Posts - MPN Voice | HealthUnlocked

MPN Voice

10,512 members • 14,511 posts

All posts for November 2018

Epigenetics

Just had my yearly skin check with my dermatologist and mentioned I’d been recently diagnosed with ET with a JAK2 mutation. He asked if my...

Just had my yearly skin check with my dermatologist and mentioned I’d been recen...

Deefen

•6 years ago

21 Replies

Jakafi weight gain and increased appetite

Was wondering if this is common

rkhabtec

•6 years ago

21 Replies

Thank You for your replies

Thanks to all of you who replied to my recent Post regarding PV and Leg Pain/Weakness. I'm sorry to hear that you too experience Leg pain. My sense is that...

Thanks to all of you who replied to my recent Post regarding PV and Leg Pain/We...

Rose_59

•6 years ago

Be the first to reply

Want to take advantage of all our features? Just log in!

Hydroxyurea and sun

WHY is it so important to wear sunscreen and sunglasses while taking hydroxyurea???

WHY is it so important to wear sunscreen and sunglasses while taking hydroxyurea...

ChattyPanda

•6 years ago

25 Replies

Anybody here being treated in North Wales?

Would like to ask about the treatment one can expect here in North Wales. Though my wife is getting treatment for her Myelofibrosis, we are not sure how good...

Would like to ask about the treatment one can expect here in North Wales. Though...

jointpain

•6 years ago

1 Reply

So much for BUPA medical

I read with much interest the posts, peoples symptoms, platelet counts, side effects etc What I am really annoyed about is the fact that I have been diagnosed...

I read with much interest the posts, peoples symptoms, platelet counts, side eff...

Mardihel

•6 years ago

15 Replies

Is hair loss a given?

Hi all - I know that hair loss/thinning is listed as a possible side effect of taking hydroxyurea. I immediately latched on to the word “possible”, in the hope...

Hi all - I know that hair loss/thinning is listed as a possible side effect of t...

WileyFrench

•6 years ago

19 Replies

Voice MPN ET Blood Tracker results

Hello Just sharing some of my blood results that I downloaded on the MPN Voice ET Tracker results. Viewing these I suspect I may have had my ET since before...

Hello Just sharing some of my blood results that I downloaded on the MPN Voice E...

Hidden

•6 years ago

2 Replies

Thankyou

Hi everyone. Thankyou so much for the replies and discussion on my question about massage, Ive learnt a lot I will be asking g my heamotologist before...

Hi everyone. Thankyou so much for the replies and discussion on my question abou...

Pippa63

•6 years ago

Be the first to reply

Sporting events doctors sign off

Hello Mpn friends I’m looking to do a cycling holiday next year and noticed a lot require doctors sign off has anyone else had an experience of this with Pv or...

Hello Mpn friends I’m looking to do a cycling holiday next year and noticed a lo...

Jasbak66

•6 years ago

7 Replies

Low BUN/creatinine ratio

My BUN/creatinine ratio was below normal on my last blood test. It has never been abnormal before. I started hydroxyurea about a month ago. Anyone experience...

My BUN/creatinine ratio was below normal on my last blood test. It has never bee...

ChattyPanda

•6 years ago

7 Replies

Massage

Hi everyone. Is it correct that we can't have a massage and if so why? I get very stressed and find a massage relaxes me and I forget everything for an hour...

Hi everyone. Is it correct that we can't have a massage and if so why? I get ...

Pippa63

•6 years ago

28 Replies

ASH paper re younger MPN patients, dx age <= 40

Hi younger MPN'ers, I do not very often come across papers aimed at younger MPN patients so thought I would highlight this one that is being presented at the...

Hi younger MPN'ers, I do not very often come across papers aimed at younger MPN ...

Simon96

•6 years ago

10 Replies

Allow myself to introduce myself...

Hi I was diagnosed at almost 48 in January 2018. In November 2017 I went to the GP with pins and needles in my feet and got a full blood work up. The results...

Hi I was diagnosed at almost 48 in January 2018. In November 2017 I went to the ...

Not2bad

•6 years ago

31 Replies

Bleeding gums

Hi everyone, I’ve buddied around 30 newly diagnosed ladies all of whom delightful. Recently I’ve had a couple of queries re bleeding gums, which actually...

Hi everyone, I’ve buddied around 30 newly diagnosed ladies all of whom delightfu...

Loubprv

Volunteer•6 years ago

31 Replies

Get ready with the 'DELETE' key if you are getting fed up of my researching.................... but for others, this is interesting!

Well, I have got the bit well and truly between my teeth in trying to understand fatigue, and why it hits so many of us so badly. Earlier, I posted the results...

Well, I have got the bit well and truly between my teeth in trying to understand...

