Posts - MPN Voice | HealthUnlocked

MPN Voice

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All posts for May 2021

Blood test

Can anyone tell me please my latest bloods showed my MCV. 107 MCHC 310 My Haematologist wants to check them again but is waiting till my next appointment in...

Can anyone tell me please my latest bloods showed my MCV. 107 MCHC 310 My Haema...

SusieG60

•4 years ago

2 Replies

Sunscreen

The usual factor the consultant advises is factor 50 sunglasses and a cap or sunhat stay safe Scottish Terrier xx

The usual factor the consultant advises is factor 50 sunglasses and a cap or sun...

Scottishterrier

•4 years ago

1 Reply

Advice on bone/joint pain & Pegasys?

Hi friends! I’ve been having pain in my hands, forearms, shins and feet intermittently for the past month that comes on after Pegasys injections. Feels more...

Hi friends! I’ve been having pain in my hands, forearms, shins and feet intermi...

IrishSarah

•4 years ago

11 Replies

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Sun Protection

Hi..Can anyone recommend the best Sunscreen to use (I’m on Hydroxycarbamide) also any information on tanning products that are safe to use ... Thank you in...

Hi..Can anyone recommend the best Sunscreen to use (I’m on Hydroxycarbamide) als...

Hydranga18

•4 years ago

9 Replies

Bone marrow biopsy

Away for biopsy today, had one 10 years ago when they first discovered my high platelet level ! Memories of the procedure are coming back to me now 🙄 !

Away for biopsy today, had one 10 years ago when they first discovered my high ...

indy22

•4 years ago

9 Replies

Anyone have high mole count (>50)? Possible connection with non-driver mutation

Another possible avenue in my diagnosis process for potential triple-negative ET... Went to a new dermatologist who noticed I have more moles than the average...

Another possible avenue in my diagnosis process for potential triple-negative ET...

cmc_ufl

•4 years ago

24 Replies

Praise report

I have been seeing a hematologist for a few months now. Diagnosed with ET JAK+. My platelets started out at 800. Was started on a baby aspirin a day. I also...

I have been seeing a hematologist for a few months now. Diagnosed with ET JAK+. ...

Tingle20

•4 years ago

4 Replies

head aches

Hi there, I keep getting headaches. They appear in different parts of my head. It feels a bit like a vice as if my head is under pressure. My platelets are...

Hi there, I keep getting headaches. They appear in different parts of my head. I...

Faith33

•4 years ago

10 Replies

Today, has been a good day

So i made the effort to get off my bum and booked my myself a treat. A reflexology appt. First appt so go through the usual consultation of health and meds...

So i made the effort to get off my bum and booked my myself a treat. A reflexolo...

Marchhare7

•4 years ago

5 Replies

High Jak2 burden with Tet2 mutation

I was diagnosed with P-vera a few months ago. My bone marrow biopsy showed I have the Jak2 v617f mution at 88% allele burden, this sounds very high to me. I...

I was diagnosed with P-vera a few months ago. My bone marrow biopsy showed I ha...

Flynn2107

•4 years ago

14 Replies

Looking to pick your brains (for a little direction!)

Hi all, I am a little worried about my Dad and just wondered if anyone has any suggestions about where to go next.... I have PV and I know that they say that...

Hi all, I am a little worried about my Dad and just wondered if anyone has any ...

hansyhand

•4 years ago

7 Replies

Antibodies test

Morning all Thought I would ket you know, that I received my letter from the ONS this morning which states that the OmniPATH tm SARS-COV-2IgG test which is CE...

Morning all Thought I would ket you know, that I received my letter from the ONS...

Superwoman

•4 years ago

4 Replies

How to start a forum in my are.

Hi talking with consultant haematologist yesterday who agrees a forum for ET patients in our area would be great idea, its definitely needed. But how to go...

Hi talking with consultant haematologist yesterday who agrees a forum for ET pat...

Hidden

•4 years ago

10 Replies

Antibodies

I decided to do my second antibody test sooner rather than later as I’m meeting up with family over half term. Apparently a result greater than 0.8 U/mL means...

I decided to do my second antibody test sooner rather than later as I’m meeting ...

beetle

•4 years ago

14 Replies

MPN PV- Low RBC count

Hi all, Hope all doing good and able to manage their blood counts in this pandemic. I was doing well too, but now recent blood count shows drop in RBC . I was...

Hi all, Hope all doing good and able to manage their blood counts in this pandem...

neela2020

•4 years ago

2 Replies

Hi is there anyone who can tell me how to access MPN Assistant by Novartis.

Hi is there a UK equivalent such a useful tool that helps with side effect reporting 👍

Hi is there a UK equivalent such a useful tool that helps with side effect repor...

Hidden

•4 years ago

2 Replies

Folic Acid Tablets

Has anyone had any problems taking Folic Acid Tablets - 5mg. I have only taken for 3 days - one a day but after one day I have had diarrhoea- nausea and...

