Karen...thanks for your reply! As you say, it is nice to connect to others that are on the same journey! Please let us know how your blood counts do with the reduced dose. I am still getting the headaches pretty much 24 hrs /day. I can live with them...but sure hope they lessen like yours have. I will have my first counts on Sprycel next week and I will let you know how they turn out. When I was on Tasigna, my counts went down..but not as badly as yours did. With time they recovered...but I developed acute pancreatitis and had to stop Tasigna. On another chat site, the participants use a short hand form at the end of their posts that is helpful in quickly communicating one's history. I have attached mine as an example. All the best! Tom Tom Dunham, BD:8/1941 DX CML 12-23-2008 MDA Protocol: Tasigna-400mg; 2xday-1/09 Q PCR bone@ 0.17 7/09 Acute Pancreatitis-7/5/09 Stopped Tasigna-7/13/09 Q PCRU blood-7-29-09 ! Started Gleevec-400mg/day-7/31/09 Developed rash ~ 8/19/09 Rash treated with Steriods..improvement Rash worsens~9/22/09 Stopped Gleevec-9/28/09 Restarted Gleevec @300mg/day-10/8/09 Stopped Gleevec-10/13/09-toxic rash\ Q PCR bone-0.05 Started Sprycel @ 100mg/day-10/20/09 In a message dated 10/22/2009 11:42:07 P.M. Eastern Daylight Time, [email protected] writes:
Hi Tom, Lenda and Jeanie, It is nice to find others in the same boat. I was on Gleevec for 7 months. I got to blood remission, but the cytogenic remission never happened. The Gleevec basically was not working in the bone marrow. I was diagnosed in November 2008, had two bone marrow biopsy's in 7- months time and had no change in the marrow. So I went for a second opinion and that doc started me on Sprycel 100mg, but my counts dropped so quickly. It was scary. I also had bad headaches for about 10-days on the Sprycel, however the counts just did not recover, so I was taken off all meds to allow my counts to go up. On the 100mg, I also had significant fatigue. Well I had a 28-day break and my counts recovered nicely and just 5-days ago, I was started on 50mg of Sprycel. I have very slight headaches at night and I'm a little tired, but that is about it right now. I go for bloodwork tomorrow, so that will be the real test. Hopefully the counts are not taking a nosedive again. As far as the alcohol question, I have had a casual drink once in a while on both Gleevec and Sprycel...but that's about it. I didn't have any reactions. Please keep posting because these websites are what keep me sain. All the information that gets posted is helpful one way or another. Take care all. Karen On Oct 22, 4:40�pm, [email protected] wrote: > 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- Hide quoted text - > > - Show quoted text - --~--~---------~--~----~------------~-------~--~----~ [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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