Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for January 2020

Polycythaemia vera, Hydroxycarbamide and possible side-effects

Hi all, I am 63 and have been on Hydroxycarbamide, aspirin, cetirizine and omeprazole since 2017 when I was diagnosed with PV. I am plagued with urinary...

Hi all, I am 63 and have been on Hydroxycarbamide, aspirin, cetirizine and omep...

Barb17

•5 years ago

3 Replies

MPN Voice Patients' Forums - four forums confirmed

We are very pleased to announce details for four MPN Voice patients’ forums in Chippenham, Oxford, Galway and Chester. You are very welcome to attend any of...

We are very pleased to announce details for four MPN Voice patients’ forums in C...

Mazcd

Partner•5 years ago

2 Replies

War on blood Car -t cells

Did any one watch BBC war on blood and see how incredible brave the two unsuccessful patient faced their pain and subsequent deaths from Leukaemia ....

Did any one watch BBC war on blood and see how incredible brave the two unsucce...

catkinspolymer

•5 years ago

18 Replies

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Does CBD OIL cause FATIGUE?

Dear Folks, I’ve been trying to find a cause for my fatigue other than this cancer. It’s having a large effect on my quality of life. The absolute last thing...

Dear Folks, I’ve been trying to find a cause for my fatigue other than this canc...

katiewalsh

•5 years ago

14 Replies

PV and numbness in feet

Hi everyone, I'm wondering whether others who have PV (or maybe ET too) are experiencing permanent numbness in their feet?

Hi everyone, I'm wondering whether others who have PV (or maybe ET too) are expe...

souplover

•5 years ago

13 Replies

ET with or without jak2? And black seed cure?

Hi, i am worried and confused , i have high platelets 500-850 fluctuating since 5 months , i ws jak2 positive by one lab and negative from another lab , dont...

Hi, i am worried and confused , i have high platelets 500-850 fluctuating since ...

Aojai

•5 years ago

38 Replies

WBC inspecting RBCs

« Really amazing. In this time lapse video we observe a white blood cell (WBC) of the human immune system inspecting red blood cells (RBCs) & searching for...

« Really amazing. In this time lapse video we observe a white blood cell (WBC) o...

Manouche

•5 years ago

3 Replies

Latest Cancer Study

I just wondered if anyone else has read the findings of the cancer study which was on here a couple if days ago. As someone with ET, I am quite concerned that...

I just wondered if anyone else has read the findings of the cancer study which w...

Trueblue8

•5 years ago

4 Replies

Long term Venus ulcer advise

I have Polyceimia Vera but take warfarin for life.. now have been advised to come off Hydrea as have developed leg ulcers getting bigger.. very painful and...

I have Polyceimia Vera but take warfarin for life.. now have been advised to com...

Godfata

•5 years ago

3 Replies

Diagnosed essential thrombocytosis new

Hi guys so today I just got new am jak2 positive I am devastated crying o dont know what to think What does jak2 positive mean. An worrying about life...

Hi guys so today I just got new am jak2 positive I am devastated crying o dont k...

Irishgal12

•5 years ago

91 Replies

Ongoing Research Poised to Add Options for Myelofibrosis Treatment

Post by MPN-MATE Admin » Wed Jan 29, 2020 10:14 am Hey all... :D I simply found this an optimistic and encouraging from the perspective of MF sufferers, and...

Post by MPN-MATE Admin » Wed Jan 29, 2020 10:14 am Hey all... :D I simply fou...

socrates_8

•5 years ago

1 Reply

i be new here

just wondering if some people try diet exercise etc instead of medication and what results ensued. thank you.

just wondering if some people try diet exercise etc instead of medication and wh...

bargearse777

•5 years ago

6 Replies

BMB was fine. Thank you all for your good wishes

Thank you all for wishing me well with the BMB yesterday. The procedure went OK, helped by 1 gm lorazepam and all the entenox( gas and air - nitrous oxide) I...

Thank you all for wishing me well with the BMB yesterday. The procedure went OK,...

Rachelthepotter

•5 years ago

12 Replies

Lousy Veins and Portacaths

Hi everyone I didn't have a great check-up yesterday - My hematocrit is refusing to budge after taking Hydroxycarbamide since the beginning of December. The...

Hi everyone I didn't have a great check-up yesterday - My hematocrit is refusing...

Kari1961

•5 years ago

20 Replies

Combined ruxolitinib and pegasys therapy for MF and PV gives great results. Danish phase 2 study Jan 2020 ( ruxopeg)

Hi I’ve pasted in the abstract of the Danish ruxopeg study instead of just the link, as it’s such an important result. The combination of ruxolitinib and...

Hi I’ve pasted in the abstract of the Danish ruxopeg study instead of just the l...

Rachelthepotter

•5 years ago

9 Replies

Et leg cramps

Anyone with et experience leg cramps like dead leg sensation pins and needles?? I am not diagnosed pending investigation but linking everything to it

Anyone with et experience leg cramps like dead leg sensation pins and needles?? ...

Irishgal12

•5 years ago

21 Replies

Drop in platelets

Hi again my MPN family. Just had an exhausting 3 month check up with Haematology. The usual receptionist was off today so I checked in and she put my file...

