MPN Voice | HealthUnlocked

Wondering how most feel about having this? I have had all that have been offered,and have always had the phizer vaccine,but this time all I can find is the...

I was diagnosed with ET six months ago and am on aspirin and hydroxy with few side effects so, other than occasionally getting over tired, life as a retiree...

Hi everybody I am just enquiring how often do you get to see your Haematology consultant regarding your MPN. When I lived on Teesside I had my bloods...

When the vaccines for covid first appeared I received the AstraZeneca type. Two or three weeks later I ended up in hospital with unbearable headache and not...

maybe some of you have noticed I’ve been absent from this site of late well after a long illness my husband passed away on the 19th March. It was an illness...

Has anyone been excused from jury service because of having an MPN?I've just received a letter and I honestly can't see how I can do this with the fatigue,...

I'm about to start interferon treatment for ET. I need to learn to inject myself. I'm a bit overwhelmed right now and concerned about side effects. Will I need...

Question for our US members: I'm in the thick of this transition to medicare and seeking the latest info from members who are on medicare and Rux. I'm in...

Hello. I understand that as (currently) incurable disorders PV and ET require long term management via venesection, anti-platelet and cytoreductive drugs. Does...

I am Jak 2 ET and taking 1000mg hydroxycarbamide daily and 75mg aspirin. I saw my consultant today and he said my vitamin B12 levels were extremely low so I...

Hi all in UK. Has anyone been asked to complete a form by Jet2 asking quite a lot of intrusive questions before showing them to fly? Including questions such...

I’m now on day +284 & so far seem to be progressing well. I know things may change, but hopefully I’ll continue to progress. I’m managing to walk most days,...

Hi all, just wondering if any folks who have been tagged “low risk” by your care team have tried interferon treatment. I’m a 36 y/o female with PV (60% jak2...

I note that on the Blood Cancer web site is states that Aciclovir is an anti-viral medication that prevents shingles, which can be a side effect of...

hi everyone I started interferon about 6 weeks ago and apart from a bit of nausea and the odd ache the day after seem ( fingers crossed) to be tolerating it...

Hello again. Hope you all had a good weekend. I've enjoyed a complete break from migraine aura (visual, sometimes speech and short term memory, the headache...

I'm now +58 days and 3 weeks out of hospital. So far (touch wood, fingers crossed) I'm not showing any signs of GVHD or other abnormal symptoms but I know this...

CBC results from today show a sustained response from the venesection I had done on March 26. HCT = 43.3% LYMPH=1.17 and NEUT=0.59 are still a bit low but...

Just wondering if it’s best to cut them from the diet or does it really matter? Do they make any difference to people with MPN’s. We are overseas and I am...

Hi everybodyI learned today that my ET has progressed to MF. I had a bone marrow biopsy which seems to confirm it, although a spleen scan showed my spleen is...

These days my lower legs ache all the time. They ache regardless of whether im active or inactive. Do you think this ET/MPN related or something else...

Hi all, It will be my first summer on HU and I am a little concerned about how to protect my skin, now that it needs extra protection because of HU, and how to...

I’m Canadian and after reading posting on this site I’ve noticed the percentage of Alle Burden is often referred to, so I asked my haematologist what mine was...

My numbers have been low and getting lower I think that test last year was below 2%. This year they have done another test and the JAK2 mutation result has...

I'm now 15 months after my SCT and in my my recent review my figures are improving:WBC 4.0 HB 139 Neut 2.3, lymph1.12 and platelets 106 ( highest for a couple...

Just saying hello. I’ve been lurking since testing Jak2 positive (blood test) a few weeks ago and grateful for the information I’ve found here. It’s all very...

Good morning to you all. I wonder if anyone can help with my query. I saw professor Harrison two weeks ago and among things discussed was joint and bone...

Thanks for all your support over the last weeks, My platelets had risen dramatically and I was really quite worried. Saw my consultant on Tuesday and they...

I am a PV patient 57 years old diagnosed at age 50 and considered low risk. First five years after diagnosis I was treated with monthly phlebotomy and baby...

Hi everyone, I haven't been on here for a while as some life events took over for the last couple of years. I am looking for some advice and feedback about my...