Help for someone new

[ourlife]

Has anyone heard from Moneab0987?

As a new post from a 19 year old who must be scared ? There where not many replies , what can we say to help ? Maybee the future is good as all our experiences and results will Benefit future patients, with thanks to members like Jedi reject !

Yours an intoxicateted and happy,

Ourlife

[johoho]

Sorry Ourlife, i dont recall seeing anything & have just searched for the name but there are no results?

[ourlife in reply to johoho]

The title was Polycythaemia posted by moneab0987 17 days ago. Has got 3 replies.

Sure he is ok I posted this after a few pints and was a bit emotional, am supporting my mentally ill son through a court case a close freind is battling melanoma the inlaws are living with us with dementia and Parkinson's and fatherinlaw has had a bad fall, not to mention the twins we are fostering,

Ourlife

[johoho in reply to ourlife]

It sounds like youre going through it quite a bit yourself Ourlife? I hope things settle down for you soon. Perhaps the post was taken down? I've looked back through my emails and nothing has come up from Moneab0987. Lets hope he posts again soon. Meanwhile, sending my thoughts your way in this turbulent time and remember to look after yourself or you will be little use to everyone else. Johoho x

[Nickthedevil]

I don't recall seeing the post and like johoho have searched and nothing comes up. It's a shame if they feel we did not try to help them as we are all here for each other.

Karen

[darcey]

I have been on a trail drug called Momelotinib 200mg a day. Is this what you meant.

I was told I had ET in 2000 I was put on asprin for two years. I then took Hydroxcarmide for ten years and was jogging along quite nicely unfortunately two & half years ago it all changed I was told it was now MF. I was put on Ruxolitinib for 18 months but it stopped doing its magic, I was having a lot of transfusions and very breathless.

I got put on the trial December 2015 for Momelotinib. Doing very well have not had to have a blood transfusion since August. I feel great.😀

[Aime]

Sorry had a search but no luck. Kind regards Aime x😺

[Shelly1960]

havent been on for a while but searched and can find no post from this person or them on the site i am so sorry if this person didnt get the help they needed from this site as this is very unusual this site is the most supportive i have known and sorry this young person didnt get heard is there anything we can do to change this at all

[Mazcd Partner MPNVoice]

hello, I have found the post that you replied to this is the link healthunlocked.com/mpnvoice...

Maz

[linds]

Darcy, so happy you are doing well.

Linda x