Pvr morning into myolofibrosis

[tracey1003]

I went to the haemo for my 3 monthly check and he gave me a timeline of 3 - 4 years then it turns to myelo fibrosis and then 2-5years for death and he said we needed to step up treatment. I am just on Aspirin and 3 monthly phlebotomy and now its monthly. He also told me to stop drinking so much water. When I rang back the next day to see if this is a definate timeline for me he said nothing is definate. I had a bone marrow biopsy no mf no indication in bloods went to see my gp and she said no change in blood tests slight rise in platelets 640 hematocrit is between 40 and 45. He said I’m at a higher risk because I have haemochrotosis. Some opinions would be wonderful

Thankyou

[mhos61]

Hi Tracey,

do you have a specialist nurse who can explain in understandable terms what seems to have been a confusing consultation for you?

Firstly, I would want to know what is it that has indicatcated to your Consultant that your PV is going to morph into mylofibrosis in 3-4 years?

You deserve clarity.

Wishing you well

Mary x

[tracey1003 in reply to mhos61]

Thankyou so much he said going on statistics but nothing is definate so I’m going to get a second opinion. Thankyou

[Ebot]

A second opinion sounds well worth it! I’d certainly want to challenge this merchant of doom and gloom! Is he an MPN specialist? I do hope you get a more satisfactory consultation and discussion. Sending all best wishes.

[Cmg5935]

Hi Tracey,

I’m shocked your dr could be so definite. My Specialist at Columbia in NY made it very clear that with MPNs It’s impossible to predict, because everything varies from patient to patient regarding desease progression. Also, that because existing studies are so limited in their patient case studies there is no givens regarding anything with our MPNs

Based on a study of 248 pts My Having no gene mutations will be at a higher risk of developing leukemia, but she stressed that the study was limited with only a handful of the participants having no gene mutation. That some did progress but others did not and progression can be 5-10-20 or more years. We are each unique

I definitely think you need a second opinion. Very sorry if your dr alarmed you.

Best

Christina

[Bridie123]

You're not in MK are you? My first hematologist gave me a nervous break down! Change immediately and forget what was said and start again.

Regards Carole 🤗

[tracey1003 in reply to Bridie123]

No I’m in Australia I have gone to my gp to get a referral to an mpn specialist so hopefully that will give me some clarity yes nervous breakdown me to scary stuff .

[Mazcd Partner MPNVoice]

Hi Tracey, the medical team have said, have you been told that you now have MF, or is it just that your doctor has said it will morph into MF?

They have also said that you could need more venesections because of haemachromatosis.

Best wishes, Maz

[tracey1003 in reply to Mazcd]

My haemo said it could morph into mf and it is usually 3years and then when it turns there’s a small window of 🤤2yrs before death because of the haemochromotosis being I have 2 bad genes

[beetle]

I urge you to get a second opinion! If you read posts on here you will find out how differently our MPNs affect each of us. Your doctor would have needed a crystal ball to make the statements he made to you! Many people go on for many many years with no major problems and during the years you have ahead of you who knows what advances current research and drug development will bring? I am very sorry that your doctor has alarmed you with such statements which he cannot possibly know to be accurate for you. Do some wider reading - MPNVoice is a good place to start - and you might gain some reassurance. In the meantime also request to see an MPN specialist. Your GP should be able to refer you to one.

Very best wishes, Jan (in my 25th MPN year!)

[RobinBrum]

I think this is appalling. We're all staggering around in a fog of uncertainty, trying to come to terms with what's going in in our bodies; it's never easy. The last thing you needed was for your haem/gp to go 'by the book', or worse, simply estimate what's might happen to you. I had the same thing - once - and while I can't blame our overworked NHS experts, I am really angry that they now have so little time to properly analyse what might be going on. So grasp the nettle: ask questions; do some research; come informed; bring a friend for support. Don't let bald statements like this just be thrown at you - get an explanation. If you can't get it, ask for a second opinion, this time from the experts.

[tracey1003 in reply to RobinBrum]

Thankyou so much you have no idea how much I appreciate all these comments they are like my bible im so. Scared thank god I have all of my mpn warriors from all over the world thankyou

[Angelinagaffer]

Breathe and breathe again. Calm, try not to panic, best wishes and good luckxx thinking of youxx

[katiewalsh]

Hi. I’m not in the U.K. and 4 years ago an MPN “specialist” told me I had about 8 years to live. And I had ET jak2+, with just a tiny bit of scaring in my bone marrow. A few months later I was able to see one of the top experts in the country who said I will probably die from something other than my MPN because what I have isn’t bad. So try and relax and realize that this doc is purely guessing. Eventually you’ll be dealing with someone who actually knows MPNs. If its hard to ignore what that doc said just picture him wearing a clown suit and a dunce hat and write us another post saying you need some more bolstering up. Take care. Katie

[tracey1003 in reply to katiewalsh]

So true I got to see a specialist and he looked at all my bloods and my bone marrow and he said the same thing. Thank you so much for telling me but it’s definitely reassuring it’s a crazy ride with this disease for sure the ups and downs xx take care be well