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Getting off CML drugs


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#1 DonO

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Posted 29 November 2011 - 11:34 AM

Will I ever be able to get off the CML drug?

Three years ago I was diagnosed with CML. I was given Gleevec but that caused extreme cramping.

Next I took Sprycell but that caused my lung cavity to fill up - when found it was filled 60%. Now I am

on Tasigna and that is working very well. But will I ever be able to get off the CML drugs? One hemotologist

said perhaps in 2 years and the other said never. If you have any information pls share. Thanks.



#2 Taylor

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Posted 29 November 2011 - 12:01 PM

Hi Don,

There are some studies going on to determine this, but nobody really knows for sure.  The best candidates are those who quickly (less than a year or so I believe) get to PCRU and can maintain it for a couple of years.  Even if it were me (which I achieved PCRU in 7 months and I have been dxed less than a year) I would want to reduce dosage after the 2 year point, and not go cold turkey.



#3 Dina

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Posted 29 November 2011 - 01:01 PM

Hi Don,

I take Tasigna as well, I agree with Taylor that nobody really knows for sure.

But for some reason I have placed my trust in Tasigna and hope I wont take it forever.

Have you seen this video? I hope that Dr. Rosti is correct in his projections.

http://www.youtube.c...h?v=muiPllp_JvY



#4 Dina

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Posted 01 December 2011 - 01:40 PM

Hard to believe that only two people had something to say about this very imortant question.



#5 hannibellemo

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Posted 01 December 2011 - 01:48 PM

There has been quite a bit of discussion about this on this site previously and at http://www.newcmldrug.com

You can do a search in the upper right hand corner.

Pat


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"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>


#6 tazdad08

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Posted 03 December 2011 - 10:10 PM

WOW, scary thought. I am less than 3 months into this, But my onc says it will be a for ever thing. I have been told by many many people that Dr Ross Kerns is the best dr to see for cml. That is who I see. He has been realy good so far. But then again, I hope he wrong, and we can get to a point when the drugs and side effects are history in our lives


Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!


#7 Dina

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Posted 03 December 2011 - 10:45 PM

Hi Tazdad,

Did Dr. Ross Kerns say anything about how long we can live with the CML?

Just wonder what's his opinion on that?

I can relate to you in many ways...I'm 36 and have two young children.



#8 Trey

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Posted 03 December 2011 - 10:52 PM

Just 13 years ago the new CML patients were saying "I have a 75% chance of dying in less than 5 years".  In 2011 patients now say "Damn, I have to take this &*%$*ing drug for the next 50 years".  Which is the better condition?



#9 janne

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Posted 03 December 2011 - 11:39 PM

I believe that depending on the individual oncologist, you will get a variety of answers. The thinking HAS been that TKI's were a management drug and not a cure. Now there are a few doctors who are willing to speculate that eventually getting off the drugs is a possibility especially with the newer drugs, and it is all an individual response to therapy. Hooray for these forward-thinking individuals who dare to hope !! I hope too and I do not believe it is a daydream.


Dx'd: 8/2008. Started Gleevec 400 mg 11/08. 

Drug break 2011.

Started Tasigna 4/11 450 mg.

Reduction to 300 mg Tasigna 1/2012.

PCRU 9/2012.

12/2012 Detectable.

PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)

12/2015  ? slightly detectable at probably less than 0.01% per Mayo Clinic.

4/2016 PCRU. Still at 150 mg Tasigna.

 

CESSATION: stopped treatment 7/20/2017. 

9/6/2017:  barely detectable at 0.01%. 

12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.) 

12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.) 


#10 Dina

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Posted 04 December 2011 - 12:21 AM

Hi Trey,

Were they saying that before or after the Bone Marrow Transplant?

Some CMLers back then who had a BMT are still alive and well, right?



#11 tazdad08

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Posted 04 December 2011 - 09:18 AM

I was very open and blunt with him. I ask the foloowing questions;

1  what is my expected life span

2  What organs will the meds effect

3  What organs will the cml still effect that the meds cant counter act

4  should my kids get blood work to see if they carry it

5  can I still lead a "normal life"

his answer are;

1  with the meds that are available, your lifespan wont be shortened by cml

2  none

3  none

4  no. It is unkown what causes the mutation, but it is not hereditary

5  yes. after adapting to the meds, you will only need followups to monitor blood counts.

  I did have my eyes checked and the eye dr said that chemo causes a "wax" build up on theback of your eyes. this causes your vision to change. I did not go for 2nd opinion because I only need reading glasses. I didnt research to see if sprycel says anything about this. I am adapting to the meds. Still get tired quicker than I would like and hae aches, but atleast I am here with my kids.


Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!


#12 ritan/

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Posted 04 December 2011 - 11:22 AM

i'm sure that some are. but having read the blog of a lady who had two BMTs, i'd pass on that one if i possibly could.



#13 Trey

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Posted 04 December 2011 - 12:52 PM

They are the 20 - 25% who had a BMT and survived.  Before Gleevec only a very few survived 5 years on a drug therapy alone (Interferon, ARA-C, etc).



#14 Dina

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Posted 04 December 2011 - 02:08 PM

I've spoken to two ladies, both of them were diagnosed before Gleevec and used ONLY Interferon as a therapy,

one is OFF of ALL medication for 5 years now and the other one has just stopped.

Wish them all the best!



#15 Guest_billronm_*

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Posted 04 December 2011 - 02:54 PM

Hi Don,

Theses are my own personal feelings, none of us wants to have to take these drugs but it is a proven fact that they do work. I would like to go on a lower dose I take Sprycel 100mg 1 day and 50mg the next day.And it is working very well for me. Many people are heading for their 15 year mark on Tkis. Nobody knows how long you can be off meds if it comes back 5 years down the road. If I was given a choice I would rather stay on my meds rather than go off them and 5 or even ten years down the road my cml came back and none of the tkis would work as well as they did the first time. This is cancer we're dealing with and to go off meds is like playing russian roulette to me. I'm just thankful that we have a treatable form of cancer and I won't take any chances with that.

                                                                                                                                                  Sincerely Billie



#16 pamsouth

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Posted 04 December 2011 - 07:01 PM

Trey,  Last week I talked to a doctor at the Hutch, Seattle Wa, Cancer Center.   For my age (64 years) he said the death rate was 10 to 15% in a year.  He said he thought my brother heart/health problem would put him at high risk to be a donor.   I was told by a doctor back in 2005 that because he had serious heart problems that did not mean he did not have good stem cells.  I was under the impression  that the donor was not at a hight risk even with heart condition.  He is 2 year younger then I.  He had quad heart - by-pass in 1993, the lower 1/2 of his heart was gone. Since then 3 defib.  His heart shocked 2 or 3  times into rhythm this year and surgery on an aneurysm and some congestive heart failure.  I know back in 2005 his cardiologist told him it would not be a big deal for him to give me his stem cells, but of course his health has continued to go down.  I just thought they gave him some shots to produce stem cells them filtered them out.


PamSouth


#17 pamsouth

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Posted 04 December 2011 - 07:11 PM

Dina, that video make no sense to me.  They may have drugs that give a deeper response but that it not a  cure.  The TKI DRUGS to not stop you from producing the bad/damaged stem or stop the Philadelphia chromosome from copying.  The drugs just give you a deeper response and since CML is slow growing, it make take time to show back up.  But the only know cure is a stem/cell or bone marrow transplant, from someone who has healthy stem cells.  Just because you kill some bad cells with these drugs does cure the root of the problem.  

I wish some of these doctors would tell it like it is.  The doctor at INdiana University Simon Cancer Center said some of his patients go off of their TKI drugs, but CML is slow, but usually within a year you are back where you started from.  Just takes time for the Ph+ to show back up!!


PamSouth


#18 hannibellemo

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Posted 04 December 2011 - 07:20 PM

Pam,

Just to clarify, BMT or SCT may cure CML, but there is no guarantee and some people relapse regardless.

Pat


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"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>


#19 pamsouth

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Posted 04 December 2011 - 07:23 PM

Thanks for the website. Pam


PamSouth


#20 pamsouth

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Posted 04 December 2011 - 07:34 PM

Yea, Billie I know met 1 lady, when I was DX in 2005, who had a transplant (from her sister0 she was around 50 years old, it had been 10 or 12 years since transplant, she was doing well, no drugs or complications.  Doctor told her she was CURED!!  Also met someone with CLL who had donor transplant, donor was from France.  It's been a few years ago since I talked to him but 97 % of his stem cells were hers.  He did have some problems, but he had them before the transplant caused from the CLL and med's.  MD Anderson Tx said don't let them do a  transplant with your own blood, up there in Indiana!!  I forget is that the one called autologus or something?  Because it will only be a matter of time before your CML is back the same.  I met a few here in Indiana that did that, some younger folks, a couple of men where they did full radiation, they later regretted it, was worse off then they were before the transplant, they should have waited for a donor all that for nothing, now their liver and kidney and immune system were bad.  First off all you can't kill all the Leukemia cells with radiation and they are still broken, and you are just putting filtered bad cell back in your body because you can't filter out all the bad cells.  You have not done anything to cure the root problem, that would be fix the reason why the stem cells are abnormal break into, or a donor stem cells.  I met one lady about 55 years old who used her own stem cell twice, no radiation, ended back like she was, just a waste of money and time.  Unless you have some kind of cancer where you have good stem cells and need to save you cells after radiation of other types of cancer.


PamSouth





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