Thoughts on MAJIK trial outcomes

[Ovingite]

First of all, thanks to Magg for posting the ET paper by Prof Harrison.

As a decidedly non-expert in the field of medical terminology, it has taken me some time to plough through it (time well spent) and extract the parts that are relevant to me, so I thought I would share my notes and seek comments on whether they are in the right ball park.

As context, I am 73 with ET JAK+ and have been on hydroxycarbomide (HC) for about 6 years. Having initially struggled with severe fatigue initially, presumably whilst I adapted to HC, I am now stable (it's probably pushing it to say 'normal'!) and on a dosage of 6500mg / 13 tablets pw.

What I took from the paper, from a personal perspective, was:

1. Of the drugs available, HC provides the best outlook for ET patients for those able to tolerate it. (that was a surprise to me as i had thought of HC as the cheap and old school solution)

2. ~20% of ET patients become resistant / intolerant of HC - therefore the vast majority (80%)do not

3. Resistant / intolerant patients have an increased risk of thrombosis, hemorrhage and disease progression / transformation to PET-MF / AML (although I could not find / understand any quantification to indicate the extent of this risk)

4. Ruxolitinib is not superior to other second-line treatments for ET

I would appreciate your thoughts

John

[Pounds11]

Thank you for this summary. How did you get the whole report? I only could find a few paragraphs and didn’t know how to get in from there. I’m 77 ET jak2. On 5 hydroxy/week. My doc at Stanford says under 600 ok. I’m currently at 460. Just had a hip replacement so hopefully things settled out by next blood work. Again thank you. Marti

[Ovingite in reply to Pounds11]

Hi Marti,

To be honest, I'm not sure how I got to the full article!

I just went searching through various links and happened upon it. However I did copy the text into a document which I would be happy to send to you if you give me your email address

Cheers

John

[havashan in reply to Pounds11]

Would you be good enough to also send the article to me as I was unable to find more than an abstract. Havashan.

[Ovingite in reply to havashan]

Yes if you give me your email address

[havashan in reply to Ovingite]

[e-mail]. Thank you I have ET and have been using Pegasys so I am very interested in the article

[Ovingite in reply to havashan]

It is not possible to attach documents to messages on this forum, so the only way I can send the document to you is via your personal emailJohn

[mhos61]

Hi John.

Do you have a link to the study that you can post? I would be interested to read the outcome, if not I’ll pm you my email address.

Hope you’re doing well!

[Pounds11 in reply to mhos61]

hi John. My email is [e-mail]. Thank you so much. Marti

[Ovingite in reply to mhos61]

Hi Mary,Good to hear from you. Please pm me with your email address and I will send you the document. I don't have a link to the full paper

All the best

John

[mhos61 in reply to Ovingite]

Thanks John, for forwarding on the attachment, but I haven’t been able to access it for some reason; however, I did do a bit of looking for the article. Unfortunately, I can only get an abstract of the article, and ‘mags’ original link, which has slightly more. I can’t see any discussion in either of these about hydrea or any treatments though.

You must have had access to the full article at some stage…

Cheers!