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Cure for CML

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Is anyone aware of people who claim to have been cured of CML?  I do mean those who have not had a transplant done here.  I ask this question because I have knowledge of at least one person claiming on a website to have been cured and is no longer taking a TKI and has not done so for many years.  She has stated that her doctor has verified this fact and that it has been shared worldwide and yet, for myself, I've never heard of such a thing.

Now of course this would be good news if it happened but the concern here is having someone claiming something that perhaps is not true and telling it to others who are suffering.  We all want a cure for this disease but I have never heard of the disease simply going away either.

Thoughts?

 

Hi Cali48,

I wonder, based on your name, if you are in California? I am in California myself. Did the person in the video say what she took, if anything, to cure herself and/or whether she took it with TKIs. 

Do you have a link to her video? There are accounts I am aware of where people cured themselves of ALL and an elderly Canadian of CMML (that is not a typo, there are two “m”s because he had a multiple myeloid type). The cures were natural cures. 

Also, there have been murine (mouse) cures of CML (including human CML stem cells transplanted into their bone marrow), but human clinical trials are pending. I am keeping a close eye on all this and have collected a lot of information. The cures were accomplished in conjunction with TKIs, which were then no longer needed. 

Beware the Snake Oil Salesmen.  

 

There are hundreds of sites out there that say they cure x (insert any disease name here) and what they are really selling you is a lie and stuffing their pockets with your cash.  If they are willing to give you information on something that may cure you, have an open mind but research it.  If they are selling something, then all they are doing is trying to make money from your suffering.  

 

There are cures coming, be patient, City of Hope (California) is either testing theirs now or will be soon and University of Glasgow is currently testing theirs.  

 

https://www.cityofhope.org/research-news/test-promising-new-drug-to-trea...

https://www.gla.ac.uk/news/archiveofnews/2018/august/headline_602914_en....

You will find a fair amount of talk on this site about treatment free remission (TFR), and Prof Clarke talked at the September patient day about the Destiny trial in UK which has shown that in certain circumstances a good proportion of people who have held MMR for several years have a good chance of keeping MMR without taking any TKI. Richard Willoughby has been in that position for a while having been part of the Destiny trial, and talked about his experience at the patient day as well. I am currently 7 months post stopping taking imatinib and bloods are still OK. There is a link at the top of the home page to all the talks from the patient day.

I'm not sure however whether TFR would be regarded as "cured". Recommendations are currently I believe that people in TFR should still have a PCR every 3 months, perhaps extending to 6 months after several years. Cured from me would not involve the check-ups, but TFR is still a pretty good place to be for those who get there. 

When I was diagnosed 12 years ago I was told that at best I would be on 400mg imatinib for the rest of my life. Progress is happening and the pace of it is increasing; who can tell where we will be in another 12 years, but I am pretty confident I will be here to see it.

MD Anderson has been experimenting with venetoclax along with TKI treatment.  Promising results thus far.

 

Stephanie

I have been on Sprycel for almost one year. I have numbness in my hands. Has anyone else experienced this?

I've been PCR "zero" for 9 1/2 years, and in TFR for nearly 4 (also zero PCR).  No transplant - I took 400mg imatinib for 6 years (one at reduced dose) and hit "zero" very fast - under 6 months. 

Am I cured? I do not say so and nor does my consultant. Might I be? Who knows - I'm told there have been very rare (and I mean VERY rare) quite late instances of loss of MMR for others who stopped - eg after 6 years - though with response to TKIs again.  My consultant - who has been a CML specialist for many years - said this wasn't wholly surprising based on experience with transplant patients, some of whom can have CML events decades after transplant.

I would be very wary of anyone claiming an absolute cure because in my view they can't know, and I would be even more wary of someone claiming to have found a cure based on x with y etc without years and years of data to support it.  Of course it's possible but it's way too soon to make any such claim.

There is however a growing number of functional cures, including people still on TKIs, and no doubt some combination therapies will increase that number.  I know lots are being tried and some will undoubtedly improve TFR rates - but cure is a different thing and any claims to this at this point strike me as unjustified, at least.

 

my doctor and i had a conversation about a cure,he said that if i was at MR 4.5 for 2 years i could try a medicine holiday,well he said if your blood stays stable for a years,we are still not so far ,that we can say you are cured ,as there is not enough knowledge out there to support such a claim,not enough is known about the CML and the TKI`s have not been around long enough to say this,however in time it may become thus that 50% are cured by TKI`s and i thought this was a sensible answer,he also assured me that if the "holiday"failed i could go back on the TKI`s without a problem,such as rejection etc.

hope this helps

Harriet

Cancer occurs because our immune system developed (or inherited) a failure to check it. Unless a new gene therapy is 'invented' which trains our immune system to identify and kill cancer cells, we are not "cured" in the sense most people define cure.

A cure would be such that one would never have to be tested for CML again. No more PCR's. CML is gone for good.

The reality, however, regardless of remission state, is that the philadelphia chromosome gets created all of the time. The few cells getting created never expand for some reason once the disease is under control. Because CML can restart, we will have PCR's taken for the rest of our lives just so we can catch it early.

This is not to say that some of us are not, in fact, 'cured'. I'm sure some of us are "cured". But this is a functional cure. We don't know if the immune system has re-established its ability to check CML. It's possible ... even likely that has occurred. But we just don't know. So for practical purposes anyone who developed CML is never cured of it. It is just in permanent remission with no TKI needed and for which a PCR is taken to verify. Leukemic stem cells could just be quiescent or the immune system is finally able to keep it under control. But for how many years? five - ten?

Will there be a cure some day? Yes. We will learn exactly how CML expands (everyone has CML cells) so that our immune system can be adjusted ... perhaps via a vaccine. Vaccine leads to cure. CML not being able to re-start is definition of cure. I have a feeling when that happens, cancer itself - all of it will be eliminated as a disease. The fundamental biology of genes, proteins and cells will finally be figured out. It's coming.

I have numbness and tingling in my hands at times, and becoming more frequent.

I’ve been diagnosed with seronegative spondyloarthropathy (ankylosing spondylitis). I kind of figured it was related to that. June will be the one year mark for me on Sprycel 20 mg daily. Of course, my aches and pains started with TKIs.

getting closer

https://www.redaccionmedica.com/secciones/hematologia-y-hemoterapia/logr...