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Erin Zammett Ruddy - Three months off treatment and so far so good (ish)


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#1 gerry

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Posted 03 March 2016 - 03:53 AM

As many of you know, I've been off my life-saving cancer medication since November. 

http://www.erinzamme...r-so-good-ish/ 



#2 hannibellemo

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Posted 03 March 2016 - 07:18 AM

Gerry, 

 

The link appears to be broken.


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 Buzzm1

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Posted 03 March 2016 - 08:07 AM

Gerry, 

 

The link appears to be broken.

there isn't an internet standard for link name (URL) compression 

here's a shortened link http://bit.ly/1RsdPik


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#4 mlk210

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Posted 03 March 2016 - 12:58 PM

"Here's how Michael Mauro, my beloved doctor of 14 years and the one heading up the trial at Sloan, explains it: "CML at diagnosis is like a fast car with a full tank of gas right at your doorstep and it just wants to go. CML in deep molecular remission is the hull of that car with no engine and no gas and it's far away. You might be able to see it but with time you realize it's not going to go anywhere.""

 

I love seeing all the comments on her post from other CML patients that are also off treatment. They all give me hope that someday I'll be lucky to get off these meds!


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#5 kat73

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Posted 03 March 2016 - 01:51 PM

Gerry (and Buzz) Thanks so much for sharing that!  It was very heartening.  I was only just recently wondering about her again.  I've written her name down this time on a piece of paper and will check in on her every once in awhile.  It's pretty obvious that I don't know about blogging sites, isn't it!  In Garth's immortal words, we fear change . . .


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#6 gerry

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Posted 03 March 2016 - 04:52 PM

there isn't an internet standard for link name (URL) compression
here's a shortened link http://bit.ly/1RsdPik


Thanks Buzz - I had the original link, but posted the URL for the page which normally works, but perhaps that doesn't work with blogs. Learn something new everyday. :-)




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