Myloproliferative neoplasm

[lbailey1090]

Hello my name is Lisa . My doctor said that I have myeloproliferative neoplasms. I hAve an enlarged spleen, jak2 positive. I am on hydroxyurea. I have good days and bad. I am tired all the time and I always ache.

[socrates_8]

Hey Lisa...

Welcome to our rather exclusive club. You must also be very special people... Like me, and all of us here... :))

Sorry you are not enjoying some of your symptoms/side-effects at the present.

I am Post ET (prefibrotic) Myelofibrosis (MF). In simpler terms, my disorder is in transition from ET to MF. How long that might take, and whether that transition becomes ever more accentuated is still anyone's guess, unfortunately (this is a part of the frustration of having an MPN) .

I like to philosophically remind myself that it is all a part of my new adventure... (but I do not much enjoy many aspects of my symptoms either ~ just quietly...

There are also many other wonderful people available here (aside from myself) through this amazing website, and if you get stuck with any tricky questions? Maz the site administrator, can usually access members of the MPN medical fraternity.

Stay in touch...

Best wishes...

Steve

(Sydney)

[Paul42]

Hi, Welcome to the forum.

Which flavour of Mpn are you?

I have PV, am Jak2+, enlarged spleen.

This is a friendly place, lots of people with different stories to tell

Paul

[akonline]

Hi Lisa, have you considered taking Jakavi/Ruxolitinib? It's a Jak2 inhibitor - when I take it my tiredness and bone & muscle pain almost disappear. Start on a very low dose - I only take 2 x 5mg per day. Most people dont experience many side effects. I am taking this for the time being, until the new generation of MPN drugs will become available. Good luck!

[socrates_8 in reply to akonline]

Wish I could access that drug in Australia... Would dearly love to be rid of all my symptoms too...

Steve

(Sydney)

[47Robert in reply to socrates_8]

Hi socrates_8.

I live in Australia, you will find that Jakavi went on the pharmaceutical benefits scheme in January this year. As an aged pensioner I pay $5.20 per 28 Day supply. The label on the box says the full cost is

$5,147.88!

[socrates_8 in reply to 47Robert]

Hey Robert...

Yes, I am aware that it is available via the PBS, but only if you are diagnosed as being MF. As I am only in transition (Post ET - prefibrotic - MF), I am presently unable to access it via the criteria set out by the WHO, at the moment.

Thanks Robert

Steve

(Sydney)

[tracey13]

My husband has pv jak2 positive with an enlarged spleen. He's on daily asprin and 1x 500mg of hydroxy.

He suffers from tiredness he still works full time and leads a normal life.

He has stopped drinking coffee and it's made a big difference to his fatigue.

Tracey

[RobinBrum]

Hi Lisa

Welcome to our club. There are lots of things to try and see if things get better for you - everyone is individual. For example, hydroxyurea lowers your red cell production (among other things). Eventually that can lead to anaemia - so that might account for some of your tiredness.

So, do consider, after talking to your doc, a bit of iron supplementation. I'm a week into trying this using a gentle organic liquid supplement, and I do feel a bit more energetic. As someone else suggested, cutting down on coffee might help too, as caffeine inhibits iron absorbtion. And you can get into a bit of a vicious circle with coffee and fatigue

[fee13 in reply to RobinBrum]

Care needs to be taken when supplementing for anaemia. It may not be caused by iron deficiency. There are a lot of other causes especially due to the condition we all face and medication we are on. If iron has been tested as low that's fine but otherwise there is risk of iron overload which can damage organs i.e., liver, heart etc

[lbailey1090 in reply to RobinBrum]

Thank you

[lbailey1090 in reply to RobinBrum]

Thank you for your information on coffee. I wasn't aware of how coffee or caffeine would effect me.

[Mwalimu]

Hello, Lisa, you sound down. When were you diagnosed and what kind of MPN? I want to tell you that I had more aches and pains before I began treatment with HU and asprin. Now my biggest problem is fatigue but don't know whether that's my ET or the HU or a combination of the two.

