Cure

[Cathy426]

I can not wait to find a cure for MPN!!! 🙏🏻🙏🏻🙏🏻

[Lainy1]

Well hurry up then hee hee 🤣🤣

[bordeauxgirl]

I feel the same..have you noticed every time 'cancer' is mentioned as a disease on the media it is always about the tumor type cancers, don't get me wrong in getting miffed about it, my own sister has just had her op for breast cancer she is clear...we will never be clear of this horrible thing lurking in our blood, so someone somewhere in the media say hang on there , a bunch of people with a rare form are just as important , sorry to rant but I have just got back from a cruise with hubby, we both came down with 'Cruise kennel cough' he is now in hospital I am at home being looked after by my son . Stop me, someone.

[Indigo42916 in reply to bordeauxgirl]

It is indeed frustrating, some days it feels like a slow torture. When I read for ET especially, you will likely live a normal lifespan...the quality of that lifespan is not addressed. Normal is not daily pain and exhaustion. There is so much education needed with providers. Our "tumor" is everywhere, which I believe is why we have these dreadful symptoms.

Keep hope alive for better drugs and a cure!

Take good care.

[Wyebird in reply to Indigo42916]

I so agree with you Indigo42916. I want to SCREAM at the medical profession when they state quality of life is good. Utter rubbish, my ‘normal ‘ week is about80% of what it used to be like and that’s when my platelets are below 400. When they are above 400, I manage to live life about 60% of what I used to be like.

Then on top of that people say ‘but you go to the gym’ then I have to say but it makes me feel normal and I then spend rest of day on sofa’

I hate this illness but keep on telling myself there are a lot of people far worse off than me.

[Indigo42916 in reply to Wyebird]

Amen Wyebird! I am about to turn 60 and still working as a technical writer. I have to be "on" everyday to do my job. It takes everything I have. I rest every evening and on the weekends, so I can repeat the next week.I make myself walk two miles a day or it is worse. I estimate I am about 50 percent of where I used to be. I am thankful for good insurance and a good job, but the system needs to address these life issues.

Thanks for letting me vent!

[Wyebird in reply to Indigo42916]

You say you have good health insurance. That makes me think you are in the states. Goodness I’m so glad for having our national health system. I retired 2 years before diagnosis. I used to teach PE. No what could I have carried on working. Keep well Indigo42916

[Indigo42916 in reply to Wyebird]

Thank you, keeping well is my new unintentional hobby! I am, in the US, wish we had a single payer system, hopefully someday. Trying to work for two more years, then retire.

Take good care.

[Wyebird in reply to Indigo42916]

Take care hope you manage to work for another 2 yrs

X

[Indigo42916 in reply to Wyebird]

Thanks Wyebird.

[wendycu]

I’m with you on this one. My consultant is trying to find a cure In Newcastle, he has been on TV a few times. I’ve told he when he finds the one for ET, I’m first on his list. I’m waiting for results of my bone marrow test. It takes up to 3 weeks.

Wishing you all the best xx

[Thouaret]

Bring it on - the sooner the better! Having lost all of Jan to flu I did not expect to start Feb feeling so rubbish. Started HU in Nov 500 g a day which brought platelets down to 324 then went on just 3 days and back up to 662 , now on 5days for past two weeks and will get results tomorrow. Meanwhile I am having sleepless nights due to burning feet and pain in finger and leg bones so any reprieve would be very welcome but I won’t hold my breath!!

[Garden987]

Hi Cathy. I'm totally with you regarding a cure for MPNs and fully endorse all the other replies. We are all struggling to live with this condition and whilst it's important to try and stay positive I have the impression it's getting to some of us. What are we supposed to do? Just keep hoping I guess. All good wishes to you all. Mary

[Roger41]

Keep hydrated.

Keep warm at night, salt lamp helps with mood swings.

Try to keep positive.

I do gym three times a week.

I take a warm bath that contains dead sea salts.

This helps with vague aches and as for bone pain I use a Chinese cold herbal spray.

ET diagnosed in August, hu now on six month maintenance dose Two per day which I take at 2pm.

No symptoms or side effects.

Feel much better, rash on knees now gone.

Of course this web site is both positive and very supportive.

Hope is the best medicine.