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#41 SandyG353

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Posted 12 November 2016 - 06:58 PM

Yes, Buzz, that is what she said the oncologist told her.  She responded by saying "No Way"  She would only take the 400mg if her numbers go up. She will take the blood test in 2 weeks and then we will see if she stops the Gleevec.  If she is take off the Gleevec, she is considering flying to consult with one of  he top docs.  Right now her thoughts are with going to MD. Anderson to see the top doc.  I don't know why she isn't considering Dr. Druker.  I will let you know how things turn out.



#42 Buzzm1

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Posted 12 November 2016 - 07:38 PM

Yes, Buzz, that is what she said the oncologist told her.  She responded by saying "No Way"  She would only take the 400mg if her numbers go up. She will take the blood test in 2 weeks and then we will see if she stops the Gleevec.  If she is take off the Gleevec, she is considering flying to consult with one of  he top docs.  Right now her thoughts are with going to MD. Anderson to see the top doc.  I don't know why she isn't considering Dr. Druker.  I will let you know how things turn out.

Sandy, if your daughter stops Gleevec, IMOO there is no reason to see a top doctor until, and unless, she loses MMR, and needs to restart.  Assuming that she will begin testing monthly, at least beginning with the second month, she will likely have some early indication if she begins to head in that direction.  But in the same breath, remember that during Stop Trials everyone who loses PCRU doesn't necessarily lose MMR.  Wishing your daughter the best of luck.  


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


#43 gerry

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Posted 12 November 2016 - 11:37 PM

I'm like Buzz, not sure why your daughter wants to see another doc if she comes off the Gleevec. There isn't really anything they could do for her. She just needs to make sure she is tested monthly for the first six months and if she gets through that without losing MMR, then she can move out testing a bit more.

Even restarting isn't an issue.



#44 Buzzm1

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Posted 13 November 2016 - 12:10 AM

Sandy, jfyi, after stopping, approximately 80%, of those who relapse, do so within the first 4 months, and roughly 95%, of those who relapse, do so within the first six months.  


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


#45 Trey

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Posted 13 November 2016 - 09:01 AM

she is considering flying to consult with one of  he top docs.

 

They don't know any more than what you have read here about this issue.



#46 SandyG353

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Posted 13 November 2016 - 02:38 PM

Hi Buzz, Gerry, and Trey.

Thank you all for your feedback.  I will inform her of what you said.  My guess is she probably meant flying to see the top doc if the numbers come back up.  I will keep you informed.  Her blood test will be taken in 2 weeks.  Then we will see  what happens.  As I said in one of my posts, the lab was changed and the test taken a few months ago had a slight elevation from 000 , but the oncologist said that he thought it was lab error because she was the third person with CML that had a slight elevation from tests done previously by a different lab.

Sandy

P.S.  Trey, you are right.  She doesn't need to speak to a top doc because none of them know more than what I have read from the group.



#47 SandyG353

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Posted 16 November 2016 - 06:08 PM

Hi .

I just wanted to let you know that I sent an e-mail off to Dr. Druker and asked what he thought of my daughter  going off of Gleevec based on the achievement of total molecular remission from 6-9 months after starting it.  I, also, informed him that her oncologist said that if her numbers come back, he would put her on a double dose of Gleevec. Dr. Druker said that she can safely stop the Gleevec. He stated that one of the predictors for those who successfully stop therapy are people who responded as quickly as my daughter did.  He stated that any of his patients who stopped Gleevec and had the numbers go back up were put on the same doseage of Gleevec that they took prior to the cessation. My daughter will share this information with her oncologist. 



#48 Buzzm1

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Posted 16 November 2016 - 06:54 PM

He (Dr. Druker) stated that any of his patients who stopped Gleevec and had the numbers go back up were put on the same doseage of Gleevec that they took prior to the cessation. My daughter will share this information with her oncologist. 

Sandy, it might be advisable for your daughter to only share this with her current oncologist if it becomes necessary.   


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


#49 gerry

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Posted 16 November 2016 - 08:55 PM

Dr Druker's answer was as expected, but at least it gives you something to provide to your daughter's Onc. Luckily cessation is relatively easy in that it either works or it doesn't. Otherwise I would be slightly concerned about the Onc's knowledge of it.

#50 VickiW

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Posted 01 December 2016 - 09:54 AM

Good morning!

just popping in to say I have no news (which is good news  ;)

I am officially past the 6 month mark (actually just shy of 8 months) and still doing and feeling better than I have in many years.  Only problems are those starting to reveal themselves from the damage the years of TKI's have done to my pancreas, eyes, and bones.  (Yep, I am one of those that my body didn't tolerate the drugs very well and I was often the "first on my block" to develop the new  "surprise" complications from the Sprycel-we won't even bother to go into the 2 years of horror on Gleevec-one of the reasons my onc decided I should be one to try the TFR)

 

Hoping you all are having a safe and peaceful holiday season.  I am so thankful for all of you here with your encouragement, wisdom and knowledge so far advanced to my own on this journey.  I really appreciate each and every one of you.

 

I am often lurking  :ph34r:  but promise to report in next year!

 

 

(Just to preface for those who may be new to this thread, I was dxd in 2007, first on Gleeec then Sprycel, and after a couple rough patches , reaching PCRU and holding it for many years, went on minimum dose of Sprycel for more than a year and finally last April started the TFR protocols.  My onc has now (partly due to the distance we must travel) extended my required visits and labs to 3-4 months intervals.)


Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16


#51 mikefromillinois

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Posted 01 December 2016 - 10:33 AM

Congrats Vicki !!  Wishing you too a nice holiday season.  Your clean test at six months was a nice early Christmas present.

