Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,842 posts

All posts for October 2019

SPICE OF LIFE ~ CURCUMIN

Post by MPN-MATE Admin » Wed Oct 23, 2019 11:47 pm Hey everyone... :-) Once more a well researched scientific analysis suggests that 'CURCUMIN' Really is......

Post by MPN-MATE Admin » Wed Oct 23, 2019 11:47 pm Hey everyone... :-) Once m...

socrates_8

•5 years ago

18 Replies

How oncologists can ethically navigate the 'Right-To-Try' drug law

Post by MPN-MATE Admin » Wed Oct 23, 2019 9:45 pm OCT. 22, 2019 by Perelman School of Medicine at the University of Pennsylvania This article stimulates a...

Post by MPN-MATE Admin » Wed Oct 23, 2019 9:45 pm OCT. 22, 2019 by Perelman Sch...

socrates_8

•5 years ago

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Brain fog / cognitive overload

Hello. Hope everyone is doing OK. I have a question, and I'm curious... I have seen posts in the past talking about brain fog.. Recently I have moments when I...

Hello. Hope everyone is doing OK. I have a question, and I'm curious... I have s...

Mrs_Average

•5 years ago

28 Replies

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Is a Chiropractor safe for people with ET?

I have been seeing a chiropractor since last week (my 4th adjustment was today). My MRI showed a slight scoliosis, desiccation of L2-L3, L3-L4 and L4-L5....

I have been seeing a chiropractor since last week (my 4th adjustment was today)....

Debborah

•5 years ago

4 Replies

Interesting developments in gene editing

Hi all, I've no idea what the potential of this research is for us with MPNs but it sounds encouraging in terms of where we might be in the future so thought...

Hi all, I've no idea what the potential of this research is for us with MPNs bu...

Timjonze

•5 years ago

1 Reply

Interferons analysis

Interesting https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6323070/

Paul123456

•5 years ago

14 Replies

Travelling to hot / humid climates

Hi, I live in Australia and am going to Bali for a holiday in April 2020. I've just been diagnosed with ET and am wondering if anyone has any advice for...

Hi, I live in Australia and am going to Bali for a holiday in April 2020. I've ...

Michelle2006Blu

•5 years ago

5 Replies

New meds for Myelofibrosis

Hello, all. So I just received my first shipment of a new medication called Enribic. My new specialist told me that it’s just released from the FDA here in the...

Hello, all. So I just received my first shipment of a new medication called Enri...

Cja1956

•5 years ago

10 Replies

Itching

Hello Everyone, I am 42 and diagnosed with PV 5 years ago. So far I am just taking aspirin and occasional phlebotomy, although my platelet and white counts...

Hello Everyone, I am 42 and diagnosed with PV 5 years ago. So far I am just t...

DN515

•5 years ago

5 Replies

Now PCV go's Beyond limit

Hi everyone! Yesterday i got my CBC reports and my PCV go's beyond normal limit(50.1) I refer my report to my hematologist and call me for phlebotomy. After 9...

Hi everyone! Yesterday i got my CBC reports and my PCV go's beyond normal limit(...

Vigiindia

•5 years ago

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ET triple neg and surgery - any experiences?

Hello, My partner has ET triple negative and takes 1500mg Hydroxycarbomide every day as he had a very minor heart attack before diagnosis and platelets at...

Hello, My partner has ET triple negative and takes 1500mg Hydroxycarbomide every...

intothewoods

•5 years ago

2 Replies

Pregnant, 36 weeks, low platelets, on Peg.

Hello all! I've posted here a couple of times. I'm 41 now and have been taking Peg. 90mcg/every 3 weeks for about 3 years. It has controlled all my counts very...

Hello all! I've posted here a couple of times. I'm 41 now and have been taking P...

SharonIsHopeful

•5 years ago

4 Replies

Light Headed

Hi, I'm ET JAK 2 and on Hydroxycarbamide (500/1000 alternate days). I've recently experienced some random episodes of light headiness and wondered if anyone...

Hi, I'm ET JAK 2 and on Hydroxycarbamide (500/1000 alternate days). I've recentl...

Trueblue8

•5 years ago

17 Replies

Polycythaemia Vera

Hi, I'm new to this, but it has been recommended by one of my haematologist doctors. I'm a 54 year old male who was diagnosed with Polycythaemia Vera, Exon 12...

Hi, I'm new to this, but it has been recommended by one of my haematologist doct...

mrbrindle

•5 years ago

21 Replies

EXERCISE GUIDELINES FOR CANCER SUFFERERS

Post by MPN-MATE Admin » Sat Oct 19, 2019 9:21 pm Hey guys... :-) Thought some of you might find this article of great interest......

Post by MPN-MATE Admin » Sat Oct 19, 2019 9:21 pm Hey guys... :-) Thought some...

socrates_8

•5 years ago

3 Replies

Elevated basophils anyone?

Hi there, I have ET Jak2+. Has anyone had elevated basophils in their blood count? Mine absolute count is 1.15 (0.01-0.08) in the latest blood work. I have...

Hi there, I have ET Jak2+. Has anyone had elevated basophils in their blood coun...

