interesting article

[Superwoman]

Hi folks did anyone else see this article in the Sunday Mail, very interesting.

[Ovingite]

Thanks for posting this. It puts a personal perspective on the report that Prof. Harrison issued a couple of weeks ago. Slowly, but surely, the armoury of drugs to control MPNs is growing

John

[Susana7]

Thanks for sharing! Encouraging news.

[Phil1955]

hi I would imagine this is only if your not high risk

[Planting]

yes I did see it and showed it to my family and partner.

Good to get any progress out in the media so that we can all keep up.

[T1960]

Great news. Let's hope it is going to be offered to many others who will benefit. I am guessing we will all want to try it, how we get our consultant's to change us over to it is another matter. Of course we are all different, our symptoms are very different. Let's hope the benefits out way the risk's.

[Loubprv Volunteer]

Hi I haven’t read it yet but personally I wouldn’t put any store by anything written in the Mail!!! Re rux I don’t think it’s available for PV patients yet x

[Loubprv Volunteer]

Me again. Just read the article. It’s absolutely correct that Rux can help PV patients who react to other drugs - otherwise this article is particularly dangerous and unsettling for newly diagnosed patients. Certainly if I was newly diagnosed I d be having a fit.

I ve had PV for 15 years and am perfectly fine without any of the positively overplayed rubbish written by Eve Simmons. There are thousands of patients happily taking HU with no side effects at all.

This is typical of the badly researched rubbish churned out by the Mail to sell its dreadful newspapers. Sorry to be critical. Louise xx

[friendofpiglet in reply to Loubprv]

Like you, I am not inclined to take much notice of anything published in the Mail.In this case this is lazy journalism - I remembered having read something more than similar the other day bloodcancer.org.uk/news/blo...

Still, when it comes to our conditions, there's no such thing as bad publicity.

[tracey13]

My husband has been on ruxolitnib for 4 years now it's been a life changer for him.He was diagnosed with PV he was on hydroxy but this absolutely drained him after two years . He had a bone marrow biopsy and this revealed primary MF . So he's now on ruxolitnib.

Tracey

[Loubprv Volunteer]

hi everyone

I was absolutely not criticising the publicity of Ruxolitinib or the use for PV patients.

Nice need to ok this brilliant drug for PV patients.

HOWEVER - having buddied over 40 newly diagnosed patients I know only too well how very frightened they are. Frightened of a condition of which they’ve never heard, frightened of the word chemotherapy, frightened of the side effects, worried about treatment available………please put yourself in this position “ “superwoman” - scaremongering needlessly to sell newspapers is simply not on.

I m so sorry your husband has MF but delighted that Rux is working for him as it does for many many others worldwide.

I was offered a Rux trial years ago but agreed with my consultant that HU was and is doing the job - as it does for so many.

We must read all articles with an open mind.

I agree all publicity is good publicity but not at the risk of frightening new patients Louise

[Superwoman in reply to Loubprv]

so can I just say, I saw this in the daily mail on Sunday and thought some might be interested to read about David Hamilton or better known as Didi David, so someone who is famous who has been diagnosed with an MPN I did not post to scare anyone. like you I have been on Hydroxcarbamide for many years for my ET Jak 2 positive diagnosed in 2013 and was doing really well on it but of late have had a lot of health issues which has had me hospitalised, now having to take even bigger doses of Hydroxy and monthly check ups and possible Bone Marrow Biopsy in the next few weeks.

It was just a simple post regarding someone famous who is just like us, I did not want to offend anyone. So will not post anything else, so that I do not scare anyone.

Jean. Who once felt like Superwoman but dose not anymore.

[mhos61 in reply to Superwoman]

Jean, just to say you did not offend me. I am certainly interested in any media coverage that highlights our conditions and gives hope to many.

I’m really sorry to hear of your present health situation. I know you have been through so much with your daughter too these past few years. The stress must be unimaginable.

Please continue to post!

Xx

[Otterfield in reply to Superwoman]

Please continue to post any any articles which you find interesting. I'm not a fan of the Mail but this article is not scaremongering, it's actually very positive. Don't be put off! I have seen your previous posts - you are still Superwoman! X

[mhos61]

Great news for PV patients.

Amazing to hear that Mark Hill has been on Ruxolitinib for 11 years and it is successfully controlling his disease and symptoms.

[EPguy]

It's great to see the very recent positive reports on Rux that we've discussed getting attention. But as Loubprv says, many do well for years on HU, contrary to the implications in the article.

The biggest omission is IFN, it's now standard therapy in most practice and is not mentioned at all.

[Anag]

this is a very good med. I’ve heard this from several MPN specialists who seem very good results in their patience. 🙂

It’s always putting things in perspective when we see prominent people with our illnesses. Julia Roberts has Thrombocytopenic purpura for the past 15 years. This gorgeous powerhouse is just like us. She adjusts her days and rehearsals and filming according to her strength. She is nevertheless leading a full life. Perhaps it is the illness that helps her live so consciously and fully. We should be doing the same, each one of us in their own way

There’s so much we and the doctors can do! There will also be progress. 😀