Hi Lenda/Jeanie...I is nice to find someone in the same boat...I have just started Sprycel (3 days ago) after finding that Tasigna and Gleevec were toxic to me. I am on 100mg and have headaches and some nausea....but they are not too bad. I was diagnosed in Dec, '08 and was started on Tasigna first in a trial at MD Anderson. Switched to Gleevec when I developed acute pancreatitis...then had to stop Gleevec because of severe rash. My latest PCR from the bone marrow aspiration was 0.05 and my blood counts are relatively normal. Did either of you experience fluid build up or low counts? I was also wondering about alcohol. I couldn't have any on the Tasigna but didn't not see any warnings for the Sprycel. I miss my daily glass of wine with my wife! Anyway, nice to be connected as we ride this train of life in the same car! Regards, Tom in KY In a message dated 10/22/2009 4:04:33 P.M. Eastern Daylight Time, [email protected] writes:
Hi Lenda, Glad to meet someone on Sprycel--how long have you been on it? I have been on it for about 3 months; just had my BMA and doctor said some sign of the CML is there but not bad. I am hopeful it will put me in full remission. I love going to Moffitt; you get your blood done, and then see the doctor. He knows just where you are in your blood counts and that's great. I started off with 150 mgs of Sprycel, and had the headaches also. They say if you are prone to migrains, which I am, the headaches are worse. I would feel like my sinus was burning, and it felt like a cold coming on. He said I could take Tylenol for it. They come and go now and I was reduced to 100 mgs daily due to counts dropping fast. Good luck, Jeanie<3 In a message dated 10/19/2009 9:25:26 P.M. Eastern Daylight Time, [email protected] writes: Yes I was originally on 140mg of Sprycel and had excruciating headaches...so bad I threatened the doctor that I would stop the meds if I did not get some relief! He reduced me to 100 mg and I am much better. I'm in complete remission, my bcr-abl comes back 0.001 every four months. I do have a lot of skin issues (sun sensitivity, dark spots, rashes) I also gained 30 pounds the first 1 1/2 months I started on Sprycel. I have a lot of pain in my hip, lower back and leg, but don't know if it's the Sprycel or something else. But I don't have any stomach issues like I had with Gleevec or any swelling of the eyes, but the fluid retention is everywhere else!!! But sometimes you have to take the good and the bad!! I believe I was on Sprycel for two to three months before my blood counts were back to normal. I wish you the best and hope Sprycel does well for you too!!! Lenda ----- Original Message ----- From: [email protected] To: [email protected] Sent: Monday, October 19, 2009 4:17:44 PM GMT -06:00 US/Canada Central Subject: [CMLHope] Re: Gleevec I"m on Sprycel also In a message dated 10/18/2009 10:25:02 A.M. Eastern Daylight Time, [email protected] writes: Hi lenda, I am on 100 mgs of Sprycel also. I failed on Gleevec and Tasigna. 2 years--That is great! I sure hope it keeps working for me--I have been on it for about 3 months now. I'm doing good on it. Did you have any problems on Sprycel in the beginning? Thanks, Jeanie<3 was on Glevec for 1/1/2 years then it stopped working for me. I have now been on 100mg of Sprycel for over 2 years now and doing great. I would not let my doctor rush you into a BMT unless all other avenues have been exhausted. Just my opinion. Good luck and many blessings... Lenda Coleman --~--~---------~--~----~------------~-------~--~----~ [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 -~----------~----~----~----~------~----~------~--~---
