Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,842 posts

All posts for January 2017

Nursing a fractured Metatarsal

Hi I'm not a happy Pammie today fell on ice last week struggled all week with a sore foot Went to AE & X-rays show a chipped / fractured Metatarsal, feeling...

Hi I'm not a happy Pammie today fell on ice last week struggled all week with a ...

Phelpsy

•8 years ago

9 Replies

Long term effects

Hello everyone and Happy New Year. So I saw my Heam today and blood levels are still ok, however he mentioned about me being too young to be on...

Hello everyone and Happy New Year. So I saw my Heam today and blood levels are ...

Chelle_

•8 years ago

9 Replies

Itching, Hydrea and H1 inhibitors

Hi everyone. Perhaps I was being a little over optimistic, bu I hoped that taking Hydroxicarbamide would improve my PV itching. I've only been taking it for...

Hi everyone. Perhaps I was being a little over optimistic, bu I hoped that taki...

Splb3317

•8 years ago

16 Replies

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MPN Voice Nottingham Support Group – January meeting details

The first meeting for 2017 will take place on Wednesday 18 January, 6 pm – 7.30 pm Maggie’s Centre, Gate 3, Nottingham City Hospital Campus, Hucknall Road,...

The first meeting for 2017 will take place on Wednesday 18 January, 6 pm – 7.30 ...

Mazcd

Partner•8 years ago

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Thank you all.

How do I ever thank all you awesome friends for your caring and loving support! You all have made me feel better and not so afraid to face tomorrow. Off...

How do I ever thank all you awesome friends for your caring and loving support! ...

Kinsalelady

•8 years ago

13 Replies

Bowel Cancer Screening

Thank you everyone for your replies. I made the mistake of looking on the internet and a site webmd which is where I read about aspirin and even certain foods....

Thank you everyone for your replies. I made the mistake of looking on the intern...

jodary

•8 years ago

2 Replies

Thank you all.

Thank you all so much for your replies. I have never felt so scared and alone. I have so much to be thankful for but right now cannot appreciate any of it. I...

Thank you all so much for your replies. I have never felt so scared and alone. I...

Kinsalelady

•8 years ago

8 Replies

Near fainting

I forgot to mention near fainting spells, 2, to my last post. Does anyone experience this. Also very scary. This is why an MRI was ordered. All normal....

I forgot to mention near fainting spells, 2, to my last post. Does anyone experi...

Kinsalelady

•8 years ago

8 Replies

Bowel Cancer Screening test

Hi All, I have just received my kit for bowel cancer screening to do at home ( lovely birthday gift on turning 60). Just reading advice on things to do before...

Hi All, I have just received my kit for bowel cancer screening to do at home ( ...

jodary

•8 years ago

11 Replies

Terrified!

Hugs and love to all. I read all your posts but I rarely write anything as I do not want to be a "downer". I am here today because I am terrified. Has anyone...

Hugs and love to all. I read all your posts but I rarely write anything as I do ...

Kinsalelady

•8 years ago

13 Replies

Hydrea

Just increased my dose of Hydrea to 1500 mg per day. Been feeling like I have the flu and experiencing pain in my lower stomach/ pelvic area. Have PV diagosed...

Just increased my dose of Hydrea to 1500 mg per day. Been feeling like I have th...

spikesnana

•8 years ago

7 Replies

Hospital visit

Well as my 3 months appt rolls round I'm hoping my platelets have gone down. They have steadily risen to 961 and then slightly down to 930. I've exercised....

Well as my 3 months appt rolls round I'm hoping my platelets have gone down. The...

heathermc

•8 years ago

2 Replies

New granddaughter

Phew !! busy few days looking after my grandson Cooper while his mummy was in hospital having her second child baby girl called Wren, the fatigue has been...

Phew !! busy few days looking after my grandson Cooper while his mummy was in ho...

Superwoman

•8 years ago

23 Replies

Just had to post this, is the best medicine EVER , GRANDSON CARTER 1 TODAY. ❤️❤️❤️❤️❤️

I hope all my lovely extended family are well I'm on top of world today 💙 Big hugs to all x

I hope all my lovely extended family are well I'm on top of world today 💙 Big...

Phelpsy

•8 years ago

12 Replies

ET Causing Ischemic Colitis?

Has anybody else with ET suffered from ischemic attacks? Could ischemic colitis be attributed to ET even with a platelet count under 500? My thought is that...

Has anybody else with ET suffered from ischemic attacks? Could ischemic colitis...

Jerrymohler

•8 years ago

6 Replies

Hydrea 200mg

Has anyone take Droxia 200mg which is the brand name for HU. My Doctor says it is a baby dose but I had such bad side effect on the regular HU 500mg we are...

Has anyone take Droxia 200mg which is the brand name for HU. My Doctor says it ...

mickey64

•8 years ago

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Initial weight gains & Higher platelet counts on Jakafi???

Happy New Year fellow MPN-ers... :) Just curious if anyone else has had similar results in their initial journey with Ruxolitinib? It is only my third week...

