I have been on Gleevec since March '09 and get hand and leg cramps fairly often. Somewhere along the way I read that I should put a bar of soap in between my bottom and top sheets and it would help. I know it sounds crazy, but it actually has worked for me because when I've changed sheets and forgotten to put the bar back, the cramps return. I don't have the tingling but hand cramps are a problem. I've also had at least 5 eye bleeds in the last year.
I try to look at the big picture and I am beyond grateful that my life, for the most part, continues as normal. What would we do without Gleevec, Sprycel and Tasigna??????????? Marcie Baltimore -----Original Message----- From: Teepee710 <[email protected]> To: cmlhope <[email protected]> Sent: Tue, Dec 6, 2011 3:31 pm Subject: Re: [CMLHope] Re: nosebleeds I was wondering if anyone has had any problems with pins and needle feeling in there hands. I thought i have read in the past about hand cramping with Gleevec is that true. This is mostly pins and needle feeling in hands...once or twice hand cramping.. Could any of you on the list tell me anything you know about this.... Thank You Teepee In a message dated 10/25/2011 3:08:16 P.M. Eastern Standard Time, [email protected] writes: The first brain bleed, my face and arm on the right side went numb. I happened to be in a doc's office with someone I was watching over. They insisted on shipping me via ambulance to the E.R. across the street. They saw it on an MRI. A cat scan showed it also. Then 2 yrs later I had a full-blown stroke when I was NOT on gleevec. Had an eye bleed again this week, so am becoming a little concerned. Last week my cbc showed normal. 18's, Susan Hi and how did you know you had a brain bleed? Jeanie<3 In a message dated 10/1/2011 4:41:07 P.M. Pacific Daylight Time, [email protected] writes: Teepee, I have been off gleevec for 4 1/2 years now since the first brain bleed. I'm still in cellular remission and am so glad. I am on no medication for CML at all, but very very slowly my numbers are climbing up there. I had been in total remission for 2 years before going off. I'm sure that helps. More doctors are giving vacations from the drugs as they see people are holding their numbers if they've been in total remission for a long time. My doc wants me on something, but I am waiting until I come out of cellular remission. Blessings, Susan F. Zimmerman -----Original Message----- From: Teepee710 <[email protected]> To: cmlhope <[email protected]> Sent: Sat, Oct 1, 2011 12:59 pm Subject: Re: [CMLHope] Re: Problems with Food and Gleevec MaggyMay Thanks... i had mentioned that to him about the saline solution, as our weather is changing. TEEPEE In a message dated 10/1/2011 8:36:18 A.M. Eastern Daylight Time, [email protected] writes: Gleevec dries out the sinuses which then creates nose bleeds. Use a saline nasal mist and a neti pot. It helps a lot. Be sure if u live in the snow country your furnace has a working humidifier. On Sep 30, 2011 9:46 PM, <[email protected]> wrote: > Could anyone tell me if thee is any connection between nose bleeds and > gleevec. > > teepee > > In a message dated 9/30/2011 3:38:41 P.M. Eastern Daylight Time, > [email protected] writes: > > > Was on Sprycel and experienced shortness of air. Hematologist stopped > the > Sprycel. Before that was on 400mg Gleevac and it was stopped due to Eye > bleeds, bilateral. Now am reinitiated on Gleevac 100mg every day and > all > is well. Barely detectable Philadelphia Chromosomes per the BCR ABL. > > > > > > > From: kellyelise <[email protected]> > To: CMLHope <[email protected]> > Sent: Friday, September 30, 2011 1:05 PM > Subject: [CMLHope] Re: Problems with Food and Gleevec > > Thank you for the info on Dr. Talpaz - I had sent him an email a while > back but received no reply. My onc NP recommended Dr. Jorge Cortes at > MD Anderson in Houston - and that's where I'm going!! They called > yesterday and I have an appt. on Oct. 10. Thank God for my mother, I > could not afford to go without her. Wishing you all the best!! Those > on Sprycel, please watch for symptoms of SOB, weakness, inability to > climb stairs, weight loss (initially I had a lot of weight gain - > Aldactone and Demadex took most of the fluid off), loss of > appetite, > etc. You can find the symptoms of PAH through any search engine > (Google). It is a disease that is VERY difficult to diagnose!! > > Bless you all!! > > Kelly > > On Sep 27, 9:30 am, kellyelise <[email protected]_ > (mailto:[email protected]) > wrote: >> Suzieq, >> >> You are not whining or complaining!! We all have to vent sometime! >> Quite frankly, I am grateful to be off all TKIs as of now. The Sprycel >> about did me in. I don't know if you remember, but, I now have PAH >> (pulmonary arterial hypertension) as a result of the Sprycel. I >> underwent a heart cath in 1/11 and am now sporting a continuous >> infusion pump carrying Remodulin through a central venous catheter. >> Not pretty, but I feel better than I have in YEARS. I can actually >> walk around town now whereas I could barely climb 3 steps without >> help. >> >> My onc wants to put me on Tasigna, but I am highly resistant. I'd >> rather wait until the other 2 new drugs come out and see if I >> could >> try one of those. I have tried getting an appointment at MD Anderson >> with Dr. Jorge Cortes, but, so far have been unsuccessful. I REALLY >> need a CML specialist....I live in Ohio....any ideas anyone??? I am >> willing to travel, hopefully, before the snow flies. >> >> I stopped complaining, Susieq, and the PAH ramped up to the point I >> was taken by ambulance to CCF (50+ miles away from where I live). My >> onc always made me feel like I was a whiner...so, I stopped >> whining. >> "No one else on Sprycel has had these symptoms....." Well, I bet NOW >> they DO!! He still denies that the Sprycel was the culprit even >> though my cardiologist and pulmonologist BOTH