Myeloprolifative Neoplasms - Has Anyone Else Got One?

[Senoritakazza]

Hi 😊 I'm Karen aged 50. I was diagnosed with Essential Thrombocythemia in 2009 its pretty rare so it is difficult to find anyone who has it to chat to 😞 - its great to be part of this group and I look forward to meeting you all x

[ARW99]

Hello Karen, I was diagnosed with a borderline ET/Polycythaemia Rubra Vera just over a year ago. I take a daily dose of hydroxycarbamide and people say I look better than I have done for years. Early days but much to be thankful for.

- Robert

[Senoritakazza in reply to ARW99]

Hi Robert,

What is the difference between Polycythemia Rubra Vera and Polycythemia Vera? I keep my fingers crossed for you that your meds keep you going without symptom and looking well. Do you get any Fatigue?

Karen

[Marie_14]

Karen

My husband has atypical chronic myeloid Leukaemia. Not sure it fits into your group but think it might? He was diagnosed 3 years ago. He was put onto Hydroxycarbamide. That worked for 12 months but then we asked for a second opinion as he was starting to look ill again. He was taken off them and put onto Ruxolitinib which he responded to very well. Unfortunately 12 months ago he was told he had a form of Parkinson's. Again a rare version! So he has now gone down hill quite rapidly. Due to the rare form of Parkinson's rather than the Leukaemia. Sometimes life sucks?

Marie_14

[Senoritakazza in reply to Marie_14]

Aaahhh Marie I am so sorry to hear how much your husband is suffering you must be out of your mind.

I assume there are no drug combinations that can ease the symptoms and effects? Xx

[Marie_14 in reply to Senoritakazza]

Karen

Yes think that is a fair description! I tend not to worry about his Leukaemia now as he seems pretty stable at present. Have to go to hospital on Friday though!

It's the other thing that is causing him huge problems. Heartbreaking to be honest.

[Senoritakazza in reply to Marie_14]

Hi Marie_14

I hope all goes well at the hospital today my lovely

Karen x

[Marie_14 in reply to Senoritakazza]

Karen

I told the consultant that his problems were not due to Leukaemia but to his rare form of Parkinson's! He examined him and told me he thought I was right!! Wow! Shame he didn't listen to me when I asked why my husband was walking the way he was? He snapped my head off and asked me what did I expect as he had Leukaemia!!

Today he couldn't wait to shake my hand and was nauseatingly nice! Not meant of course but hey ho?

If I could just find a magic tablet for his other complaint we would be fine?

Marie x. (Thank you for asking by the way)! Off to see the Neurologist on 5th!

[StefHere in reply to Marie_14]

which medication was he taking to treat parkinson? my dad was diagnosed with a rare type of cancer last year

[LCNurse]

Thank you for joining our forum.

We have a buddy that you can talk to on the phone who has ET. I have asked her if she is happy to do this and has has agreed.

The buddy's name is Rosemary - she prefers to speak on the phone rather than use the internet.

please contact me on 08088010444 or via our live chat if you would like the phone number.

[Tinajane37]

Hi Karen I'm 44 years old & was diagnosed with ET - JAK 2 positive in 2011 & been seen every 3 months at hospital on the watch & wait path.

[Senoritakazza]

Hi Tinajane37 - are you taking any blood thinners like Asprin or just regular blood draws?

Do you have any symptoms? Xx

[Tinajane37 in reply to Senoritakazza]

Aspirin every day

Loads of symptoms :

Achy bones

Extreme fatigue

Cold feet & hands during the day but feet are on fire at bedtime can't even stand anything on top of them

Bed sweats

Can't sleep

Headache

Dizziness

Pain in my back

[Marie_14 in reply to Tinajane37]

I would ask your consultant why you are only on Aspirin. You have a lot of symptoms. Maybe you need something a bit stronger?

[Tinajane37 in reply to Marie_14]

Hi Marie,

My platelets have always been around the same numbers up until now,& they are on the increase for the past 6 months which is concerning but the consultant is going to see me in December, so I guess I'll know more then 😢

[Marie_14 in reply to Tinajane37]

Glad you have an appointment soon. Fingers crossed for you.

Marie

[Tinajane37]

Thanks for asking Karen

How are you getting on ?

[Senoritakazza]

Hi Tinajane37

I'm doing well thank you. I take Clopidigrel every day (I am asprin intolerant) and I too have symptoms however my ET has brought on Rheumatoid Arthritis and Chronic Anaemia too so half the time I'm not sure which symptoms belong to which illness 😀 I do take a lot of natural supplements and use herbal teas to help with a lot of my symptoms.

Have a happy Friday xxxx

[eastwood1932]

Hi Karen, I am another ET'er like you. I was diagnosed in 2011 after aerterial clots also at the age of 50 (is there something about turning 50). Do you know if you are Jak2 positive or CALR. I am currently on Hydroxycarbamide and interferon injections. I am based in Merseyside and know a couple of other ET'ers. Love to hear from you if you want to chat

janet

[Senoritakazza in reply to eastwood1932]

Hi Janet

I'm JAK2+ solely on Clopidigrel (1 x per day) my most hated symptom is fatigue, really hate it.

I use a lot of herbal teas and supplements to get me through 😊 Well, you have to try don't you Lol

Are you symptomatic? Whats your worst symptom?

Its good to meet you Janet 😊

[eastwood1932 in reply to Senoritakazza]

I would say worst problem is the fatigue but closely followed by neuropathy in feet and lower legs. I have artery clots in my legs in 2010 and lack of blood flow damaged them a bit. Finishing work in a few weeks and going to get a mobility scooter, so watch out world Hells Grannies at large!

[Senoritakazza in reply to eastwood1932]

Hahaha have fun!!!! 😉😉😉

[eastwood1932]

Hi Karen

Meant to say, have you discovered MPN Voice, patient charity that represents the MPNs. Is a good resource on the web, lots of information, they also have a forum on healthunlocked

[Senoritakazza in reply to eastwood1932]

Hi Eastwood

I am signed up to MPN Voice it has some great information. I am also a Member of the MON Advocacy Group which is based in the US but covers Europe too - they are very informative and the updates and seminars given by Dr Mesa of The Mayo Clinic are really interesting.

[Senoritakazza]

I meant MPN Advocacy Group - lol

[linphy]

Hi, i was diagnosed with ET a month ago, my consultant put me on hydroxycarbamide but after 3 weeks has taken me off it as it made me awful, all i wanted to do was sleep, felt so sick no energy. See consultant thursday he'll decide then what medication his putting me on.