NO REAL REASON FOR MDS/MPN

[MaggieSylvie]

Hi everyone, since my diagnosis in June 2019 I have assumed that I had a gene mutation that was causing this condition and kept forgetting to ask. Today I had a phone consultation and remembered to ask. Apparently I don't have any gene mutation and the erythropoietin has never been considered to be the culprit. My bloods remain stable, despite haem continuing down a few points and platelets up a few. The team member I spoke to said it was bone marrow failure, possibly due to a virus or something, but no chance of remission. So just keep on watch and wait with aspirin. The white blood cells look good, so I guess I can still fight off viruses. Perhaps I should stop worrying about going out so much.

[Eadaoin]

I was diagnosed with an MPN in 1998 and so far no gene mutation has been found. I am mystified but not concerned.

[MaggieSylvie in reply to Eadaoin]

Hi Eadaoin,

When I had my BMB I was told that I could have a gene mutation or that erythropoietin wasn't being produced. When I was put on aspirin I asked about the erythropoietin and was told there was no lack of it, so with all the talk about JAK2 etc, I assumed I had a gene mutation of some sort. I have the MDS/MPN overlap, which is rare enough. I'm low risk, so am beginning to find this all a bit silly, when there are people with my condition who are really sick.

[Eadaoin in reply to MaggieSylvie]

Txs MaggieSylvia

Very pleased to ‘meet’ another person who has MPN/MDS where, so far, no gene mutation has been discovered. Does not mean they are not there just that so few have the overlap that, from what I understand, very little research is being done. Stable is good. I am pleased for you. Problems occur for me when I need other procedures or operations elsewhere in the hospital. Then the haematologist always becomes involved with advice and directives because as she once told me “your platelets don’t behave like anyone elses”. So take special care should any such need arises. It’s pointless comparing yourself with others with MPNs. We all have our health challenges don’t we? I was diagnosed in 1998 and was very shaken and nervous at the time. But I’m now 77 and have learned to live with a condition which is not going away. Stay well and safe.

[MaggieSylvie in reply to Eadaoin]

Hello, Eadaoin, Great to meet you! I am nearly 76 and only diagnosed in June last year. The shock of the diagnosis set in after I got home from the hospital. I had had a scan that said all my organs were normal, so I wasn't expecting what I got told, especially as they could have told me three months earlier.

I am suffering with a bad back at the moment; it's a long term thing but has been particularly miserable for the last three months. Next week I start back with the physio as the gateway to anything else - like scans. I'm not holding out much hope that a young man will understand the excruciating pain I suffer. Honestly, if I had broken my hip I would have expected the pain to have subsided by now.

It's interesting that you label the crossover MPN/MDS, whereas I have it the other way round. In fact, I thought MPN was something lesser than the MDS, just a small extra. In fact, the booklet they gave me was all about MDS and I had to skate around the internet to find out about MPN. I don't really suffer from this disease (I only got diagnosed because I could hear my heartbeat and it was thought I might be anaemic). There's nothing to talk about really, other than the uncertainty of it all, and as my bloods are "stable" I've come to terms with it. So far, I haven't needed many hospital procedures, only a defected septum, fixed in 1976 and a number of basal cell carcinomas, so nothing too intrusive. I guess you are not so lucky - you have had it for a long time, so presumably you are farther along the line than I am, but I hope not too far.

You stay well and safe too.

[Nynana in reply to Eadaoin]

Thank you for your comments. This is a new diagnosis for me. No mutations either, on Hydrea for increased platelets. Your words were very comforting.

[hunter5582]

Sound like you are the rare of the rare. There is info out there on triple-negative such as this. ncbi.nlm.nih.gov/pmc/articl... .

I am wondering did you ask specifically about CALR and MPL? Did they actually check for them as well as JAK2?

Stable is good. Like Bobby McFerrin says "Don't Worry, Be Happy" Sometime I have to watch this just for a grin.

youtube.com/watch?v=d-diB65...(Not working as expected?)

[MaggieSylvie in reply to hunter5582]

Hi Hunter, (Video unavailable) I asked him which gene mutation it was and he went through them all and said none of them. I was surprised he was able to access the information so quickly.

Yes - stable is good, but the trend is going the wrong way in haem and platelets, so I suppose eventually it'll get me! It does look though as if I don't need to worry too much about actually catching Covid, though if I do, I might be in trouble. This suggests I can mask up like everyone else and be normal (whatever that is).

Thanks for your reply. I'll click on the link to see what is happening.

xx Maggie

[hunter5582 in reply to MaggieSylvie]

Might not be available on your side of the pond. Look for Bobby McFerrin. Don't Worry Be Happy.