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CML and organ donation


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#1 snowboots

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Posted 19 February 2016 - 04:36 PM

Was in a chat room the other night and the subject came up about organ donation. I have this designation on my driver's license and never gave a thought to having to remove it. I suppose we are not eligible to donate organs and can understand it. I surely will have to go through some drama to replace my license. But it also got me to thinking maybe I should be carrying some kind of identifier like a medical alert bracelet or card in my wallet. Oncologist never mentioned any of this to me. Any thoughts?

Also checked out the new "LLS Community". Nobody likes change but I suppose it is inevitable. Don't like the new format and can't see that it has anything to offer that this forum doesn't have already. I am of the "if it ain't broke don't fix it" ilk. Just grateful that I found this group while it is still functioning.



#2 hannibellemo

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Posted 19 February 2016 - 05:09 PM

I believe we can still donate our corneas.

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>


#3 mdszj

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Posted 19 February 2016 - 06:19 PM

Is it possible for someone to get cml from a donated organ?  Maybe that is possible if there is a bad stem cell floating around in the organ?


dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16


#4 pammartin

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Posted 19 February 2016 - 08:43 PM

That is something I never gave much thought too, I have been an organ donor for years.  Interesting subject. 

 

The comment, 'Just grateful that I found this group while it is still functioning.' scares the hell out of me. This place helped to save my life and my sanity.  Everyone deserves the same support I received.



#5 Trey

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Posted 19 February 2016 - 09:01 PM

It is not advisable for blood cancer patients to donate organs.  I had my donor consent removed from my Drivers License upon renewal after diagnosis.  Most people would not acquire CML by transplant but it is very slightly possible if the recipient is a close enough match since immune suppresants are used for organ recipients.

 

http://www.cancer.or...onate-my-organs



#6 pammartin

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Posted 19 February 2016 - 09:17 PM

Now I am really bothered.  I wonder if you can get a card that states you are no longer an organ donor till your license expires.  They give you update cards to carry behind your license in your wallet, I think I would want that to be in front of my license to make sure it is noted.



#7 CallMeLucky

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Posted 19 February 2016 - 11:41 PM

I thought they still need permission from family. I believe DL is to make your wishes known, it shouldn't be a binding contract.
Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#8 MarCap73

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Posted 20 February 2016 - 01:36 PM

I thought they still need permission from family. I believe DL is to make your wishes known, it shouldn't be a binding contract.

 

I am an organ donor too, I had't given any thought to my status as a potential donor until reading this thread.  I Googled it and found a link to to Organdonor.gov, which is a US Department of Health and Human Services website.  There is an area about legislation and laws: 

 

The synopsis of the Uniform Anatomical Gift Act of 2006 states: 2006—Uniform Anatomical Gift Act, 2006 exitdisclaimer.png —A model statute intended for adoption in every jurisdiction. This model law legally bars others from revoking the consent of a donor after death who legally registered as a donor during his or her lifetime (without an indication that the consent was no longer valid).

 

(I am not a lawyer, maybe if there is one among us, they can delve into this more deeply.)

 

I also found on the site FAQs about Medical Conditions:

 

Medical Condition?

You may still be able to donate your organs. Doctors will evaluate the condition of your organs when the time arises. The transplant team's decision will be based on a combination of factors such as your specific illness and your physical condition to determine which organs and tissues can be donated.


Dx: 11/2015

Sprycel: 100mg

 

May-17: 0.0095% IS

Aug-17: 0.0048% IS

Nov-17: 0.0066% IS

 

 





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