Advanced Member
Posted 20 January 2012 - 03:58 PM
Well it's official, although the PCR is not back yet, my FISH is negative, on October 6, 2011 it was 93%. As of next Friday I will be taking the lowered dose, 100 mg of Sprycel instead of the 140 mg. As soon as I hear from the PCR resuts I will be posting them.
Thanks everyone for you continued support and information, not to mention the compassion at the loss of my hair. Have a great Friday!
Pam
Advanced Member
Posted 20 January 2012 - 04:15 PM
That is GREAT news!!! Well done! I'm really glad the are going to lower your dosage too 
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Advanced Member
Posted 20 January 2012 - 04:44 PM
Pam,
If Zavie were still alive and you had posted this news on the newcmldrug site, you would have gotten a number in his Zero Club and a YIPPEE YAHOO. I really miss that!
Congratulations on reaching CCyR and in record time, too, and I'm really glad they reduced your dosage! Why that bothered me is beyond me - the things I choose to obsess on, sheesh!
Pat
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
New Member
Posted 20 January 2012 - 04:52 PM
Hi Pam M,
I am sooooooo happy for you , what great news, a negative FISH. I'm also very glad you will be taking a lower dose of Sprycel, like Pat I was also bothered by the 140mg. Anyway, you are on the right road now, hoping form here on out it will be a smooth ride.
Judy
Member
Posted 20 January 2012 - 04:55 PM
PamM,
That is great news on your FISH @ 93% in Oct, is now negative. Plus lowering your dosage of Sprycel.
Can't wait to hear your port on your PCR?
PAMS
PamSouth
Member
Posted 20 January 2012 - 07:25 PM
Pammartin,
That is great news ! You have done exceptionally well ! I hope the dosage reduction gives you some relief (lot of relief!) in your side effects. Here's to you achieving even greater milestones ! Yahoo !
Janne
Dx'd: 8/2008. Started Gleevec 400 mg 11/08.
Drug break 2011.
Started Tasigna 4/11 450 mg.
Reduction to 300 mg Tasigna 1/2012.
PCRU 9/2012.
12/2012 Detectable.
PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)
12/2015 ? slightly detectable at probably less than 0.01% per Mayo Clinic.
4/2016 PCRU. Still at 150 mg Tasigna.
CESSATION: stopped treatment 7/20/2017.
9/6/2017: barely detectable at 0.01%.
12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.)
12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.)
New Member
Posted 20 January 2012 - 07:48 PM
Great news PamM, I hope the lower dose Sprycel is easier on you.
TedK
Advanced Member
Posted 20 January 2012 - 11:04 PM
Congratulations Pam! Glad you can go to a lower dose. Here is to you hair growing back in full and lustrous!
All the best,
Tedsey
New Member
Posted 20 January 2012 - 11:47 PM
That is great, Pam! I will get my 6 month results on Wednesday. I hate waiting.
New Member
Posted 21 January 2012 - 12:03 AM
Hi Lizzybee,
I'm wishing you the best, please keep us posted.
Judy
Advanced Member
Posted 21 January 2012 - 12:14 AM
Congratulations Pam: Glad you got such good news. I am not familiar so much with Sprycel, but I always say whatever works for you with these TKI treatments is the way to go. Wishing you continued success to beat CML.
Susan
Advanced Member
Posted 21 January 2012 - 08:02 AM
Thanks everyone for the support and kind comments. I think I am still in a bit of shock, perhaps I didn't expect these positive results so quickly, I know for now I am one lucky human being! I hope everyone has a wonderful day!
Pam
Advanced Member
Posted 22 January 2012 - 10:31 AM
Outstanding. Well done, hope you are feeling well.
Advanced Member
Posted 23 January 2012 - 02:06 PM
PCR is back, .004% so not perfect, but close. I believe this has created even more anxiety concerning the reduction of Sprycel from 140 mg to 100 mg. I am just arriving at my 3 month anniversary concerning the Sprycel due to the hold for three weeks this fall. I want the 100 mg to work, less side effects, less medication, I still worry about returning to the dosage I had little response to in the beginning.
Advanced Member
Posted 23 January 2012 - 02:25 PM
That is an amazing response for 3 months. It seems very likely that 100mg would be sufficient. Only you and your doctor can make that decision, but it would seem that not enough time was given in the beginning to see what Sprycel was going to do. Now that you are over the hump it would seem even more likely that 100mg would be sufficient.
Good luck with the direction you choose.
Advanced Member
Posted 23 January 2012 - 02:26 PM
I am so surprsied your doctor even thought to put you on 140mg! This is a miracle! I am so glad you are doing well!!!
Teds
New Member
Posted 23 January 2012 - 02:58 PM
Hi Pam M,
0.004% after 3 months, I think that is fantastic!!! Try not to worry about the reduced dosage (easier said than done), try to enjoy your great result. As CallMe Lucky said, with this response it seems likely that 100mg will be sufficient. Congratulations, my friend.
Judy
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