Happy New Year fellow MPN-ers... :) Just curious if anyone else has had similar...

socrates_8

•8 years ago

11 Replies

Red, Itching Outer Ears?

It's been awhile since I've posted. Over the past week I have developed itchy, warm ears but just the cartilage..not inside. I'm not sure if it's allergy,...

It's been awhile since I've posted. Over the past week I have developed itchy, w...

Jennifer1974

•8 years ago

10 Replies

Good news and possible bad news

Today was the monthly check up for bloods for my PV....best results for 6 months..but I've developed some other symptoms which my consultant wanted to...

Today was the monthly check up for bloods for my PV....best results for 6 months...

rjw1

•8 years ago

10 Replies

Face and Feet hot but not red

I'm ET, I am starting back on medicine (even though expert says I only need aspirin) local hematologist says its ET and I need meds, only because for the past...

I'm ET, I am starting back on medicine (even though expert says I only need aspi...

mickey64

•8 years ago

3 Replies

The hunt for Aspirin alternatives.... Pycnogenol?

Having recently been diagnosed with low risk ET (low risk of clotting, JAK2/CALR neg, platelet count around 740), my hematologist prescribed 1 x 75mg Aspirin...

Having recently been diagnosed with low risk ET (low risk of clotting, JAK2/CALR...

Kimhock

•8 years ago

17 Replies

I'm new here, I have ET - does anyone also have IIH?

In early 2016 I was found to have Idiopathic Intracranial Hypertension (IIH) after suffering from headaches and some blurred vision. For a couple of months I...

In early 2016 I was found to have Idiopathic Intracranial Hypertension (IIH) af...

CurlyKale

•8 years ago

4 Replies

Anyone on the Givinostat Trial for PV?

To all PV sufferers, I am new to this forum, but would like to share my experience with others. I was diagnosed with JAK 2 + PV, 2 1/2 yrs ago, and have been...

To all PV sufferers, I am new to this forum, but would like to share my experien...

Whatsisname

•8 years ago

3 Replies

Should I push for another Bone Marrow Biopsy?oh and Happy new year everyone

Hi Hope you all had a great Christmas. I've posted a few times on here so won't bore you all with all the details again. Keeping it short and sweet I was...

Hi Hope you all had a great Christmas. I've posted a few times on here so won't ...

James1731

•8 years ago

12 Replies

Good blood results

I've been back to the hospital today after having my Anagrelide increased 3 weeks ago. Before Christmas my platelets had gone up to 590 from 450, but this...

I've been back to the hospital today after having my Anagrelide increased 3 week...

lizzziep

•8 years ago

15 Replies

Sores in the mouth

Hi everybody. I have just taken my second table of Hydroxycarbamide. So far, so good. I am writing a 'just in case' post as I know that a lot people on this...

Hi everybody. I have just taken my second table of Hydroxycarbamide. So far, so ...

Splb3317

•8 years ago

16 Replies

Pv

I came across this photo on a website I thought it was useful as you can visually see the impact of pv to a normal person blood.

I came across this photo on a website I thought it was useful as you can visuall...

tracey13

•8 years ago

6 Replies

Hot Flashes/chills

Hi all have not posted for a long while, have been off of HU for almost a year and of course platelets rise and fall. Saw MPN expert and they were up to 909...

Hi all have not posted for a long while, have been off of HU for almost a year a...

mickey64

•8 years ago

2 Replies

Just diagnosed - Essential Thrombocythemia - Travel Insurance and Critical Illness

Hi, I am 45 years old and just diagnosed with Essential Thrombocythemia after suffering 2 painful splenic infarcts. I have travel,insurance with my bank...

Hi, I am 45 years old and just diagnosed with Essential Thrombocythemia after su...

Janlol

•8 years ago

14 Replies

Slight blood infection

Hi had my blood test results from when i was ill over Christmas ,and it shows raised crp test and inflamation and slight blood infection due to the HU ! will...

Hi had my blood test results from when i was ill over Christmas ,and it shows ra...

Hidden

•8 years ago

5 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2017

Nursing a fractured Metatarsal

Long term effects

Itching, Hydrea and H1 inhibitors

MPN Voice Nottingham Support Group – January meeting details

Thank you all.

Bowel Cancer Screening

Thank you all.

Near fainting

Bowel Cancer Screening test

Terrified!

Hydrea

Hospital visit

New granddaughter

Just had to post this, is the best medicine EVER , GRANDSON CARTER 1 TODAY. ❤️❤️❤️❤️❤️

ET Causing Ischemic Colitis?

Hydrea 200mg

Initial weight gains & Higher platelet counts on Jakafi???

Red, Itching Outer Ears?

Good news and possible bad news

Face and Feet hot but not red

The hunt for Aspirin alternatives.... Pycnogenol?

I'm new here, I have ET - does anyone also have IIH?

Anyone on the Givinostat Trial for PV?

Should I push for another Bone Marrow Biopsy?oh and Happy new year everyone

Good blood results

Sores in the mouth

Pv

Hot Flashes/chills

Just diagnosed - Essential Thrombocythemia - Travel Insurance and Critical Illness

Slight blood infection

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