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Ariad Trial--Latest Test Results

Started by BethG , Jul 22 2011 07:32 PM

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#1 BethG

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Posted 22 July 2011 - 07:32 PM

Hi all,

Just received my latest BMB results and they are fabulous! My PCR was .072, which I am super happy with. I had to take a month-long drug holiday in January due to a full body rash, so my PCR in April had jumped to .1, which was a little scary. But, as my co-worker said today, "the Kool-aid is still working." Yeahh!

Also, a little tidbit to share with others. My GP suggested I start taking B12 to help with some side effects I was having and it has changed my life! I take 1000mcg a day and most of my fatigue is gone (just normal, end of day tiredness) and my skin, while still dry, is a lot happier and healthier. I realize I am a sample size of one, but maybe it will help someone else out there. (Yes, I did get approval from my hematologist before starting this supplement).

Going to have a glass of wine (or two or three) tonight to celebrate.

BethG


#2 Trey

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Posted 22 July 2011 - 09:27 PM

Very exciting news.  T315i can eat buffalo sharts.  (But I won't post pictures due to sensitivity issues....Hannibellemo et al)


#3 threedprof

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Posted 23 July 2011 - 02:24 AM

That is wonderful and celebration worthy! Enjoy the wine and hope it continues working well for you :)


#4 ChrisC

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Posted 23 July 2011 - 10:55 PM

Congratulations, Beth! Excellent response to Ariad (though you've had your ups-and-downs for sure). You are leading the way, and many will undoubtedly benefit from your participation in the trial. Most especially we celebrate your SURVIVING EVERYTHING THROWN AT YOU <thumbing our noses at the T315i mutation>! [where's the emoticon for raising our glasses together? clink!!]


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!

 

 

#5 Cathy

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Posted 24 July 2011 - 05:45 PM

Beth

Outstanding and congradulations. it is so wonderful to here you are beating the battle ! have a glass of wine for all of us!

continued heath and progress!

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 !!

 

#6 Susan61

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Posted 24 July 2011 - 07:22 PM

Congratulations Beth:  I am rejoicing right along with you.  We love to hear good news.  I know there are some people who are not on this discussion board who are also doing very well with this Ariad Trial.  Its so amazing the progress that is being made in the fight with CML.  Enjoy your wine, and have a great week.

Susan


#7 Tedsey

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Posted 25 July 2011 - 10:26 PM

Beth,

Thanks for sharing such great news!  "Long Life to You!"

All the best,

Teds


#8 hannibellemo

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Posted 27 July 2011 - 07:48 PM

Beth,

That is very good news, indeed! I missed sharing a virtual glass on the day so I'm raising one in your honor this evening. (A very nice mouvedre rose' - it's wonderful with BBQ). <Clink>

Pat


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>

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