My only recommendation is eat well - healthily and organically when possible - and exercise even when you don't feel like it. Let us know how you get on. Sallie

[lbailey1090 in reply to Mwalimu]

I have been feeling a little down due to being so tired all the time and not being able to be the Super Woman that I usually am. Thank you for responding . Great to see everyone supporting each other. There is not a lot of real life information out there.

[Loubprv Volunteer]

Hi Lisa, my name is Louise, I live in Cumbria, I'm 62 and was diagnosed with polycythemia 7 years ago. I take 1000mg HU 5 days a week and 500mg two days a week. I'm fine, and feel well, with little fatigue, and almost no symptoms. There is hope you see! I buddy around ten people who have been diagnosed with polycythemia, all of whom have felt like you, and are now feeling much better.

You'll read lots and lots of rather depressing posts on this ere site. The majority of people only write stuff if they have something to be negative about - the rest of us, toddling along really well - tend not to look at it much. So chin up, and read on! Long post, forgive me.

There are 3 main types of MPN's as they're known - polycythemia rubra Vera which you probably have - you didn't say - essential thrombocythemia, and myelofibrosis.

Ok.

There are lots of things you must do in order get your head round this rare blood cancer. ( yes it's a blood cancer, but it isn't going to kill you. Most people live a good and normal life, but you have to handle it correctly )

1) do not be depressed or frightened.

2) you don't say where you live, or whether your haematologist is a specialist in MPN's. If he/ she isn't, then find someone who is, and at least seek a second opinion, or even better, move to that consultant. I did, I now travel between between 1.5 hours and two hours to see him every 5/6 weeks. Best thing I ever did. This is really important because as far as I can see there are an awful lot of haematologists out there who aren't very au fait with MPNs and all the symptoms, and so aren't terribly helpful or sympathetic. Ruxolitinib isn't an option for everyone in England because at the moment it isn't licensed for the treatment of PV, only for MF. That might have changed. However, that situation is being worked on and it has had superb results in the treatment of MF, and in trials for PV too. If you find a specialist in MPNs then he will know more.

3) read as much as you can about your disorder. Become your own specialist or project manager if you like. Look at mpnvoice.org.uk - super website. There are also forums all over the country, please attend one of you can, it will help you hugely and you'll meet loads of lovely friendly people ( including all the consultants ) just like us!

4) this may not apply to everyone but I really believe that mindset, diet and lifestyle really affect how you are. And no, I'm not a whacky yurt dwelling loon growing my own veg, keeping goats and praying to the moon! I'm a perfectly normal ageing old bird who decided that I was going to do more than simply sit and feel jolly sorry for myself, popping pills and waiting to collapse in a heap.

I started to walk. Very briskly for at least an hour a day usually more, even if I felt like collapsing in a chair. It will help your circulation, and up the endomorphins which will make you feel better. My goddaughter is now a consultant in exercise and the effects on cancer and travels all,over the world speaking to oncologists.

If you carry a little extra weight lose it.

I lost two stone simply by eating sensibly - no packeted, processed, tinned or ready made food or meals. Why fill your body with crappy chemicals when you've upped the chemical intake in the form of medication? Losing weight will a.so give you mor energy. You may be a skinny bean of course in which case ignore all that.

I cut out alcohol, caffeine inc decaffinated ( that was hard, ghastly headaches for three days ) and now drink 2-3 litres of water every 24 hours.

If you're not a water drinker, then start slowly and build it up. Really really important to stay well hydrated but don't drink too much at once, half a litre at the most.

Lastly try and stay positive and keep telling yourself that things will get better.

All this of course, doesn't help everyone, it may not help you but it certainly helped me.

If you need more info and help then email Maz at mpnvoice.org.uk

Another good site is patient power - American but no less helpful for that.

Hope all that helps.

Love

Louise

x

[FJOS in reply to Loubprv]

Hello Lisa,

Just read your post and the replies - I agree completely with what Louise has written - keep positive and do your research in small quantities or you may go into overload and be overwhelmed as I was at first (diagnosed last May!). I quickly came to a complete acceptance of my ET - CALR and medication recommended - 1500mgs of hydroxea with asprin daily with plenty of water - 2/3 litres!

