20 replies to this topic

[scuba]

Attached is Dr. Cortes' slide deck used during his presentation today.

 

Of interest to me was the slide on ABL001 (page 22; two slides per page)

 

 Cortes CML LLS for 092215_modified_4posting2spp.pdf   1.18MB   134 downloads.

[Pin]

Thanks Scuba, very interesting! The ABL001 is really interesting - the presentation link in the references didn't work, but will be great to hear more about this as it progresses.

 

Has anyone read much about the renal dysfunction? From the slides it appears more common in imatinib. Whilst the differences are statistically significant between medications, I don't really know the clinical implications of having a GFR of 80 vs. 70 anyway...

 

Anyone know what the slide about "making treatment discontinuation more palatable" was about? To whom - patients or specialists?

 

Thanks again!!

[tiredblood]

It was really good.  I listened at work and got busy during the part I wanted to hear most-- dosage reduction and cessation.  I think it will be posted to the site in October.

[nsharavana]

dear scuba, many thanks for posting the wonderful presentation by dr cortes.i am happy to inform that dr cortes is a very kind man and is gracious and magnanimous enough to correspond and advice a distant patient like me on e-mail..may his tribe increase!!!

 

i am a CML patient since 2003 from india .i am in MR 4 presently on international scale..i am keen to share my own personal experiences of my 13 year long CML fight.

i was on 800 mg glivec for long time being a slow responder..am presently on deescalated 400 mg dose since past one year..i am also keen to attempt a TFR but have never been PCRU consistently..i am considering adding low dose

interferon for 12 months.

 

best wishes to all you fellow fighters..we will prevail in the end and win..we need to have faith in modern science and research and it is just a matter of time before a true cure is discovered.

 

sherry from india

[rct]

Anyone know what the slide about "making treatment discontinuation more palatable" was about? To whom - patients or specialists?

 

Big Pharma maybe?  Just a guess.

 

rct

[scuba]

Big Pharma maybe?  Just a guess.

 

rct

 

Thanks Scuba, very interesting! The ABL001 is really interesting - the presentation link in the references didn't work, but will be great to hear more about this as it progresses.

 

Has anyone read much about the renal dysfunction? From the slides it appears more common in imatinib. Whilst the differences are statistically significant between medications, I don't really know the clinical implications of having a GFR of 80 vs. 70 anyway...

 

Anyone know what the slide about "making treatment discontinuation more palatable" was about? To whom - patients or specialists?

 

Thanks again!!

 

In my conversations with Dr. Cortes as well as listening to his presentation - he is referring to discontinuation being acceptable ("palatable") to his profession as something that can be recommended by doctors. There is enough data to support the idea that stopping treatment will continue long term remission in a cohort of patients meeting the criteria he listed. And for those that don't succeed they can safely resume therapy. He also noted that many of his patients that are perfect candidates to stop choose not to stop.

 

In my own case, I did not fit the criteria for stopping, but he nevertheless supported me with a personal trial with careful monitoring so we can both learn. To my surprise, I found out I am not alone - he has other patients doing what I am doing (i.e. stopping even though they don't fit the cessation requirements). Many of them, however, had to stop (i.e. not voluntary like mine) and were pleasantly surprised to see they can maintain remission.

 

(note: and for those who lost remission, he had no cases where they progressed. They resumed treatment and became MMR or PCRU as before)

Edited by scuba, 23 September 2015 - 02:18 PM.

[Kali]

Thank you for this great information!

[winespritzer]

_{Dear Scuba,}

_{I enjoyed the presentation and all the hope it gave us.}

_BUT

_{Can you help me with the Cumulative Relative Survival by Time Period slide?}

_{From 2001 to 2009, am I reading that age 65 -74 had a 20% survival rate after 8 years? I know Dr. Cortes said all the survival rates had increased.}

 

_{Thank you very much.  I think I saw an e-mail where I can also write to him.}

_{Wish I were in Texas so he could be my doctor.}

_Winespritzer

[scuba]

_{Dear Scuba,}

_{I enjoyed the presentation and all the hope it gave us.}

_BUT

_{Can you help me with the Cumulative Relative Survival by Time Period slide?}

_{From 2001 to 2009, am I reading that age 65 -74 had a 20% survival rate after 8 years?}

_{I know Dr. Cortes said all the survival rates had increased.}

 

_{Thank you very much.  I think I saw an e-mail where I can also write to him.}

_{Wish I were in Texas so he could be my doctor.}

_Winespritzer

 

Survival rates have increased dramatically since 2009 on a statistical basis. 2001 was just the beginning of Gleevec treatment. Many patients were not surviving five years let alone eight. This slide is misleading by stopping at 2009. But if you look at all three time periods together and the shape of the curves, you can get some insight to how the slopes are shifting to much greater survivals - and this doesn't even include the second generation TKI's which were prescribed generally until 2010 or so (FDA approval).

