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Enduring TKIs long-term


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#1 tiredblood

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Posted 05 November 2014 - 10:57 PM

With the side effects of the TKI, I just can't envision myself taking this drug for the rest of my life.  However, the alternative isn't that promising either.  IIUC, there are clinical trials to determine if one can stop taking the TKIs after having maintained a complete molecular remission for 2 years.  I've been thinking about how much research would be needed for me to decide to quit taking the TKI.  So, I was curious as to what it would take for others to come off the TKIs.  How much evidence would it take for you to stop?



#2 gerry

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Posted 06 November 2014 - 01:27 AM

I started reading info on the STIM trials after I had maintained PCRU for a year. I also reduced my Gleevec to 300mg at that point, with doctor's approval. I will have stopped taking Gleevec for a year come 19th November.

Muscle/joint issues and fatigue continue to be an issue for some people who have stopped their TKI.



#3 pammartin

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Posted 06 November 2014 - 10:46 AM

If the side effects remain for some people, then I would not stop the drug. Instead of stopping, a believe a reduced dose as long as response is maintained would be a solution. A few years ago Trey wrote on one of my posts about taking control of your care, this included meds. I cannot quote exact comment but it was something like this, The least amount of drug one can take and maintain response is the best choice. After reading that I began questioning my dosage, the side effects, and different medications, and I continue today. I have changed oncologists twice because I did not have a say in my treatment with the former doctors.

Gerry, I am happy your choice worked for you, I just do not believe it is an option for everyone. That being said, you do not advocate stopping med, just that it is working for you.

Tired blood, only you know what is right for you, but most of the studies I have read concern people who have had 2 plus years of complete response. I am at a few days less than 6 months without Sprycel because of side effects. Last Friday my labs showed I might be losing response, having BCR/ABL test next week. Quarterly testing will follow next week and oncologist told me to get ready, it is time to restart TKI. Am I excited? No. Is it necessary to live? Yes.

#4 Trey

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Posted 06 November 2014 - 11:05 AM

The long term future for most CML patients will likely be either a low "maintenance" dosage or actual drug cessation.  At half dosage (or lower) most patients could do quite well after a couple years of PCRU.  And many will be able to stop entirely.  Just do not rush it during the first few years.  Drive the leukemic cells into a very low level (beyond just barely PCRU levels) and the body may learn to deal with the rest. 



#5 LivingWellWithCML

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Posted 06 November 2014 - 11:41 AM

Do we feel that some extended PCRU is required to adjust to a "maintenance" dosage, or is say ... ~ 4 log reduction good enough to experiment with a lower dosage?


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#6 Antilogical

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Posted 06 November 2014 - 12:18 PM

I was at PCR-U for only a few months when my onc cut the dose due to impending surgery. I lost PCR-U, maintaining a very low but stable bcr-abl level. I recently tried to resume the full dose, but at my next appointment, my onc took one look at my very puffy face and ankles, and returned me to the lower dose.  He's very proactive on quality of life.


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#7 Buzzm1

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Posted 06 November 2014 - 03:15 PM

Diagnosed Oct., 2009; PCRU.  Pending my Dr.'s approval, I'll be lowering my Gleevec dosage from 400 to 300mg in early December, providing six weeks on the lower dosage by the time of my mid-January blood test.  If I maintain PCRU through the mod-April blood test, will decrease the dosage to 200mg, etc..  


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


#8 JPD

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Posted 06 November 2014 - 03:33 PM

Hopefully studies will show that once we get under 1% then we are all "safe" to a certain degree.  My Onc said that there is growing group of researchers finding that to of merit. That will make the PCR-itis a lot better on most of us who are between .01 and 1.0.

 

But, yeah, Id just assume stomp the hell out of it before backing off or stopping.  Having progressive hair loss all over my body is a small price to pay (just stay off my eyebrows and beard please).