 

While I'm on I might as well give my own update.  I have been in the LAST trial for 18 months now.  I stopped taking Sprycel in June of 2015.  Just tested undetectable at 18 months.  Still having bloodwork every two months.

 

As an aside, one of my docs mentioned a clinical interest within the trial with regard to "how soon" people can attempt cessation, suggesting the possibility of stopping with less than two years of sustained PCRU.  Thought that was interesting.

 

Happy holidays to everyone...

 

Mike



#52 gerry

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Posted 01 December 2016 - 06:48 PM

Hi Vicky,
Congratulations on the milestone. Hope there are easy fixes for your other issues. :-)

#53 gerry

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Posted 01 December 2016 - 06:50 PM

Hi Mike,
Congrats on the 18 month milestone.

#54 VickiW

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Posted 01 December 2016 - 07:46 PM

Thank you for the nice congrats from Gerry and Mike  :wub:

 

Wow Mike!  18 months!!!!  Good job!

 I'm "technically" on the LAST too.  Too far for me to travel, complicated, etc. for me to officially participate but my onc is forwarding all my records to them.

 

Less than 2 years?  Wow.  I would think that would require some extremely tight parameters.

 

Thanks for the well wishes on the "sides" Gerry.  Nothing is actually fixable (or reversible) at this point but so far all are controlled or at least the progression is able to be slowed.  I like to joke that I have become a "basket of uncurables"  :D

But I'm still kickin' &%$^  :wacko:   ;)


Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16


#55 kat73

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Posted 02 December 2016 - 12:54 PM

"Basket of Uncurables" - That is terrific! - I'm going to steal that one - it's a perfect description of everything I've got going on.


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.


#56 VickiW

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Posted 05 December 2016 - 07:15 PM

just read several of the papers etc. coming out of ASH 2016 on the latest results from the multitude of TKI cessation/TFR studies.  Would be very interested in hearing anyone's thoughts.


Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16


#57 kat73

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Posted 06 December 2016 - 12:44 PM

It's all very encouraging for those of us bedeviled by side effects and worried about the wide target problem of TKI's over the long haul.  However, I still worry that leaving even a stable small amount of CML (at the MMR level) might not pan out to be a great idea over several decades.  I keep thinking of other hidden diseases that can come roaring back much later:  chicken pox (shingles), polio, TB, NHL, and, I'm not sure about this, but don't HIV patients have to keep up their medications forever?  I think we can't stop worrying until we find a way to KNOW that the originating leukemic stem cell is vanquished. And will THAT day ever come?


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.


#58 VickiW

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Posted 09 December 2016 - 12:27 PM

I hear you Kat and agree.  I went into this honestly not expecting TFR to hold forever.  My body needed a break from the toxins.  Specifically my pancreas.  Sprycel, among it's many complications (aka side effects) is that it can (emphesis on "can") be very rough on the Islets of Langerhans.   Such is my case.  Hopefully it also gives me a break from future recurrences of the pericardial effusion.

 

Now, if the CML decides to stay away long enough for me to pass from some other old age malady, I think I could handle that ok  :rolleyes:


Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16


#59 kat73

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Posted 09 December 2016 - 03:56 PM

VickiW - Good luck on continued TFR!  You've got a good profile for it, going in.  Keep us posted! 

 

As I see the whole research trials shebang, it seems the issue of can TKI's be discontinued (or reduced in dose) is framed in one of two ways:  One is "the proof is in the pudding" tack - try it and see what happens.  Numbers stay down?  Yay, keep going and fiddle with lowering the bar for eligibility (length of time on TKI's, length of time at PCRU, or maybe requiring only reaching MMR) and expectations (maybe living with MMR or even just CCyR).   The other frame is proving the negative - we don't know if/when CML is cured, so stopping treatment COULD bring it roaring back, possibly in an untreatable form.  Both frames lack data.  Just because a TFR patient has gone five years PCRU does NOT prove the CML is cured or "gone," never to come back.  We have no test that can see the generating stem cell or its absence.  For that matter, even if that stem cell is absent it doesn't prove that the whole chromosome shift thing won't happen again spontaneously.  Similarly, I have seen no data proving that leaving low residual disease untreated will make the CML resistant or mutate and render it untreatable in the far future.   If I can get my onc's reasoning behind his belief in that latter frame without making him mad on Monday, I will report back! 


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.


#60 SandyG353

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Posted 10 December 2016 - 05:29 PM

Hi Everyone.

My daughter will see her oncologist on Weds. to find out if her blood work is still 000.  If so , she will stop the Gleevec.  I was given a link to read which was a report of trials in another country which had the people reduce the Gleevec and another drug in half and watch the numbers.  If they stayed 00, they were given the go-ahead to stop the CML medication.  That sounds like a good plan.

There may be one problem involved in my daughter's case.  She had a mark on her leg which was biopsied .  It is either a wart or squamish cell carcinoma.   If anyone remembers , I posted about her swollen lymph node around the lungs.  The biopsy and growth of  specimens in petri dishes turned out to be nothing.  She , also, had a blood filled cyst from the pancreas aspirated and biopsied.  that, too, came out negative.  She got stuck with a $4,000 bill because the doctor used an out of network lab.  However, in network labs don't do it. If the doctor did a pre-authorization with the insurance company, it would have been covered.  2 appeals were denied.  Now there will be a hearing in Trenton. 

My daughter has had precancerous growths removed from different parts of her body.  My question is for Trey- Do you think that all of these health issues were caused by Gleevec?  if so, hopefully, on Weds. she will wave goodby to Gleevec.






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