Posts - MPN Voice | HealthUnlocked

MPN Voice

10,832 members•15,126 posts

All posts for August 2020

New to thrombocytosis..

Hi all. I'm a newly diagnosed thrombocytosis patient just beginning my quest for info. I've had a terrible itch with tiny blisterlike bumps which eventually...

Hi all. I'm a newly diagnosed thrombocytosis patient just beginning my quest fo...

Mollymag2

•4 years ago

22 Replies

Severe COVID-19 Infection in Patients With Hematological Disorders Receiving Chemo- or Immunotherapy

TAKE-HOME MESSAGE This retrospective cohort study identified risk factors for COVID-19 severity and outcomes in 55 patients with benign (N=3) and malignant...

TAKE-HOME MESSAGE This retrospective cohort study identified risk factors for C...

JT_Marlin

•4 years ago

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Is Anyone using Reblozyl (luspatercept) for anemia due to MPN/ Hydroxyurea?

Hi everyone, I've been taking Aranesp injections for 2 years for severe anemia due to myelofibrosis/ET and also side effects of hydroxy. The Aranesp stopped...

Hi everyone, I've been taking Aranesp injections for 2 years for severe anemia d...

goodluckjoe

•4 years ago

5 Replies

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DR SCHERBER'S – DIET, EXERCISE, & MINDFULNESS – TO AID MPN PATIENT'S BY REDUCING INFLAMMATION

Post by MPN-MATE Admin » Mon Aug 10, 2020 11:00 am Morning all... :D This is a bit of a follow up to my last Posting concerning the benefits of an...

Post by MPN-MATE Admin » Mon Aug 10, 2020 11:00 am Morning all... :D This i...

socrates_8

•4 years ago

8 Replies

My first phlebotomy PV JAK2 +

So Friday I was so scared of having the procedure and yet the staff were amazing and hardly felt any pain with it. I did however faint briefly so they stopped...

So Friday I was so scared of having the procedure and yet the staff were amazing...

Mpncoda

•4 years ago

3 Replies

Just diagnosed with ET calr positive 39 yr old male

Hi everyone, this is all new to me. I had a heart attack out of the blue in July 2020. After further blood tests I was found by Cambridge Addenbrookes...

Hi everyone, this is all new to me. I had a heart attack out of the blue in Jul...

Peato

•4 years ago

17 Replies

Immunotherapy for MPNs presentation

Here is another of the videos from the MPN Patient Forum. Just watched it and it is really informative. Very comprehensible and informative regarding CALR...

Here is another of the videos from the MPN Patient Forum. Just watched it and i...

hunter5582

•4 years ago

4 Replies

Sweats

Hi All Just wanted to put a question out there? Does any of you suffer with body sweats? I have had this for many years and can’t remember if it was as bad...

Hi All Just wanted to put a question out there? Does any of you suffer with bo...

Gunner73

•4 years ago

2 Replies

Ocular Migraine

Would like to hear from others with PV who have experienced ocular migraines. What were they like? What did you experience? The ophthalmologist thinks I may...

Would like to hear from others with PV who have experienced ocular migraines. W...

hunter5582

•4 years ago

31 Replies

Is this ET related Pruritus?

Hi gang, Tracking my symptoms for my MPN specialist to review on next visit, and the frequent itching/burning sensation I have is on the list. It’s completely...

Hi gang, Tracking my symptoms for my MPN specialist to review on next visit, an...

IrishSarah

•4 years ago

30 Replies

Critical illness claim

Hi I have myeloproliferative neoplasm, has anyone successfully claim on their critical illness cover with legal and general company , as I’m having difficulty...

Hi I have myeloproliferative neoplasm, has anyone successfully claim on their cr...

Kimmy53

•4 years ago

13 Replies

PV Jak2+ and fluid retention

Hi all haven't been on here for a long time, In February I started getting fluid retention in both legs and feet, I was prescribed Furusamide but it doesn't...

Hi all haven't been on here for a long time, In February I started getting fluid...

Chez1947

•4 years ago

2 Replies

ENT problem

Constant pain in eye, rubing tears, Headach,ear ache, and pain in ribs of nose and throat pain like some one is scraping in my throat with knife, Drs are not...

Constant pain in eye, rubing tears, Headach,ear ache, and pain in ribs of nose a...

Mamamasuma

•4 years ago

5 Replies

I did it!

I gathered up all my courage and met with my son and daughter in law and my two grandchildren at an outdoor cafe which seemed to be well set up for social...

I gathered up all my courage and met with my son and daughter in law and my two ...

beetle

•4 years ago

10 Replies

Vitamin D and PV ET study

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7053540/ Interesting research on what seems to be a confusing area re VIT D . Should we take or not? It would be...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7053540/ Interesting research on ...

Hidden

•4 years ago

24 Replies

Allelo burden

Allelo burden. What is it? What kind of test is? what does it show in PV patients? Is it useful in clinical practise? What change? Etc. Thanks

Allelo burden. What is it? What kind of test is? what does it show in PV patien...

SoledadBarcelona

•4 years ago

6 Replies

ETand JAK2 and just on asprin - new here

I just wondered if anyone has any tips for staying well and for managing the fatigue. Most of the time I feel really well and then the fatigue can hit me like...

I just wondered if anyone has any tips for staying well and for managing the fat...

