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Myoproliferative Neoplasm Essential Thrombocytosis JAK 2

Myoproliferative Neoplasm Essential Thrombocytosis JAK 2

I am a long term MPN patient, Myoproliferative Neoplasm Essential Thrombocytosis JAK 2 mutation positive. I have taken Hydrea and aspirin for 14 months and have gained about 20 kilos in that short time. Has anyone else experienced this? Is it a side effect of the Hydrea. I take 500mg each day and my counts since commencing the medication is around 600. I am also so very tired and in pain, is this normal?

Thanks

I live in Australia abd the image was taken in Ireland.

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Hi Anna, welcome to the MPN forum. I have ET JAK2 positive was told nearly five years ago now, I was already on EC Asprin and then given Hydroxycarbamide, I take 500mg daily and a 1000mg Sat and Sun and my bloods are now all in the normal range, I have Hospital next week so hoping that all is still good.

When I first went on them it did take a while for my body to get used to them and did put a few extra pounds on at first, but once I changed my diet to plenty of fruit and veg with more fish included and started to take more exercise this helped immensely plus I drink at least 2ltrs of water a day, we all need this to flush the toxins from our kidneys and liver that Hydroxy causes.

The other thing is if you have any other underlying problems, for me it is the fact that I have an underactive Thyroid which can increase your weight, so take Thyroxin for that also, plus I was taking statins, but had to stop as they made me so unwell. But now all is good, speak with your Haematologist about your concerns, maybe they can change you to another drug.

Sorry I could not help more.

Regards

Jean

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Hi Anna... :)

I was initially diagnosed w/ ET that was later reclassified to MF due to a Bone Marrow Biopsy (BMB) result.

I was also taking HU in the beginning & also put on the pounds very quickly. As Jean mentioned above, I found changing my diet helped immensely as does getting some really good exercise 2-3 times per week...

I am no longer taking HU, however, I am still watching & managing my fitness regime w/ diet & exercise & feel so much better for it.

I am also based in Sydney, Australia. Happy to touch bases anytime...

Best

Steve

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Hi Steve I live on the Sunshine Coast born in Sydney though. I hope you are feeling well. Anna

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Hey Anna... :-)

Lovely to make your acquaintance too... (even if some five months later... ;–)

I have also lived on the SC myself, for almost three years, (back in another lifetime when I acquired and refitted a 40' masthead sloop from Lawries Marina at Kawana (do you remember Lawries?).

During that time, whilst doing the very therapeutical retrofit of my lovely old yacht, I lived on the canal at Mooloolaba, surf-ski paddle most AMs, created a marine annual called Ship2Shore, and it was such an awesome lifestyle... before a failed r/ship took its course...

Pity I did not stay there back in those days... It is astounding how life takes all on a journey, is it not? Or do we take ourselves... Hmmm... (?)

In any event... Nice to hear from you... :-)

HU did not agree with me either... I have always had aching bones and joints, cold sweats, fatigue that comes and goes... nausea etc etc... (When I was on HU I also used to suffer a lot from bleeding gums and blood in the back of my throat over night).

Hands are usually ache much worse than feet... But legs used to have burning sensations on HU, thankfully that symptom no longer occurs for me... I do still suffer from a form of fuge, however, it is greatly improved from the mental cloud that HU always presented to me...

Yet... some people swear by HU, and say it's the best thing since sliced bread etc... I guess we are all rather unique little chemistry experiments in our own rights...

Presently, these days I am MF, and recently discovered I have acquired a further genetic mutation – ASXL1 – which generally heralds an adverse outcome... My specialist recently decided to have me undergo a 2nd BMB this month to see whether or not my condition is progressing through bone marrow scarring etc...

If so, I will most likely be looking at an ASCT, however, if not... it will simply be more of the 'Wait & Watch' scenario... Neither outcome has a great deal of appeal. While the former offers the only hope of a cure (odds are not great in my view...). The later is like living with the sword of Damocles just waiting to drop at some unannounced future point in time...

Philosophically, (as I like being more philosophical given the option), none of us are getting out of life alive... as far as I am presently aware. Hence, I just try to be as positive as I can, and keep striving to improve some balance and a better quality of life...

Generally speaking, I am doing okay I guess. My symptoms can be a bit of a roller-coaster at times, however, right at this juncture I am actually feeling pretty good really... :-)

And you Anna? How's life in the sunny state where the all-year-round temperature average just happens to be 25ºC? Lucky you... I am so envious, knowing how beautiful the SC is...

Best wishes Anna

Steve

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Steve

You do a remarkable job of remaining positive and a mighty job at making others laugh. Many years ago I too owned a yacht wee one and I was on first name basis with the rescue guard at Runaway Bay, Fraser, Manly... Made some great and funny memories as a member of the yacht club in Bahrain. I left Brisbane in the late nineties returned for a couple of years in early 2000s and returned again in 2011 to care for ageing parents.

I have not had much sleep in years, hence the time. I am long past calculating the hours slept versus body's capacity to survive without sleep. I am sorry to hear you have MF. I have been reading many journal articles on research done on MPN of which I retain less than 1%. I am not familiar with the genetic mutation – ASXL1. I will keep an eye out. Tomorrow I will re-read my BMB results just to make sure it is not one o the one mentioned.

I have known I had ET since around 2006, a BMB confirmed it in 2012. Trying to deal with ongoing chronic pain that came on at the same time meant I didn't worry about the ET until platelets reached a million approx. 2 years ago that is when I started on Hydrea.

Did you ever make it up to Airley Beach? I think for me it tips the scale as my favourite place on each followed by Nice and Jordan. I used to love taking a day trip on Gretel and Apollo when Gretel was not available. The mind is a wonderful thing.

Thank you for making me laugh. Lawyer? Teacher?

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Hi Annastaunton,

Welcome to the forum. I have been on hydrea for nearly two years, it has had no effect on my weight. If anything, I lost a little weight - but I only take 5 tablets a week. I suppose we all respond differently?

Just to say, my ‘roots’ are in Co Clare, where your photo was taken.

Mary x

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I have et diagnosed since September, 2017.med two x500 mgs per day.

I have hand pain at night but I bust knuckles two years ago.

I use a Chinese herbs spray some times.

Started some multivitamins over the winter felt run down.

I have lost 8lbs since August 2017.

I feel tired in the afternoons after taking my meds.I run with this and go for a sleep.

I tend not to get too freaked out.

Perhaps at your next appointment mention how you feel to your team.

Mindfulness is helpful and I have purchased a salt lamp as this helps with mood swings.

Hope you feel better soon.

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Hi Roger41 thanks for your response. I have only now found your post to one I made some time ago. You are the only person I know who has mentioned mood swings as a symptom. It was only yesterday that I found it mentioned in an online MPN review. I have mood swings and I don't understand why. On a bad day it is worse. Anna ET JAK2 HU

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We are all different and our responses vary across the board.

What worked for me was a small-scale lamp.

It looks like a chunk of Orange crystals good for mood swings.

Hope this helps.

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