Hi all I'm new here

[Mummyto4c]

so a few months ago I went to the doctors feeling very run down tired etc. A full blood test was done and the next day the doctor phoned for me to come straight over.2 years ago I had a stroke and have been on medicine since anyway to cut a long story short platelets were high and have been since. So went for Bone Marrow yesterday and meeting with consultant on Monday. The nurse said yesterday she thinks it could be ET I'm so unsure of what I should be asking on Monday.

[violeta19]

More or less same as myself i had cancer 21yrs ago then 10yrs ago i had Temperal Arteritis then a stroke 3yrs ago and since i have felt unwell till after 5 blood tests i was referred to our local hospital 2months ago they took blood tests and told me i had ET doctor called sister in as i was in a terrible state trying to get my head around it i thought i was going to pop my clogs came home and started cleaning and clearing out like a maniac a couple of days later i came on this site and that's when i realised i was'nt in this on my own the advise i got made me feel calmer and more focused.Write down in a pad anything that comes into your head even you think its insignificant anything at all you are worried about i had a list a mile long but the doctor answered them all makes you feel so much better.Best wishes.Violet x

[Mummyto4c in reply to violeta19]

I have been the same although today I'm a little sore from the bone marrow .It has all happened so quickly and my head is all over the place . I just wish it was Monday to I find out what's what. Thanks for replying Violet x

[Dianne-Guisborough]

HI and Welcome to your new MPN family

You will find lots of support, advice and above all understanding from the lovely pepes on our forum. At the moment everything seems somewhat overwhelming and alot to take in . I too was like you - I had a massive Pulmonary embolism New Years Eve 2015 which they think was perhaps linked to undiagnosed polycythemia after I got diagnosed with it in October 2016

I would say to wrote down any questions you have so that you don't forget at your apt . Also ask the haematologist to explain your diagnosis, tell you what his/her aims of treatment are and also what treatment they are planning. Write down her answers or if you can take someone with you , ask them to jot down notes for you . I always ask for a copy of my blood results and i keep them in a file at home. Its useful to see how your results react to any treatment you are given . You can also ask for a copy of the consultants letter to your Gp as this is a record of your progress and treatment plan etc .

If you usually pay for your prescriptions and start on medications such as aspirin or you are already on warfarin after your stroke , you can ask your GP for an exemption form for the haematologist or your Gp to sign . As MPNs are classified as blood cancers you qualify for free prescriptions - every little helps !

I am sure Maz who organises the MPN Voice Will be in touch with you and she will send you MPN Voice leaflets about the different MPNs and the different treatments.

I hope you soon feel alot better once they get your platelets down and Good Luck at your apt . I always go with either my husband , daughter or sister or sometimes all three ! My haematologist never minds and if you have someone else with you it is not only support but they can as I say jot down what your Haem is saying .

Take care and remember now you have this condition keep hydrated !

I can always recognise my other MPN "brothers and sisters " in the waiting room as we all have our little bottles of water!!

Take care and e -hugs to you

Love Dianne

x

[Mummyto4c in reply to Dianne-Guisborough]

Thanks Dianne I intend to take my Hubby along with me .I will in time tell my kids well my older 2 but not the younger 2 .So then either my son or daughter can come along as a fresh pair of ears. x

[Dianne-Guisborough in reply to Mummyto4c]

Goodo

Please let me know how you get on xx

[Mummyto4c in reply to Dianne-Guisborough]

will do thanks again xx

[Jacqx17]

Hi

Backing up what Violeta has said, ask anything and everything no matter how silly it seems, and if you forget something then ask on here, the people on here are nothing short of wonderful, they welcome you and help you with anything that you are struggling with, or want more information on, or just to give support on the days your feeling a bit lost.

I'm relatively new to all this and the lovely people on here have helped me so much.

Good luck and best wishes for Monday

Jacqui🤗

[Paul42]

Hi

Welcome to the forum, sorry to hear of your problems, it is a scary time but dont be afraid to ask questions. This is a list for starters I would go armed with for monday if it was me.