 

Also - keep in mind that older patients (>65) can have mortality other than by CML but their passing would be included in the statistics for CML deaths. This is why we never get to 100% progression free survival. It would be interesting to note when a patient who has CML dies, what their status was at time of passing (i.e. chronic phase, PCRU? MMR? CCyR?- or blast crisis). In my conversations with Dr. Cortes, patients who achieve CCyR successfully will die of something else - not CML.

[winespritzer]

Thanks Scuba. I'm on Sprycel...since 1/14. My onc said I would die from something other than CML, because I was almost MMR on 1/15 (.11) and .045, 3 months later. My dream was to get off or reduce the sprycel. So when I read the slide, I figured...whatever! I thought maybe the end of the road was close by.

I'm an old kid at 71! Still ordering my husband around!!!

I read and follow all your posts and wish you well. I have learned a ton of info.
Thanks,
Winespritzer

[Cool Hand Leuk]

Hi, is there any chance the audio is available somewhere?

[scuba]

Hi, is there any chance the audio is available somewhere?

 

I believe the audio will be available in October on the LLS website. 

[tiredblood]

I believe the audio will be available in October on the LLS website. 

 

It is on the website now. I listened to it last night.  I had read somewhere October too, but I guess they went ahead and posted it.

 

http://www.lls.org/p...yeloid-leukemia

[tiredblood]

_{Winespritzer to Scuba>>>Wish I were in Texas so he could be my doctor.}

 

 

Scuba, we have doctor envy.  You're like our CML expert ambassador.

[scuba]

 

_{Winespritzer to Scuba>>>Wish I were in Texas so he could be my doctor.}

 

 

Scuba, we have doctor envy.  You're like our CML expert ambassador.

 

 

Trey is our CML expert especially when it comes to clinical review and reporting on the "official" medical establishments approach and treatment of CML. Anyone new to CML should first read Trey's CML blog to get oriented and begin learning. All of the reports one receives from various labs are explained in plain language in Trey's blog and his posts here. Practicing Oncologists trying to treat CML patients would do well to read his blogs as well. They might learn something.

 

I am an ambassador of sorts for alternative approaches to CML 'in addition to clinically accepted treatment'. I have found in Dr. Cortes. an expert in CML as well as other bone marrow disorders, who is a research clinician who collaborates with me and is willing to observe my non-sanctioned approach. It's been great.

[tiredblood]

Trey is our CML expert especially when it comes to clinical review and reporting on the "official" medical establishments approach and treatment of CML. Anyone new to CML should first read Trey's CML blog to get oriented and begin learning. All of the reports one receives from various labs are explained in plain language in Trey's blog and his posts here. Practicing Oncologists trying to treat CML patients would do well to read his blogs as well. They might learn something.

 

I am an ambassador of sorts for alternative approaches to CML 'in addition to clinically accepted treatment'. I have found in Dr. Cortes. an expert in CML as well as other bone marrow disorders, who is a research clinician who collaborates with me and is willing to observe my non-sanctioned approach. It's been great.

 

I guess liaison would have been a more appropriate word.  I'm thankful for the info you glean from Dr. Cortes and share with us, and as always, thankful for Trey's expertise.

[winespritzer]

I still wish I could have Dr Cortes for my doctor.
And with you and Trey on the team, how could anyone go wrong?
Almost want to go to N.Y. when Dr Cortes does Light the Night.
A genuine thank you,
Winespritzer

[Pin]

In my conversations with Dr. Cortes as well as listening to his presentation - he is referring to discontinuation being acceptable ("palatable") to his profession as something that can be recommended by doctors. There is enough data to support the idea that stopping treatment will continue long term remission in a cohort of patients meeting the criteria he listed. And for those that don't succeed they can safely resume therapy. He also noted that many of his patients that are perfect candidates to stop choose not to stop.

 

Ah - that makes a lot of sense - I think it will take time to change attitudes particularly for doctors, which I really do understand. Essentially, this disease has gone from causing high mortality, to very low - in a very short space of time. Taking people off this life-saving treatment would seem a little daft at first!

[pammartin]

My former oncologist refused to even consider stopping TKI for many reason.  He also said 90% or more loose response with in the first year. Not only are his ideas soon to be outdated, his facts are skewed by his personal opinions.  I believe it is as Pin wrote, 

 

'I think it will take time to change attitudes particularly for doctors, which I really do understand. Essentially, this disease has gone from causing high mortality, to very low - in a very short space of time. Taking people off this life-saving treatment would seem a little daft at first!'

 

I understand the concept but I believe we are approaching a break through for how this disease is initially treated as well as long term treatment options. 

[minu]

Thanks, v