I live in the south of Ireland - feel great most of the time - apart from a heat rush and high complexion occasionally. I am 71, widowed - play golf - better than I ever played before! I regard my condition as a blessing (I retired just recently after receiving the prognosis!) in that it reminded me to take time out for myself; my four children and partners and four great grandsons all of whom live closeby. I believe life is for living to the full and this condition has reminded me of the simple joys of life all around me which too much work had somewhat clouded.

Keep your spirits high and look for the silver lining in the cloud that surrounds you now - it will pass and great times will follow for you for the rest of your long life!

Best wishes,

Frank

[Loubprv Volunteer in reply to FJOS]

Great reply Frank! I agree too.

Ireland, how lovely. One of our favourite parts of Britain, are you north or south - we've been to the south several times including honeymoon 41 years ago, but never to the north. Strangely enough we've just been discussing visiting Belfast for a long weekend, which I believe is a super city and the surrounding countryside beautiful. It's on our list!

Best wishes,

Louise

[FJOS in reply to Loubprv]

Thank you Louise - you missed the word"south" in my first reply! We have a complicated island here - Northern Ireland is part of the UK while Southern Ireland or Eire is a republic brought about following an uprising in Dublin 100 years ago for independence of Ireland . Centenary celebrations of our independance were held here last Easter. Since 1916, there has been a civil war in 1922 over a treaty with Britain agreeing to 6 counties of the north remaing part of the UK. Over the following years there were calls, coupled at times with further violence from republican (IRA) and loyalist (UDA) extremists, for the island to be united or for the North to remain part of UK. Divided opinions on this led to violence causing 3,000 deaths in Ireland and some through bombings by the IRA in mainland Britain. Gladly, that came to an end 20 years ago when a peace process was negotiated by both governments with the help from US and EU. This largely brought an end to the borders between both parts of the island.

Our quandry now is that Brexit raises many serious issues again for the whole island of Ireland and has opened up the debate as the voters in Northern Ireland were in favour of remaining in EU! The UK is Ireland's largest export market (40%) and this has already been severly hit with the drop in sterling value to the euro. Custom and border controls with trade tariffs are likely to be imposed and they will cause major issues for our economy. We must wait and see how it all works out!

Sorry if I have gone on too long on the history!!

You must have had a good honeymoon as 41 years later you plan to return to the "scene of the crime" as we say!!

Enjoy your trip to Belfast!

Frank

[Loubprv Volunteer in reply to FJOS]

Hi Frank,

Yes of course silly me. I suppose over here som e of us tend to think of "Ireland" as part of the U.K. Wash my mouth out.......

I'm one of those awful people who wouldn't mind if Scotland Wales and the whole of Ireland beetled off and did their own thing ( can I hear you hissing and spitting!!)

It would have been interesting if after the Scottish referendum, we'd have had another referendum for us English folk to decide whether or not we wanted to Scotland to remain in the UK. But that's another story.........

[FJOS in reply to Loubprv]

Hi Louise,

No, I am not at all hissing and spitting - in fact I agree with you. I believe that "nationalism" has caused far too much division in our world for centuries! I would prefer to see a more united world with less division and more love and compassion for all. Life is far too short and wonderful and deserves to be enjoyed by all the peoples of the world.

Frank

[lbailey1090 in reply to Loubprv]

Louise , so wonderfully kind and helpful of you to list things out for me. Thank you so much!!!!! I really appreciate it

[Brendaf in reply to Loubprv]

Hi Louise just read your post above. I too have recently been diagnosed with myeloproliferative disorder unclassified so just waiting for more tests and info. I noticed you live in Cumbria and so do I would be nice to catch up and have a chat sometime.

