MPN Voice | HealthUnlocked

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...

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...

Hi everyone. I’m getting a bit anxious and would appreciate any advice please. Three weeks ago my platelets were 569 having come down gradually over the last...

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, does anyone with a history of depression have experience of using peg interferon? I suffer from what you might call “mild” depression but it’s...

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...

Hi all, I'm curious to hear how often you see your MPN specialist and get your platelet level checked. My specialist recently suggested we go from follow ups...

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 everyone, Its been awhile since I've been on here . I would welcome your advice pls. I was diagnosed with Triple Negative-Essential Thrombesemia last...

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...

Hello, I found this forum after googling why my platelets have been consistently higher than reference range for years. I am 28, and my platelets have...

I am just wondering if anyone else has experienced Hydroxy not working as well after a time? I have been only taking it for 2 years now and all seems to have...

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...

As you may remember from previous posts, my HCT has been creeping steadily up. It looked initially like 175mcg Besremi was going to work, but the last two...

Hi all, not posted for a while but I am now at day+33 and finally starting to feel a bit normal again. I had very bad mucositis following sct and then problems...

Hi! So glad for this group. Have suffered with migraine since I was 8yo and have been treated for hypertension for over 13 years and I'm now 55. I have...

I acted like an adult today and had my MRI! Stable old lesions with no change. On my last MRI before Besremi I had a new one and it has shown improvement!!!!...

(See end for context of this plot) I've been on Rux since Apr '23. At my recent Dr visit I asked more about Rux. My Dr is experienced with it and has many...

For the past ten days or so I’ve been having really bad frontal headaches forehead, behind the eyes and over the front of head which seem to come from back of...

Many of you will have seen the Princess of Wales is having preventative chemotherapy for cancer. It must have been very difficult for her to speak about when...

Dear all After 18 months on Besremi my oncologist and I made the decision to move on and so am starting on Rux. In brief, I titrated up from 100 ug (Sep...

Hi all the saga continues another heam at my local hospital!Well here goes they had me on 45 mg of interferon 3 times a week everything fine until 3 weeks ago...

I posted about experiencing intermittent burning joint pain and I appreciated hearing everyone's responses. There were a few people who said they also had...

Is it ok just to stop taking hydroxycarbomide? I have and now worried! I have an appointment on the 1st of May to change to rux my bloods have always been not...

Hello, I have just been diagnosed with Intermediate Myelofibrosis, feeling very anxious and scared about my outlook, on day 3 of Ruxolitinib so far I seem to...

Good evening everyone. I’m enquiring if anyone has been contacted with an invitation to have a Spring Covid vaccination booster and if so, how many are or have...

Has anybody else experienced heart problems with an MPN?I have been having heart palpitations and more severe breathlessness than usual for about 6 months. An...

I haven’t posted for a while as things have gotten very complicated for me recently my partner was diagnosed with stomach cancer and around the same time I ran...

When I was first diagnosed with PV (age 59) my dr. had me do one phlebotomy (RBC 5.55, HCT 46.6, WBC 12, PLT 632 & ANC 9). He also discussed that guidelines...

Variants About 6-7 weeks ago I transferred from my local hematologist to an MPN specialist - a move I feel really good about. She has done some different...