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MPN Voice

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NCA033989 Trial - 3rd Infusion Update (ET+CALR1)

Good morning! I'm happy to report that I had my third infusion last week, and my platelets are at 265,000 and seem to be stabilizing. My WBC, RBC, and LDH...

Good morning! I'm happy to report that I had my third infusion last week, and m...

Zeppelin11

•5 hours ago

1 Reply

Not great news :-( ASXL1

Hello all. Looking for some insight or maybe just a glimmer of light today. So, I was diagnosed ET at 47, progressed to PV at 53 or so. Did Peg, then Besremi...

Hello all. Looking for some insight or maybe just a glimmer of light today. So...

Miriammusic

•5 hours ago

3 Replies

Pre SCT conditioning and hair loss.

Hi This is a question for the gents who have been through an SCT - whilst I quite expect to lose my head hair as a result of the chemo, should I expect to...

Hi This is a question for the gents who have been through an SCT - whilst I qui...

PT99

•6 hours ago

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MPN ET side effects

I was diagnosed in 2019 with ET and started my meds then, hydroxy and aspirin were perscribed for me then. Since or i suppose before then i would go numb down...

I was diagnosed in 2019 with ET and started my meds then, hydroxy and aspirin we...

BonnieLunar

•8 hours ago

2 Replies

Happy Tuesday

Just want to thank everyone for all your support! I got great news yesterday. Will be saved from the dreaded MRI! I asked the neurologist about it since I...

Just want to thank everyone for all your support! I got great news yesterday. ...

KLCTJC

•9 hours ago

2 Replies

moving house

Hello, I have ET and am being very well looked after by the team at the Churchill in Oxford. Later this year I'll be moving house and the nearest hospital will...

Hello, I have ET and am being very well looked after by the team at the Churchil...

Ginevra

•13 hours ago

2 Replies

Herrick

l have ETV167F since 2015 - l have asked Heamotology for an update on Allele Burden . When diagnosed just after had aBMB which showed positive but weak. On...

l have ETV167F since 2015 - l have asked Heamotology for an update on Allele Bur...

Herrick

•1 day ago

5 Replies

Ruxo effective dosage levels

I’ve read that Ruxo dosage needs to be 20-25mg x 2 daily in order to reduce the risk of disease progression. Does everyone agree? Some people seem to do well...

I’ve read that Ruxo dosage needs to be 20-25mg x 2 daily in order to reduce the ...

Paul123456

•1 day ago

2 Replies

Could I take Collagen supplements with PV

Hi everyone I want to ask if anyone is taking collagen supplements with PV . I, would like to try this supplement to see if it can strengthen my hair and...

Hi everyone I want to ask if anyone is taking collagen supplements with PV . ...

Blonde25

•1 day ago

2 Replies

bone pain

Hi all, Looking at other peoples experience of above. I have been experiencing bone pain on and off for some years, more recently getting more regular and in...

Hi all, Looking at other peoples experience of above. I have been experiencing...

Grendall

•1 day ago

5 Replies

Rux and constipation

Thanks to everyone for the very useful advice! Something worked! I’m giving credit to fruit with skin on - including kiwi! Thanks again.

Thanks to everyone for the very useful advice! Something worked! I’m giving cred...

Jcd25

•1 day ago

1 Reply

low dose Ruxolitinib

Hi I have been taking Ruxolitinib for 2years. The dose was decreased from 10mg to 5mg once daily, I was pottering along quite fine . Then my h/c lowered...

Hi I have been taking Ruxolitinib for 2years. The dose was decreased from 10m...

Bobadog

•2 days ago

3 Replies

facial acne

I am ET JAK2 and take Hydroxycarbonide and aspirin I was diagnosed with this in June 2019 for the last few months I have been getting spots on my face and I...

I am ET JAK2 and take Hydroxycarbonide and aspirin I was diagnosed with this in...

Tilly_Rose

•2 days ago

5 Replies

MF Pegasys and fatigue / body pain

Hello I have had MF for about 7 or 8 years, previous ET. I have been on Pegasys for about 18 months now and was on lower dose of 45mcg every 2 weeks. This has...

Hello I have had MF for about 7 or 8 years, previous ET. I have been on Pegasys ...

Mrs_Average

•2 days ago

6 Replies

Update

I’ve had my blood tests/results this week. Very pleased that I am currently stable. All results in normal levels except haemoglobin which was 104, a lot higher...

I’ve had my blood tests/results this week. Very pleased that I am currently stab...

lizzziep

•2 days ago

14 Replies

chronic anxiety

Steadily getting worse & worse with anxiety/depression. Woke up on Saturday Feeling terrible Unable to cope & wanting to vanish. Had a tough time in 2024...

Steadily getting worse & worse with anxiety/depression. Woke up on Saturday Fee...

Pappafraser

•2 days ago

22 Replies

Meet with transplant team

Hi all, hope everyone is well. I have an upcoming appointment to meet with the transplant team (1st time). What should I expect? All I know is that I will get...

