I'm new to all this 😁

[Cheryl47]

I'm new here . Have been told I have Polycythemia but don't have the JAK2 gene ,just wondered where I go next? Everything seem very vague ,perhaps it's because I'm older than most of you,70 next birthday. Any help appreciated .

[bordeauxgirl]

Hello Cheryl Don't worry you are not alone. Anything that worries you just come on this site and ask the questions and you will get someone in the same boat answering your query. I am 72 and was told At 70 I had PV+ jak2, and didn't know I was sick!!! After a year of venesections I was then put on Hydroxycarbamide , it is a chemo . But for the last two years I have felt vey well. Most of us have slightly different symptoms, night sweats , fatigue, bone pain but in my case although I have these quite honestly I don't feel ill.

Before you go to see your Consultant / Haematologist write down anything /any questions you haventhat are a mystery to you , don't let them get away with 'your fine' ask what defines 'fine' why this and why that. ask for a read-out of your blood tests, you can track the numbers for yourself, are they climbing or declining. Be aware of how you feel and TELL them ask, ask and ask. Drink plenty of water. That is the best thing you can do because some doctors are not very forthcoming , it is your right to know what is going on. Good Luck to you Best wishes June.

[Cheryl47 in reply to bordeauxgirl]

Thank you very much for you quick reply , I'm seeing my consultant again next week,so I will take your advice and ask plenty of questions . Do you know what difference not having the JAC 2 gene makes?

[bordeauxgirl in reply to Cheryl47]

HI Cheryl, As I have the mutation I have never had the need to ask that one, see you already have the first question for your list. I do wish you all the luck, ask away , don't be fobbed off. Don't forget it is your body , you have the right to know. Keep strong . June x

[Mazcd Partner MPNVoice]

Hi Cheryl, welcome to our forum. You have had good advice from June about asking questions and writing them down, it does help. With regards to the JAK2 positive or negative, have a read of this on our website it might help you

mpnvoice.org.uk/about-mpns/...

and this article in one of our newsletters might also help you, it is Closing the gap: the genetic landscape of MPNs.

mpnvoice.org.uk/documents/n...

You can also read and download our information booklets from our website mpnvoice.org.uk, or if you prefer I can send you copies in the post, just email me [e-mail].

Best wishes, Maz

[Cheryl47]

Thank you . Just one more question,if you have time. What is the difference between Polycythemia Vera and Polycythemia ?

[jane13 in reply to Cheryl47]

you can have polycythaemia that is "secondary" : can be caused by smoking for instance - and can be reversed if the underlying cause is addressed e.g. stop smoking. Polycythaemia rubra vera can't be reversed as it is caused by a genetic mutation (e.g. jak2 or CALR)

[Cheryl47 in reply to jane13]

Thank you . I've never been told that, also I've never smoked!

[jane13 in reply to Cheryl47]

hi, secondary pc can be caused by several things i think, just gave smoking as an example, think it's more common than prv. i have no idea by the way whether this apples to u - am just answering yr question!

[cwayman11]

Hi..my haematologist told me they are the same thing. X

[linds]

Hello Cheryl,

Guess what! I am 70 this July so you are so not alone. I have Myelofibrosis so different from you, however, I am doing well and don't feel ill at all. I get fatigued very easily which is the major snag and I am certainly not going to let this MPN knock me for six so you ask all the questions you can think of and don't worry if you can possibly help it. It's a diagnosis which rocks us to begin with but it's really not the worst news. Come back and tell us how you are getting on won't you.

Best wishes,

Linda

[Skye333 in reply to linds]

Hi Linda I have MF too can I ask if your bloods are ok. Mine are and I am feeling very fatigued but my haematologist dismisses it when I tel him that. He just says my bloods are ok so I'm fine and to see my GP about it, I also have bad itching when I have had a shower. Even though he answered my questions it was mostly in a dismissive way.

Janet

[linds in reply to Skye333]

Hello Janet, nice to communicate with you. Yes my bloods are OK at the moment. They have been a bit up and down over the last two years and at one point I needed two transfusions and then a transfusion of iron. However, I take Ruxolitinib twice daily 15mg in morning and 10mg in evening and by reducing the evening one (I did take 15mg then too) it has gradually allowed my red count to rise. The snag here is that the itching has returned! My itching is nothing to do with water though.

Try smoothing a cold flannel or one of those cool bags for muscle strains over your skin when the itching is bad - I find it helps. I have now resorted to taking a Piriton when I go to bed but when I see my GP next week I will see what anti-histamine he can recommend.

When I was last at my clinic (Prof Harrison) the anti-histamine was offered but it was not that bad then. They always note the fatigue but make very little comment. They are interested but I think they just know it is part of the condition and therefore try and manage it.

Do you find that the fatigue is always the same because I don't. For instance just the last week or so it has been really an effort to do much housework. Only too pleased to be the age I am and not having to work away from home.

I find it difficult to walk very far and I was a great walker. Am going to try walking with poles to see if that helps. How are you when it comes to exercise?

The last visit to clinic I was given an appointment 3months ahead. I was thrilled because that meant they really were happy with the state of my bloods. What a game it all is but my very best wishes to you and keep in touch.

Linda x

[Skye333 in reply to linds]

Hi Linda you are so lucky to have Prof Harrison as your consultant. She is so on the ball with MPNs. I was only diagnosed with MF last November and my bloods have been stable all the time it was a scan on my bladder area that discover an enlarged spleen.

My doc talks with the more experienced ones in Leeds but I'm not 100% happy with him.

My energy levels are rock bottom I'm finding it hard to do much housework too. Walking is the same. I've haven't any enthusiasm for much at all. Except my cats who love that I'm sat down to give cuddles more than I was before.

I've also just been told I have a severe degenerate lower spine and compressed fracture which doesn't help with the exercise.

I would like to see prof Harrison but I'm in Halifax and it's a long way to go when maybe she will agree with my doc. What's your opinion on that?

[linds in reply to Skye333]

You know, I think everyone deserves a chance with the Prof, the whole department is excellent. Have a good think about it and yes, it is a long way but you would know one way or the other that you were being treated correctly. Have you had a bone marrow biopsy by any chance? Are you on any medication specifically for MF? Do you drink plenty of water and eat lots of veg and fruit - sorry for all the questions.

Gosh, you have a lot to deal with altogether, my thoughts are with you.

You know I have just had a thought, perhaps Maz could recommend a specialist closer to your home to save you the journey to London. Or, someone else on this forum might give you an answer. I do wish you good news and really pleased your bloods are good anyway.

All the best and contact me any time when I'm not asleep that is

Linda x

[Skye333 in reply to linds]

Thanks Linda I probably don't drink enough water but I drink lots of tea lol. I eat lots of salad,fruit and veg.

I have had a bmb that Was how I was diagnosed. The Doc was very surprised by the result. I don't think he thought there was anything wrong with me.

I will ask if anyone knows another good consultant nearer to me. If not I could travel to London the odd time or two.

Thank you again

Janet

[Cheryl47]

Thank you Linda for your best wishes, my birthday is April so we are nearly twins.