MPN Unclassified

[Misty-3]

Hi

I have just joined in and I’m glad to find a group like this.

I have just been diagnosed with MPN unclassified after a bone marrow biopsy. Before, my Haematologist thought that I had ET but now is unsure. I was wondering if anyone has dealt with this type of MPN?

My Haematologist has advised aspirin 2x a day and “wait and see” til my blood test at the end of June. I have decided to see a specialist this week. I’m not really sure on what to do. And I’m quite scared.

[Osteomyelio]

For a diagnosis of MPN, I always feel it is good to see a hematologist/oncologist who specializes in MPN.

[Misty-3 in reply to Osteomyelio]

Thanks.

[Cali-Med]

Hi! Misty, I haven’t had my bone biopsy yet but my platelets were normal, red blood is high, hemoglobin high, hemocrate high but all the mutation tests were negative. They called mine unclassified polycythemia. I haven’t seen the hematologist yet! It’s still 1 month before I can get in.

I think we feel that when we know exactly what we have we will feel better but I think the MPNs are a learning process and everyone manifests differently. I hope you get more clarity soon!

[Misty-3 in reply to Cali-Med]

Thanks so much Cali-Med. It’s just that I am JAK2+ and my platelets are quite high. And the biopsy result confirmed that I have MPN...shocking and disheartening..

Hope and wish that it goes well with you!

[Cali-Med in reply to Misty-3]

I guess unclassified means it hasn’t progressed to MF?

[Aime in reply to Misty-3]

Hi Misty-3, sorry to hear of your diagnosis. Each one of us goes on a journey which seems to be quite unique in a lot of cases. I have been recently rediagnosed with idiopathic erythrocytosis after being found negative for jak2 and Xeon 12 mutations. I was diagnosed with PV first.

No matter what you have, it can be controlled and treated. So many people on this site have an MPN or a variation and most of us are leading a relatively normal life, with some hiccups caused by bothersome symptoms. Many people have had these conditions for years and are still alive and kicking.

It is a shock but the more knowledge you gain, the easier it becomes to cope. You will never be alone on this forum - some lovely person will always help you. Keep in touch, kindest regards Aime xx😺😺

PS have a look at MPNvoice.org.uk which has got loads of trustworthy info on it.

[Misty-3 in reply to Aime]

Thanks Aime

I will keep everyone posted and I’m really thankful that I came across this forum as there is nothing much about MPNU in the internet...

[Cja1956]

You haven’t told us your other symptoms but you’re doing the thing by going to see a specialist. I hope you have a good outcome.

[Misty-3 in reply to Cja1956]

Hi Cja

My MPN was discovered through my routine blood test. I have a high platelets so my GP referred me to a Haematologist. I had a more detailed blood test where it showed that I am JAK2+. I was then sent for the bone marrow biopsy and it came out as MPNU. With symptoms, I get tired and exhausted, then I have tinitus (ringing in the ears) and heartburn...

[Cja1956 in reply to Misty-3]

So sorry that you’re feeling poorly. The symptoms are definitely common among most people with mpns. Just from my own experience, the heartburn could be an enlarged spleen. Some years ago, I was having really bad stomach pains, I thought. That night the pain got so bad, I thought I was having a heart attack. I was rushed to the hospital and it turned out I had a blood clot in my spleen. I also get a “whooshing” sound in my ear that matches my heart beat.

I hope things improve soon.

[Cja1956]

I meant to say the “right” thing

[Paul123456]

I’m PV/MPN-U . My take is that there are a spectrum of grades, I’m somewhere between ET and PV or between PV and early MF. BMB’s all hinge on the ability and experience of the pathologist examining the slides. I had two samples taken at my last BMB and two different pathologists - one said ET and the other PV/MPN-U.

Have you been told whether there is an fibrosis in the marrow?

Best

Paul

[Aneliv9 in reply to Paul123456]

I found this. I am not sure if is helpful though

onlinelibrary.wiley.com/doi...

[Misty-3]

Hi Paul

My Haematologist did not mention about fibrosis but she could not definitely say which classification my condition will be under. She was prescribing me to take hydroruxea but then changed to 2 aspirin daily and the “wait and see” until end of June for blood test again. And that’s why I’m like hanging in a limbo waiting for sentencing....😂

[francesb]

I am “unclassified” too, diagnosed 6 years ago, started on “watch and wait” with aspirin and then moved onto hydroxycarbamide and later added pegelated interferon. I’ve had 4 BMBs and genetic testing and have 4 gene mutations so treatment not easy, experimental really as there’s no clear protocol but I’m doing fine. Important to see a specialist who understands these things. Good luck.

[katiewalsh]

Hi Misty 3, Welcome to our group. First, Dr Syrdan Verstovsek in a program on Patient Power (good souvenir for info) said results of BMB can vary from lab to lab and from one sample to another from a slightly farther away spot. But you need a specialist & if there isn’t one near you you can probably find one who will coordinate your care with a local hematologist. There are many on here who have had an EPN for over 30 years. I’m also jak2 positive as many of us are. I’ve been given 3 different diagnoses but what the experts all agree on is that what we call it, unclassified, ET, or pre-fibrotic MF, my MPN treatment is always tailored on my lab results & constitutional symptoms. I’m told that being JAK2+ Isn’t a bad thing. CJA mentioned some problems s/he has experienced. One thing we know is we’re all different, our MPNs behave differently and not all our body “symptoms” are caused by our MPN or Medicine. As long as you have an MPN specialist overseeing your care you can relax & let her or him take care of you. It is very scary for most of us in the beginning but pretty soon we realize not much has changed and we’re still enjoying our lives. You have a lot of us here who you can ask advice of, complain/rant to and just ask for cheering up if you’re sad or worried. It’s the kindest group of people you’ll ever get to know. Take care & keep us posted please. Katie. PS Only rely on quality websites for research. There’s a lot of inaccurate & scary stuff found on google. I like the NCCN website. Just put those 4 letters in & then MPN

[Misty-3 in reply to katiewalsh]

Ok thanks Katie

[Shelly1960]

Yes I have unclassified for.me.means i have more than one type I have rouge white cells so a low immune system and that's unusual and have myelofibrosis also feel free to contact me to talk go in for.op.tomorrow so will only be able to text.not talk 07725855033

[Misty-3 in reply to Shelly1960]

Thanks Shelly

[Copurnicus]

What are your symptoms and blood counts?

[Misty-3 in reply to Copurnicus]

Just tiredness at first but my platelets were escalating every time I had my routine blood test during my check up...blood count started off at 485 then 539 then 641 then the latest was 699...

[Meatloaf9 in reply to Misty-3]

Hi Misty, I think the best thing you can do is see an mpn specialist if your hematologist is not one they can work together. My platelets hit 550 two or three years ago but at my visit last week they were 459. The mpn specialist I saw said that it is not unusual for platelets (or any blood results) to vary from test to test and that the long term trend is most important. He also told me that ET and PV are basically the same disease. I think the best thing to do is find a specialist you trust, keep your appointments, do whatever he says (at least as long as things are going reasonably well), and then when you leave his/her office go out and live your life as if you didn't have this disease otherwise you may miss a lot of living. I am 69 ET Jak2+ at least for now. Best of luck to you on your journey.

[hunter5582]

I have also carried that label for a while. Diagnosed with Essential Thrombocythemia over 30 years ago. About 6 years ago, it progressed to Polycythemia Vera - but the hematologist missed the progression at the time. There is a continuum between ET and PV . Sometimes we don't fit neatly into one category or the other. Since you are JAK2+ one piece of information you will want to know is what your JAK2 mutant allele burden is. This is the percentage of alleles on this gene that are mutated. The test is called a JAK2 Mutation Quantitative Analysis (or similar). As others have mentioned, consultation with a MPN-expert doc is really important. many docs, even hematologists, have little experience with MPNs. Be sure to ask your doc how many MPN cases he/she has treated. Here is a list of patient recommended docs with MPN expertise mpnforum.com/list-hem/ . It is a scary time waiting to get this figured out, but be assured that most people with ET/PV are able to manage the condition and live normal life spans. All the best to you.

[Misty-3]

Thanks so much Hunter

[Jenny_F]

After my recent bone marrow biopsy My diagnosis changed from ET to ET with unspecified. They have said that I havent got MF and dont appear to have PV but they are going to monitor my red cells as well. I suspect its on its way to PV or there is something else out there that they haven't got a name for as yet perhaps.