Last time I was speaking to my Hemo he told me that a test will be available in about 12 months that will identify all a MF patients mutations and will assist in predicting the progression of the illness. He said it should allow for him to predict how the illness will progress, risks and timing of the different stages and the optimal timing for a bone marrow transplant. As there is a direct relationship between the state of your health and the percentage of success, this test could be of great advantage. As the big risk for MF is acute leukemia which is basically untreatable in MF patients this may effect the decision making process very radically
Has anyone else heard about this test?
He didn't say and I didn't ask if the test was for all MPM illnesses.
There is currently a 31 panel Myeloid Test in the U.K. which identifies the poorer prognosis mutations (there are c. 6 of them incl ASXL1, SRSF2 and TP53) but these mutations are generally quite rare, at least early stage MF. This test is more frequently used in the USA and, as you say, poor mutations would steer towards STC at Int 1 Stage rather than Int 2.
Hopefully this test will soon be generally available on the NHS, at least for Int 1 MF.
Yes I am in in New Zealand, so as everywhere, funding is always an issue.
I know my blood samples for the confirmation of MF Calr were sent to the USA.
My Hemo is a very clever and of extremely high intelligence and I think still is the president of the Australasia College of Hemotologists so is very well inform. Due to his moral codes he works only in the public health system. I am very fortunate to have him and we went to primary school together. He got my share of brains as well🤔 Known his family most of my life. A real twist of fate!
Is it the EndLeukemia Mutation Panel? That’s what mine was labeled. I’ve done that for my PV. I’m young (32) and didn’t have a history of proven blood clots, but was highly symptomatic (itching; multi-day, strong headaches; visual fuzziness; etc.).
I think the panel results (JAK2, TET2, ASXL1+) and symptoms overrode my age/no clots in my doctor’s opinion, and I’ve been very successful on Pegasys. It’s a really helpful diagnostic tool, and that knowledge will come in handy if (let’s hope not) my blood gets weirder.
Hi Guy, that is interesting information. I am also in NZ and administrate an MPN group on FB. I wonder if you would mind naming your Haematologist, because as I am sure you are aware, there are very few in NZ who take a special interest in MPNs, and it is always good to know of Hematologists that we can refer to for second opinions.
Hi Cherrington, my Hemo is Dr Bart Baker at Palmerston North Hospital. Another one I had was Dr Ken Romeril who is based in Wellington and does both private practice at Wakefield Hospital Private Hospital in Wellington but I believe also consults at Wellington Public Hospital or at least did so. Ken did the original diagnosis. I found him very good as well. I am not on Facebook but follow this page regularly.
I have found Palmerston Nth Hospital to be nothing short of excellent with all my time with them and have good reason, from previous experience of friends who had cancer, to believe the team of Hemos and Oncologists there to be excellent in their level and delivery of care. Wakefield Hospital were great as well but of course is private so you have to pay.
It is critical to have faith in your specialist and follow their advise re exercise etc.
Bart didn't recommend it or discount it, but I have found the Keto Diet of significant benefit. He said he had never heard of any link between Keto and benefits for MF sufferers but since being on it, about 2 years, I feel extremely well and live a fully normal life and don't suffer any effects from the MF. I take one aspirin a day. If you want to know more please just let me know.
Thanks for passing that on, I have heard of Bart (good things), and think a couple in the FB group also see him.
One of the issues we have in NZ is that in the regions, ie Palmerston Nth, there is a shortage of Consultant Haematologists. Unfortunately, this means many of those with MPN's are not seeing a Consultant for assessment, and instead see a registrar, who may only be on rotation for 6 months - In other words, just passing through Haematology. Even though they work under the supervision of a Consultant, this is not ideal, and the source of great frustration for many.
One of the reasons we set up the page in NZ is to have a base for advocating for better treatment options in NZ. Ken Romeril (who is on the NZ page) and another Wellingtonian are currently working on getting Pegylated Interferon funded by Pharmac - unfortunately, this will be a long slow process, however, I am hopeful that with collective patient input, eventually Pegysus will be funded in NZ as it has been in Australia. An Important part of the advocacy process is to record how many of us are in NZ, so If you are not already registered with NZ Leukemia and Blood Cancer I would encourage you to think about it. MF is notifiable in NZ, however, PV & ET are not. Another advantage of registering is that they will keep you up to date with relevant talks from visiting MPN experts, that you may wish to attend. Last year we were very lucky to have Reuben Mesa speak to us in Wellington and earlier this year we had Andrew Schorr from Patient Power - both really encouraging and informative events.
The Keto diet sounds interesting and I am glad that you are feeling so well on it. It makes a lot of sense to reduce foods that cause inflammation and I am a great advocate of doing what we can to help ourselves.
Best wishes and keep in touch:))))
Hi Cherrington
I will look at the NZ Leukemia and Blood Cancer group. Yes funding is always an issue in NZ as elsewhere in the World.
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Hi I’m new to the forum - ET JAK 2 Negative - waiting on the results for a second BMB to exclude Pre - Fibrotic MF 
AXSL MUTATION 
ET & mild MF (negative for all gene mutations)
