Diagnosed with mpl positive et in 2020. Which is apparently rare in an already rare disease.have since read online that mpl positive mutated et patients have 33% risk of developing mf.I’m a bit concerned as consultant never mentioned this.
Hi @Bmj63 a warm welcome to this online community, I hope you’re feeling okay. There may be other people in similar position on here who will respond to you but in the mean time I just wanted to add that if there is anything we can do to support you please feel free to get in touch with us on 0808 2080 888.
Don’t be afraid to get in touch with a member of your clinical team such as your consultant or your clinical nurse specialist/key worker if you have any questions or concerns at all, and so that you can discuss signs and symptoms to look out for, how they’re monitoring for any changes etc. You might find our booklet on MPNs helpful in formulating questions for your clinical team - Myeloproliferative-neoplasms-MPN-Blood-Cancer-UK-MPN-0315.6.pdf (shopify.com)
Take care and remember we’re on the end of the phone if we can support you.
Hi @Bmj63 a great big welcome, I am so glad that you have found us.
@Alice_BloodCancerUK has replied so well to you and I have a different type of blood cancer, but I just wanted to say that no matter what blood cancer we have we often seem to share the same fears, thoughts, feelings and questions.
I found that when I was diagnosed I entered this parallel universe of medical speak and it is so confusing.
I look forward to hearing more about you.
The main thing is that you look after yourself and keep posting.
Hello @Bmj63 - it is confusing and scary when you get a diagnosis and read some of the facts and figures that get quoted - I have ET too i am so called “triple negative” in that I don’t have any of the three mutations that often show for ET, as yet “unknown” - by way of comfort over the years since I have been diagnosed (15 odd years) I have seen quotes that say triple neg ET has a very higher risk of progression to MF and that triple neg ET is the best one to have with almost no risk of MF - the point of the story being a lot of percentages and quotes get said especially online and they can be inaccurate at best - as you say your consultant hasn’t said that, and our own consultants and the lovely support of BCUK and also MPN Voice are the good authorities to go with - to give reassurance and good information about your condition - all the best
So true @Jilly20 and @Bmj63.
Yes, be wary of some of the information you find on the internet.
I have another blood cancer and when I was diagnosed 17 yrs ago I read that I had a 5 - 10yr prognosis and I am still here and enjoying my life today!!!
We are so lucky to have Blood Cancer UK to inform us with reliable information.
I have also heard good things about MPN Voice.
We are here for you @Bmj63 and look after yourself.
The whole business of progression to MF seems pretty murky. I have the CALR 1 deletion, which MAY put me at the highest risk of progression according to some data, but have also heard that the form of MF that CALR1 deletion folk get is more easily treated. There is at least one good scientific paper on this, which I will try to dig out. Did not download when it appeared as “head in sand” feels more appropriate unless they can sort out my prostate!
I found when I was diagnosed that I got very little reliable information from medical professionals and had to go routing for things myself. Official sites gave me more of an idea of what I was dealing with and eventually I found this place and finally had people to share experiences with. I miss the in person Myeloma support group which used to meet at Guys Hospital before Covid though.
Hi @Franko I think in person support groups are so important and you are so lucky to have one you can get to.
I think there is also a place in the future for on line support groups so people from all over the UK can be connected.
I am in the same position as you newly diagnosed September this year with MPL more tests ongoing of ultrasound and bone marrow. So pleased to read these positive comments. Feel in a very surreal situation getting my head around hospital visits and blood tests and very grateful for the wonderful staff I have met and the care I have received. Hope all goes well with you.
I have ET and am JAK 2 +ve, I was diagnosed with ET 22 years ago, when they still didn’t classify it as a blood cancer, and before they found out about JAK2 - science progresses
When I was diagnosed, they said MPN(D) patients had the same life span as anyone else, now they say that’s only from the first 10 years of diagnosis, now they say you are 30% more likely to pop your clogs, if you have been diagnosed for more than 10 years, compared to the same age group not diagnosed.
but that means 70% won’t be more likely, and that some of those will live longer than the control group.
I am sure there will be a different study out next year.
I don’t waste my time worrying about what I can’t do anything about - it will get me early, or it won’t,
I’ll take my medication, keep up with research, keep “training” the locums in the local surgery … do what you can, but try not to worry about what you can’t control
It sounds easy, but I’ve had 22 years of practice at this, and I find it’s the best way for me.
Hi @Vitrish74 I am so glad that you have found us.
I have a different blood cancer, and I was diagnosed 17yrs ago, and as @heatherthomas says I personally have had 17 yrs of practice of getting to know myself and what is best for me, but I remember like it was yesterday that very surreal situation, I described it as feeling as if I was in a bubble with the world going on as usual around me.
I find hospital appointments very stressful and wearing, that waiting on results is horrible…
Yes, I have found the NHS care to be brilliant, too.
We are here to support each other and I look forward to hearing more from you.
The Blood Cancer UK website has a lot of information and details of their Support Line if you would like to talk to someone.
Look after yourself.