Has anyone had any problems taking Folic Acid Tablets - 5mg. I have only taken ...

Sodabread

•4 years ago

7 Replies

I'm recovering from a Venus sinus thrombosis which caused a significant clot and bleed in my head

I also suffer with loud tinnitus is there anyone with similar experience.

Hidden

•4 years ago

5 Replies

Advice re HRT

I am 49 and was diagnosed with ET in 2008 but probably had it earlier as high platelets with first pregnancy in 2003. My initial playlets were 800 but have...

I am 49 and was diagnosed with ET in 2008 but probably had it earlier as high pl...

Rebelred

•4 years ago

29 Replies

Searching for MPN Specialist

I live in Seattle, WA, USA and there are two identified MPN specialists, however, the ratings for these doctors could be better. There is someone in Boston...

I live in Seattle, WA, USA and there are two identified MPN specialists, however...

givingITMybest

•4 years ago

10 Replies

AstraZeneca!!!

Is anyone else more worried now who have had AstraZeneca vaccinations ?

indy22

•4 years ago

17 Replies

Hip Replacement Surgery with MPN’s essentially MF etc ?

Good Morning Folks, I hope you are all doing okay and for those of us in the UK the rain ☔️ and wind of late has stopped.. 😁 I’m South West and the Sun is...

Good Morning Folks, I hope you are all doing okay and for those of us in the UK...

pontygirl

•4 years ago

9 Replies

Maria syoid

Has anyone else had a private message from this lady? She says she is a doctor and can help me deal with my illness. I haven’t posted any woes so I’m...

Has anyone else had a private message from this lady? She says she is a doctor a...

Wyebird

•4 years ago

11 Replies

Antibody test

Testing for All have now informed me that my sample was “too old” although they say a sample must be analysed within three days of collection and they sent me...

Testing for All have now informed me that my sample was “too old” although they...

beetle

•4 years ago

2 Replies

Blood cancer uk research

Bloodcancer.org.uk has a very interesting article on research into how people with a number of blood cancers, including MPN’s (yayyyyy) are responding to the...

Bloodcancer.org.uk has a very interesting article on research into how people wi...

jillydabrat

•4 years ago

8 Replies

2 questions - Do the vaccines work on blood cancers? What can we take for menopause symptoms?

Soooo are we protected or not after having both jabs? I have read reports and seen interviews on tv that say some people with blood cancer have no immunity....

Soooo are we protected or not after having both jabs? I have read reports and s...

Louise2870

•4 years ago

5 Replies

I cannot believe what just happened to my husband

I am horrified by what has just happened to my husband. He had Bungle on the green for her morning business when Bungle saw the warden and the cleaner from...

I am horrified by what has just happened to my husband. He had Bungle on the gr...

jillydabrat

•4 years ago

14 Replies

Lorraine show

Did anybody see the Lorraine show as they had a woman on who had a form of blood cancer and her antibody test showed no antibodies against Covid. She said...

Did anybody see the Lorraine show as they had a woman on who had a form of blood...

jillydabrat

•4 years ago

4 Replies

Risk of second stroke can be reduced with prevention efforts based on cause of first stroke

Post by MPN-MATE Admin » Wed May 26, 2021 3:07 pm Afternoon again... :D Just another timely reminder about about some of the risks of having a Transient...

Post by MPN-MATE Admin » Wed May 26, 2021 3:07 pm Afternoon again... :D Just...

socrates_8

•4 years ago

2 Replies

Methotrexate users have a reduced immune response to mRNA COVID-19 vaccine

Post by MPN-MATE Admin » Wed May 26, 2021 2:37 pm Afternoon all... :D Just recently discovered this article concerning patients, (such as myself), who...

Post by MPN-MATE Admin » Wed May 26, 2021 2:37 pm Afternoon all... :D Just r...

socrates_8

•4 years ago

4 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2021

Blood test

Sunscreen

Advice on bone/joint pain & Pegasys?

Sun Protection

Bone marrow biopsy

Anyone have high mole count (>50)? Possible connection with non-driver mutation

Praise report

head aches

Today, has been a good day

High Jak2 burden with Tet2 mutation

Looking to pick your brains (for a little direction!)

Antibodies test

How to start a forum in my are.

Antibodies

MPN PV- Low RBC count

Hi is there anyone who can tell me how to access MPN Assistant by Novartis.

Folic Acid Tablets

I'm recovering from a Venus sinus thrombosis which caused a significant clot and bleed in my head

Advice re HRT

Searching for MPN Specialist

AstraZeneca!!!

Hip Replacement Surgery with MPN’s essentially MF etc ?

Maria syoid

Antibody test

Blood cancer uk research

2 questions - Do the vaccines work on blood cancers? What can we take for menopause symptoms?

I cannot believe what just happened to my husband

Lorraine show

Risk of second stroke can be reduced with prevention efforts based on cause of first stroke

Methotrexate users have a reduced immune response to mRNA COVID-19 vaccine

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