nature.com/articles/s41419-...
Very interesting, scroll down to impact on JAK2 mutation
Early days but exciting because Metformin easily available and well tolerated. I’m told by diabetic friend who is taking it that only side effect was initial flatulence!
Re side effects, more potential issues than my friend thinks.
diabetes.co.uk/diabetes-med...
However, been tried and tested on diabetics over a long time and plenty of users. If it’s efficacy is proven, then can be rolled out very quickly
Thank you Paul...
This is a really interesting article & there appears to be no direct 'conflict of interest' on the part of its authors etc.
Cheers
Steve
(Sydney)
I love hearing about things like this. The more options the better. I can’t tolerate Metformin but many people can and do and it’s very inexpensive.
Very interesting. Having a check up with my haem today will mention it. So much going on it really does give you more hope. Thanks Paul.
Hi Paul
Good luck with your Haematologist 👍 Please let us know how you get on 🤞
Kind regards
Di
X
Thanks for this, Paul. I’ve got an appointment at Guys in a couple of weeks to see about gettng tissue typed in case stem cell transplant is eventually an option ( I’m 68 with MF Inter-2 level). I’ll ask about metformin.
Hi Rachelthepotter. I'm 67 with high risk MF and felt at my age SCT was a non starter. My 2 brothers were tested approx 6 years ago but weren't a match and I didn't discuss going down the MUD road. I was in with my haem yesterday who was aware of Metformin but felt it was early days at the moment. He also mentioned SCT to me and said things had moved on since the last time I discussed it and I should speak to the specialist team. Was not expecting that I assumed I was way over the hill to be going down that road and it certainly gave me food for thought. My haem is in Dublin which is 3 1/2 hours away on the train so I see the haem in my local hosp for blood checks etc. I am extremely lucky with the health care I receive. IF I was to consider SCT it would be done in Dublin so I would be a long way from my family that so put me off initially but things are advancing now with my MF. I'll be be very interested to see how you get on and it goes without saying I wish you well. Clare Harrison along with other haems and Maz of course are hoping to run a Forum in Dublin in the hopefully near future.
Best wishes.
Pat
Pat
Can you please explain how you are catorgised as “high risk” MF? Is this down to genetic testing - I know some chromosome mutations are more aggressive than others.
Re SCT, I thought the cut off was 70 or in some cases 75, depending how healthy you are. Plus there are two levels of treatment, one not quite so effective but easier to tolerate. And your Hem is right, 7 years is a long time in this business and there have been major advances re finding suitable match and avoiding Graft Host rejection.
I hope when you meet the Transplant Team you will feel a bit more relaxed. Still a daunting risky procedure that will wipe out 6 -12 months of your life but hey, it is a cure!!! That’s some prize.
From what I’ve read on other Boards, the big dilemma is when to take the plunge. Consensus seems to be don’t leave it too late but tricky balancing act.
I’m meeting a geneticist on Thursday to ask about predictive testing and I believe he is involved with a Metformin Trial.
Best wishes
Paul
Hi Paul
There are standard prognostic scales that are used for categorizing risk levels for MF patients -and likely for other MPNs too, but as I have MF those are the ones I'm familiar with. The scale that was used MF is the DIPSS+ scale, which uses information from your age, whether you have a "bad" mutation, what your Hb level is, whether you have blasts in your blood, what your and whether you have whole-body symptoms.
You end up with a risk category (Low, Inter-1, Inter-2, and High) which can then be used to give you an estimate of median survival times (with all the usual caveats). I asked my local haematologist to plug my number into the DIPSS+ scale as soon as I was diagnosed. I came up as an Inter-2, which gave me some idea of what my survival time was likely to be. The Mayo clinic did the original research on factors which were related to prognosis in MF. There are calculators you can google for to work out your own number.
I was just checking to find a link to an article on this, when I came across the very latest version - the RDIPSS+ scale. It makes better use of recent genetic information. ash.confex.com/ash/2017/web...
So when I see the stem cell specialist at Guys in a couple of weeks to see where I stand, I can ask him to crunch my current numbers through the RDIPSS+ and see where we are.
Would like to hear how you get on with the metformin idea.
We have noted a couple of threads recently on the forum. Just a few comments below:
Fedratinib:
This drug was reported initially to be associated with risks of Wernickes encephalopathy. Recently Profs Harrison and Mesa reviewed the data which led to new data reducing these concerns.
The status of fedratinib is awaited from licensing authorities.
Concern about whether JAKAFI might accelerate new mutations?
A provocative article has been published on MPNforum. This reviews data showing that patients with mutations in genes other than JAK2 CALR MPL responses appear shorter and if patients develop new mutations on drug and stop the drug they do not live long.
However we have also seen that patients rarely develop new mutations, and have 2 large studies showing that JAKAFI prolongs life in patients with any mutation profile. Much other data is also consistent with patients having a better quality of life and longer life on JAKAFI.
Please bear in mind that the well written article is provocative but does not prove any risk of JAKAFI worsening disease. Do not suddenly stop taking your drug on the basis of this article.
Metformin
There has also been some speculation about whether adding metformin to ruxolitinib might be beneficial. This is on the basis of non human work - mice and cells in the lab only. It is exciting provisional data. This will probably be properly tested in a clinical trial in the future.
To be classified or not with the correct MPN
Waiting for lab results for jak2 mutation been 9 days heard it could be 3 weeks. Feel like I'm going crazy.
Anyone had problems with elevated Liver function tests while taking Hydroxycarbamide…. Would be pleased to get some information ….I have PV and my recent blood tests have shown that I have a high level of potassium could it be the hydroxycarbamide that is causing this. 
Does anyone with PRV suffer from red, swollen face (definitely can't be described as "ruddy complexion", more than that)
