Wide ranging Q&A with Prof Mesa

[Paul123456]

Covers many of the issues raised on this Board incl diet, itching, exercise, diagnosis, progression etc. Well worth watching imo.

youtube.com/watch?v=oufKG_l...(Not working as expected?)

[Swede]

Not sure what is wrong but "an error occured"....for about 25 times....???

[Wyebird in reply to Swede]

Me to. Only tried once but now I’ve read your reply I won’t retry

Thank you

[Paul123456]

Sorry, will try again

youtu.be/oufKG_lIGnY

[Paul123456]

Really sorry about this.

Will try one final time

youtu.be/oufKG_lIGnY(Not working as expected?)

[Paul123456]

Hopefully this has now worked. If not, please try searching Google for the title + Mesa

It is worth the effort! I found it filled in a number of gaps.

Apologies again for the botch ups

[Judi150 in reply to Paul123456]

Paul, many thanks for all your efforts. A very interesting and informative video, which I wouldn’t have seen otherwise.

[Swede in reply to Paul123456]

Yepp, worked now. Interesting.Thx!

[tessa46 in reply to Paul123456]

Many thanks for this Paul, its very helpful, I've learnt a couple of useful things - that sustained activity helps counteract fatigue and that UV light helps itching. Thanks for persevering with the link.

[Bluetop in reply to Paul123456]

Thanks Paul, very informative, thanks for posting.

[Rachelthepotter]

Thanks for putting this link up, Paul. I really appreciate your searching out and making available such expert and clearly presenetdd information.

One of the things that I found very helpful was Reuben Mesa’s descriptin of the kind of exercise fhat helps with MPN ( and other cancer patients) symptoms. It is sustained physical activity for at least 20 minutes. Walking without stopping, for example. I’ll see if I can work out a programme,for myself. Doing the everyday activities doesn’t count.

My EPO dose had been increased ( tho I’d have preferred the quality of life I’ve had with the odd blood transusion) and I can do more. I’ll aim at some of that being 20 minutes plus exercise a day.

All the best, and thank you again for finding such good stuff for us.

[liarose in reply to Rachelthepotter]

What problems/ symptoms have you had with EPO. It has been suggested to me but at the moment I'm not keen.

Thank you

[Rachelthepotter in reply to liarose]

No problems with the EPO: injecting myself into a generous pinch of flesh in my abdomen with the prefilled syringes wasn’t difficult or painful. They have very fine needles . Although I did manage to stab my left thumb ( the one pinching the flesh into a fold) the first time I tried. I had weekly shots to start with.

The only thing that caught me out was that the syringes have to be kept refrigerated, so that when you go away for a trip that includes a day when you will have an injection you need to check that your accommodation has a fridge that can be used to store the EPO I knew mine didn’t, but what I didn’t know was that the local GP couldn’t give me a prescription for EPO . Big hassle ensued so I came home early.

HOWEVER for me the EPO, while upping my Hgb and giving me more energy doesn’t have the same effect as a transfusion : hard to explain but I don’t feel like my old self as I did after each of the two transfusions I’d had.

But definitely worth a try imo.

Let me know how you get on.

[Fika500 in reply to Rachelthepotter]

Hello Rachel. I understand what you mean regarding EPO injections, travel and storage of the injection. My husband started using them about six weeks ago. He uses Aranesp sure click and storage issues are quite complex. The pharmacist told us that once taken out if the fridge and at room temperature ( considered to get to room temp after 30 mins out of fridge) it must not be put back in the fridge. It is fine for seven days if kept at room temperature but not above 25 degrees. This raises all sorts of logistical issues ,even in relation to getting it home and in the fridge after picking up the prescription at the hospital.

In terms of effectiveness, he seems to be responding well. His hgb was 94 and he was quite debilitated .After three injections, hgb was 98. He has more energy (doing some 3-4 mile walks) is not sleeping as much/often during the day. I hope things work out for you and you can travel where and as much as you want. Best wishes.

[Garden987]

Thanks for the info. Unfortunately can't download much of it. You have obviously done a lot of research etc and I want to ask you. Question (doctor though you are 't! I've heard that stress can cUse llatelets to rise, also flying can cause infections. Each time I've flown to Canada - not recently - I had a very bed chest infection - pneumonia. Is it something you've discovered I your research? In 2002 I had the most horrendous chest infection which was not investigated Then in2014 I was diagnosed with ET. JAK2. last BT revealed CALR. I e felt very unwell since the initial infection and have had repeated infections ever since. You are going to say talk to your haemo. Done that. My gut instinct tells me this MPN began with the infection - never actually discovered what!and the lack of investigating needed. So I am wondering if I picked up some unlocked at bug. There now Paul, think you might discover something amongst your many forums?We live in hope! Thanks. Mary

[Paul123456 in reply to Garden987]

Sorry but can’t really answer. Re flying, I think everyone prone to slightly higher levels of infection since recirculated air. Re our MPN’s, there appear to be a myriad of symptoms, especially since a blood disorder, but most of us are getting on a bit and therefore some natural wear and tear!

I hope you feel better soon

[Aime]

Thank you Paul - definitely food for thought. Kind regards Aime x😺😺

[hall2]

Hi Paul I also found this via a Facebook page. It's very good and well worth watching.

[Juliet46]

Paul This video was really interesting. Not all of it applied to me, but I have learned certain things from it. Thankyou !

[Marossi]

Thanks, Paul for making this video available to us. It answered quite a few questions for me and I found it quite positive and encouraging overall.

[Margo18]

Paul

I have just watched the video and found it very interesting. Dr Mesa is a mine of information and speaks in a very patient friendly way

Thanks for finding this

Margo

[Wyebird]

Thank you so much Paul, I managed to access the video. It was really good

[EleanorPV]

Very interesting, as I’ve just spent 2 weeks in the sun with no puritus (itching). I’m away to fight for light treatment