Brenda x

[Loubprv Volunteer in reply to Brendaf]

Hi Brenda,

Would be very nice to catch up! I'm in Windermere where are you? My email is [e-mail]

[Brendaf in reply to Loubprv]

Hi I'm in Penrith I'll email you. Brenda

[lbailey1090 in reply to Loubprv]

Hello Louise,

I just read your encouraging letter again. Thank you so much.

I am on Jakafi 20mg 2x a day. It has made a big difference.

Hope you are doing well.

Merry Christmas

[Hidden]

welcome Lisa , you will find lots of help and good advice on here to help you ,lm also Jak2+ . I get aches and pains ,and i get. very fatigued also . The heamatologist hasnt fully explained what the jak2 means only that its a mutation .so im still learning and trying to get as much unfo i can , best wishes Holly

[lbailey1090 in reply to Hidden]

Thank you. At first I thought it might be arthritis , because the aches and pains are awful but mostly bones and joints. . Arthritis was ruled out. Yes I have a lot to learn. Some days are better than others. Wil. Persevere.

[mjfin72 in reply to lbailey1090]

Hi lbailey. Just seen your latest post and wanted to ask about your symptoms. I have just recently been diagnosed with ET jak neg following tests for joint pain and stiffness in both hands and feet. This has been going on from last July. Started off effecting me just in mornings and evenings but now the pain in my feet is constant. It feels like my bones hurt all the time and for last wk or so my back has been hurting as well.

My consultant and a doctor I seen this week have told me that these symptoms are not connected to ET in any way but it seems a lot of people on this forum do have these symptoms.

Any advise you can give would be greatfully received.

Hope you are well

Kind regards

Mandy

[lbailey1090 in reply to mjfin72]

I was just recently diagnosed in July 2016 . But have had the aches and pains for several years. Seems like when I mention the aches and pains they look at me like I want pain killers but in all actuality, I would really like to know why and what will help me live a life without pain. Best remedy for me so far is to stand in shower for 15 minutes w/ warm to hot water. I also have severe muscle spasms. I also have the feet pain . Some mornings feel like my feet are broken, I just wrote off as planters faciaitis and started wearing sketchers shape ups. I don't think anyone knows all answers , but we can try to help each other.

[mjfin72 in reply to lbailey1090]

I know what you mean. My consultant pretty much dismissed my symptoms and just said see if aspirin helps (which so far it hasnt). Like you I just want to know why I have these symptoms and if they aren't related to ET then find out what else is causing them. Also like you arthritis has been ruled out. My gp did think I may have lupus as other symptoms I have as well as stiffness and pains tie in with lupus but hasn't really been investigated fully. Will be seeing my gp in a few wk's with a list of questions. I did read online that approx quarter of people with ET have high uric acid levels which can cause stiffness and arthritic type pain so will ask about that.

Your description of broken feet is spot on. I feel like an old woman at time's hobbling around.

It would be nice to have all the answers but I know that's not likely any time soon.

Take care

Mandy

[mol56]

I, too, have E.T. Jak negative but CALr positive.

The E.T. was diagnosed almost 12 years ago and I have been on Hydroxycarbamide for 11 years now. Before I was diagnosed, I had a lot of pain in the long bones of my legs and also in the hip bones. I do still get some pain but not so badly. It is hard to pinpoint this down to E.T. or just general wear and tear on the body as I get older. I am 66.

As for foot pain, I do get this and wear rather an expensive brand of shoe with thicker soles!! But I'm worth it, I tell myself.

I was given anti gout medication for the first year of taking HU and was then put onto Lansaprazole ( anti acid) and have been ever since. This also helps any problems my hiatus hernia may cause. Generally though I feel okay apart from the fatigue which is a well documented symptom by patients of MPN's .

I have learnt to live with E.T. but I do get the occasional wobble and general feelings of frustration. A good walk (gently and slowly in my case) or a potter in the garden helps. I have a greenhouse in which I can shout out all pent up frustrations and no-one can hear if my language is a bit colourful!

Trying to explain about MPN's to other people is always difficult but then I had never heard of it before and it took me a good year to get to grips with the symptoms.

I wish you all the best and hope you can get some answers to your questions from your doctor.