30 replies to this topic

[r06ue1]

Fellow CML patient given one year to live.  

 

http://www.dailymail...ist-cancer.html

 

I'm trying to find out more info and send him some information on latest CML therapies and options.  Below is his Facebook page.  

 

https://www.facebook...t.5?fref=search

 

 

[CallMeLucky]

Here's the link to his website that explains his story.  He's had a rough go.  Dx at 12 years old, seems like he got into remission for a while.  Now 20, his PCR jumped from .001% to 11%.  His CML mutated and he now requires a BMT.  Doesn't appear to have a donor.

 

To compound his challenges, he had a sister who committed suicide a few years ago.

 

I admire his attitude in spite of all he has dealt with.

 

https://mybestfriendslist.com/ourstory/

[r06ue1]

Thanks for posting that.  

[JohnFromChicago]

I wonder which mutation he has...I hope he's still on a TKI and one that best targets his mutation. They kinda make it sound like he has no options...maybe just the way the article is written.

[scuba]

Is this case legitimate? Just asking - it may be, but I have heard of scams related to cancer and 'gofundme' sites:

 

https://vitals.lifeh...-sca-1784265515

[Sandrea]

https://www.facebook...73555782683088/

https://www.yooying....36856_272261792

[thatguy]

Anybody tried reaching out via Facebook to him directly?

[r06ue1]

I don't think it is a scam, too many papers and TV stations covering it.  That doesn't mean that it isn't though.  

 

http://www.nydailyne...ticle-1.3676852

 

https://www.washingt...m=.1326dc7cfbe5

 

I sent him a message on Facebook but no response.  

[JohnFromChicago]

It seems very unlikely that he could be certain he has only a year to live since its been only 3 months since September when his PCR "jumped from .001% to 11%". I wonder if he switched to a new TKI and if he had a follow up PCR what his latest number is.  Seems he should try at least two other TKIs before he goes for a BMT too (which isn't a death sentence either). Hope he is seeing a doctor who knows what they are doing.

[kat73]

Maybe he has CLL?  not CML?

[Sandrea]

September, 2015 - "Chronic myeloid leukemia, BCR/ABL-positive, not having achived remission"...

chris.png    1.02MB    14 downloads

 

[JohnFromChicago]

September, 2015 - "Chronic myeloid leukemia, BCR/ABL-positive, not having achived remission"...

chris.png

 

I wonder if this hospital documentation considers anyone with BCR/ABL-positive to have "not achieved remission" Seems his BCR was well in MMR (.001) until very recently...

 

"On September 2nd, 2017 Chris sat down to hear the worst news possible. The cancer cells in his blood jumped from .001% to 11% and had officially returned." from...https://mybestfriend...t.com/ourstory/

[thatguy]

Hopefully he's only lost response to one drug or had a testing error, and isn't very informed on his disease, or relayed to his friend the news and his friend has made a presumptuous set of decisions.

I'd hate to assume it's a scam or a death sentence.

[rcase13]

So the whole no mutations after 2 years is a myth. Any one of us can get a mutation at any time even if we are PCRU or in a deep remission.

Hopefully they can get him in a trial and find a perfect match for a BMT. He is young I don't understand why a BMT can't help him.

[thatguy]

They said they don't have a match. When they typed me for a match the staff said chances are good for those of northern European decent, but for other demographics and mixed ethnicities it's more difficult.

[Trey]

Count me as very skeptical.  One PCR does not mean anything -- we have all seen CML patients here with such single large PCR blips which turn out to have been a lab error.  And no self-respecting Onc would tell a 20 year old they only have one year to live based on a single 11% PCR.  No mutations are listed in the referral, which is odd, although the social media stuff says "the cancer was a new mutated string that is resilient to most of the experimental drugs he had used before."  Even if he has T315i, he should have been put on Ponatinib.  It could be possible the Onc is trying to get him to cure his CML by transplant, which is what his Onc wrote in the referral (Sandrea's attachment).  That is what some Oncs think is a good idea for young people.  Sometimes the referral wording is used to justify procedures such as a bone marrow transplant to the insurance company, but I have no idea what has happened here. 

Edited by Trey, 08 December 2017 - 10:52 AM.

[scuba]

So - Trey and I are in agreement. Yes, Virginia, there is a Santa Claus. Next they'll tell me it snows in Houston!

 

[kat73]

rcase - Yes, it would seem so.  I once asked my onc if he was seeing any drug resistance setting in as far out as ten years, and he nodded slowly, mournfully - yes.  I remember finishing the Mukerjee book (Emperor of All Maladies) and being very, very profoundly depressed by the take-away:  cancer always wins in the end.  All cancers become resistant to chemotherapy, eventually.  When I worked for a doctor many years ago he told me flat-out: the only cancer that can be cured is one that can be cut out.  If you have to take chemo for it, eventually it will come back.  And yet, somehow, we are hopeful that TKI's are different, that CML is different.  I know I hope so.  If I didn't, I couldn't go on.  When Dr. Druker was quoted as saying he didn't see why CML couldn't be kept in check by the existing TKI's (at the time that was Gleevec and Sprycel) for thirty years, boy, did I cling to that statement.  We are in a race, my friends, to just stay one jump ahead.  And then another.

[r06ue1]

The only safe place is to not have CML, with all of the news in recent years about various potential cures, hopefully no one currently with CML ends up dying from it.  

 

On that subject, these trials need to start happening a lot faster.  I seriously don't see the hold up when many of the potential cures are drugs that are already out there, just need a prescription.  I'm sure there is resistance from the drug companies (who own the FDA) on them since they will be out of many billions per year if it is cured.

[Trey]

Those of you who are bemoaning the late onset of mutations after many years of very low PCRs (what do you even mean by that? Kinase mutations or something else?), tell me what percentage of CML patients on this discussion board has had this happen?  Maybe one or two out of hundreds of us.  Can it happen?  I have always said it is very unlikely yet not impossible.  If you want to live on the "not impossible" side of thinking, then you will live in fear, afraid of the dark, always looking under your bed and over your shoulder.  The rest of us will remain on the "very unlikely" side of thinking, which is borne out by facts and actual statistics, and live happy lives of enjoyment.