Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for April 2018

ET is back after years in remission.

Hello! I have just joined this forum because reading your experiences and seeing your support for each other has kept my anxiety at bay these past few weeks. I...

Hello! I have just joined this forum because reading your experiences and seeing...

CommonDaisy

•6 years ago

13 Replies

Potassium Tips

Folks, I've been given this blasted Sando K (low potassium) to drink for the next 10 days - it is horrific. I already take 3 other liquid medications that are...

Folks, I've been given this blasted Sando K (low potassium) to drink for the nex...

Chelle_

•6 years ago

18 Replies

Hydrea over age 65 ET

Hi All, Wondering if anyone over age 65 with ET is not being treated with meds for their condition. I am 68 with Jak2+ ET and my platelets bounce between...

Hi All, Wondering if anyone over age 65 with ET is not being treated with meds f...

Meatloaf9

•6 years ago

34 Replies

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Brow tattoo

Any of you ladies know if we are allowed to have microblading semi permanent brow tattoo? I read somewhere that when on drugs it is not allowed?

Any of you ladies know if we are allowed to have microblading semi permanent bro...

Kelly2

•6 years ago

15 Replies

Feeling 110 🤪

Ok, so I look 90 and feel 110 after a days travelling but hey we’re here and enjoying coffee in the sunshine 😊. Hope you all have a fabulous day! Lesley x

Ok, so I look 90 and feel 110 after a days travelling but hey we’re here and enj...

Sand-Dancer

•6 years ago

12 Replies

Spleen...

What do you take when your spleen’s hurting? Mine’s been tweaking since January, and has now started aching enough to stop me sleeping at night. I’m ET JAK2+,...

What do you take when your spleen’s hurting? Mine’s been tweaking since January,...

LucyGeering

•6 years ago

8 Replies

Thoughts on starting Hyroxyurea? #'s 500-600 so far, but numbness in hands, and jawline/face?

Would love to get in input from others - as my HM team, seems to be unfamiliar with the updated data provided on the MPNResearch Foundation Page, NORD, and...

Would love to get in input from others - as my HM team, seems to be unfamiliar ...

JenngeetingR828

•6 years ago

31 Replies

Burning feet...

Does anyone else suffer? Mine are driving me crazy, particularly at night. I get bad foot cramps too.. I’ve ET Jak neg, just taking aspirin at the moment. Any...

Does anyone else suffer? Mine are driving me crazy, particularly at night. I get...

JaynieQ

•6 years ago

50 Replies

Off to Portugal tomorrow

Just thought I’d leave you with this - 😊

Sand-Dancer

•6 years ago

34 Replies

Thank you

I posted on here on Wednesday last, after my hospital appointment. I received kind and useful replies, all of which I acknowledged individually. When I...

I posted on here on Wednesday last, after my hospital appointment. I received k...

Fionnuaghla

•6 years ago

14 Replies

Mental Tiredness and Anxiety

Hi. My name is Ian and I was diagnosed with ET in 2004. Until September 2018 my treatment was limited to 6 monthly hospital check ups and daily Aspirin, but...

Hi. My name is Ian and I was diagnosed with ET in 2004. Until September 2018 my ...

isimmy

•6 years ago

26 Replies

2016 WHO diagnostic criteria for MPNs

Hi This is a link link the current diagnostic criteria for MPNs. Its from Nature. https://www.nature.com/articles/s41408-018-0054-y#Sec10 Regards

Hi This is a link link the current diagnostic criteria for MPNs. Its from Natu...

Rachelthepotter

•6 years ago

12 Replies

Good article on Pacritinib

https://www.curetoday.com/articles/pacritinib-offers-new-option-for-patients-with-advanced-myelofibrosis

https://www.curetoday.com/articles/pacritinib-offers-new-option-for-patients-wit...

Paul123456

•6 years ago

7 Replies

Impact of diet on symptom burden

Interesting, especially alcohol associated with lower symptom burden. I’ll drink to that if I’ve read it correctly!...

Interesting, especially alcohol associated with lower symptom burden. I’ll drink...

Paul123456

•6 years ago

6 Replies

Need some coping advice.

Good day all. I never post but do read all posts daily and send prayers. I was diagnosed with Jak2 PV several years ago. So far managing it with phlébotomies...

Good day all. I never post but do read all posts daily and send prayers. I was d...

Kinsalelady

•6 years ago

33 Replies

ET and PV?

Hi All I am newly diagnosed with ET and due to start treatment next week. I’m JAK2 positive and slowly getting my head around this condition. I’m trying to be...

Hi All I am newly diagnosed with ET and due to start treatment next week. I’m JA...

BeckaBoo72

•6 years ago

6 Replies

Blood results

A pleasant surprise. My bloods haven’t moved since my venesection in January. I’ve been on Pegasys 16 months. My HCT is 38, perfect for my flight to Cyprus....

A pleasant surprise. My bloods haven’t moved since my venesection in January. I’...

EleanorPV

•6 years ago

8 Replies

Hello from North Carolina USA

As of today, I have been officially diagnosed with ET following the results of my BMB and bloodwork. My name is Pam and I am a 62 year old woman who...

As of today, I have been officially diagnosed with ET following the results of m...

PamelaNC

•6 years ago

6 Replies

Peg interferon

Hi all Quick question. Those of you on peg interferon, how long and on what dose did you start to see results in platelet reduction? Cheers Joe

Hi all Quick question. Those of you on peg interferon, how long and on what dose...

Joerp

•6 years ago

7 Replies

Consultant appointment - ET

Need a rant everyone! Have just come home from seeing specialist having had hospital transport. Waited from 10.30 til 12.40 to see him. Transport home not...

Need a rant everyone! Have just come home from seeing specialist having had hos...

Garden987

•6 years ago

6 Replies

ONWARDS AND UPWARDS !!

Hi Folks , I know it's been a while since I posted an update for those of you who have been following my progress both before and after my SCT in Sept 2015,...

Hi Folks , I know it's been a while since I posted an update for those of you wh...

JediReject

•6 years ago

57 Replies

Consultant has brought my appt forward.

I telephoned my haemotology consultant and spoke to her secretary about my slurring speech (which has now abated) and I got a call yesterday saying the...

I telephoned my haemotology consultant and spoke to her secretary about my slurr...

jillydabrat

•6 years ago

9 Replies

Basal cell skin cancer recurrence: anyone else had similar thing happen

Hi. I’ve got myelofibrosis and I’ve been on ruxolitinib and epo and apart from some weight gain and chest pains I’m doing OK. However I’d had basal cell...

Hi. I’ve got myelofibrosis and I’ve been on ruxolitinib and epo and apart from s...

Rachelthepotter

•6 years ago

7 Replies

Newly Diagnosed (9/2017) with PV and ET

I'm newly diagnosed with both PV and ET and still learning about the symptoms and treatments. Once diagnosed, my hematologist asked that I participate in a...

I'm newly diagnosed with both PV and ET and still learning about the symptoms an...

bmboulanger

•6 years ago

6 Replies

Result & diagnosis stresses

Is it usual for it to be so difficult to get a diagnosis? I had loads of blood tests including jak2 test & was booked a haematology apt for 2 weeks after. The...

Is it usual for it to be so difficult to get a diagnosis? I had loads of blood ...

Vicky_b

•6 years ago

6 Replies

Anyone using Kirkland Aller-tec for itching?

From PV Reporter https://www.pvreporter.com/otc-combo-zyrtec-zantac-helping-polycythemia-vera-patients-get-relief-itching Can’t appear to buy UK?

From PV Reporter https://www.pvreporter.com/otc-combo-zyrtec-zantac-helping-poly...

Paul123456

•6 years ago

1 Reply

Ruxolitinib

Hi, does anyone know why Ruxolitinib has made me gain weight?

Sunshinesan1

•6 years ago

8 Replies

For JediReject

Saw this in Southampton today and thought of you JediReject 😊

Sand-Dancer

•6 years ago

4 Replies

Platelets coming down but hematologist wants to increase Hydrea

Hi All, I was happy to hear my platelets came down another 100k to 655k (started at 1 mil before starting Hydrea 5 weeks ago) but the hematologist wants to...

Hi All, I was happy to hear my platelets came down another 100k to 655k (started...

mbr8076

•6 years ago

3 Replies

Venesection/Hydroxy increase

I had my usual 8 weekly appointment at the hospital yesterday. In my two years+ since diagnosis with PV I have had a venesection every time, weekly at the...

I had my usual 8 weekly appointment at the hospital yesterday. In my two years+...

Fionnuaghla

•6 years ago

7 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2018

ET is back after years in remission.

Potassium Tips

Hydrea over age 65 ET

Brow tattoo

Feeling 110 🤪

Spleen...

Thoughts on starting Hyroxyurea? #'s 500-600 so far, but numbness in hands, and jawline/face?

Burning feet...

Off to Portugal tomorrow

Thank you

Mental Tiredness and Anxiety

2016 WHO diagnostic criteria for MPNs

Good article on Pacritinib

Impact of diet on symptom burden

Need some coping advice.

ET and PV?

Blood results

Hello from North Carolina USA

Peg interferon

Consultant appointment - ET

ONWARDS AND UPWARDS !!

Consultant has brought my appt forward.

Basal cell skin cancer recurrence: anyone else had similar thing happen

Newly Diagnosed (9/2017) with PV and ET

Result & diagnosis stresses

Anyone using Kirkland Aller-tec for itching?

Ruxolitinib

For JediReject

Platelets coming down but hematologist wants to increase Hydrea

Venesection/Hydroxy increase

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