Has any one else had this change happen to them. I get really bad night sweats,.
After another bone marrow biopsy I've been tol... - MPN Voice
After another bone marrow biopsy I've been told my ET has changed to myleofibrosis not sure I took it all in today so much info.
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darcey
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Hi Darcey
I'm so sorry to hear that you have been told that your ET has transformed into MF. It must be very worrying. Are you a regular visitor to this site or new? There's lots of support either through this community or via the MPD Voice buddy system so don't be afraid to ask for help from others who have experienced what you face.
Try to read as much as you can about the condition and hopefully you are being managed by a consultant with experience in this area, if not ask your GP if you can be referred to someone who is an expert. Everyone with an MPD has a different range of symptoms and medical management plan but as an MPD patient myself, finding out and understanding as much as I could about the condition helped allay some of my personal fears and through MPD Voice I've met and been in touch with many other patients who do cope well.
I'll pray that you get good support and information and a good consultant who will walk you through the best options to manage the MF. Well done on asking this community for help. With such rare conditions it's good to know you are not alone and I'm sure others will give you some helpful advice and encouragement.
God bless
Hello Darcy although I don't have MF (I am a PRV) I do get horrid night and day sweats. They seem to be at their worst shortly before I have a venesection. When they happen at night and if they are hot sweats I tuck a cold muscle pad from the fridge around my neck which helps a lot. If they are cold sweats which personally I hate most I find a cold flannel wiped over my body helps a little but you are always left with damp hair. These sweats can leave you gasping for air and even make one feel a little sick. I have a window open in the bedroom whatever the weather and also a plantation fan in the centre of the room which turns all night. My husband has been known to wear a ski hat at night!
So sorry you have had more rotten news to cope with but I am sure those who understand your condition in particular will rally to your side. Best wishes.
Hi Darcey. Sorry to hear your news. I changed from PV to MF nearly three years ago. There is a lot to take in I agree. This is a completely different disease from primary MF and needs to be dealt with differently. You need good advice and support. Take it all one stage at a time and move into the 'slow lane' if you have not do e so already. If you want to get in touch contact me on simonafraser@yahoo.co.uk. All the best.
MazcdPartnerMPNVoice
Hi Darcey
I am sorry to hear your news, I'm not surprised you couldn't take it all in. If you feel it would help to have a buddy, if you don't already have one, then let me know, email me at maz.cd@mpdvoice.org.uk and I can send you the details.
Best wishes, Maz.
Thank you all for your support & advice. going to the MPD day in London on sat hope to get lots of answers .
hello Darcey
I had the same thing happen to me 2 years ago. It's a bit of a whammy isn't it! There is so much more info available online now that when I was diagnosed with ET. Not sure that I agree that is is a totally different thing from PMF as postET/PV MF and PMF are normally lumped together for research purposes so they can't be all that different. if you would like to chat with me I hope we could find a private way (through MPDVoice perhaps?) to exchange contact details. Wish I could go to the MPD day in London too but I live in Scotland so logistics are difficult. I hope you find some answers there but I am afraid that some of the answers are just not around yet. Take care and get back to me if you'd like to chat further
Hi Darcey, so sorry to hear your news but good to hear you are going to the MPD Day. I am too and looking forward to getting information and meeting everyone. Thinking of you, take care Aime
Sorry Darcey, meant to say I have got PV and going through bad night sweats the moment. Sympathise. Aime
Hi Darcey/Beetle. I used to think that PMF and post ET/PV MF were one and the same. I agree that they are generally lumped together for research purposes. I think that this is wrong. My last (fourth) bone marrow biopsy disclosed an 'abnormal karyotype' in the stem cells involving what is in effect trisomy of chromosome 1, otherwise called a gain of 1q. When I discovered that his occurs in post ET/PV MF with some frequency but not on PMF I began to dig a little deeper. A recent paper pretty much confirms that they are two separate entities:
nature.com/modpathol/journa...
Worth reading. The full paper concludes that more effective distinguishing of the two diseases with more accuracy could have a role in improving prognosis, through developing treatments design to fit the different processes giving rise to the different diseases.
I will not be able to go to Saturday's conference, but it is an issue worth raising and I hope that someone will do so.
All the best.
Thank for this link. This piece of research appears to relate specifically to PostPV MF and post ET MF is not referred to. I had ET for 17+ years before the progression was noted and I have the del(20q) mutation that was mentioned as more common in PMF. The synopsis seems to suggest that there is no significant survival difference between postPV MF and PMF and I guess that this is the bottom line that we are all interested in. I have not paid for the full article but you say it argues that more accuracy could improve prognosis - in which case it could be very relevant. Like you I hope someone raises this issue on Saturday and I shall be asking my haematologist (MPN specialist) about this when I see him in December
Thanks Beetle. I stand corrected! I have been guilty of the same kind of error as those I have criticised. The patients covered in the paper were indeed two groups - one with post PV MF and the other with PMF, which indeed do seem to be two separate disease entities. It would be interesting to see what differences, if indeed any, can be distinguished between post ET MF and PMF. I do hope however, with you, that someone will raise the general issue on Saturday.
Hello Beetle and Murchhadhmor .I attended the first national MPD in London and during the afternoon session, everyone split into three groups PV, ET and MF. Each group had a specialist Doctor , the MF group were joined by Dr Rheban Messa from the Mayo Clinic in America .Hopefully, one of us there will have the opportunity to ask this question for you.
Thank you babbittybumble. I look forward to their opinion. I'm not sure if Rueben Messa will be there this year as he has had some health issues of his own but there will be other learned folk who might be able to shed some light on this.
Honestly, Murchadhmor, I was not trying to imply any slightest criticism. I hoped that the full article (that I have now requested from the library out of interest) might mention post ET MF as well.
My PV has mutated to AML, I also had night sweats.
Pete
Thank you all for your kind thoughts & replies. I did find the MPD day last week very helpful , a pod cast was done so those of you that could not make it to the day. You can watch it, when its put on our MPD website.
Sorry not to have replied to some of you but I have had to take a bit of time to take it in i was expecting a change in my meds due to my anaemia , had painful B12 injections three a week for three weeks they were supposed to make you feel wonderful, I have never felt more tired. Twice they had a go a a bone marrow biopsy first attempt nothing just an hour of torture, second was slightly better , as least they got what they wanted this time. Three weeks later a result but not what I wanted I now have myelofibrosis
I have been a buddy to quite a few fellow ET 's over the last six years. When I was first diagnosed over thirteen years ago i just took aspirin .two years later I was put on Hyd. I had no one to ask I seem to still know more than my GP. I have asked for a buddy myself now as I don't know what to expect will I have many changes or will it be a slow change. It's great to talk as they say so a big thank you for your support.
