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#1 Marnie

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Posted 03 April 2016 - 11:44 AM

Trey. . .Remember that gas gas I bought that you made so much fun of? Yellow machine with no seat that you said I should name shart shart. . .Trials motorcycle. Well, it got the best of me. I am now laid up for 12 weeks with a level 3 shoulder separation. Shart!

#2 pammartin

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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.



#3 Marnie

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Posted 03 April 2016 - 05:11 PM

Thanks, Pam, but I have plenty of those. Just got a new BMW700gs. Just finished the break in and now I won't be able to ride it for awhile. Also won't be able to play the harp for my niece's wedding. Need to make that phone call to tell her. I am not a happy camper right now. The drive home from Tennessee won't be any picnic, either.

#4 Trey

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Posted 03 April 2016 - 08:49 PM

Yeah, looked like a piece of shart to me. 

 

Gas Gas, brake brake, break break, shart shart!!!!



#5 Melanie

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Posted 03 April 2016 - 11:35 PM

Marnie, so sorry! Wishing you a speedy recovery, sharts and all.
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
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)

#6 Cathy

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Posted 04 April 2016 - 08:18 AM

Marnie,

 

Wishing you a speedy recovery! Take Care

 

Cathy


Cathy

 

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 !!

 


#7 tazdad08

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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!


#8 kat73

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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.


#9 rcase13

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Posted 04 April 2016 - 01:07 PM

Yep the dragon has made mince meat of many a motorcyclist. I use to blast up and down that in my Miata and later on my Honda NT700. Both of which are long gone now. :(

Wishing you a speedy recovery.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#10 Marnie

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Posted 04 April 2016 - 04:04 PM

Didn't make it to the Dragon, though that was the plan. Did the shoulder the day before the trials class started. Couldn't do the class, couldn't do the Dragon. Next year. . .

#11 Dona_B

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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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