Worth reading, covers ET, PV and MF

[Paul123456]

pennmedicine.org/-/media/ev...

[Rachelthepotter]

Thanks, Paul. Great stuff. Now, if only our doctors would read this ....

[Skye333]

Sounds a fantastic study just wish I could understand it 🧐🤔

Janet x

[socrates_8]

Interesting Paul...

Also covers the newer scoring system I posted about earlier (MIPSS 70)

mipss70score.it/

Encouraging developments w/ possible CALR Vaccinations into the future...

Best

Steve

[ChelseaF]

I would love to hear more talk about symptom management as a low risk patient. It seems my doctor is unconcerned with quality of life issues. I would like to see studies on how cytoreductive therapy can help, or not help, with symptoms.

[Paul123456 in reply to ChelseaF]

This may be of interest.

mpnresearchfoundation.org/i...

I think part of the problem with drugs is that we all respond differently. Some get on brilliantly with Peg but others hate it! HU the same although generally better tolerated. And both drugs seem to be more effective haematolagally (incl spleen reduction) than for symptom control although some benefits. I’m on Peg and appears to be controlling my symptoms (itching and restless leg). Ruxo looks the best for symptom control, especially in MF patients.

Hems will be reluctant to prescribe drugs if you are low risk since concerns re long term side effects plus some people become inured to the benefits after time. One very respected Hem claims that Interferon only has an average five year working window (I linked the Presentation a couple of months ago) although there are a number of posters in the USA who are still using it successfully after 20 years.

What are your symptoms? Are you able to alleviate with diet, exercise hydration et? I’m convinced that exercise a great remedy for fatigue although that sounds counter intuitive!

Best Paul

[ChelseaF in reply to Paul123456]

Thanks. I have seen that one. My symptoms are many, but mainly fatigue, headaches, pins and needles, muscle and joint pain, sometimes ocular migraines, etc.

I do exercise 5 days a week. I stick with gentler forms of exercise - walking and pilates. I usually walk 2-3 miles a day. I am working on diet, hydration, and taking supplements. I am willing to try almost anything.

I asked my doctor about a trial of medication for symptom relief and he said no for all the reasons you list above. He’s going to try a mini iron infusion to see if it has any impact on my fatigue though my iron is normal. My transferrin saturation is on the lower side of normal so he thinks it’s worth a shot. I feel like it’s a shot in the dark.

I wish that there were more focus on symptoms because I feel like I have to put up a big fuss to even get my hem to pay any mind to my symptoms and they are having a serious impact on my quality of life.

[jenster68]

Could someone explain slide 15 to me please? Is it suggesting that taking aspirin alone reduces platelet count? I'm confused - I thought the aspirin was to reduce clotting risk only.

[AndyT in reply to jenster68]

I think your previous understanding is correct - I’ve never heard it suggested that aspirin reduces platelets and in my case it certainly didn’t.

I suspect the slight decline in the aspirin only cohort on slide 15 may be to do with natural variations in that group of patients.

[Bluetop]

Thanks Paul, very useful