Advanced Member
Posted 01 October 2016 - 05:10 AM
Last monday I got a packet of information on the 5-7 year clinical studies on Sprycel. Everyone on Sprycel should be getting one soon. Now I know why I feel like crap!!! At least it answers a lot of questions and tells us that the longer we're on Sprycel the more side-effects we get.
Billie
Advanced Member
Posted 01 October 2016 - 08:37 AM
Billie,
Were you in the trial, is that why you got a copy? Can you be more specific on the name of the publication? Better yet, can you scan it and post it on here? (Ok, you can stop laughing now.)
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>
Advanced Member
Posted 01 October 2016 - 08:45 PM
Hi Pat, Yeah I'll just whip those papers out and scan them and post them. Silly girl you know I can barely figure out how to send an e-mail. I got another copier so I'll try.
You know the big instruction sheet that comes with our script sometimes and we throw it away. I got one of those, I cut it in four sections so I can copy it. Then there is a booklet that says I got Sprycel visit SPRYCEL.com or call 1-855-777-9235 It came from Bristol Meyers and they also sent me a FREE pill organizer 
. Everyone should be getting one I think. Why me, I'm the biggest dummy on the board!
I am cracking up you wan't me to scan and post, right after you asked for instructions on how to do it. Love Billie
Advanced Member
Posted 02 October 2016 - 12:26 PM
IMG_0277.JPG 94.25KB
8 downloads
Advanced Member
Posted 02 October 2016 - 02:01 PM
Mystery solved, thanks, Deb!
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>
Advanced Member
Posted 02 October 2016 - 02:02 PM
Billie,
They gave me good instructions, too, but I forgot what it was I wanted to post! I blame it on Sprycel.
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>
Advanced Member
Posted 02 October 2016 - 08:00 PM
Here is what Billie is referring to, the Sprycel dosing instructions updated last month:
http://packageinsert.../pi_sprycel.pdf
Advanced Member
Posted 03 October 2016 - 07:51 AM
Here is what Billie is referring to, the Sprycel dosing instructions updated last month:
Yeah! What would we do without Trey!!
Advanced Member
Posted 03 October 2016 - 11:25 AM
The link doesn't work for me. What is the pertinent info?
Advanced Member
Posted 03 October 2016 - 07:21 PM
yeah, whats the tl;dr version?
January 15: .53%
April 15: .78%
July 15: 1.1% - upped dosage to 400mg after this test
Oct 15: .85%
December 15: .28%
March 16: .29%
July 16: .34%
October 16: .11%
January 17: .081%
April 17: .055%
July 17: .135%
Oct 17: .008%
Advanced Member
Posted 03 October 2016 - 10:38 PM
This is the packet Billie is talking about. Came by USPS. Havent read yet.
IMG_0277.JPG
Hi Deb, Did you get your FREE $10,000 pill holder?
Advanced Member
Posted 04 October 2016 - 09:29 PM
Advanced Member
Posted 04 October 2016 - 09:44 PM
Hi Deb, At least we didn't have to pay postage. I made a copy for my cardiologist and I told him I have every side-effect on the list.except weight loss. 
Deb, we have to be glad there are no passwords or pin nos. who could remember them!
Advanced Member
Posted 04 October 2016 - 09:58 PM
Advanced Member
Posted 04 October 2016 - 09:59 PM
The link doesn't work for me. What is the pertinent info?
Hi Marnie, from what I read just about everything we feel even occasionally is a side-effect 
It has absolutely nothing to do with our age, that's my story and I'm sticking to it. I am having a lot of trouble with my eyes though and my hearing is really getting worse. Ron had to have extensive dental work done after he got well, and he had to get 2 partials they affect his speech a little bit but I don't tell him that but sometimes it's really hard for me to understand him so most of our conversations consist of huh what and where!
Advanced Member
Posted 04 October 2016 - 10:12 PM
Very true Billie...this really is a nice pill box.
On the reporting side - I was a bit surprised to see that the new script enclosure pamplet has totally sidestepped brain fog and weight gain issues that so many discuss. And I thought the old one mentioned monitoring magnesium and potassium, but i might be wrong about that...cause my memory is not what it used to be.
I don't know what they think about mag and pottasium but if I don't take mag I get awful leg cramps. Nobody can tell me that brain fog isn't a problem. I don't even drive anymore I just can't seem to focus well a lot of times. And I know I don't have dementia or altzimers because I can spell world backwords. I can't spell alzimers anymore either and I'm tired of looking it up!
Advanced Member
Posted 06 October 2016 - 04:40 PM
I was a bit surprised to see that the new script enclosure pamphlet has totally sidestepped brain fog ....
That is because the writer is on Sprycel.
Advanced Member
Posted 06 October 2016 - 08:05 PM
Advanced Member
Posted 07 October 2016 - 11:41 PM
That is because the writer is on Sprycel.
Duh! Why is it that everytime I go to the cancer center nobody who works there can pronounce our TKIs?
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