About the nosebleeds....yes I had them very infrequently while on gleevec for 2 1/2 yrs. Maybe two times. I ended up with more eye bleeds than nosebleeds. Those were very frequent. Then I had a brain bleed and quit the gleevec. Now on nothing for the last 4 1/2 yrs. Still in cellular remission and praying to stay that way. I am so thankful with my fingers crossed....lol
Susan F. Zimmerman "Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you." Hab. 1:5 -----Original Message----- From: Cakrek <[email protected]> To: cmlhope <[email protected]> Sent: Fri, Sep 30, 2011 7:45 am Subject: Re: [CMLHope] Digest for [email protected] - 2 Messages in 2 Topics I was taken off Gleevec in March due to acute kidney failure. Started Sprycel one week later. I am doing much better on Sprycel than Gleevec. i had very serious side effects for 10 years, The cramps are gone, I have stopped throwing up, my hemoglobin has climbed from 9 to 11, my white count is up to normal, and my kidneys are slowly recovering. I am on 100mg daily. The only 2 side effects I am having now is bone pain in my legs and a rash. Overall, I feel so much better. I am also a Michigan resident. Where do you treat at? I see Dr Shurafa at Great lakes Cancer Management in Grosse Point. I started with him when he was at Henry ford in Detroit. wonderful man. Carol kalat In a message dated 9/30/2011 6:35:21 A.M. Eastern Daylight Time, [email protected] writes: Today's Topic Summary Group: http://groups.google.com/group/cmlhope/topics Just got the bad news, Gleevec out after 7 years! [1 Update] Problems with Food and Gleevec [1 Update] Topic: Just got the bad news, Gleevec out after 7 years! [email protected] Sep 29 10:18PM -0400 ^ Could anyone give me info about nose bleeds and Gleevec Teepee In a message dated 3/29/2011 8:58:13 A.M. Eastern Daylight Time, [email protected] writes: Thannk you for the information. On Wed, Mar 23, 2011 at 4:38 PM, John Kuptz <[email protected]_ (mailto:[email protected]) > wrote: I was diagnosed in 11-05 and started on Gleevec but within 2 months had developed liver function failure. Was started on Sprycel 70mg bid and that just about wiped out my platlets. Waited for bone marrow to recover and was put on only 20 mg bid. I have been on that ever since. My pcr tests comes back UNDECTABLE almost every time they do it every three months. Once in a great while a very smalll amount is detected. Onocologist said that is the name of the game. I do have joint pain and have put on 30 lbs but basically that is the only side effect in 4 years. Best of luck to you. Carolyn ----- Original Message ----- From: "kneesrbad2" <[email protected]_ (mailto:[email protected]) > To: "CMLHope" <[email protected]_ (mailto:[email protected]) Sent: Tuesday, March 22, 2011 10:59 PM Subject: [CMLHope] Just got the bad news, Gleevec out after 7 years! I don't know what went wrong but my abnormal cells increased 3 fold on my last BMA. Now going onto Sprycel! I need everyone who is on Sprycel to give me your quick stories of what to expect with the new round of side affects from Sprycel. On Gleevec, here is MY list of side affects, Diarehea, fatique, eye bleeds, water retention, thin skin, pale skin (burn easily), cramps, sinus operation, pumpkin face, joint pains, insomnia, etc etc etc. What am I faced with for side affects on Sprycel? Suppose to start it next week. I am a 55 year old, male, Michigan resident, DX'd on my Wedding anniversary in 2004, in full blast stage with a spleen they were going to take out immediately and when I say immediately, I mean 3:30 am with a full siren ambulance to a major hospital but they saved it!! I was tested for a full Bone Marrow Transplant with my brothers and I have a 100% match from my younger brother if I need it. I just want to hear the good, the bad and the ugly from those on Sprycel, please. Also, and almost as important to our CML family for one reason or another I have a few extra bottles of Gleevec 400 mg bottles still with the seal on it if anyone is interested in talking with me in private. I would like to help someone who may have a huge co pay on their Gleevec payments. This will be handled away from this site and all parties will get to know who the other parties are. I just don't want these expensive drugs to go to waste because my body decides, the heck with you, drug change. Please reply and let me know! Thanks -- [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 _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) Topic: Problems with Food and Gleevec [email protected] Sep 29 10:07PM -0400 ^ I Was Wondering if there is any connection with nose bleeds to Gleevec. could anyone give me some information about this and is serious? Thanks Teepee In a message dated 9/27/2011 1:33:36 P.M. Eastern Daylight Time, [email protected] writes: Dr. Moshe Talpaz U of M 734-647-8901. On Sep 27, 2011 11:07 AM, <[email protected]_ (mailto:[email protected]) > wrote: > Kelly, I don't know how far away you are from Chicago but you could try > calling Northwestern Medical Faculty Foundation Comprehensive Cancer Center > 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) > 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) > 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. 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