Alexbits

•5 years ago

7 Replies

Pegasys and changing blood results

Hi, I have ET CALR, I wonder if I could have your thoughts on my current blood counts. During my last consultation I was told my white counts are below normal...

Hi, I have ET CALR, I wonder if I could have your thoughts on my current blood c...

lindyloulou

•5 years ago

2 Replies

Platelets rise again

Hi all I've been on Pegasys for a few months now, 90mcg once a fortnight. Platelets have been dropping a lot but at my regular appointment yesterday they'd...

Hi all I've been on Pegasys for a few months now, 90mcg once a fortnight. Platel...

hall2

•5 years ago

13 Replies

Fatigue: Any way to tell before totally exhausted?

Does anyone know how I can notice I’m becoming fatigued before I’m totally exhausted? I’d really appreciate suggestions as I currently end up so exhausted I...

Does anyone know how I can notice I’m becoming fatigued before I’m totally exhau...

katiewalsh

•5 years ago

34 Replies

PV

Hi this is my first post! I am 42 and was diagnosed with PV when I was 35. I think I probably had it at least 2 years prior to my diagnosis. I have a...

Hi this is my first post! I am 42 and was diagnosed with PV when I was 35. I thi...

MamPRV

•5 years ago

13 Replies

Multivitamins & hydroxy, pounding head, trick for tinnitus relief

Jax2+, ET, hydroxy 8X per week. Hopefully this can help someone else as my Drs. said they have never heard of this reaction to hydroxy. I even had a brain...

Jax2+, ET, hydroxy 8X per week. Hopefully this can help someone else as my Drs....

h2ogal

•5 years ago

2 Replies

Pegasys results

So I have now completed my first 4 weeks on Peg Interferon and am pleased to report that my platelets dropped lower than ever before 😊 My results this week...

So I have now completed my first 4 weeks on Peg Interferon and am pleased to rep...

Graham7694

•5 years ago

11 Replies

Claiming benefit

Hi out there does anyone know what are my chances of claiming personal independance payment.I am diagnosed with essential Thrombocythamia

Hi out there does anyone know what are my chances of claiming personal independ...

Jahill

•5 years ago

18 Replies

Bmb results

Not sure what to make if this as been back today for my bone marrow results and only 1 result was back which was the liquid part I think and have to wait...

Not sure what to make if this as been back today for my bone marrow results and ...

Dolman

•5 years ago

4 Replies

Mutations

As other individuals have said I think of all the questions when I leave the hospital. I have been told I have mpn/ mds overlap. However BMA is negative for...

As other individuals have said I think of all the questions when I leave the hos...

Nurset

•5 years ago

10 Replies

Waiting

It's that time again. Blood tests and waiting. I now go to my go for routine test 2 days before hospital appt. Still get the knot in the stomach when waiting...

It's that time again. Blood tests and waiting. I now go to my go for routine tes...

heathermc

•5 years ago

12 Replies

METHOTREXATE (MTX) TRIAL - UPDATE...

Post by MPN-MATE Admin » Wed Oct 16, 2019 10:21 am Morning from a not so sunny Sydney everyone... Back in September, I posted an article relating to a drug...

Post by MPN-MATE Admin » Wed Oct 16, 2019 10:21 am Morning from a not so sunny...

socrates_8

•5 years ago

29 Replies

Itching on pegasus.

Itching on pegasus. Hi I'm 48 and started peg mid Aug 45mcg whilst reducing hydrea and anagrelide. Now on just 4 anagrelide daily and inject fortnightly....

Itching on pegasus. Hi I'm 48 and started peg mid Aug 45mcg whilst reducing hydr...

soomoo

•5 years ago

11 Replies

Should I change to Busulfan?

Hi everyone! I have been on hydroxy for just over five years now for pre-fibrotic myelofibrosis. When I saw my haematologist a couple of weeks ago she asked...

Hi everyone! I have been on hydroxy for just over five years now for pre-fibro...

Cindy12

•5 years ago

12 Replies

BMB Result

I said that I would report back after my BMB results, so here I am! (It was actually a couple of weeks ago now, but I've been having a busy time.) Much to my...

I said that I would report back after my BMB results, so here I am! (It was actu...

Blaablaablaa

•5 years ago

7 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2019

SPICE OF LIFE ~ CURCUMIN

How oncologists can ethically navigate the 'Right-To-Try' drug law

Brain fog / cognitive overload

Is a Chiropractor safe for people with ET?

Interesting developments in gene editing

Interferons analysis

Travelling to hot / humid climates

New meds for Myelofibrosis

Itching

Now PCV go's Beyond limit

ET triple neg and surgery - any experiences?

Pregnant, 36 weeks, low platelets, on Peg.

Light Headed

Polycythaemia Vera

EXERCISE GUIDELINES FOR CANCER SUFFERERS

Elevated basophils anyone?

Pegasys and changing blood results

Platelets rise again

Fatigue: Any way to tell before totally exhausted?

PV

Multivitamins & hydroxy, pounding head, trick for tinnitus relief

Pegasys results

Claiming benefit

Bmb results

Mutations

Waiting

METHOTREXATE (MTX) TRIAL - UPDATE...

Itching on pegasus.

Should I change to Busulfan?

BMB Result

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