One Year On

[Lemon123]

Well, it's a Year to the day that I received my ET Jak2+ diagnosis. I can still feel the, "is this really happening to me?" question in my head as I walked out of the Macmillan Unit with a prescription for aspirin and a booklet about ET. Finding MPN Voice and this great group of people, has made my journey easier, I don't feel alone or weird, as I know each of you understand what being an MPN-er is like. My family too know I've a place that supports and gives excellent information, which has helped them cope with my having a blood cancer most people have never heard of.

A few weeks ago I was prescribed Hydroxy, just 500mg a day, as my platelets had risen to over 600 and, being 62, my Haematologist said put me in a higher risk level. Six weeks on and the platelets are down to 411 😀 and the side effects of Hydroxy, so far, are minimal - dry skin, a little more tired at times than the usual fatigue, but nothing I can't cope with. I don't post often, but visit and read the daily updates each morning. Thank you everyone for sharing and caring, it makes a huge difference not just to me, but my family too. More bloods and seeing my Haematologist in August.

I wish no one had to travel our MPN journey, but I just want to say thank you to everyone who posts, reads, and runs this forum, you're all making a positive difference to so many people, my best wishes to you all xx

[Louise2870]

Hear hear!!! Totally agree with everything you say! We’re all in the same roller coaster boat and having this community to ease our mind and share our problems is priceless!

Couldn’t manage without it!

I’ve been on hydroxy since my diagnosis of PV in February and I’ve had very little side effects too. Long may it last!

Best wishes Louise x

[Cando67]

Hi Lemon 123. I do agree.This group is such a comfort blanket. Kind and caring people who understand . I thank them all.

[Stephen399b]

I'm now 3 years in, with same diagnosis and meds. No great side effects, still work, although do get tired at times.

This is a great site and with the American one, MPN-NET, which is a bit more academic, have received so much help and advice.

England just building another big cricket score - so all right with the world! (well nearly)

Thanks to all

Stephen

[Cja1956 in reply to Stephen399b]

Thanks for the info about MPN-NET. I am in the US and wondered if we had a similar forum. I will check it out.

[Lucycourt]

Dear Lemon 123

I have ET + jak 2 -so 17 Hydrox tabs per week + aspirin for high blood pressure +diclophenic for arthritis !

But HEY 9 YEARS ON - and to my surprise when 1st diagnosed -still able and determined to enjoy life and interests -I am so fortunate to tolerate the drugs - and have good support from hospital team . A specialist nurse telephone number if I am concerned - knowing I have it has been comforting as yet ( 9 years on ) have not used it !

I hope you receive good support . People are so helpful and kind on this site .

[Cja1956]

Glad to hear hydroxy is working for you. We are nearly the same age. I’m 63 but diagnosed about 11 years ago. I still lead a full life except for cutting back on work a lot and learning to rest when I need to. I work from home ( I sell health Insurance) so that works out great.

I just found this site a few months ago and have learned so much already and the support is amazing.

Take care.

Cindy

[Lemon123 in reply to Cja1956]

Hi Cindy

It's so good to talk with people in similar situations. When I was diagnosed, after a routine blood test for high blood pressure meds, the gp looked back at my records and it turns out I've had high platelets since 2003, but no one noticed the relevance of the results until a new gp arrived in my surgery. Very grateful to the new gp, and also that nothing had happened in the last 15 years because of the undiagnosed ET, I know many people have had the same experience. I've recently cut my hours at work, which has helped with the tiredness.

Best wishes,

Lemon

[JackLina]

You mirror all our thoughts I reckon! Sending you lots of love and hugs. We have no option but to just go with it and stay as positive as we possibly can. When we're not, this forum is the best....xxx

[Mardihel]

Hi I also agree with you, this site is so helpful,I really do not know what I would have done without it. I was diagnosed last year 63 jak2 positive and put onhydroxy, same side effects too as you, tired, drier skin, or is it my age, let's pray for a cure x

[Lemon123 in reply to Mardihel]

Hi Mardihel

Definitely praying for a cure for MPNs and all cancers. It's good to be able to share our feelings and experience with others on this site. I pray you're keeping well.