Posts - MPN Voice | HealthUnlocked

MPN Voice

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All posts for March 2021

Urinary issues

Hi everyone here’s hoping you have some advice. I’m on ruxalitanib for my MF and doing ok apart from repeated urinary infections. I wondered if anyone else had...

Hi everyone here’s hoping you have some advice. I’m on ruxalitanib for my MF and...

hollymae

•4 years ago

17 Replies

Surgery

Hi everyone, I have ET and will be having surgery to have part of my colon removed. I have severe diverticulitis and in alot of pain. I had a bad bout...

Hi everyone, I have ET and will be having surgery to have part of my colon rem...

Wilma66

•4 years ago

45 Replies

Platelet count

Platelet count down to 420 pleased with that and I also get to reduce my hydroxcycarbamide back down to 500mg. Well pleased with that.

Platelet count down to 420 pleased with that and I also get to reduce my hydroxc...

ciye

•4 years ago

10 Replies

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ET+JAK2 and about to start Hydroxycarbamide

Hi everyone, I have had ET for over 10 years and my platelets have never gone above 600. My recent bloodworks places them at 475 and everything else is fine. I...

Hi everyone, I have had ET for over 10 years and my platelets have never gone ab...

Cassandra61

•4 years ago

25 Replies

COVID19!

Hello MPN brothers and sisters, just to share this situation. My sister-in-law works in school and three weeks ago she was vaccinated with first doze of AZ and...

Hello MPN brothers and sisters, just to share this situation. My sister-in-law w...

light

•4 years ago

10 Replies

Third phone call this week with Proff.

Good morning friends lm due to speak with my doctor this week Thursday and still finding it difficult to not sound over emotional with physical complaints...

Good morning friends lm due to speak with my doctor this week Thursday and still...

Hidden

•4 years ago

6 Replies

Interesting article on protecting ourselves from sun

Now the lovely weather has arrive in UK. thought you might be interested in this ,protection against sun and a tasty snack !!!...

Now the lovely weather has arrive in UK. thought you might be interested in thi...

Mostew

•4 years ago

10 Replies

Worried about drop in platelet count

Hi my MPN family Throughout lockdown I have had my bloods taken at my GP's and then a telephone consultation with my haematologist a week later. I have no...

Hi my MPN family Throughout lockdown I have had my bloods taken at my GP's and t...

jillydabrat

•4 years ago

12 Replies

Covid Antibody study

I have been a participant in UK biobank for many years now and have just received an invitation to join their Covid Antibody study which I have agreed to. Is...

I have been a participant in UK biobank for many years now and have just receive...

eastwood1932

•4 years ago

9 Replies

Symptom Relief. With HU

Hello everyone. Hope all are doing well. I have Pv Jal2+ and just started HU about 3 weeks ago at 1000Mg 7 days a week. My question is anyone getting symptom...

Hello everyone. Hope all are doing well. I have Pv Jal2+ and just started HU abo...

Ridenez

•4 years ago

16 Replies

Thanks for the encouragement

Just replying to all those who offered treatments for the itching and other thoughts. Love this list for all of the input and encouragement to those newly...

Just replying to all those who offered treatments for the itching and other thou...

AEROGUY

•4 years ago

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Great news for people living with blood cancer sufferers (from Blood Cancer UK)

I'm sure BCUK won't mind me sharing this with you, but at last we seem to be getting recognition John BREAKING NEWS – The Government agrees to prioritise...

I'm sure BCUK won't mind me sharing this with you, but at last we seem to be get...

Ovingite

•4 years ago

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Good news from Blood Cancer UK

Just had an email from blood cancer UK to say that Westminster today said that all household members of a person with blood cancer will be given priority for...

Just had an email from blood cancer UK to say that Westminster today said that a...

jillydabrat

•4 years ago

Be the first to reply

Ruxolitinib and Anaemia

I'm struggling with heavy anaemia and very very low platelets after four months of Ruxolitinib. It's not pleasant at all, and I need blood transfusions every...

I'm struggling with heavy anaemia and very very low platelets after four months ...

RobinBrum

•4 years ago

11 Replies

Shielding and Furlough.

Hi all, I've just seen a post from Maz about a letter for Gp's regarding people with MPN's being clinically vulnerable and how to add them to the shielding...

Hi all, I've just seen a post from Maz about a letter for Gp's regarding people ...

RobPV

•4 years ago

4 Replies

End of shielding

Hi all , How is everybody feeling about the shielding coming to an end on April 1st ? I myself have been shielding and have been off work for nearly a year...

Hi all , How is everybody feeling about the shielding coming to an end on April...

dgk70

•4 years ago

9 Replies

Pegasys- How long to see results?

Hi gang, hope you’re all well! I’ve had my 3rd dose of 90mg Pegasys (ET JAK2+) and curious to know how long it took others in the same boat to see results?...

Hi gang, hope you’re all well! I’ve had my 3rd dose of 90mg Pegasys (ET JAK2+) ...

