Epo. London mpn day

[Rachelthepotter]

I'll be going to the london mpn day on18 th. I'm feeling tired and fed up. I've had 4 weekly epo injections and not much response. The energy I had at first was due to the blood transfusion I had at the same time, I think, because that's now worn off. I feel as tho I can't handle life at all. Which isnt my normal self

I'm tangled up in a debate with my haematologist (and that is never a good way to start a sentence) as to whether I have primary or secondary MF. That makes a difference to prognosis and in turn as to whether I am in the zone for consideration for a stem cell transplant. As I was diagnosed with ET in December 2016 and had the bone marrow biopsy asap in January 2017 which found MF it seems to me not to be much of a distinction It isnt as if I'd been tracked with ET for years and then slowly developed the fibrosis. It all happened in one go, but the fact that my local haematolpgist

I'm also finding it hard to get print outs of my blood results as a matter of routine, both locally and at ; when I get them it feels like a huge favour.

Anyhow, I'll make it to the 18 th meeting tho may not be there first thing.

Sorry this is such a gloomy post

Rachelthepotter

[Inca]

I am going Rachel,will look for you...what a miserable time you are having..I am not marvellous either , not as bad as you ....hope you get there and feel better, keep strong,see you on 18 th.Sally

[Rachelthepotter in reply to Inca]

Thanks , Sally. see you on saturday.

[linds]

Hello Rachel

I am so sorry you are feeling just anyhow as it's a horrid way to try and cope. It's strange because I have been rather down and it is not like me. It's the tiredness that gets to me in particular - I feel as if I live for my bed.

I have had MF diagnosed for three years and seem pretty steady and I have come to the conclusion that mentally it's peaks and troughs. I don't actually ask for print outs but they should not make you feel awkward like that. Shame on them.

Both my husband and I will be there on Saturday so I hope we bump into each other. Just remember we really do understand how you feel. Best wishes x

Linda

[sand-bog in reply to linds]

Hi Linda, glad you are going to London on Saturday, I was just about to send you an email asking if you were going! Hope all goes well, Sandra

[Mazcd Partner MPNVoice]

Hello Rachelthepotter, I am sorry that you feel like this, it would be best to discuss how you are feeling with the team at the hospital, I am sure they would discuss how you feel and find a way to resolve it. Some of us sometimes feel that we are not getting the support or information we want from our consultants but it may be because what they are telling us isn't what we want to hear or be told.

I have also deleted the name of the hospital from your post as naming individual hospitals is potentially slander and is against the ethos of this forum and site and I do have to be strict about this.

Maz

[stillkicking]

Sorry you are having such a difficult time, I do hope you are able to get to the London MPN day, it will be lovely to be able to meet with some of the other forum members in person. Kind thoughts and hugs, Peter

[Rachelthepotter]

Hi Peter

Thank you so much for the thoughts and hugs: much appreciated! I did make it to the MPN day : on the “just do a bit” principle I realised that tho getting there for the pre 9.00 start in London would be heroic for me, and might be unachievable, I could probably get there a bit later. Which I did. So I missed the first speaker ( I’ll catch up with her on the website video) but made it in time for the second one . Apart from a nap after lunch ( I am re-mastering the art of sleeping while sitting bolt upright: a skill I first learned at meetings when I went back to work while still sleep deprived after my son was born) I hung on in there and very much enjoyed meeting the other MPN patients and their partners. It was also good to see the honest disagreement between the various experts.

I asked the panel a question about the primary / secondary MF issue and after the event I got an email from my consultant saying that my own diagnosis was now actually primary MF. She had thought it was secondary. before: not sure why. It matters more than I ‘d realised because the critical prognosis estimate ( life ecpectancy of less than 5 yrs) which determines whether you are in zone for consideration for a SCT depends on that distinction

I very much doubt that I would want a SCT, but I’d like to have the option of choosing if it comes to it.

I’m on my ?5th week of EPO and it might be starting to have an effect.

And I ‘m getting better at the injections. I’ve only stabbed my thumb, rather than the skin fold I’m holding, the once .

All the best.

Rachelthepotter