Good article on Pacritinib

[Paul123456]

curetoday.com/articles/pacr...

[eire]

This is an amazing article Paul. I have advanced MF the Jakafi I take is not reducing my spleen. It may be slowing it's growth so I won't stop taking it. I have a very poor prognosis but will forward this article to my haem tomorrow. Many many thanks for posting all the articles, this one and previous ones.

Pat

[Paul123456 in reply to eire]

Pat

Sorry to hear your MF now advanced. My limited understanding is that Ruxo a marvellous drug but can’t be used if Platelets too low. Plus some people get a much better response than others and for some people it only works for several years.

Pacritinib appears to fill a critical gap, more trials required to determine whether it’s a first or second line treatment.

Are you considering a SCT? Have you been tested for ASXL1 chromosome etc so that can properly access your risk profile?

Best wishes Paul

[eire in reply to Paul123456]

Not suitable for SCT and at my grand old age of 67 wouldn't be too keen!!! Also I would have to have it done in Dublin which is over 3 hours from where I live so not many family visits. Anyway not an option but of course would go along that route if the prognosis was good. ( says she knowing I can't go down that road!!!!!!) ASXL 1 has never been mentioned to me but when I go to Dublin end of June I will definitely ask. I'm going to forward your article to my haem tomorrow so you never know I may get a call to go into see her - fingers crossed. I'm very lucky as have a fairly good quality of life I'm doing all my own decorating and other than my big fat tum feel ok. Very few transfusions just 2 per year have regular check ups in my local hospital so all in all feel very lucky - all things considered!!!!!

Can't thank-you enough for all your research and sharing the information. It's not an easy road for any of us especially as we don't personally know anyone with MPN's we're such a special bunch!!!!

Pat

[Paul123456 in reply to eire]

Pat

Thanks for reply. Aside from distance, can I please ask why you are not suitable for SCT. You sound pretty fit and healthy and 67 is below the usual 70 cut off. Some Centres successfully transplant at 75 although I assume need to be in very good health.

Also are you JAK2 + and CALR +?

Best wishes Paul

[eire in reply to Paul123456]

My 2 brothers were tested for potential doners but weren't a match. This was approx 7 years ago and I was so fit and healthy didn't want to go down the MUD. I did mention it again last year but wasn't told why I was unsuitable and I didn't ask!!!! I've never asked about my JAK or CALR compared to so many people on this forum I think I'm a bit of a bury the head in the sand it'll all go away!!!!! Now of course it's become more serious and the fight is on. I emailed my haem but when I tested the link before I sent the email it wouldn't work. I copied and pasted but it just wouldn't work for me - any ideas. I have to say I have total confidence in my haem and I would imagine she would be aware of the article. If I can't get it to work I'll just ask her about the pacritinib. I did speak to her about this drug last year and she consulted with the prof in London and they were both in agreement it wouldn't benefit me. Again I didn't ask why but I'm definitely going to be more aware from now on!!!!

Thanks again Paul.

[Paul123456 in reply to eire]

Pat

I know how you feel about ‘head in the sand’! That’s how I was - best way not to worry excessively and get on with your life. However since becoming more proactive I’m at least feeling a bit more in control.

My research has indicated that I’m a slightly higher progression risk than I thought but despite this I feel more upbeat, in part because of all the promising research and in part because I now have a strategy!

I hope your next visit to Hem goes well.

Best wishes

Paul

[beetle]

Thank you for posting this Paul. I am hoping to enrol in this trial if they can get it set up closer to home for me. That is definitely on the cards but I might have to wait a bit. I’ve been on Rux for nearly 5 years and now have pancytopaenia. I really could use a reduction in symptoms too! I am hoping for spleen U/S soon as I can feel that my spleen has enlarged also