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Hello friends - see the link below some really interesting slides by Dr Cortes about CML, results of various studies and also new drugs 

 

https://www.primeoncology.org/app/uploads/hematology-updates-2018-slides...

My head boggles.  I would love to have sat through that presentation.  That is Scuba's doctor.

 

Stephanie

Thank you so much for this - I still firmly believe that someday a definitive CURE will be found.

Stay strong everyone!

Martin

Thanks for posting the report from Dr. Cortes.

It looks like his report says that there is 75% relapse when people try cessation from their TKI unless they have maintained a 4.5 level of response for several years. Then the odds get better.

I just looked at information from ASH 2018 and read where they are saying there is about a 40-50% success rate for treatment free remission if a deep response has been consistent for 2 years or more.

Does anyone have insight or information about this? Thanks!

 

Hi Kali

I agree with your interpretation of the report - it looks like the best chance of success is after maintaining a log 4.5 response for longer than 64 months.  This is really interesting to me - I wonder whether people have been trying cessation too early?  If I ever get there, I'll be sure to wait 5 years before trying to stop.

The other fascinating take-away I took from reading that presentation is that it looks like a special group of people have been able to take nilotinib only once daily (I think that's what "QD" means) and still maintain a good response?  If that's true, it's a game-changer for nilotinib!

Best wishes

Martin

Hi Martin!

i have been in Sprycel for 4.4 years and it has done well too even on reduced dose of 50 mgm. I have maintained undetectable with a couple of very small blips for 3.4 years and prior to that was MMR and lower throughout my first year on the drug. But now with conflicting information about TFR, I am rethinking whether it is time to try going without the drug and do monthly testing or wait until I have 5 years or longer before trying.

I am always cheering on those who are trying TFR and hoping they do well.

I forgot to mention I have now had a really bad pleural effusion with complications and am temporarily off Sprycel and was hoping to see if I could try TFR. I may need to stick with 20 mgm Sprycel to get in more time with undetectable like the Cortes report shows for greater chance of success with TFR.

Friends - see the link below about combination therapy in MD Anderson that showed promise in eradicating the lukemic stem cell (potentially cure CML). This article was posted in 2016 but I wonder why there haven’t been any human trials yet. I recently read another paper published in 2018 saying that a trial of combining 50 mg of Dasatinib with Venetoclax have been planned. We should all email MD Anderson and ask them to progress this trial as soon as possible. 

I would be willing to travel to Houston and participate in this trial and even fund part of it if required to move things quickly 

https://www.mdanderson.org/newsroom/combination-therapy-.h00-159069501.html

Thank you for sharing this additional information! It is helpful to read up on these things to be well informed when we talk with our doctors.

This is really interesting.

I've found this details: https://clinicaltrials.gov/ct2/show/NCT02689440

"Dasatinib and Venetoclax in Treating Patients With Philadelphia Chromosome Positive or BCR-ABL1 Positive Early Chronic Phase Chronic Myelogenous Leukemia"

Actual Study Start Date  : February 19, 2016
Estimated Primary Completion Date  : February 1, 2019
Estimated Study Completion Date  : February 1, 2019

So maybe soon we will have some news on results.

 

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Chris

I am the probably the 3rd person in the world to go on Venetoclax for CML but I am off the trial. I am on 100mg Sprycel and 50mg Venetoclax. I had to come off V due to allergic  reaction causing eosinophilia but I am giving it another try. 

Can you tell us more how long were you on the combination ( Dasatinib and Venetoclax) trial. Did your pcr drop ? Are u treated in the US ? 

I am close to MR4 after 6 month, been on and off Venetoclax. hard to say until I up the dose. 

the important thing is that at 50mg, I don’t feel any side effect. 

Which hospital is offering this trial ? Is it in US or UK ? 

 MD anderson in Houston is the only place offering this as a trial.

No trial in my case..me and doc decided we should give it a try based on early clinical results.I live in a free country where there is not much government intrusion into these matters.