Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,731 posts

All posts for August 2018

Survey on behalf of Cancer52

Cancer52 https://www.cancer52.org.uk/ is an alliance of nearly 100 organisations working to address inequality and improve outcomes for patients with rare and...

Cancer52 https://www.cancer52.org.uk/ is an alliance of nearly 100 organisation...

Mazcd

Partner•6 years ago

19 Replies

Aspirin or not Aspirin that is the question

Morning folks, Had a a call this morning from my local CCG long conversation short !!! There is no proven benifits from taking Gastro resistant Aspirin or...

Morning folks, Had a a call this morning from my local CCG long conversation sh...

Superwoman

•6 years ago

19 Replies

Platelets still not reducing

Hi all Thanks for advice so far on this forum. I have now been on peg interferon for 4 months or so. First two weeks on 45 dose then 90 for two weeks and 180...

Hi all Thanks for advice so far on this forum. I have now been on peg interfero...

Joerp

•6 years ago

12 Replies

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

Circus career over 😄

The new haem wanted to investigate why I had been anaemic for nearly a year despite the iron tablets I'd been on for ages. So on Sunday I had the joy of the...

The new haem wanted to investigate why I had been anaemic for nearly a year desp...

lizzziep

•6 years ago

18 Replies

Finally a full diagnosis

I was diagnosed with Primary Myleofibrosis earlier this year and have finally received my full diagnosis I am now PMF calr type 1 (deletion) which as far as...

I was diagnosed with Primary Myleofibrosis earlier this year and have finally re...

Graham7694

•6 years ago

20 Replies

Are you taking blood thinner when air traveling?

Hi everybody! Please tell me what you do. I have PV, I am on 500mg Hydrea and one asperin daily. I did 2-3 hour flights before , but now I am planning longer...

Hi everybody! Please tell me what you do. I have PV, I am on 500mg Hydrea and on...

love0826

•6 years ago

2 Replies

Are you taking blood thinner when air traveling?

Hi everybody! Please tell me what you do. I have PV, I am on 500mg Hydrea and one asperin daily. I did 2-3 hour flights before , but now I am planning longer...

Hi everybody! Please tell me what you do. I have PV, I am on 500mg Hydrea and on...

love0826

•6 years ago

7 Replies

Normal to have chest pain?

I was diagnosed with PV about 16 months ago. My numbers are not off the chart like I see with a lot of other people but I have off and on chest pain. I have...

I was diagnosed with PV about 16 months ago. My numbers are not off the chart li...

Alex9621

•6 years ago

3 Replies

Clexane injection

Quick question, does anyone get sore and bruises with clexane injections? I've been on them for 5 months and struggling to find a injection area without a...

Quick question, does anyone get sore and bruises with clexane injections? I've b...

Joall

•6 years ago

6 Replies

MPNs and bone marrow biopsy

OK, so I've been on Hydroxy for 6 years (for ET) and visited my Hematologist last week. He asked if I ever had a bone marrow biopsy done. I said no, and he...

OK, so I've been on Hydroxy for 6 years (for ET) and visited my Hematologist las...

GardenGal3

•6 years ago

39 Replies

Cbd oil / Low blood platelets

I have very low blood platelets and wanted to know if the CBD oil would help with the muscle spasms and cramping without affecting my blood platelets any lower

I have very low blood platelets and wanted to know if the CBD oil would help wit...

Halkitiki

•6 years ago

4 Replies

Quick resume from Prof Harrison

Only a minute long but reassuring, a lot in the pipeline! http://www.oncologytube.com/video/mpn-therapies-the-current-landscape/10004637

Only a minute long but reassuring, a lot in the pipeline! http://www.oncologytub...

Paul123456

•6 years ago

7 Replies

Clodripogel experiences?

Hi all, Following my TIA my meds were changed do that aspirin was replaced by clodripogel, I was put on Atorvastatin and increased dosage of Lisinopril to...

Hi all, Following my TIA my meds were changed do that aspirin was replaced by cl...

Ovingite

•6 years ago

19 Replies

Dental Implants - recommendations?

Hello to everyone, I wanted to say thank you to everyone who posts, cos they make me feel less alienated and help me no end, especially when I’m having a bad...

Hello to everyone, I wanted to say thank you to everyone who posts, cos they mak...

Judi150

•6 years ago

9 Replies

Brain fog

It has been a while since I posted. Things have been going well on the Ruxolitinib and my platelets have been coming down steadily. I have been feeling a bit...

It has been a while since I posted. Things have been going well on the Ruxolitin...

Graham7694

•6 years ago

5 Replies

Molecular Improvement – Exercise, & Dietary Regime or Medication(?)

Morning/Gooday/Good Evening (?)... :-) To all my MPN cousins, wherever you might be located… Recently, I underwent my second BMB, in preparation for the...

Morning/Gooday/Good Evening (?)... :-) To all my MPN cousins, wherever you migh...

socrates_8

•6 years ago

32 Replies

Increase in medication

Hello I was diagnosed with PV in Dec 2015 and started to take hydroxy in March 2016, 1 x 500mg Mon to Fri. At my 8 weekly appointments, I had a venesection...

