > > > > Hello Everyone- > > > > Ive been on Gleevec for 13 months now and have tolerated it fairly > well. > > > > However, The leg cramps i would get now and then have now became > an > > > > everynight event sometimes 2 or 3 times a night i will awake to > horrible > > > > pain on my left leg or foot. Does anyone have any suggestions? Are > there > > > > supplements or vitamins i can take? Please let my know if you have > > > > experienced the same thing and how you handle it. > > > > Many thanks, > > > > > > > > Karyn > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 Thank you Vicki. I am going to try your remedy today. Guy ________________________________ From: Vicki <vickistu@...> Sent: Mon, August 2, 2010 1:15:01 AM Subject: [ ] Leg Cramps  Try taking some calcium/magnesium about an hour before bedtime, get it in a Gelcap if you can find it--it is released more quickly into your system and should help with relaxing the muscles. Vicki > > Dear Friends: > > I am suffering dreadful leg cramps which keep me up half the nights. Has > anybody got any suggestions to ease them a bit. My doc just says to buy some > natural cure called " leg cramps " from the pharmacist but they don't do any good > > at all. > > Guy > Quote Link to comment Share on other sites More sharing options...
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