Ovingite

•6 years ago

15 Replies

letter from health board Scotland

Hi Guys the other weeki went to book my appointment for flu jab and receptionist said is this you received your letter i got mine she was with different...

Hi Guys the other weeki went to book my appointment for flu jab and receptionist...

Scottishterrier

•6 years ago

12 Replies

Checking in

Hi, I posted a few weeks ago about pains in side and chest, and was advised to have a scan on my spleen. I’ve had one and was told my spleen is fine! Which I’m...

Hi, I posted a few weeks ago about pains in side and chest, and was advised to h...

Grumpyfairy

•6 years ago

4 Replies

Hair loss

Hi, is hair loss related to Hydroxyurea? I saw today that I have a receding hair line. Is there anything we can do about that? Vitamins maybe as iron is not...

Hi, is hair loss related to Hydroxyurea? I saw today that I have a receding hair...

Kelly2

•6 years ago

44 Replies

Second experience of a bone marrow trephine biopsy much better than first

I’ve just got back home after having my second trephine bmb - thats the kind where they take a core of bone as well as a sample of marrow. The first one that...

I’ve just got back home after having my second trephine bmb - thats the kind whe...

Rachelthepotter

•6 years ago

9 Replies

Re fatigue data

Many thanks to all of you who responded to my earlier post, which encouraged me to start looking further for info on fatigue in MPN patients. I came upon this...

Many thanks to all of you who responded to my earlier post, which encouraged me ...

Ovingite

•6 years ago

8 Replies

Hi Bone Marrow lymphoma cancer

Hi my niece was diagnosed with tjus will Jakafi help her thanks

rkhabtec

•6 years ago

2 Replies

Interferon advice please

I've had PV for eleven years and recently started on Interferon Peg. I have had two injections so far (dose 90 per week) with no improvement whatsoever. My red...

I've had PV for eleven years and recently started on Interferon Peg. I have had ...

jazzyb

•6 years ago

14 Replies

Treatment update

Evening all Just out from seeing the Prof, my platelets have been stable now for 3 months settled on 352, she is happy with my reaction to Pegasys and she has...

Evening all Just out from seeing the Prof, my platelets have been stable now fo...

Mackydee123

•6 years ago

5 Replies

Re side effects of hydroxycarbamide

Hi Maz, Some 6 years ago you asked for feedback on the side effects of hydroxycarbamide and got a huge number of responses, and I notice that several other...

Hi Maz, Some 6 years ago you asked for feedback on the side effects of hydroxyca...

Ovingite

•6 years ago

14 Replies

Matcha Green Tea!!

Hi guys, Hope everyone is keeping well! I’ve just discovered Match Green Tea and it’s doing wonders for my stamina and brain power in work. It has more...

Hi guys, Hope everyone is keeping well! I’ve just discovered Match Green Tea an...

Mackydee123

•6 years ago

10 Replies

Calr deletion with normal platelets?

I have a follow up appointment on nov 8 with hem/oncologist but I was able to read my blood test of my portal. WBC still elevated at 17.1 along with...

I have a follow up appointment on nov 8 with hem/oncologist but I was able to re...

MrMaxx

•6 years ago

6 Replies

I found this article about "chemo rage" that I thought would be helpful. Here is the link:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4404721/

mammared

•6 years ago

8 Replies

ET, dehydration & vagina

Sorry, tried to find a cute word for vagina but nether regions was too long & this symptom is very important to me and maybe can help someone else. Several...

Sorry, tried to find a cute word for vagina but nether regions was too long & th...

h2ogal

•6 years ago

17 Replies

Help with life insurance

Anyone know any life insurance? I am buying a house & I have applied for life/healh insurance but been declined can you help?

Anyone know any life insurance? I am buying a house & I have applied for life/h...

Avamia94

•6 years ago

7 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2018

Epigenetics

Jakafi weight gain and increased appetite

Thank You for your replies

Hydroxyurea and sun

Anybody here being treated in North Wales?

So much for BUPA medical

Is hair loss a given?

Voice MPN ET Blood Tracker results

Thankyou

Sporting events doctors sign off

Low BUN/creatinine ratio

Massage

ASH paper re younger MPN patients, dx age <= 40

Allow myself to introduce myself...

Bleeding gums

Get ready with the 'DELETE' key if you are getting fed up of my researching.................... but for others, this is interesting!

letter from health board Scotland

Checking in

Hair loss

Second experience of a bone marrow trephine biopsy much better than first

Re fatigue data

Hi Bone Marrow lymphoma cancer

Interferon advice please

Treatment update

Re side effects of hydroxycarbamide

Matcha Green Tea!!

Calr deletion with normal platelets?

I found this article about "chemo rage" that I thought would be helpful. Here is the link:

ET, dehydration & vagina

Help with life insurance

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive