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 <kellyeli...@aol.com> To: CMLHope <cmlhope@googlegroups.com> 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 <kellyeli...@aol.com> 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, myvet...@aol.com 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, > > > sheila.a.wat...@gmail.com 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 CMLHope@googlegroups.com > > To unsubscribe from this group, send email to > > cmlhope-unsubscr...@googlegroups.com > > 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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope Pacific Daylight Time, > > > sheila.a.wat...@gmail.com 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 CMLHope@googlegroups.com > > To unsubscribe from this group, send email to > > cmlhope-unsubscr...@googlegroups.com > > 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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
