Posted 03 April 2016 - 11:44 AM
Posted 03 April 2016 - 03:29 PM
Oh no Marnie! I am sorry. Hope you mend quickly.
People, we need to take up a collection and help Marnie, I want her to have a machine with a seat from now on.
Posted 03 April 2016 - 05:11 PM
Posted 03 April 2016 - 08:49 PM
Yeah, looked like a piece of shart to me.
Gas Gas, brake brake, break break, shart shart!!!!
Posted 03 April 2016 - 11:35 PM
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)
Posted 04 April 2016 - 08:18 AM
Wishing you a speedy recovery! Take Care
DX 5-2010 Started normal hydra then Gleevec for 9 months stopped working
Tasigna after 5 pills pancreatis numbers jumped up quickly
Started Sprycel 100, 8-2010 for a 3 years went down to 50 mg numbers at one point really jumped up quickly
currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then
After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now
numbers lower then ever go figure I've never been this low of a number
last 2 tests .0686 and .0181 !!
Posted 04 April 2016 - 08:44 AM
Tennessee??? Riding the Dragon?
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
Posted 04 April 2016 - 01:02 PM
Marnie - Best wishes for a smooth and speedy recovery. I'll bet that smarts. I'm saddest about the harp, though. Hard to find a good harpist these days!
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Posted 04 April 2016 - 01:07 PM
Wishing you a speedy recovery.
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Posted 04 April 2016 - 04:04 PM
Posted 05 April 2016 - 02:31 PM
Wishing you a speedy recovery and safe travels.
DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16; .0528 8/16; .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17
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