Is there anyone out there who has MPD Jack2 pos ... - MPN Voice
Is there anyone out there who has MPD Jack2 pos but unclassifiable. I have yet to find anyone that I can perhaps share some knowledge.
Do you mean you are Jak 2 positive, diagnosed with MPD but not yet known which one?
Yes. It seems that at the moment its just sitting there, but I have symptoms of extreme fatigue, itching, bruising, bad headches and constant infections. I just wondered if anyone else has beed diagnosed as unclassifiable and had similar symptoms. I meant to say if someone could share their experiences.
I have ET, with the JAK2 mutation. Apparently, it does not make any difference to the way the disorder is treated/monitored
Because its unclassifiable I am not on any treatment at all, just bloods monitored evey 4 month. I just wondered if anyone else was unclassifiable with same problems.
I am Jak 2 pos, and I think unclassified. Sometimes its more like ET and other times like PV. Treatment to date has largely been responsive to symptoms. I think I get fatigued fairly easily but normal seems so in the distant past I am not too sure what unfatigued feels like.
Fatigue I can take but pruritus terrorises me at times.
I don't really understand what you mean by unclassifiable.
I am JAK2 pos and have a high platelet count as well as a high red cell count. My haematologist recommends treatments that are aimed at bringing my blood chemistry as close to normal as possible. If asked, she would say I have both PV and ET. Before my platelet count rocketed she would have said that I only had PV.
Are your blood results smewhere close to accepted levels, or are they very abnormal? I get the impression that treatment is unlikely to be started unless your blood results are way off beam.
The JAK2 pos bit raises an interesting quetsion - I'm wondering how long after acquiring the mutation our blood becomes significantly abnormal?
Jo-L. I have asked my heamatologist the meaning of unclassifiable, but really there is no deffinite answer. Having looked it up ( yes i know iI should'nt ).. This is what I found
Myelodysplastic/Myeloproliferative Neoplasm, Unclassifiable
Myelodysplastic/myeloproliferative neoplasm, unclassifiable, is a disease that has features of both myelodysplastic and myeloproliferative diseases but is not chronic myelomonocytic leukemia, juvenile myelomonocytic leukemia, or atypical chronic myelogenous leukemia.
. My bloods are within the normal parameters, but have been told if my MPD mutates to any one of the 4, it will more likely be ET. Still very confused as to all this and because there seems to be no-one with unclassifiable I cant compare fully with other MPD sufferers.
To me that sounds a bit like you've been given a 'heads up' that your blood chemistry could go awry in the future. The good thing is that you are having regular blood tests which means that any problems should be picked up very quickly.
I know it sounds trite but I really would try not to worry too much.....
Jo x
Hi Jo,
I'm not sure what unclassified means either. I, like you am JAK 2 positive I was told that this mutation helps them with diagnosis. First they said I had PV then ET both platelets and red are very high and white very low. I am on aspirin at the moment. I have been suffering terribly with fatigue and really painfully legs and hips. Do you have anything similar it's really worrying
Ginny x
Sorry Ginny,
I've only just spotted this.
Yes, fatigue is a big problem for me and it has a significant impact on almost everything I do.
I do have a fair amount of pain/discomfort but I don't really know why.
I don't know how old you are, but I'm 49 (47 when diagnosed) and my haematologist describes me as young!
Jo
I'm 41 Jo, and my gp said my leg and hip pain was wear and tear... What a load of rubbish. I just feel drained most of the time recently I'm due at my consultant soon so will be updating him on symptoms because it's getting me down
Hi when I was first diagnosed with an MPD in December 2011I was told I was Jak 2 + then I had a bm biopsy. The results from this came through after wating a very painfull 4 week period over christmas but they couldn't tell me if I had PV or MF. ( big difference in prognosis and played havoc with my state of mind) Therefore no treatment was given. I was feeling terrible. Headaches , enlarged spleen, dizzy , brain fog and joint pain. I went for a second opinion at Guys in London and after some more tests it became clear that my RBC was too high therefore pointing to PV.However I was made aware that there was no way of knowing at this stage if I was at the top end of the scale , ie heading towards MF or a stable PV patient. I would always advise anyone to take control and seek out the experts opinion. We have a rare illness therefore very few Drs are totally up to speed with diagnosis and treatment. I am alot more comfortable now that I have started venesection and aspirin although far from 100% at least I feel I am getting the best treatment for me. Hope this helps .
