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Diagnosed 14 years ago, finally achieved 0.00


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#1 gerry

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Posted 13 April 2015 - 04:06 AM

Hi,

Thought some of you might be interested to read an article in the Australian CML news.

Article is about a CMLer who was diagnosed in 2001. He was on Gleevec for 10 years, counts still weren't that good and has since switched to Tasigna. Last test came back 0.00

 

Article comes from the CML News for April 2015

 

http://www.leukaemia...earch-resources



#2 JPD

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Posted 13 April 2015 - 08:18 AM

That person is the Turtle King


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#3 Billie Murawski

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Posted 14 April 2015 - 11:26 PM

Hi gerry, I'd like to subscribe to that newsletter. Do they give all your information to everybody including the Pope.

                     Thanks Billie



#4 gerry

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Posted 15 April 2015 - 03:34 AM

If you mean does the Leukemia Foundation on sell your details, I would hope not. I get a hard copy posted to me. It comes out quarterly I think, but nice to have a newsletter just for CML.



#5 Gail's

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Posted 15 April 2015 - 11:36 PM

Gerry I find the LLS website and people on the phones to be very helpful. Aussie newsletter looks good too but if you haven't joined LLS check into it.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#6 gerry

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Posted 16 April 2015 - 11:33 PM

Hi Gail,

Thanks, I'm an Aussie so cheaper to just have them post me a copy of their newsletter. :)



#7 jmoorhou

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Posted 16 April 2015 - 11:46 PM

Hi all, have you noticed that the countries that have cessation trials, England, Sweden, France are caucasian as opposed to mediterranean or african.

 

Interesting......makes you wonder if skin type has something to do with it CML, that is.


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis




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