dictated in my discharge >> summaries that it WAS the cause....it progressed too rapidly to be >> anything else. Also, I am on a minimal dose of the Remodulin and my >> health has dramatically improved. I just wish I could get put on a >> subcutaneous pump....bleh! Nothing like waking up in the heart >> failure unit with no clue.... so, now I'm complaining, ha ha!! >> >> Keep fighting, the side effects suck!! We will all just muddle >> through and praise the fact we are still alive even though we >> feel >> like shit. Truthfully, I am grateful to still be alive and I wouldn't >> be if hadn't been for the Gleevec putting me in remission in the first >> place - now I am waffling between undetectable and "weakly positive" >> and I have been off the Sprycel since December 2010. I'll take the >> chemo and whine like a baby but still, in fact, be grateful for every >> day with my family. :) >> >> Kelly >> >> On Sep 26, 3:38 pm, [email protected]_ (mailto:[email protected]) >> wrote: >> >> >> >> > Hi Suzieq, We all here have had our good days and our bad days. > That's >> > what's so great about this CML group. We are all good listeners. > greenie >> >> > In a message dated 9/26/2011 12:12:45 P.M. Pacific Daylight Time, >> > >> >> > [email protected]_ (mailto:[email protected]) >> > writes: >> >> > Susan: >> >> > Good to hear from you again......& a great big "THANK YOU"! I >> > remember your struggles.....& I just want you to know, I wasn't >> > "complaining" about mine, cause I, too, am very grateful for Gleevec >> > & the wonderful doctors that I've had since my journey with CML began >> > in Jan. 2004. I am very thankful to still be alive and kicking! If >> > my recent post sounded like I might be "whining" or "complaining", >> I >> > didn't mean it that way. Was just going through a bit of a rough >> > spot. I never thought of it before, but I think that week was also >> > the time of some very emotional family drama going on as well a close >> > friend's son & his family in a serious car accident. A lot to digest >> > in one week, so could have set off some of this side effect of >> > Gleevec. Thanks again, Susan, for your uplifting post here. >> >> > God Bless you, >> > Suzieq >> >> > -- >> > [CMLHope] >> > A support group of _http://cmlhope.com_ (http://cmlhope.com/) >> > ------------------------------------------------- >> >> > You received this message because you are subscribed to the Google >> > Groups >> > "CMLHope" group. >> > To post to this group, send email to [email protected]_ > (mailto:[email protected]) >> > To unsubscribe from this group, send email to >> > [email protected]_ > (mailto:[email protected]) >> > For more options, visit this group at > _http://groups.google.com/group/CMLHope_ > (http://groups.google.com/group/CMLHope) > > -- > [CMLHope] > A support group of _http://cmlhope.com_ (http://cmlhope.com/) > ------------------------------------------------- > > You received this message because you are subscribed to the Google > Groups > "CMLHope" group. > To post to this group, send email to [email protected]_ > (mailto:[email protected]) > To unsubscribe from this group, send email to > [email protected]_ > (mailto:[email protected]) > For more options, visit this group at _h > ttp://groups.google.com/group/CMLHope_ > (http://groups.google.com/group/CMLHope) > Pacific Daylight Time, >> >> > [email protected]_ (mailto:[email protected]) >> > writes: >> >> > Susan: >> >> > Good to hear from you again......& a great big "THANK YOU"! I >> > remember your struggles.....& I just want you to know, I wasn't >> > "complaining" about mine, cause I, too, am very grateful for Gleevec >> > & the wonderful doctors that I've had since my journey with CML began >> > in Jan. 2004. I am very thankful to still be alive and kicking! If >> > my recent post sounded like I might be "whining" or "complaining", >> I >> > didn't mean it that way. Was just going through a bit of a rough >> > spot. I never thought of it before, but I think that week was also >> > the time of some very emotional family drama going on as well a close >> > friend's son & his family in a serious car accident. A lot to digest >> > in one week, so could have set off some of this side effect of >> > Gleevec. Thanks again, Susan, for your uplifting post here. >> >> > God Bless you, >> > Suzieq >> >> > -- >> > [CMLHope] >> > A support group of http://cmlhope.com >> > ------------------------------------------------- >> >> > You received this message because you are subscribed to the Google >> > Groups >> > "CMLHope" group. >> > To post to this group, send email to [email protected]_ > (mailto:[email protected]) >> > To unsubscribe from this group, send email to >> > [email protected]_ > (mailto:[email protected]) >> > For more options, visit this group at > http://groups.google.com/group/CMLHope > > -- > [CMLHope] > A support group of _http://cmlhope.com_ (http://cmlhope.com/) > ------------------------------------------------- > > You received this message because you are subscribed to the Google > Groups > "CMLHope" group. > To post to this group, send email to [email protected]_ > (mailto:[email protected]) > To unsubscribe from this group, send email to > [email protected]_ > (mailto:[email protected]) > For more options, visit this group at > _http://groups.google.com/group/CMLHope_ > (http://groups.google.com/group/CMLHope) > > > > > > -- > [CMLHope] > A support group of _http://cmlhope.com_ (http://cmlhope.com/) > ------------------------------------------------- > > You received this message because you are subscribed to the Google > Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at > _http://groups.google.com/group/CMLHope_ > (http://groups.google.com/group/CMLHope) > > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google > Groups "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at > http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope
