Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for July 2020

Visiting Son and Daughter in law

I would like your thoughts on whether I should visit my Son and stay overnight this weekend. My husband and I would travel by car from North Yorkshire to...

I would like your thoughts on whether I should visit my Son and stay overnight t...

azaelea

•4 years ago

24 Replies

PLATELETS- PV

Hi everyone... again diagnosed with PV 2 years ago ... had my monthly blood test today and hemoglobin and hematocrit high normal but platelets higher then...

Hi everyone... again diagnosed with PV 2 years ago ... had my monthly blood test...

Hidden

•4 years ago

5 Replies

Surgery Update

Had the surgery to remove the tumor from my mandible yesterday. The surgery went well and they got the tumor out without any collateral damage. It looks like...

Had the surgery to remove the tumor from my mandible yesterday. The surgery wen...

hunter5582

•4 years ago

59 Replies

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VON WILLEBRANDS FACTOR (VWF) & CV–19

Post by MPN-MATE Admin » Mon Jul 13, 2020 7:55 pm Evening all... :D Some of you might recall that sometime back I made mention of some results suggesting...

Post by MPN-MATE Admin » Mon Jul 13, 2020 7:55 pm Evening all... :D Some of y...

socrates_8

•4 years ago

14 Replies

Exhausted iron storage?

exhausted iron storage, what does it mean? What causes it? Sign of pre-mf?

littleluigi

•4 years ago

15 Replies

From ET to MDS to AML a positive perspective

Hello everybody Haven’t been on fo a while as I feel I can’t help much 6years ago I was diagnosed with ET and for 3years this went along nicely with HU and...

Hello everybody Haven’t been on fo a while as I feel I can’t help much 6years ...

Helen1952

•4 years ago

30 Replies

Light headless, Dizzy

Hello All, 1st let me thank you all for your time and efforts on this amazing site in helping us all. Here is my Question. So far my only treatment for my PV...

Hello All, 1st let me thank you all for your time and efforts on this amazing si...

josup26

•4 years ago

6 Replies

EXERCISE... A NEW PRESCRIPTION FOR CANCER?

Post by MPN-MATE Admin » Sat Jul 11, 2020 10:19 pm Evening all.. :D Well I am sure that most of you already realise how much I enjoy bringing this sort of...

Post by MPN-MATE Admin » Sat Jul 11, 2020 10:19 pm Evening all.. :D Well I a...

socrates_8

•4 years ago

13 Replies

ET/melanoma correlation, Anagrelide (XAGRID©) and I.D.R.

Hello everyone, I hope everyone is safe and well. I have a few questions that I'm hoping someone may be able to shed some light on. Firstly, I have ET Jak2+...

Hello everyone, I hope everyone is safe and well. I have a few questions that I'...

Fernsong

•4 years ago

5 Replies

Increase in platelets

Hi I had an telephone appointment with my haematologist nurse specialist today . She gave me my results of my most recent blood test. My platelets have jumped...

Hi I had an telephone appointment with my haematologist nurse specialist today ....

Kiki64

•4 years ago

36 Replies

Impact of COVID-19 infection in blood cancer patients

Post by MPN-MATE Admin » Fri Jul 10, 2020 10:17 am Morning all... :D Here is some encouraging news for those of us w/ compromised immune systems, who might...

Post by MPN-MATE Admin » Fri Jul 10, 2020 10:17 am Morning all... :D Here is ...

socrates_8

•4 years ago

25 Replies

Starting Hydroxyurea

I saw my Haematologist today - platelets are over a 1000. So l am starting my HU tomorrow. I am almost 60 so a few months earlier then planned. He is seeing me...

I saw my Haematologist today - platelets are over a 1000. So l am starting my HU...

Dovme

•4 years ago

45 Replies

Critical illness Insurance & ET

I’m very stressed... I’ve had to refer my critical illness claim to the Financial Ombudsman as my insurers are still refusing to pay. My Haematologist has...

I’m very stressed... I’ve had to refer my critical illness claim to the Financia...

Fizzydog

•4 years ago

16 Replies

ANOTHER TALE OF INSPIRATION...

Post by MPN-MATE Admin » Thu Jul 09, 2020 8:15 pm Evening all... :D Sorry for the hiatus being away from my regular Posting duties etc... I have just...

Post by MPN-MATE Admin » Thu Jul 09, 2020 8:15 pm Evening all... :D Sorry fo...

socrates_8

•4 years ago

2 Replies

Blood levels after trauma

Hi all. I have Jak2 polycythaemia. I had a nose accident in April and lost lots of blood. Since then my haematrocrit (.29) and haemoglobin (91) are low and...

Hi all. I have Jak2 polycythaemia. I had a nose accident in April and lost lot...

SueBas

•4 years ago

5 Replies

PV SWEATING

Hi again everyone !! As I mentioned I have been diagnosed 2 yrs ago with PV jak2 ....... my question is does anyone experience intense sweating episodes which...

Hi again everyone !! As I mentioned I have been diagnosed 2 yrs ago with PV jak2...

Hidden

•4 years ago

20 Replies

Jak 2 pos -protein shakes

Hi just wondered if anyone on here had protein shakes that they use with fitness? I have ET Jak2 pos, and have recently started having one a day to try and...