Hi again my MPN family. Just had an exhausting 3 month check up with Haematol...

jillydabrat

•5 years ago

3 Replies

Myelofibrosis and travel insurance.

Anyone with Myelofibrosis, who has had transfusion,been successful obtaining travel insurance. I’m longing to take my granddaughter to Orlando to Disney...

Anyone with Myelofibrosis, who has had transfusion,been successful obtaining tra...

Mysi

•5 years ago

5 Replies

MPN symptoms

Is nail bed turning color is a symptom of MPN? What are other common symtoms we should aware of?

Is nail bed turning color is a symptom of MPN? What are other common symtoms we ...

neela2020

•5 years ago

10 Replies

Latest diagnostic criteria for MPNs from Cancer.gov

https://www.cancer.gov/types/myeloproliferative/hp/chronic-treatment-pdq?cid=eb_govdel#section/_110 This is a link to the most recent info on MPNs from...

https://www.cancer.gov/types/myeloproliferative/hp/chronic-treatment-pdq?cid=eb_...

Rachelthepotter

•5 years ago

13 Replies

MPN-MATE FIRST AWARENESS PODCAST

Post by MPN-MATE Admin » Mon Jan 27, 2020 12:58 am Hey guys... :D Well, because I am really not a Techie at all, it has taken me sone time to find out...

Post by MPN-MATE Admin » Mon Jan 27, 2020 12:58 am Hey guys... :D Well, bec...

socrates_8

•5 years ago

7 Replies

Recommendation on Haematologist in London

Hi, I am travelling to London for some work and plan to see any good Haematologist for ET. I am male, 36 years of age and its been 2 years since diagnosed with...

Hi, I am travelling to London for some work and plan to see any good Haematologi...

MrThara

•5 years ago

16 Replies

WBC with PV

Hi all, Has anyone had fluctuations in white blood counts? My husband has PV, diagnosed 4 yrs ago and his WBC are usually in the range of 8. His last CBC...

Hi all, Has anyone had fluctuations in white blood counts? My husband has PV, di...

Pinkandgreen

•5 years ago

28 Replies

Results from Gastrointestinal mapping

Hey! I am recently diagnosed with ET. I have mapped my gut-biome and received some really interesting results. I am curious if anyone else with an MPN has done...

Hey! I am recently diagnosed with ET. I have mapped my gut-biome and received so...

Bohus

•5 years ago

15 Replies

ET diagnosis without biopsy

Hi, I have just been given a diagnosis of ET, and have to decide on treatment choice: Inferon or Hydroxycarbamide. I have already been taking aspirin and have...

Hi, I have just been given a diagnosis of ET, and have to decide on treatment ch...

Minu68

•5 years ago

35 Replies

OA and ET

Hi All, just a quick question to ask If anyone knows if Oestperosis is related in anyway with ET jak2 pos as I've in the last few months developed this in the...

Hi All, just a quick question to ask If anyone knows if Oestperosis is related i...

tina6

•5 years ago

19 Replies

Essential thrombocytosis and work

Are most of you with et able to work?

Irishgal12

•5 years ago

43 Replies

GETTING A SECOND OPINION...?

Post by MPN-MATE Admin » Fri Jan 24, 2020 4:16 am Hey everyone... :D Just found this article provided some sound advice when it comes to any one considering...

Post by MPN-MATE Admin » Fri Jan 24, 2020 4:16 am Hey everyone... :D Just fou...

socrates_8

•5 years ago

18 Replies

The new CAR-T Therapy

Exciting news for cancer patients brings hope for everyone 👍

PhilReade

•5 years ago

17 Replies

Vitamins and Hydroxycarbamide

Was at the Christie yesterday I’ve been taking vitamins to help me with joint pain and fatigue I got a telling off regards taking Turmeric yesterday it...

Was at the Christie yesterday I’ve been taking vitamins to help me with joint pa...

PhilReade

•5 years ago

28 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2020

Polycythaemia vera, Hydroxycarbamide and possible side-effects

MPN Voice Patients' Forums - four forums confirmed

War on blood Car -t cells

Does CBD OIL cause FATIGUE?

PV and numbness in feet

ET with or without jak2? And black seed cure?

WBC inspecting RBCs

Latest Cancer Study

Long term Venus ulcer advise

Diagnosed essential thrombocytosis new

Ongoing Research Poised to Add Options for Myelofibrosis Treatment

i be new here

BMB was fine. Thank you all for your good wishes

Lousy Veins and Portacaths

Combined ruxolitinib and pegasys therapy for MF and PV gives great results. Danish phase 2 study Jan 2020 ( ruxopeg)

Et leg cramps

Drop in platelets

Myelofibrosis and travel insurance.

MPN symptoms

Latest diagnostic criteria for MPNs from Cancer.gov

MPN-MATE FIRST AWARENESS PODCAST

Recommendation on Haematologist in London

WBC with PV

Results from Gastrointestinal mapping

ET diagnosis without biopsy

OA and ET

Essential thrombocytosis and work

GETTING A SECOND OPINION...?

The new CAR-T Therapy

Vitamins and Hydroxycarbamide

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