Cassandra61

•4 years ago

11 Replies

THIS IS AN AWESOME DOCO... 8-)

Post by MPN-MATE Admin » Fri Aug 07, 2020 3:51 pm Hey everyone... :-D Once more I have stumbled upon something that just might be useful to a few of us out...

Post by MPN-MATE Admin » Fri Aug 07, 2020 3:51 pm Hey everyone... :-D Once mor...

socrates_8

•4 years ago

38 Replies

bloodtest

Hi this is Windy51 Jak 2 neg Cal-R neg Whatever it means I had plateletcountof 890 a month ago I was put on Hydrea two 500mg a day .I had a blood test...

Hi this is Windy51 Jak 2 neg Cal-R neg Whatever it means I had plateletcountof...

Windy51

•4 years ago

7 Replies

Stem Cell Transplant

I heard this can cure PV. Why the he is this not legal in the USA?! Obviously I can't fly to Panama to get this done and can't afford it. I'm sick of being...

I heard this can cure PV. Why the he is this not legal in the USA?! Obviously I ...

lebowski42

•4 years ago

13 Replies

ONS and Oxford University Covid test

Afternoon all, Hope you are all well. Just a question I would like to ask of you all. Has anyone on our forum been invited to take part in a 12 month study...

Afternoon all, Hope you are all well. Just a question I would like to ask of you...

Superwoman

•4 years ago

5 Replies

Cytogenetics showed dup(1q)

Have just received a copy of the last phone consultation under diagnosis: polycythemia vera 1997 JAK2 V617F positive/Post polycythemia myelofibrosis 2019, came...

Have just received a copy of the last phone consultation under diagnosis: polycy...

Kabuki

•4 years ago

4 Replies

ET with no known cause

Hi, this is my first post and pending my bone marrow biopsy and aspiration results I have ET with no mutations. My blood test investigations have shown I have...

Hi, this is my first post and pending my bone marrow biopsy and aspiration resul...

Stillkickin

•4 years ago

7 Replies

WHY WE SHOULD TAKE RESPONSIBILITY & MASK-UP?

Post by MPN-MATE Admin » Thu Aug 06, 2020 9:24 am Hey guys... :D Globally, we can now all see that countries everywhere have started to make Mask wearing...

Post by MPN-MATE Admin » Thu Aug 06, 2020 9:24 am Hey guys... :D Globally, ...

socrates_8

•4 years ago

7 Replies

I had flucloxacillin for a infection from a cut. During the course all low back and hip pain disappeared? Anyone had similar experiance?

Back/hip pain and antibiotics

WoodcutterET

•4 years ago

5 Replies

Ointments such as Deep Heat for sore muscles

All, I've got a calf strain and was going to get an ointment such as Deep Heat or similar brand. However, as they contain Ibuprofen it says on the packet that...

All, I've got a calf strain and was going to get an ointment such as Deep Heat o...

MarkD6701

•4 years ago

6 Replies

Hu journey

Hi journey Well managed 12 weeks No issues. Felt like a normal.human for a while. Now after my blood test which I resemble a human pin cushion..platelets...

Hi journey Well managed 12 weeks No issues. Felt like a normal.human for a whil...

heathermc

•4 years ago

2 Replies

MPN Genetics

Was out looking at some material and came across this presentation about MPN Genetics by Dr. Jerry Spivak. (9th International Symposium on Myeloproliferative...

Was out looking at some material and came across this presentation about MPN Gen...

hunter5582

•4 years ago

18 Replies

MPN and environmental factors

Environmental factors (like, high-energy radiations, chemicals, etc.) have been found as causes of some disorders in our bodies (as mutagenic, toxicogenetic,...

Environmental factors (like, high-energy radiations, chemicals, etc.) have been ...

samiris

•4 years ago

26 Replies

Doc Martin

Did anyone see Doc Martin (repeat) Tuesday last week. It mentioned Polycythaemia Rubra Vera. First time I've ever heard it mmentioned in a tv programme. Hope...

Did anyone see Doc Martin (repeat) Tuesday last week. It mentioned Polycythaemia...

mark382

•4 years ago

12 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2020

New to thrombocytosis..

Severe COVID-19 Infection in Patients With Hematological Disorders Receiving Chemo- or Immunotherapy

Is Anyone using Reblozyl (luspatercept) for anemia due to MPN/ Hydroxyurea?

DR SCHERBER'S – DIET, EXERCISE, & MINDFULNESS – TO AID MPN PATIENT'S BY REDUCING INFLAMMATION

My first phlebotomy PV JAK2 +

Just diagnosed with ET calr positive 39 yr old male

Immunotherapy for MPNs presentation

Sweats

Ocular Migraine

Is this ET related Pruritus?

Critical illness claim

PV Jak2+ and fluid retention

ENT problem

I did it!

Vitamin D and PV ET study

Allelo burden

ETand JAK2 and just on asprin - new here

THIS IS AN AWESOME DOCO... 8-)

bloodtest

Stem Cell Transplant

ONS and Oxford University Covid test

Cytogenetics showed dup(1q)

ET with no known cause

WHY WE SHOULD TAKE RESPONSIBILITY & MASK-UP?

I had flucloxacillin for a infection from a cut. During the course all low back and hip pain disappeared? Anyone had similar experiance?

Ointments such as Deep Heat for sore muscles

Hu journey

MPN Genetics

MPN and environmental factors

Doc Martin

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