1. What is your full blood count and how do they call compare with normal. (When you look at the chart if any are abnormal there should be a little arrow up or down next to them showing if your count is low or high)

2. If any are abnormal ask how far out they are and what it means.

3. Ask for copy of your blood counts, this will help you track them.

4. If you havent been tested yet and its not mentioned then ask about the JAK2 or CALR gene mutations, these are the most common identifiers for ET. You wont have both, you might not have either but most people with ET will have one or the other.

5. They probably wont have the BMB results yet, from memory mine took about 4 weeks for the full results to come through though some of them came within 2 weeks. If you have high platelets and one of the two gene mutations I have mentioned above this should be enough to diagnose as ET.

Some good advice already given about free prescriptions and having someone with you, writing it down, keeping well hydrated etc.

You can get lots of help and advice on here and the main thing is dont be afraid to ask questions to us or your consultant.

Finally try and not google it too much, there is some good information out there but a lot of statistical rubbish too.

Good luck for monday,

Paul

[Mummyto4c]

Thanks Paul a lot of the above questions were answered when I went for my bmb . My platelets were over 700 and have been as high as 950 I'm sure the nurse said Jak2 was positive.

[linds]

Hello,

All the best for Monday! It is such a shock and know just how you feel. I was going on holiday when I went down with gout one day, saw doctor who did blood test. When result came through was told forget flight tomorrow, you are not going! Any way that is all history and five years ago. What I wanted to say was don't worry too much as you will be fine and just to reiterate what Paul said please don't read Google until you are really sure what you have and have got your head around it all. Some sites just don't know what they are talking about. Lean on all of us when you need someone.

Linda x

[Essexdoll]

Welcome darling! I had a stroke too, however it was ten years before someone did anything about it!! Was told I was stressed!! At least you have the support there it seems, hope your appointment goes well, much love xxx

[catwoman2015]

Hi welcome i agree with all thats been said to you , people on here are great and you will feel alot more at ease about your condition, my platetets started creeping up in 2012 , i have been on treatment since sept i am jak2+ so not had a bMB i have ET take care and good luck for Monday , your be fine all the best Holly

[Mazcd Partner MPNVoice]

Hello and welcome to our forum, I hope it all went well today at your appointment and that you found out lots more, there isn't really anything more I can add to the advice and comments that you have been given by the lovely people on this forum, so all I will say is, don't be afraid to ask any questions you have, and let us know how you get on, and if you want some information booklets then please email me at [e-mail] with your details. Best wishes, Maz

[Mummyto4c]

Afternoon everyone. Seen my consultant today and she confirmed ET and jax+. My platelets from the other day was 805. Bmb results not back but ultra scan was all clear.

she has sent us away to digest everything and will see me next wed and wants to start me on Hydroxycarbamide.

[linds in reply to Mummyto4c]

That's the first hurdle over anyway and I am hoping it was not as bad as you feared.

I have never taken Hydrox but loads of our gang have and some for years and years with great success. These pills/injections are what keep us going so well so personally I take my Rux with grateful thoughts every day. Wishing you all the very best.

Linda

[Mummyto4c in reply to linds]

Thanks Linda xx

[mhos61]

Hi mummyto4c,

I'm sorry to hear of your diagnosis - but at least you know what you're dealing with now. I also have ET (jak2+) and am on both hydroxycarbamide and aspirin, I have responded well with no side effects.

Good Luck

Mary x

[Mummyto4c in reply to mhos61]

Thanks Mary xx

[Rebeccca]

Hello, yes, I remember the shock, and i definitely thought the worst, but as everyone here will tell you, knowledge really helps.

Most of us discover that once diagnosed, things can be very well managed, and i put myself through some torture, before getting used to the idea that i had a condition, and accepting that there are no firm answers, were all different, and every time i ask about 'when will things really change' I always get the 3-5 years answer. Still now, 3 years in.

My advice is to try to only deal with facts, not worst case scenarios.

I know, easier said than done.

I also think it's really important to keep a copy of your blood results. That way you can keep track of where you are, and pore over the definitions to really understand what everything means.

I'd also want to know if there are any earlier blood tests you can use for comparison.

All the best, i know it's not a great feeling to know so little about your condition right now. I really think it will get easier.