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Cml doctors willing to reduce TKI dose?


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#21 pamsouth

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Posted 10 May 2012 - 06:07 PM

Mariebow, 

Your two cents, COUNTS!!!   I appreciate  knowing what is going on with all the CML patients and their docs and TKI's ,  doesn't matter if you are a newbie!!

PamSouth


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#22 mariebow

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Posted 10 May 2012 - 06:13 PM

that is so kool thanks



#23 Trey

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Posted 10 May 2012 - 08:00 PM

Since most  issues caused by the TKIs are reversible I would hesitate to put a "premature ovarian failure" label on your issue. 



#24 fola

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Posted 10 May 2012 - 08:12 PM

That's my hope as well.  Thanks Trey.   



#25 fola

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Posted 10 May 2012 - 08:15 PM

Your two cents is more than welcome.  I don't think I would have survived without this forum.  Welcome to our little club. :-)



#26 Susan61

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Posted 10 May 2012 - 09:09 PM

Hi:  I agree that your two cents is very worth it, because thats what this is all about.  Thats how you learn, and how others learn from you.  I am almost into my 14th year with CML, and I am still learning everyday. If you scan through the different questions and answers you will start to understand so many things.

     Glad you are sharing even as a newbie.

Susan 61



#27 pamsouth

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Posted 10 May 2012 - 10:09 PM

Scuba,

I just called Physician Natural.  I ordered "CURCUMIN ONLY/PURE, with piperine.

NO Turmeric Filler. 

There were two kinds, the one you take, which is Super 1000mg w/piperine caplets. 

The other bottle was the same, only it was Enteric Coated, the cost was a tad more for the enteric coating. 

The gentle man I spoke to said the enteric coated would help go directly into the blood.

The enteric coated cost was $38.50 each if you order a minimum of 3 bottle with 100 tablets.

The Super 1000 was $35.00 each for a minimum order of 3 bottle 100 caplets.

I also went online and did a live chat.  The lady I talked to said they were just down the street from MDAnderson.

The order will be shipped tomorrow and I should get it Monday.  I am excited to give it a try.  Meanwhile I have the Turmeric with 95% Curcuminoids.  It my not have time to take effect before my next labs on June 7th.

I see on the web site, the same Curcumin is used at MD Anderson, UCLA, John Hopkins (others) in research and clinical trials.  I was excited to read it helps with Anti-inflammatory, Arthritis & other chronic illness such as Tendonitis.  I have been going to Chiropractor and physical therapy for the last 2 month with tendonitis in my left arm and hand. I have chronic bone pain, so I am hoping that even if it doesn't help with the CML it will help me with the tendonitis and arthritis, etc.

PamSouth

Message was edited by: Jennifer Wilson Please don't include links to retail establishments.


PamSouth


#28 Guest_billronm_*

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Posted 10 May 2012 - 10:15 PM

Hi Mariebow,

  You're 2 cents and any other suggestions are always welcome. That is how this forum works,whether you're new here or have been here awhile, there are new statistics, and people who contribute to this forum everyday. We all learn something new from everybody. Welcome to your new virtual family.  Sincerely Billie

Dear Fola,

I don't know if I welcomed you to our site yet. Thank You for joining, The great thing about this forum is, even if you don't understand the statistics (ME), there is always something to share with everybody,ie what we do to help with side-effects, or ask somebody what our numbers mean, I'm always asking something, because I can't understand all this stuff, I guess I'm just to old. To much brain fog, and too many other things on my mind. What ever happened to the golden years? My sister-in-law says"by the time you reach your golden years,you"re all rusty". I love it. And for all the young people out there remember that, just write everything down starting now, before the I crs starts to happen. Mine started when I was about 30.            Take Care Billie



#29 pamsouth

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Posted 10 May 2012 - 10:25 PM

Billie,  "ABOUT 30"  are you sure?

PamS


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#30 fola

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Posted 10 May 2012 - 10:58 PM

Thanks for the welcome Billie.  Don't worry, I think my brain started to atrophy ages ago.  I walk into the kitchen and can't remember why I'm there...oh yeah...food!  Who am I kidding, by food I mean ice cream. ;-)



#31 hannibellemo

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Posted 11 May 2012 - 06:37 AM

Ice cream is food, I count it as my 'diary' regularly!  What is life, really, without a little ice cream? (I feel it raises the level of importance if I philosophize about it) 

Pat


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"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>


#32 mariebow

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Posted 12 May 2012 - 09:01 PM

Thanks fola



#33 mariebow

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Posted 12 May 2012 - 09:01 PM

Thanks Billie



#34 mariebow

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Posted 14 May 2012 - 11:32 PM

This is true scuba, he will answer back.






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