I was on Sprycel for almost 6 years. I had so may side effects, i.e., bone and muscle pain, rash, headaches, internal bleeding, developed two small masses in my brain, nerve pain, vision issues, weight gain ( I gained 30 pounds in the first two months) the fluid retention and so on. The doc kept lowering the dose until I was down to 30mg. (I had been to 7 specialist to see what was bleeding, what was causing it and why the right side of my body had become so weak and painful. ) Things got so bad that I told him I needed a vacation from Sprycel to see if I would start feeling better. He was not on-board with it so, I told him I was doing it anyway and it was up to him to monitor my results. Well, 1 1/2 years later off the meds and I'm still in remission. Not to say this is normal, but doctors don't know everything! It's your body and you have to push for as much quality of life as you can!!!!
I still have chronic pain and I'm tired all the time, but it's much better than running to multiple doctors all the time from the side effects! To date, my doctor still says it was not the Sprycel that caused all the medical problems. Keep looking up, there are a lot of us CML Warriors out here for you! Lenda ----- Original Message ----- From: [email protected] To: [email protected] Sent: Thursday, March 28, 2013 10:44:48 AM Subject: Re: [CMLHope] Tasigna Hi Penny, I have been on Sprycel for almost 5 years. The rash can be bad. I have had severe headaches on it especially in the beginning, but I have had migraines all my adult life anyway. I went to Moffitt yesterday, and while in the office I got an eye bleed. Yes, right in his office. He examined it and I told him the Sprycel causes eye bleeds. He called in the a pharmacist and she insisted it wasn't from the Sprycel. Well, I know it is from the Sprycel. I had them on Gleevec, and now this is my second one on Sprycel. He told me to see and eye doctor and my PCD to take care of the high blood pressure, but never mentioned anything about the Sprycel. Now this doctor is a specialist at Moffitt Cancer Center, and I can't believe he told me what he did. I found this at the Sprycel site and I don't think they will mind me reposting it. Good luck, and hang in there: The side effects aren't as bad as Gleevec at least not for me. Jeanie<3 Adverse Reactions Chart Includes cardiac failure acute, cardiac failure congestive, cardiomyopathy, diastolic dysfunction, ejection fraction decreased, and left ventricular dysfunction. b Includes erythema, erythema multiforme, rash, rash generalized, rash macular, rash papular, rash pustular, skin exfoliation, and rash Includes conjunctival hemorrhage, ear hemorrhage, ecchymosis, epistaxis, eye hemorrhage, gingival bleeding, hematoma, hematuria, hemoptysis, intra-abdominal hematoma, petechiae, scleral hemorrhage, uterine hemorrhage, and vaginal hemorrhage. vesicular. c Adverse reaction of special interest with <10% frequency. d Includes cardiac failure acute, cardiac failure congestive, cardiomyopathy, diastolic dysfunction, ejection fraction decreased, and left ventricular dysfunction. b Includes erythema, erythema multiforme, rash, rash generalized, rash macular , rash papular, rash pustular, skin exfoliation, and rash vesicular. c Adverse reaction of special interest with <10% frequency. d Includes conjunctival hemorrhage, ear hemorrhage, ecchymosis, epistaxis, eye hemorrhage , gingival bleeding, hematoma, hematuria, hemoptysis, intra-abdominal hematoma, petechiae, scleral hemorrhage, uterine hemorrhage, and vaginal hemorrhage. In a message dated 3/24/2013 10:29:46 P.M. Eastern Daylight Time, [email protected] writes: Thank you Jeanie....Gleevec stopped working for me and am now on Sprycel. I am worried about side effectsss...I have been fighting a very bad rash...hope that is all that pops up. Thanks, Penny On Sunday, March 24, 2013 5:29:27 PM UTC-6, Jeanie wrote: <blockquote> Symptoms brain bleed Nausea headache blurred vision bad balance Numb tingling and others Make sure to get your blood checked often As your counts can drop fast Jeanie Sent from my iPhone On Mar 23, 2013, at 11:27 PM, [email protected] wrote: <blockquote> Penny, if something was making me wonder if I was having a brain bleed I would be on my way to the ER. Patrick --- On Sat, 3/23/13, Penny < [email protected] > wrote: <blockquote> From: Penny < [email protected] > Subject: Re: [CMLHope] Tasigna To: [email protected] Date: Saturday, March 23, 2013, 9:53 PM Hi, How do you know if you have had a brain bleed. I just started on Sprycel 2 weeks ago... Penny On Tuesday, November 1, 2011 1:22:54 PM UTC-6, rszi...@ aol.com wrote: <blockquote> This is great news about Tasigna....! I spoke yesterday to a doctor in charge of a clinical trial. He advised me with my history of bleeding in the brain to NEVER take sprycel, said it is well known that it causes bleeding. All my other doctors have been wanting me to go on it! He advised tasigna only, as it is the only one that does not have the slight side effect for those who are prone to have bleeding. Very very important news for me, as I've not been on anything for four and a half years. Gleevec caused bleeding. I am going soon for another bcr/abl test, it's been a year. I am so thankful I'm still in cellular remission. This doctor yesterday said don't wait until you come out of remission because you could go into blast phase. Pray that things come together for me financially to do this. By the way, what side effects come with tasigna??? 18's, Susan F. Zimmerman -----Original Message----- From: Suzan Collins < [email protected] > To: cmlhope < [email protected] > Sent: Mon, Oct 31, 2011 9:39 pm Subject: Re: [CMLHope] Tasigna Hi I don't post much. I was dxed in June 2004. I had never reached all zeros before and it always stayed around .004. I had so much trouble with severe side effects from gleevec and sprycel and sprycel also gave me skin ulcers. So he put me on tasigna . I have been on tasigna for nearly 2 years and from the beginning I continued to have trouble with bad side effects two months later. So my doctor decided to put me on 200 mgs once every other day. The side effects declined immensely and my last fish test was all zeros so even though it is only 200 mgs every other day tasigna has kept my CML under control. So good luck. I hope that you can get they same results that I have. Suzan From: kellyelise < [email protected] > To: CMLHope < [email protected] > Sent: Monday, October 31, 2011 8:24 PM Subject: [CMLHope] Tasigna Marty...tweet, tweet? Ha ha ha!! You are so funny!! Anyway....My PA from MDAnderson in compliance with Dr. Cortes have allowed me to take Tasigna @ 200mg daily. It is less that the recommended dose but they are hoping to lessen side effects but at the same time put the CML back under control. I "think" she said my PCR was 0.333% (does that make sense?). I have never come out of remission in 4 years until now (boo!). She also said I am showing no evidence of the Philadelphia chromosome. I have no idea what this all means since I cannot retain anything, but, I am hoping it is good news. Any advice, knowledge, etc., would be greatly appreciated. I am currently in the market for a heme/onc and will be looking 50 miles to the West (Cleveland, OH) or 50 miles to the East (Erie, PA). I asked my NP at CCF for some guidance and hopefully she can provide some. 18s to everyone! Kelly -- [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 CMLHope-u...@ 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 [email protected] To unsubscribe from this group, send email to CMLHope-u...@ 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 [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 --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected] . For more options, visit https://groups.google.com/groups/opt_out . </blockquote> -- -- [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 --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected] . For more options, visit https://groups.google.com/groups/opt_out . </blockquote> </blockquote> -- -- [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 --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out . </blockquote> -- -- [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 --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out . -- -- [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 --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out.