Hi
I think what you are referring to is known as Myeloproliferative Neoplasm (Not Otherwise Specified).
It is highly unlikely that you have this diagnosis if you are JAK2 positive.
It is mutually exclusive.
Speaking from experience, having had nearly two years if tests of every variety imaginable I was finally placed diagnosed as this.
I thought this was good initially but it is the beginning of a nightmare, no defined treatment pathways etc.
Regards Ian
I am unclassified but jak 2 neg but do suffer with the symptons you speak off and yes ian unclassified IS NOT OTHERWISE SPECIFIDED AND A DIFFICULT PLACE TO BE oops hit caps but if you in the midands fannetastic a new group starting up 21st jan would be great to meet you and compare note michelle
Thanks Shelly, but I live in Edinburgh. I asked my haematologist as I was a bit confused after Ian said I couldn't be JAK 2 POS and Myeloproliferative Neoplasm (Not Otherwise Specified). She was really puzzled at this comment as I for sure am JAK 2 pos and unspecified. It basically means that I have a little bit of everything but nothing has truly shown itself yet, although I have loads of symptoms, ie: fatigue, dreadful itching, ect.
Itching has now been under control for 6 weeks now due to tablets called Fexofenadine 180mg. They have been a lifesaver for me. I dont take asprin or have venesection, but do resort to painkillers a lot due to bone pain. Good luck with the new group and a happy healthy New Year.
Anne
ty anne same to you I have just been refered to Claire but from what I have learned a lot of the heamotogolgist don't really know a lot either I found the information I got from ian invaluable as I am sure you did he seems very knowledable about our condition like you I am unclassified although I do have some fibrosis didn't have syptoms at first now get hot and tired finsing it hard to cope to be honest people think you lazy not ill
Yes Shelly, the heat generating from inside the body...hot flushes but not hot flushes if you know what I mean. I have a tower fan by my bed on every single night, summer and Winter.. Coping with this unwanted visitor is very frustrating as people think because you are not very thin, no hair loss ( when not on meds ) and are not getting Chemo, then it cant be Cancer of any form. I have already fell out with my sister-in-law as she works in a Pharmacy and has never heard of people with a blood Cancer not getting medication. She thinks the fatigue is all in my mind.. Oh dear God I wish it was. This is a wonderful page to get support and vent your feelings, knowing there are others in the same position.. Take care
Anne
Hi
I was originally diagnosed with MF but then changed to PV. Although they actually think it might be a bit of a mix of the two, which when MF results in low blood counts and PV results in high is a tough one to comprehend.
Im JAK 2 Positive.
I have some fibrosis also.
Paul
hi paul are you at city hospital notts it is all very confusing I know I am
the thing is paul pv isn't life limiting but mf is so also confusing
Hi
I know, i am labelled as PV so i go on the basis that thats the main condition.
Fibrosis is common in ET and PV too, and i dont have enough to make it a full MF diagnosis
Paul
hi fan
yes it is all upsetting and yes as no treatment and rare people do think you are putting it on even the authorities when you need care it is very upsetting because we not dead in months they think its not real
Im at Derby Royal.
yes
Hi Paul how did you get on yesterday wad thinking of you
I was diagnosed with ET in September 2014 and am also JAK 2 positive, so far I've been taking Aspirin every day and my last blood test was before Christmas and my platelets had gone down ( good news) I am checked every three months and so far I've been ok.
I do get very fatigued but go the gym/run/swim 3 to 4 times a week . Im 51 and suffer hot flushes but I am coping so far.
I get confused because although Im low risk I never really thought of ET and JAK 2 as a form of cancer... is this right . I should ask my consultant more questions but was trying not to think about it.
After my diagnosis I did suffer bad depression which I got help for and am now a lot better in myself.
So I would say to anyone being diagnosed ask a lot of questions
