Trials

[lizzziep]

I had a very interesting conversation yesterday with a specialist nurse from Blood Cancer UK.

I had been looking on their website and noticed they are involved with various trials, I

emailed a few details and they booked a phone call for yesterday.

We went through lots of details about my medical history etc and (long story short) I’ve just received details of three trials I may (or may not) be suitable for. There’s a letter to send to my haematologist with the various trial details, he will have to say if he thinks I’m suitable for any of them.

Anyone else interested have a look on the Blood Cancer UK website

Bloodcancer.org.uk/clinical-trials

Looks like there’s a lot of research into MPN’s at the moment

[Lyndjs]

Thank you for sharing lizzziep ,

I have thought about this too 🤔 please keep us updated.

I'm off to a MPN voice forum in Nottingham in August, and was going to ask there about trials etc.

Hope all goes well for you.

Lx

[lizzziep in reply to Lyndjs]

Thank you, I’ll update when I have any info

[Lyndjs in reply to lizzziep]

Thank you 🥰

[Spanelmad]

Thanks for the heads up! Let us know if you take up a offer.

[Dodders]

Hi, I took part in a trial of Pacritinib at the Christie Manchester under Prof Somerville in early 2018. I'm glad I took part. I came off the trial in the run up to my transplant. The drug did help with one of my symptoms, the night sweats, and I think it also had some benefit for the splenomegaly. Overall, despite the journey from Shrewsbury being a bit of a schlep, it was not at all a bad experience and all the staff were wonderful and caring. Wishing you all the very best for the future which ever path you take.

[lizzziep in reply to Dodders]

Thank you.

[ainslie]

if possible it maybe wise to run it by Clair Harrison, she will have all the inside info

[lizzziep]

From the information I’ve seen so far the trials are based at Guys, so I assume she has some input.

[hunter5582]

Thanks for posting and considering clinical trials. This is the only way the science will move forward and we will gain better options to treat MPNs.

[lizzziep]

I may not qualify but I won’t know until I ask! It will also depend on how much travelling there is and whether the cost of that would be covered.

The train fares to London are very high, so if it meant travelling there a lot the cost may be prohibitive. I wouldn’t drive there, the traffic is horrendous.

However I will update when I know anything.

[EPguy]

If it's public info (ok to share) can you say what the trials are?

[lizzziep]

I’ll check its ok to share the links, it looks like new drugs targeting CALR.