Imetelstat Users?

[TimGS]

Hi All,

I have Myelofibrosis and have been taking Jakavi for about 3 years, and it has been pretty successful in suppressing my symptoms. Unfortunately my symptoms are slowly returning, my spleen has enlarged to 215mm and a bone marrow biopsy has shown that the fibrosis is now pretty advanced.

I have been offered the chance to go on a trial for Imetelstat here in Brisbane, Australia, but I've been told that I'd have to taper off the Jakavi over 5 weeks, then stop altogether for a further 2 weeks before starting the trial if my bloods are still OK.

My dilemma is that I don't know the degree of effectiveness of the Imetelstat, and would almost certainly have to suffer my original bad symptoms when I stop using Jakavi.

Does anyone please have any experience with Imetelstat, and if so, please share that with me so that I can make a better-informed decision as to the next step.

Thanks so much in anticipation,

Tim

[Gipsy123]

Dear Tim, I hadn’t heard of Imetelstat, so I googled it. pubmed.ncbi.nlm.nih.gov/257...

Looks fantastic. I agree coming off Rux, even slowly, is a hard thing to contemplate: any chance of low dose steroids/ thalidomide anything else to ease the symptoms while the wash out takes place?

I’ve been on ruxolitinib for 6/7 years now, and eventually, I’ve been told by haematologist, , it stops working. So the disease modifying effects of Imetelstat look very promising. Do keep us informed.

Rachel

[TimGS in reply to Gipsy123]

Hi Rachel, thanks for your interest.

Yes, it looks extremely promising...just a pity it hadn't been developed earlier for us, but then again we've been fortunate to have been around to benefit from Rux.

I haven't asked the trial Dr about other drugs to help ameliorate the symptoms yet but am aiming to do so when next in contact.

Imetelstat sounds very exciting and I will certainly keep you informed.

Good luck and Happy Christmas.

Tim

[Scaredy_cat in reply to TimGS]

Also check what kind of trial. Is it one where there's a chance you'll be in a section that just has a dummy pill

[TimGS in reply to Scaredy_cat]

Hi Scaredy_cat,

Thanks, done that. 2/3 go on the new trial drug (and they tell me I will be in that group), and 1/3 go on alternate drugs to try when Jakavi is failing.

Thanks for your interest.

[DJK12 in reply to TimGS]

That's great you are getting a chance with a trial and hope the period coming off ruxolitinib isn't too rough. I'm in a similar position in that my spleen is 200mm. I had a splenic infarct in the summer and the ruxolitinib dose was doubled but it looks as if it is not bringing it down and the night sweats are starting up again, thankfully not every night. Fedratinib has been mentioned as an alternative though momelotinib looks the best for anaemia problems ( I've also been on long term epo injections) but as far as I know it's not available in the UK. Do you recall what the alternative drugs were if you hadn't been chosen for Imetelstat?

[TimGS in reply to DJK12]

Hi,

Yes, I'm very fortunate. If you google imetelstat you will find info on the locations where Phase 3 trials are being undertaken. As its a world-wide trial I'd be very surprised if the UK is not participating. Look on Geron.com as they are the drug company.

I'm sorry but I didn't ask them about the alternative drugs, but they're likely the next best approved line of defence when Jakavi stops being effective.

All the best of luck and Happy Christmas.

[DJK12 in reply to TimGS]

Thank you very much for that link which is very interesting and helpful. No hospitals seem to be recruiting in Scotland. In fact compared to other countries there are surprisingly few in the UK, but I will ask my consultant about it. No harm trying.Good luck with your trial and Happy Christmas.

[TimGS in reply to DJK12]

My pleasure and good luck to you. Cheers..