IrishSarah

•4 years ago

39 Replies

CV JAB

Has anyone had extreme body inflammation after their CV jab,l have mentioned this to my clinical support who no doubt mentioned it to my consultant who l...

Has anyone had extreme body inflammation after their CV jab,l have mentioned t...

Hidden

•4 years ago

3 Replies

Feeling Lucky

New to the group. Male 73 diagnosed Oct '20. Had sepsis 3 yrs ago. Been treated for suspected heart issues since then with all the std heart meds by...

New to the group. Male 73 diagnosed Oct '20. Had sepsis 3 yrs ago. Been treated ...

AEROGUY

•4 years ago

12 Replies

A dog's desperation

The dogs were attracted to the squeals of the mice as I shoved a dowel up their skirt or, unfortunately to the male mice, up their bottom. I have promised...

The dogs were attracted to the squeals of the mice as I shoved a dowel up their ...

jillydabrat

•4 years ago

7 Replies

Hydroxycarbamide, Sex and Condoms

Yesterday Maz threw a curveball into a discussion saying that the new MPN Voice leaflet (and I see McMillan Cancer Care) now command : If you are...

Yesterday Maz threw a curveball into a discussion saying that the new MPN Voice ...

Runner999

•4 years ago

51 Replies

Had second oxford vaccine yesterday

Et and jak pos, for 12 years.Had vaccine, today sore arm, and temp, took paracetamol, only mild side effects. So happy looking forward to getting a bit of...

Et and jak pos, for 12 years.Had vaccine, today sore arm, and temp, took parace...

Jbut

•4 years ago

5 Replies

Due for my prolia...

Hi everyone, am due for my prolia injection today but want to talk to my Dr. I have read MPN May increase risk of fractures but I hate this prolia as if you...

Hi everyone, am due for my prolia injection today but want to talk to my Dr. I h...

Cabert

•4 years ago

6 Replies

Thrombotic Events in Patients With Polycythemia Vera and Essential Thrombocythemia

« Several lines of evidence suggest other factors contribute to the propensity to develop thrombosis in PV and ET aside from elevations in hematologic...

« Several lines of evidence suggest other factors contribute to the propensity t...

Manouche

•4 years ago

16 Replies

Blood Work Back - Sigh Not good News

Hope this finds everyone OK. Was officially diagnosed with ET post my BMB in December - although my platelets have been high for about 7 years - at first high...

Hope this finds everyone OK. Was officially diagnosed with ET post my BMB in Dec...

Solyesh

•4 years ago

8 Replies

Spike protein antibody test after vaccine

Hi All, I’ve had both of my vaccines but due to the current discussions about whether the vaccine works in people with blood cancer as well as in people...

Hi All, I’ve had both of my vaccines but due to the current discussions about wh...

Nay123

•4 years ago

8 Replies

Is it safe to take Co codamol

Prescribed co codamol for pain relief at A&E (neck pain long story) When I got home read the data sheet that came with medication. Possible side effects are...

Prescribed co codamol for pain relief at A&E (neck pain long story) When I got ...

Grizly

•4 years ago

5 Replies

Polycythemia Vera (PV): Update on Emerging Treatment Options

« Currently, in PV treatment, several molecules have been tested or are under investigation. At present, the drug that has shown the most encouraging results...

« Currently, in PV treatment, several molecules have been tested or are under in...

Manouche

•4 years ago

5 Replies

2nd covid19 jab

Hi just not long had a text threw been book in for my 2nd covid19 jab 28th of March Sunday bit early than going in 12 weeks which I had my 1st on the 29th...

Hi just not long had a text threw been book in for my 2nd covid19 jab 28th of Ma...

Jody00

•4 years ago

16 Replies

Jak2 confirmation

Hi so I've just been diagnosed with ET getting a positive jak2 result. I'm feeling slightly overwhelmed and a little in shock. Having a form of lupus I was...

Hi so I've just been diagnosed with ET getting a positive jak2 result. I'm feeli...

106776

•4 years ago

2 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2021

Urinary issues

Surgery

Platelet count

ET+JAK2 and about to start Hydroxycarbamide

COVID19!

Third phone call this week with Proff.

Interesting article on protecting ourselves from sun

Worried about drop in platelet count

Covid Antibody study

Symptom Relief. With HU

Thanks for the encouragement

Great news for people living with blood cancer sufferers (from Blood Cancer UK)

Good news from Blood Cancer UK

Ruxolitinib and Anaemia

Shielding and Furlough.

End of shielding

Pegasys- How long to see results?

CV JAB

Feeling Lucky

A dog's desperation

Hydroxycarbamide, Sex and Condoms

Had second oxford vaccine yesterday

Due for my prolia...

Thrombotic Events in Patients With Polycythemia Vera and Essential Thrombocythemia

Blood Work Back - Sigh Not good News

Spike protein antibody test after vaccine

Is it safe to take Co codamol

Polycythemia Vera (PV): Update on Emerging Treatment Options

2nd covid19 jab

Jak2 confirmation

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