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%


#9 Trey

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Posted 06 November 2014 - 05:29 PM

There have been no clinical trials for lower "maintenance" dosage, so there is no real data.  I was on 400mg Gleevec for about 4 years, then on 200mg Gleevec since 2009 and never lost PCRU. 

 

My sense is that the faster a person responds to drugs therapy, the more likely they can go to a lower dosage sooner.  But if side effects are an issue then lowering dosage, probably in stages, could be successful for most patients.

 

But overall I believe in continuing to drive the leukemia into deep response levels beyond just barely PCRU for a couple/few years past initial PCRU.  That would be a conservative approach.  But if side effects are a problem, drug change or lower dosage can make sense to balance the QOL factors.



#10 gerry

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Posted 06 November 2014 - 06:32 PM

Deciding whether to stay on full dosage, decrease your dosage or stop taking your TKI after at least two years of PCRU is a decision for the individual and their doctor.

After getting my doctor on board with the idea of lowering my dosage after being PCRU for a year and then stopping after two years PCRU, I have stopped, with the knowledge that if the CML makes a reappearance I will be back on a TKI.

 

It took around six months for most of my side effects to disappear, though I seem to still have a couple symptoms of Peripheral Neuropathy http://news.cancerco...ral-neuropathy/.

 

Interesting article from 2010 http://asheducationb...2011/1/136.full.
 



#11 Marnie

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Posted 06 November 2014 - 08:31 PM

While I don't always approve of what Trey posts (I will never eat a Baby Ruth again. . .oh yeah. . .I don't like them anyway. . .and what about that disgusting moose/buffalo thing!). . .I do agree with a lot of what he says.  I was a slow responder.  I finally got to PCRU.  Had to go off meds, and numbers went up (dang).  Finding a balance between lowered dosage and side effects is what I'm striving for. . .and I assume I'll take TKIs for the rest of my life.  Would love to not have to, but I just don't see that in my future. 



#12 tiredblood

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Posted 07 November 2014 - 09:51 PM

Is there any increased risk of developing a mutation by lowering the dose after being PCRU for say 2 years?



#13 Trey

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Posted 08 November 2014 - 09:04 AM

There is no evidence of lower dosage causing mutations under any conditions. 



#14 PhilB

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Posted 09 November 2014 - 01:53 AM

Do we feel that some extended PCRU is required to adjust to a "maintenance" dosage, or is say ... ~ 4 log reduction good enough to experiment with a lower dosage?

That's exactly where I am, so I'll be watching the results of the DESTINY trial closely to see how cessation works for others in that group (not me as I was far too chicken to sign up).  Reduction seems more sensible than cessation for this group, but I'm not aware of any trial into that unfortunately.

 

There is one other really scary thing to worry about for anyone who does go the cessation route though - having to admit that some of these symptoms we have been blaming on the TKIs for years are actually down to us getting old!



#15 pammartin

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Posted 10 November 2014 - 04:48 PM

It is nice to have a buffer reason for my graying/thinning hair, wrinkled dry skin, and stiff joints. I think I like blaming everything on TKI, it can't be my age!

#16 gerry

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Posted 11 November 2014 - 11:45 PM

I had greater trochanteric pain syndrome in my early 40s at no time did they mention getting older to me. I was a few years away from being diagnosed, so wasn't on Gleevec. It has come back again, Now I'm getting told "you know you're getting older" as the cause of it and I can't blame the Gleevec now, darn lol



#17 Marnie

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Posted 12 November 2014 - 07:04 AM

I would blame the Gleevec anyway!  TKIs make a great scapegoat.



#18 jmoorhou

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Posted 12 November 2014 - 06:30 PM

I am down to 0 leukemic cells detectable after 9 months on 400 mg  Gleevec, besides some stomach pain the worst side effect has been swollen eyes...I no longer look in the mirror unless I have to...I'm 62.  My wbc got to 23.9.  I was told I could never reduce the dosage because of building resistance.  

 

Now I wonder if that is the right information....?


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

#19 pammartin

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Posted 12 November 2014 - 07:10 PM

Mirrors!  I avoid them when ever possible






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