Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,842 posts

All posts for February 2020

Brain fog, fatigue returns 9 months in

I was diagnosed 9 months ago with ET. Platelets just over a million. BMB sent to Mayo Clinic confirmed ET. I was 55. I was smoking at the time. Prior to...

I was diagnosed 9 months ago with ET. Platelets just over a million. BMB s...

MPN123

•5 years ago

12 Replies

Anyone remember me? It’s “Scarlett”

I hope you all are well... just wanted to stop in and say hello...

scarlett777

•5 years ago

2 Replies

Aspirin and peg interferon

Quick question Iam Et jac positive on peg interferon every other week 45dose. When I was diagnosed my hemo suggested aspirin every day before I even started...

Quick question Iam Et jac positive on peg interferon every other week 45dose. Wh...

Elab

•5 years ago

13 Replies

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Sarcomatoid SCCs and ruxolitinib BMB

Hi As I posted here, I had a BMB a couple of weeks ago. Unfortunately the first part of the sample that was analysed had been badly taken and couldn’t be...

Hi As I posted here, I had a BMB a couple of weeks ago. Unfortunately the firs...

Rachelthepotter

•5 years ago

11 Replies

Need more info on ET JAK 2

I have read that ET JAK 2 is a blood cancer. Presently mine is being treated by a low dose aspirin daily. How does ET compare to the seriousness of leukemia...

I have read that ET JAK 2 is a blood cancer. Presently mine is being treated by...

milw532

•5 years ago

23 Replies

SCIENCE WORKING TO PREVENT AML TRANSITION THROUGH BLOCKING GENE TALK

Post by MPN-MATE Admin » Thu Feb 06, 2020 11:27 pm Hey and morning from a very inclement Sydney... :D 8-) But we down here are quite happy about that right...

Post by MPN-MATE Admin » Thu Feb 06, 2020 11:27 pm Hey and morning from a very ...

socrates_8

•5 years ago

4 Replies

HOW LONG HAVE YOU HAD YOUR MPN FOR?

Post by MPN-MATE Admin » Thu Feb 06, 2020 10:49 pm Hey everyone... :D I came across an interesting article the other day that set me thinking about one...

Post by MPN-MATE Admin » Thu Feb 06, 2020 10:49 pm Hey everyone... :D I came ...

socrates_8

•5 years ago

44 Replies

I have been recommended by my consultant to try EPO injections to counter my low red blood cell count. Has anyone had this treatment for MF?

Myelofibrosis

Jimmyh29

•5 years ago

7 Replies

New diagnosis

Hi , I have recently been diagnosed with mpn have started chemo tablets , few side effects nothing major so far ! All this was a bit of a shock and I am really...

Hi , I have recently been diagnosed with mpn have started chemo tablets , few si...

linard

•5 years ago

25 Replies

About Hydra

I want to ask those on hydra, are they taking medicine continuously or its on and off and readjustment of dose after monitoring counts (weekly/monthly)...

I want to ask those on hydra, are they taking medicine continuously or its on a...

neela2020

•5 years ago

14 Replies

Is miso a good food to add to your diet if you have an mpn?

Hi, I'm attempting to improve my diet to reduce my blood pressure. I bought a couple of anti inflammatory recipe books a while ago as I read on here an anti...

Hi, I'm attempting to improve my diet to reduce my blood pressure. I bought a co...

Camelian

•5 years ago

8 Replies

ET cancer or not.

Hi all, I went to the genetic cancer clinic today as they testing my family for the breast cancer gene. They have a list of my families cancers, 2 sisters with...

Hi all, I went to the genetic cancer clinic today as they testing my family for ...

Hydrox

•5 years ago

36 Replies

Started Nitrofurantoin and folic acid at same time, which one caused dreadful diarrhoea?

This is the first time I have asked for help. I was prescribed Nitrofurantoin for UTI and, at the same time, prescribed 5mg folic acid. Within hours I had the...

This is the first time I have asked for help. I was prescribed Nitrofurantoin fo...

themindlady

•5 years ago

10 Replies

Bone marrow biopsy results et

So had bmb not as bad as I thought. What can results indicate?

Irishgal12

•5 years ago

14 Replies

Is a Bone Marrow Biopsy Common Practice for ET?

Just interested to know if it’s common practice to have a BMB for an MPN. I’ve heard of others, ( mainly in the USA ), that have had one to establish...

Just interested to know if it’s common practice to have a BMB for an MPN. I’ve h...

swimswam

•5 years ago

20 Replies

Jakafi and Hydroxy

Hi MPN family, Just wondering if anyone is on Jakafi and Hydroxy together. It has been recomended to me and I am very nervous about this. Thanks in advance...

Hi MPN family, Just wondering if anyone is on Jakafi and Hydroxy together. It ...

Joprv

•5 years ago

3 Replies

Canker sore

Hello all, Thank you all for all the helpful and encouraging information. I had good news today my hematocrit has gone down from 59 to 41.3 with phlebotomy...

Hello all, Thank you all for all the helpful and encouraging information. I had ...

josup26

•5 years ago

4 Replies

MPN PV different than ET

In short MPN patients has to deal with haematocrit as well as platelets. That means ET is subpart of PV?? Do all PV patients has to deal with rising platelets?...

In short MPN patients has to deal with haematocrit as well as platelets. That me...

neela2020

•5 years ago

8 Replies

It's been a long time......

Good Morning, My name is Penny, I will be 60 in march, and I am from Texas. I came across this forum about 4 yrs ago, but did not for some reason have the guts...

Good Morning, My name is Penny, I will be 60 in march, and I am from Texas. I ca...

sugarbear56

•5 years ago

26 Replies

LESLEY aka SAND Dancer💃🏻

Morning Folks, My apologies for the issue with the Just Giving Fundraiser for Lesley, it has been corrected by our Maz and our Peter ( Biggles) cracked it.. I...

Morning Folks, My apologies for the issue with the Just Giving Fundraiser for L...

pontygirl

•5 years ago

6 Replies

Vitamin D

So is vitamin D a culprit for progression? Because my haematologist did not answer this question. I was so afraid that I stopped it altogether and I do need it...

So is vitamin D a culprit for progression? Because my haematologist did not answ...

Kelly2

•5 years ago

14 Replies

Possible PV - just referred and scared

Hi everyone, this seems a wonderful community, been feeling yuk since last September, my mother died and it was a very stressful time, not sure if that has...

Hi everyone, this seems a wonderful community, been feeling yuk since last Septe...

Flavait

•5 years ago

26 Replies

Aspirin Side effects??

Does daily ecospirin causes stomach ulcer and GI bleeding? I visited another hematologist for second opinion and he said not recommending another medicine...

Does daily ecospirin causes stomach ulcer and GI bleeding? I visited another hem...

neela2020

•5 years ago

10 Replies

Inflammation increased by Peg?

I was diagnosed with PV 4 years ago, at age 49. For the past 2 years I was taking Pegasys. Inflammation has been present for most of that time, and six months...

I was diagnosed with PV 4 years ago, at age 49. For the past 2 years I was takin...

clevemic

•5 years ago

15 Replies

What's blood type got to do with clot risk?

Post by MPN-MATE Admin » Sun Feb 02, 2020 3:57 pm JAN. 23, 2020 What's blood type got to do with clot risk? Hey everyone... :D Earlier today I...

Post by MPN-MATE Admin » Sun Feb 02, 2020 3:57 pm JAN. 23, 2020 What's blood ty...

socrates_8

•5 years ago

44 Replies

LESLEY aka SAND DANCER 💃🏻 UPDATE....

Hi Folks, My fellow MPN Sisters and Brothers as we are all painfully aware we lost our Lovely Lesley 15th January 2020. Lesley and I were very close in Heart...

Hi Folks, My fellow MPN Sisters and Brothers as we are all painfully aware we l...

pontygirl

•5 years ago

20 Replies

Essential thrombocytosis newly diagnosed struggling

Sorry me again Am really struggling feel scared upset angry worried about the future all I keep thinking Is I have cancer and that am more likely to get other...

Sorry me again Am really struggling feel scared upset angry worried about the fu...

Irishgal12

•5 years ago

76 Replies

Essential thrombocytosis leg pain

I think I may have asked before i cant even remember. I have been having leg cramps/ pain around knee joints not severe my haematologist said it could be et...

I think I may have asked before i cant even remember. I have been having leg cra...

Irishgal12

•5 years ago

9 Replies

Awaiting PV diagnosis

Hi everyone, I am in the process of undergoing a full work up for possible PV. I have had three CBCs in the past 6 months with HGB values ranging from...

Hi everyone, I am in the process of undergoing a full work up for possible PV. I...

GoHeels

•5 years ago

16 Replies

ET and Fatigue

I have ET Jak 2+, recently started experiencing bad bouts of fatigue. All other bloodwork normal. Currently only taking aspirin. Doctor considering starting me...

I have ET Jak 2+, recently started experiencing bad bouts of fatigue. All other ...

Bears23

•5 years ago

34 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2020

Brain fog, fatigue returns 9 months in

Anyone remember me? It’s “Scarlett”

Aspirin and peg interferon

Sarcomatoid SCCs and ruxolitinib BMB

Need more info on ET JAK 2

SCIENCE WORKING TO PREVENT AML TRANSITION THROUGH BLOCKING GENE TALK

HOW LONG HAVE YOU HAD YOUR MPN FOR?

I have been recommended by my consultant to try EPO injections to counter my low red blood cell count. Has anyone had this treatment for MF?

New diagnosis

About Hydra

Is miso a good food to add to your diet if you have an mpn?

ET cancer or not.

Started Nitrofurantoin and folic acid at same time, which one caused dreadful diarrhoea?

Bone marrow biopsy results et

Is a Bone Marrow Biopsy Common Practice for ET?

Jakafi and Hydroxy

Canker sore

MPN PV different than ET

It's been a long time......

LESLEY aka SAND Dancer💃🏻

Vitamin D

Possible PV - just referred and scared

Aspirin Side effects??

Inflammation increased by Peg?

What's blood type got to do with clot risk?

LESLEY aka SAND DANCER 💃🏻 UPDATE....

Essential thrombocytosis newly diagnosed struggling

Essential thrombocytosis leg pain

Awaiting PV diagnosis

ET and Fatigue

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