I wish my doc had listened to my complaints. He originally put me on 140 mg of Sprycel - within a week, I could not catch my breath. I stopped it on my own - then - my husband was laid off and I took a 8-9 month "vacation" due to no insurance. My onc then placed me on 100 mg of Sprycel, which I tolerated better and absolutely MUCH better than the Gleevec, so I just took the side effects in stride. I WISH he had lowered my dose when I asked him to.....PAH as a result. Now I don't trust him anymore because he refused to listen to me in the first place. BUT, I just got a call from MD Anderson and I have an appt. on Oct 10. Whoo hoo!!! Dr. Jorge Cortes is one of the leading CML specialists who identified the correlation between Sprycel and PAH and he is the doc I am going to see. ROAD TRIP!! My mother, brother and I are going to rent a van and head for Texas! I am hoping he might be able to work me into a subcutaneous pump for my Remodulin instead of a Hickman line pump...but, that's not his specialty...ha ha. Wish me luck!!
Kelly On Sep 30, 7:45 am, [email protected] wrote: > 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_ > (http://groups.google.com/group/cmlhope/topics) > * _Just got the bad news, Gleevec out after 7 years!_ > (mip://09e06990/default.html#group_thread_0) [1 Update] > * _Problems with Food and Gleevec_ > (mip://09e06990/default.html#group_thread_1) [1 Update] > Topic: _Just got the bad news, Gleevec out after 7 years!_ > (http://groups.google.com/group/cmlhope/t/d1cf240f129f33ff) > [email protected] Sep 29 10:18PM -0400 _^_ > (mip://09e06990/default.html#digest_top) > > 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_/) > (_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_) > (_http://groups.google.com/group/CMLHope_ > (http://groups.google.com/group/CMLHope) ) > > -- > [CMLHope] > A support group of __http://cmlhope.com__(http://cmlhope.com_/) > (_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_) > (_http://groups.google.com/group/CMLHope_ > (http://groups.google.com/group/CMLHope) ) > > -- > [CMLHope] > A support group of __http://cmlhope.com__(http://cmlhope.com_/) > (_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_) > (_http://groups.google.com/group/CMLHope_ > (http://groups.google.com/group/CMLHope) ) > > Topic: _Problems with Food and Gleevec_ > (http://groups.google.com/group/cmlhope/t/14a9abc196016adc) > [email protected] Sep 29 10:07PM -0400 _^_ > (mip://09e06990/default.html#digest_top) > > 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_) > (_http://groups.google.com/group/CMLHope_ > (http://groups.google.com/group/CMLHope) ) > > A support group of __http://cmlhope.com__(http://cmlhope.com_/) > (_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_) > (_http://groups.google.com/group/CMLHope_ > (http://groups.google.com/group/CMLHope) ) > > A support group of __http://cmlhope.com__(http://cmlhope.com_/) > (_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_) > (_http://groups.google.com/group/CMLHope_ > (http://groups.google.com/group/CMLHope) ) > > -- > [CMLHope] > A support group of __http://cmlhope.com__(http://cmlhope.com_/) > (_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_) > (_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 > > ... > > read more » -- [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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