Q: Anybody monitoring patient forums/boards for potential info on the MDS and/or MF trials? Facebook groups, Patient Power, MPN Forum, etc?
FYI....I suspect our next (Q3) quarterly earning call will coincide with ASH Abstracts being available. I'm hoping/expecting to see pre-clinical lymphoma results. My mom died of B-Cell lymphoma in 2015, so I'm hoping for a new/better treatment in that space.
FYI....I'm also hoping Dr. Mascarenhas enrolls a few Multiple Myeloma patients for combo treatment with Imet + Venetoclax. I believe he can exercise such discretion since it's an IST. You might recall Dr. Tefferi enrolling a handful of "other" patients within the Mayo IST. In fact, if memory serves, I believe he enrolled a few MDS patients even though the IST was for MF patients.
MDS Patient Forums (Monitoring?)
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biopearl123
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Re: MDS Patient Forums (Monitoring?)
HI, nothing new I have seen from the patient forum area. I do wish they would share experiences of being in the study even if on placebo. A la Irish Trader. Re lymphoma, I suspect you are quite correct and the forum in which we will see further info with be ASH abstract. I am still holding out hope that although guidance has been given for Jan TLR, that some data will be available for ASH in the MDS study. Honestly just top line data should be easy to get at since the study stops in Oct. TLR will rate a high profile presentation maybe a plenary session if they have something to present by them. Despite the delays related to COVID and an initial extended study timeline, the study was shortened by 3 months and I am not sure TLR release date carved in stone. Now that would made for some ASH excitement. Underpromise and overdeliver. YOU CAN DO IT, thus saith Kmall. As to MM. Recall the old study from Dr. Matsui at Johns Hopkins which showed a reduction in circulating CSC but did not even warrant a presentation at the meeting and was published in an ASH “also ran” collection that got no attention. Your idea is wonderful and this kind of combo research should be very attractive. I think Dr. Mascarenhas is quite focused on higher risk MF/AML for this study and I would be very surprised if he snuck other diseases in there not planned for in the protocol. Dr. Tefferi was a bit of a maverick and he had a broad range of patients in his study. I don’t think Dr. M will follow suit. We have seen some tantalizing patent data that mentions MM as a potential target. Perhaps if you wouldn’t mind you could summarize that for us. Also hayflicklim disappeared after making some interesting comments. If you are able to summarize the state of the art as it pertains to oral telomerase inhibitors and the associated IP, that would be great. Best Wishes to all, bp
Re: MDS Patient Forums (Monitoring?)
@Hoosier Investor - first off I would like to send condolences for losing your mother. Never easy, but a malignant blood disorder is a terrible diagnosis for most patients. I too lost a loved one, and his bone marrow cancer signaled the beginning of the end of a very long battle. We both knew that the odds of survival decreased significantly at that time.
Patient forums are an excellent way of tracking and monitoring progress of Clinical Trials in various countries. Back in 2018 I spent the better part of 2-3 months sending emails and posts on various patient forums globally. It ended up being a minor monumental task, which kind of snowballed, dubbed Operation KMALL.....a spoof on Operation Desert Storm.....maybe spoof is the wrong term?, because I viewed it, and still do....dealing with cancer as a patient advocate or caregiver, which is what I inadvertently became when my friend was dying, like going to war.
http://imetelchat.imetelstat.eu/imetelc ... ?f=1&t=861
Anyway, my goal was to go directly to the patient groups and inform them of the upcoming P3 IMerge MDS Clinical Trial which was slated to begin later that year. Facebook was one of those avenues I persued, and if I remember correctly, I ended up joining quite a few. I didn't receive even one negative response from this campaign and many, including a top physician with possible Clinical Trial locations to utilize were refered directly to Geron. One of the strongest and most diligent organizations I came across was BloodwiseUK. They have since changed names to Blood Cancer UK.....but the director at the time was phenomenal. They offered me a full page "blog" if you will on their website. Even today, through the new organization, Blood Cancer UK, they have offered patients updated information on the progress of Imetelstat over these past few years.
https://mdspatientsupport.org.uk/imetel ... owitworks/
They have significant influence with the MHRA in the UK. They were very enthusiastic and receptive to be a part of the P3 IMerge MDS Clinical Trial. I'd like to think that if my first correspondence there even informed one patient about Imetelstat and it was able to make a difference, then my 800+ emails and posts weren't in vain. In the end it all comes down to theses patients, willing to sacrifice conventional treatment and go out on a limb with an unapproved FIC Drug. A rather frightful proposition, I would imagine if I was in those shoes. If P3 results even mirror P2 then we should be hearing some success stories in the very near future. -Kmall
Patient forums are an excellent way of tracking and monitoring progress of Clinical Trials in various countries. Back in 2018 I spent the better part of 2-3 months sending emails and posts on various patient forums globally. It ended up being a minor monumental task, which kind of snowballed, dubbed Operation KMALL.....a spoof on Operation Desert Storm.....maybe spoof is the wrong term?, because I viewed it, and still do....dealing with cancer as a patient advocate or caregiver, which is what I inadvertently became when my friend was dying, like going to war.
http://imetelchat.imetelstat.eu/imetelc ... ?f=1&t=861
Anyway, my goal was to go directly to the patient groups and inform them of the upcoming P3 IMerge MDS Clinical Trial which was slated to begin later that year. Facebook was one of those avenues I persued, and if I remember correctly, I ended up joining quite a few. I didn't receive even one negative response from this campaign and many, including a top physician with possible Clinical Trial locations to utilize were refered directly to Geron. One of the strongest and most diligent organizations I came across was BloodwiseUK. They have since changed names to Blood Cancer UK.....but the director at the time was phenomenal. They offered me a full page "blog" if you will on their website. Even today, through the new organization, Blood Cancer UK, they have offered patients updated information on the progress of Imetelstat over these past few years.
https://mdspatientsupport.org.uk/imetel ... owitworks/
They have significant influence with the MHRA in the UK. They were very enthusiastic and receptive to be a part of the P3 IMerge MDS Clinical Trial. I'd like to think that if my first correspondence there even informed one patient about Imetelstat and it was able to make a difference, then my 800+ emails and posts weren't in vain. In the end it all comes down to theses patients, willing to sacrifice conventional treatment and go out on a limb with an unapproved FIC Drug. A rather frightful proposition, I would imagine if I was in those shoes. If P3 results even mirror P2 then we should be hearing some success stories in the very near future. -Kmall