Hi just wondered if anyone on here had protein shakes that they use with fitnes...

Grumpyfairy

•4 years ago

4 Replies

Going on hormones with ET

Question for all the females out there with ET.... I am 51 and thinking about going on hormones- all plant based- bio, identical. My Heam does not think it...

Question for all the females out there with ET.... I am 51 and thinking about g...

Jschwab

•4 years ago

9 Replies

Gene mutations positive or not?

Does anyone on here have ET or an MPN but their Jak2, CALR, And other mutations were all negative? My hematologist said my gene mutations came back negative,...

Does anyone on here have ET or an MPN but their Jak2, CALR, And other mutations ...

Kristytyler

•4 years ago

12 Replies

Ulcers

Does anyone have a recommended medication for ulcers? My doctor prescribed Daktarin, but the info in the packet said not to take it if you are on blood...

Does anyone have a recommended medication for ulcers? My doctor prescribed Dakt...

nivana

•4 years ago

7 Replies

Amalgams! Metal Fillings!

Today I answered a friend about my amalgam removal and the dispute regarding mercury in the mouth. It took me a lot of time and effort to get my thoughts...

Today I answered a friend about my amalgam removal and the dispute regarding mer...

Anag

•4 years ago

4 Replies

Loss of smell

Hello, all. About a year ago, I was riding in the car with my family and I suddenly started to smell gasoline. I mentioned it to everyone and no one else...

Hello, all. About a year ago, I was riding in the car with my family and I sudde...

Cja1956

•4 years ago

17 Replies

Oral discolouration

Hi all, Just wondering if anyone who has ET has ever experienced any black/dark grey patches in their mouth? I have recently noticed I have a couple of them...

Hi all, Just wondering if anyone who has ET has ever experienced any black/dark...

beckyluck

•4 years ago

19 Replies

Longterm Interferon treatment

Hi, I’ve been diagnosed with PV some 3 years ago. My current treatment is aspirin and phlebotomies which have worked well. However, my symptom burden is slowly...

Hi, I’ve been diagnosed with PV some 3 years ago. My current treatment is aspiri...

Loooonglife

•4 years ago

14 Replies

Hydroxyurea ( Hydrea) and vaccine safety

Hello , I am 60 years old and jak 2 positive PV . I am on aspirin and Hydrea . My doc wants me to take vaccine for swine flu, hepatitis B and pneumococcus -...

Hello , I am 60 years old and jak 2 positive PV . I am on aspirin and Hydrea ....

Iwillwin123

•4 years ago

46 Replies

High Platelet Count

I had difficulty lowering my platelet count while I was taking Hydroxycarbamide. I was changed to Busulfan which gradually brought the count down.

I had difficulty lowering my platelet count while I was taking Hydroxycarbamide....

23938112

•4 years ago

3 Replies

Venesections and PPE

I went for my second venesection last Tuesday. Had the first of 2, three weeks ago and there were only 2 of us on the ward the first-time, so not much going...

I went for my second venesection last Tuesday. Had the first of 2, three weeks a...

mark382

•4 years ago

2 Replies

Scheduled Surgery

We have the surgery to remove the mass on my mandible scheduled for July 13. Will be done at Johns Hopkins Hospital where my MPN Specialist and NF Specialists...

We have the surgery to remove the mass on my mandible scheduled for July 13. Wi...

hunter5582

•4 years ago

50 Replies

Has anyone else had problems with bringing they're platelet count down? And finding the right treatment and dosage to do this?

Reading people's comments on here seeing others platelet counts, compared to how high mine were is quite worrying. The highest mine went up to were over 3000...

Reading people's comments on here seeing others platelet counts, compared to how...

Tinkerbell75

•4 years ago

12 Replies

X39 patches

Hi everyone, I am wondering if anyone of you knows the LifeWaves X39 patches. Is this product help people with MPN issues?

Hi everyone, I am wondering if anyone of you knows the LifeWaves X39 patches. Is...

MarPapa

•4 years ago

3 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2020

Visiting Son and Daughter in law

PLATELETS- PV

Surgery Update

VON WILLEBRANDS FACTOR (VWF) & CV–19

Exhausted iron storage?

From ET to MDS to AML a positive perspective

Light headless, Dizzy

EXERCISE... A NEW PRESCRIPTION FOR CANCER?

ET/melanoma correlation, Anagrelide (XAGRID©) and I.D.R.

Increase in platelets

Impact of COVID-19 infection in blood cancer patients

Starting Hydroxyurea

Critical illness Insurance & ET

ANOTHER TALE OF INSPIRATION...

Blood levels after trauma

PV SWEATING

Jak 2 pos -protein shakes

Going on hormones with ET

Gene mutations positive or not?

Ulcers

Amalgams! Metal Fillings!

Loss of smell

Oral discolouration

Longterm Interferon treatment

Hydroxyurea ( Hydrea) and vaccine safety

High Platelet Count

Venesections and PPE

Scheduled Surgery

Has anyone else had problems with bringing they're platelet count down? And finding the right treatment and dosage to do this?

X39 patches

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