Hi all, hope everyone is well. I have an upcoming appointment to meet with the t...

Charm33

•2 days ago

19 Replies

Covid jab

Looking for thoughts please. I’ve been diagnosed with Quadruple negative thrombocytosis since 2022, started Pegasys July 24 and recently switched to Besremi...

Looking for thoughts please. I’ve been diagnosed with Quadruple negative thromb...

Milokay

•2 days ago

25 Replies

Sore eyes

Hi does anyone ever get itchy irritating sore eyes with this ?

VTAR24

•2 days ago

4 Replies

Familial blood disorder question

In an interesting turn of events, my Mom (75f) just had preliminary cytology results come back indicating B cell related lymphoma or leukemia. They are...

In an interesting turn of events, my Mom (75f) just had preliminary cytology res...

originalmyndzi

•3 days ago

7 Replies

Pause Ruxolitinib

Hello Friends, I hope you are all well. I need your advise for the following situation: I am having a graft surgery on my leg in a few days that requires...

Hello Friends, I hope you are all well. I need your advise for the following sit...

Arami

•4 days ago

15 Replies

ET and cold showers!

Hi. 50 years ET patient writting here. Have been diagnosed for around 3 years now and carrying my anchor patiently:) Kind of stumbled on Wim Hof around the...

Hi. 50 years ET patient writting here. Have been diagnosed for around 3 years no...

SimSalaBim75

•4 days ago

8 Replies

Persistent headaches and medication choices

Hi All. I've had ET JAK2 positive for at least 22 years. I've done very well and have been well controlled on Pegasys for 8 years with no history of major...

Hi All. I've had ET JAK2 positive for at least 22 years. I've done very well a...

Nature_for_Life

•5 days ago

12 Replies

3rd Month on Besremi

Had my once-every-four months appointment with my MPN specialist. He is quite happy with the seamless switch to Bes fromm Peg (as am I). All bloods came back...

Had my once-every-four months appointment with my MPN specialist. He is quite h...

Solyesh

•5 days ago

13 Replies

Update 8.8.5 More interesting news

I finally got my MRI report back after 10 days. The local hospital I went to is very short-staffed in radiology. They are taking an excessive amount of time...

I finally got my MRI report back after 10 days. The local hospital I went to is...

hunter5582

•6 days ago

33 Replies

Does Besremi cause problems with teeth and hair loss

Ive been on Pegasys for over a year but have switched to Besremi in December. I feel like my hair has got a lot thinner and a bit of one of my front teeth has...

Ive been on Pegasys for over a year but have switched to Besremi in December. I ...

Scarlett500

•6 days ago

6 Replies

UTI as a side effect of myelofibrosis treatment with Ruxolitinib

Hello everyone! Perhaps someone has experienced such a side effect during treatment (in my case Ruxolitinib), as UTI. My symptoms resemble cystitis with...

Hello everyone! Perhaps someone has experienced such a side effect during treatm...

lina-rowland1

•6 days ago

19 Replies

Pegasys shortage: Action taken by Health Canada

Action taken by Health Canada To help mitigate the shortage of PEGASYS in Canada, Health Canada has permitted the exceptional, temporary importation and sale...

Action taken by Health Canada To help mitigate the shortage of PEGASYS in Canad...

Manouche

•6 days ago

1 Reply

Sharp rise in Haematocrit

All, Even though I'm on hydroxycarbamide my Haematocrit level jumped from 0.45 to 0.5 in the space of ten weeks. Has anyone else had a sharp rise.

All, Even though I'm on hydroxycarbamide my Haematocrit level jumped from 0.45...

MarkD6701

•7 days ago

8 Replies

Another Excellent Appt at Guys

Heartfelt gratitude to the wonderful team at Guys hospital. From bone marrow biopsy to results and consultation that took place today. Feel so very well...

Heartfelt gratitude to the wonderful team at Guys hospital. From bone marrow bio...

RubyTea

•7 days ago

10 Replies

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Posts - MPN Voice | HealthUnlocked

MPN Voice

NCA033989 Trial - 3rd Infusion Update (ET+CALR1)

Not great news :-( ASXL1

Pre SCT conditioning and hair loss.

MPN ET side effects

Happy Tuesday

moving house

Herrick

Ruxo effective dosage levels

Could I take Collagen supplements with PV

bone pain

Rux and constipation

low dose Ruxolitinib

facial acne

MF Pegasys and fatigue / body pain

Update

chronic anxiety

Meet with transplant team

Covid jab

Sore eyes

Familial blood disorder question

Pause Ruxolitinib

ET and cold showers!

Persistent headaches and medication choices

3rd Month on Besremi

Update 8.8.5 More interesting news

Does Besremi cause problems with teeth and hair loss

UTI as a side effect of myelofibrosis treatment with Ruxolitinib

Pegasys shortage: Action taken by Health Canada

Sharp rise in Haematocrit

Another Excellent Appt at Guys

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