Hello I was diagnosed with PV in Dec 2015 and started to take hydroxy in March ...

Fionnuaghla

•6 years ago

6 Replies

feeling rotten

I am new here. At the moment my red blood cells are low. Fortunately the white blood cells are normal. I have been diagnosed with myelofibrosis in May...

I am new here. At the moment my red blood cells are low. Fortunately the wh...

home1970

•6 years ago

10 Replies

ET, or something else?

Just wanted to ask a question. I am currently waiting for BMB results. I have suspected ET, but nothing confirmed yet. I get results in mid September. I am...

Just wanted to ask a question. I am currently waiting for BMB results. I have su...

Sarahjane100

•6 years ago

15 Replies

Rising plates..

Well another blood test ..Platelets now 1377.. every thing else remains the same.. appears I will start treatment in the next 6 months on hydroxy.. by then...

Well another blood test ..Platelets now 1377.. every thing else remains the same...

heathermc

•6 years ago

4 Replies

Allele burden gone down

Hi I’ve just come back from seeing my new haematologist. I’d been feeling more than usually tired and easily upset, and had had a recurrencece of bone pain in...

Hi I’ve just come back from seeing my new haematologist. I’d been feeling more ...

Rachelthepotter

•6 years ago

16 Replies

MF, gastric varices, low platelets etc etc, anyone else with simlar set of problems?

I feel I'm in a bit of a pickle. I've secondary MF but also have gastric varices (ongiong treatment), portal hypertension, possible splanchnic thrombosis,...

I feel I'm in a bit of a pickle. I've secondary MF but also have gastric varices...

Dodders

•6 years ago

6 Replies

Bmb negative for ET

Has anyone else been diagnosed with ET even though they had a normal Bmb result? I have ET with germline MPL mutation apparently. Last platelet count was 776....

Has anyone else been diagnosed with ET even though they had a normal Bmb result?...

SOD2

•6 years ago

7 Replies

ET JAK2 +

Hi I have just joined this forum. I have had ET JAK2+ diagnosed for around 3yrs and have been this month put on Hydroxycambamide 500mg. Also on aspirin and...

Hi I have just joined this forum. I have had ET JAK2+ diagnosed for around 3yrs ...

ET500

•6 years ago

12 Replies

Risk of Myeloid Blood Cancers are increased in relatives of patients

This is an interesting research report, not surprising - https://bit.ly/2vSrM7u Best, David - PV Reporter / MPN Cancer Connection

This is an interesting research report, not surprising - https://bit.ly/2vSrM7u ...

PVReporter

•6 years ago

5 Replies

Link to research on MPNs

Hi A link to the research papers on MPNs, produced and updated by the MPN Research Foundation. To whom thanks....

Hi A link to the research papers on MPNs, produced and updated by the MPN Rese...

Rachelthepotter

•6 years ago

2 Replies

Useful update on Pegasys

Of interest to all of us using Interferons or considering their use. Bottom line is that a subset of users can get significant reduction in progression and...

Of interest to all of us using Interferons or considering their use. Bottom line...

Paul123456

•6 years ago

6 Replies

Is ET a blood cancer?

My doctors say it's not but i've read that the World Health Organization classes it as one... I have ET with germline MPL mutation. I was born with it, as was...

My doctors say it's not but i've read that the World Health Organization classes...

SOD2

•6 years ago

22 Replies

Who do they think they are

Ok Folks, I need a rant!!!! Sent to pick up my repeat perscription from My local chemist today to find all my tablets were in order, but when I got home found...

Ok Folks, I need a rant!!!! Sent to pick up my repeat perscription from My local...

Superwoman

•6 years ago

32 Replies

Becoming your own Patient Advocate is crucial to getting proper medical care for your MPN

Episode 03 - from MPN Chronicles Podcast by PV Reporter https://www.pvreporter.com/03-learn-benefits-of-becoming-your-own-mpn-patient-advocate/ Hope you find...

Episode 03 - from MPN Chronicles Podcast by PV Reporter https://www.pvreporter.c...

PVReporter

•6 years ago

2 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2018

Survey on behalf of Cancer52

Aspirin or not Aspirin that is the question

Platelets still not reducing

Circus career over 😄

Finally a full diagnosis

Are you taking blood thinner when air traveling?

Are you taking blood thinner when air traveling?

Normal to have chest pain?

Clexane injection

MPNs and bone marrow biopsy

Cbd oil / Low blood platelets

Quick resume from Prof Harrison

Clodripogel experiences?

Dental Implants - recommendations?

Brain fog

Molecular Improvement – Exercise, & Dietary Regime or Medication(?)

Increase in medication

feeling rotten

ET, or something else?

Rising plates..

Allele burden gone down

MF, gastric varices, low platelets etc etc, anyone else with simlar set of problems?

Bmb negative for ET

ET JAK2 +

Risk of Myeloid Blood Cancers are increased in relatives of patients

Link to research on MPNs

Useful update on Pegasys

Is ET a blood cancer?

Who do they think they are

Becoming your own Patient Advocate is crucial to getting proper medical care for your MPN

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