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Can still do free genetic testing, for life


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#1 ChrisC

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Posted 22 May 2012 - 10:27 PM

A number of us have participated, and it is fascinating to learn one's genetic makeup, a bit about ancestors, and so on. It also helps them learn more about CML and thus benefits ourselves and future generations. We all want to avert disease before it arises!

https://www.23andme....tm_medium=email

Help Us Revolutionize Myeloproliferative Neoplasms Research.

Together we can make a difference.

23andMe wants to put the power to make a change in the hands of the patient community. Genetic research is a numbers game. The more people who take part, the more powerful it gets. We need your help to make a difference.

Join the 23andMe Myeloproliferative Neoplasms (MPN) Research Initiative.

If you have been diagnosed with myelofibrosis, essential thrombocythemia, polycythemia vera, chronic myelogenous leukemia, mastocytosis, or hypereosinophilic syndrome (HES) and related eosinophil disorders, take an active role in research that may benefit you and others living with a myeloproliferative disease diagnosis.


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#2 0vercast

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Posted 22 May 2012 - 10:41 PM

This sounds interesting.  I'm going to do it.  It's just a saliva sample they need.



#3 Tedsey

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Posted 24 May 2012 - 04:27 AM

I am tempted. However, I cannot help fearing this company trying to own a patent on to a certain gene or protien.  That would limit the freedom of other researchers or drug companies to develop better drugs, or a cure.  It could really slow down or put the kabosh on future research and development.  Somewhat along these lines: http://www.pbs.org/n...ents_04-02.html

Just a thought.

Teds



#4 Happycat

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Posted 25 May 2012 - 04:31 PM

Teds,

A patent doesn't always mean " you can't touch this". What it does mean is that companies need to ask for a license or some other sort of partnership before developing or marketing a treatment - meaning the patent company gets a cut of any proceeds.  In other words, it says "you have to pay to touch this".

There, let's see if that will bring Phil out of hiding for a ribald riposte!  Phil, you gotta love that softball right down the middle.

Traci






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