Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for October 2018

Work!

Hi Has anybody with PV managed to return to work? I work in a very busy secondary school and I'm not sure if I'll cope , I'm worried about the fatigue and the...

Hi Has anybody with PV managed to return to work? I work in a very busy seconda...

Welliebobs

•6 years ago

13 Replies

Patient Power - mpn section

https://www.patientpower.info/myeloproliferative-neoplasms This link gives you access to live webinars and updates. Good on mpns. As the big American...

https://www.patientpower.info/myeloproliferative-neoplasms This link gives you ...

Rachelthepotter

•6 years ago

4 Replies

MF with falling Hb: what drugs to go to next?

Hi guys, I have MF, platelets fine, whites a bit high (23), Hb dropping, now 90. On 10mg x2 Jakafi a day, spleen expanding again and liver. Haematologist not...

Hi guys, I have MF, platelets fine, whites a bit high (23), Hb dropping, now 90....

jane13

•6 years ago

15 Replies

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Sususre202

Please contact me as I can't read you're message to me .phn 0278732213 or email frankyh020@gmail.com .thankyou

Please contact me as I can't read you're message to me .phn 0278732213 or email ...

Frankydafish

•6 years ago

4 Replies

Tooth infection

Hi everyone hope you all had good day I am writing to ask advice I have a very bad tooth infection in wisdom tooth started on Sunday oh the pain went dentist...

Hi everyone hope you all had good day I am writing to ask advice I have a very b...

Poppy6060

•6 years ago

8 Replies

low platelets

I am getting conflicting info on whether or not CBD oil raises or lowers platelets.

I am getting conflicting info on whether or not CBD oil raises or lowers platele...

bandchemp

•6 years ago

2 Replies

Clicking joints all the time

Hey guys I’m newly diagnosed with PV and am wondering if anyone else’s joints click all the time? Is this normal with PV? It seems to be getting more and more...

Hey guys I’m newly diagnosed with PV and am wondering if anyone else’s joints cl...

Janeydot

•6 years ago

3 Replies

Good news to finish the week on

I thought you might be interested to see this article from the British Society for Hematology, published earlier this week. It seems that there is active...

I thought you might be interested to see this article from the British Society f...

Ovingite

•6 years ago

7 Replies

Nauseous with ET

Hello all,haven't been on for a while,just after advice,Et for 9 years diagnosed at 39 after stroke,had tia'also bleed in bowl,been on interferon alpha...

Hello all,haven't been on for a while,just after advice,Et for 9 years diagnosed...

Jbut

•6 years ago

4 Replies

Bmb

Hello all, I am ET jak2+ diagnosed 2012 age 57, I have been on hydroxy for a year following angioplasty as a result of this disease. I take 1gm per day but my...

Hello all, I am ET jak2+ diagnosed 2012 age 57, I have been on hydroxy for a yea...

SuekJ

•6 years ago

10 Replies

Good Platelets

I sat for 2 hours before I went into see the doctor. Again he got me mixed up with someone else. I told him this is the 3rd time you have done this. He said...

I sat for 2 hours before I went into see the doctor. Again he got me mixed up w...

wendycu

•6 years ago

18 Replies

Micro blading

Has anyone had eyebrow micro blazing whilst on hydroxycarbamide. I just wondered if it is safe ?

Has anyone had eyebrow micro blazing whilst on hydroxycarbamide. I just wondered...

Ginny70

•6 years ago

Be the first to reply

Stupid me

Well I’ve managed to come away on holiday for 2 weeks and forgotten to bring my Ruxolitinib 🤬 can’t wait for the itching and bone pain to start, it’s going to...

Well I’ve managed to come away on holiday for 2 weeks and forgotten to bring my ...

Skye333

•6 years ago

11 Replies

Bruising badly with ET

Hi, does anyone with ET suffer from sudden bruises appearing when as far as you know you haven't knocked yourself. My left leg has developed large bruises down...

Hi, does anyone with ET suffer from sudden bruises appearing when as far as you ...

azaelea

•6 years ago

19 Replies

Peg Interferon and lower phosphate levels

Hi all, The last couple of blood tests I have had my phosphate level is below normal. I have been told normal is 0.8 and my readings have been 0.62 followed by...

Hi all, The last couple of blood tests I have had my phosphate level is below no...

Jocko

•6 years ago

3 Replies

Cancer 52 - Getting a better deal forpeople with rare andless common cancers:the next ten years

Hello all, I recently took part in a survey with Cancer 52, who are an organisation focused on the 52% of all cancer sufferers who have rare or uncommon...

Hello all, I recently took part in a survey with Cancer 52, who are an organisat...

Ovingite

•6 years ago

4 Replies

TOLUENE & BENZENE

I read recently that exposure to the above chemicals can be the cause of ET. I am 74, ET jak2+, retired, but worked most of my life in the petro-chem and...

I read recently that exposure to the above chemicals can be the cause of ET. I a...

ashby6708

•6 years ago

11 Replies

Hydroxycarbomide

I have just started on hydroxycarbomide. I wondered how many people have experienced sickness and hair loss on a low dose of this drug. I have ET and PV and...

I have just started on hydroxycarbomide. I wondered how many people have experie...

Ginny70

•6 years ago

12 Replies

Guidelines for best practice for diagnosis and treatment of MPNs

Hi I may not have made it clear that this link https://www.nccn.org/patients/guidelines/mpn/49/ is to the state of the art guidelines for what a patient...

Hi I may not have made it clear that this link https://www.nccn.org/patients/gui...

Rachelthepotter

•6 years ago

7 Replies

MF transplant update - discharged from BMT unit and back home

Hi All, delighted to report that I am back home from my local BMT unit and will now be treated as an outpatient. Still along way to go. A bit of background......

Hi All, delighted to report that I am back home from my local BMT unit and will ...

Simon96

•6 years ago

56 Replies

Guidelines for MPN diagnosis and treatment , and a personalised risk calculator

Hi I had a look at the NEJM pape Maz posted , and here is a direct link to the MPN Personalised Risk Calculator. It is, at the moment, the best there is....

Hi I had a look at the NEJM pape Maz posted , and here is a direct link to the...

Rachelthepotter

•6 years ago

14 Replies

MPN Dictionary of Terms

I hope your find this page helpful. Learned a good bit just putting it together - https://www.pvreporter.com/mpn-cancer-dictionary/ Best, David - PV Reporter

I hope your find this page helpful. Learned a good bit just putting it together...

PVReporter

•6 years ago

14 Replies

Leukaemia Care Fatigue Day

I said I would report back on this Information Day in Sheffield - here goes! The speaker throughout the day was Dr Anne Johnson, a consultant occupational...

I said I would report back on this Information Day in Sheffield - here goes! The...

Pauline43

•6 years ago

7 Replies

Travel ins

If taking Hydroxycarbamide what answer should you give when asked if on chemotherapy for travel ins . I Declare ET but unsure on that question Thanks

If taking Hydroxycarbamide what answer should you give when asked if on chemothe...

Jane-r

•6 years ago

19 Replies

Pain meds for PV symptoms

Has any one been told not to take Ibuprofen (NSAID) for pain relief for PV symptoms?

Has any one been told not to take Ibuprofen (NSAID) for pain relief for PV symp...

Titatagg

•6 years ago

15 Replies

Help please from all with Mpn’s!

Hi, I’ve been asked to address about 60 haematology nurses and a few haematologists at the Christie in Manchester with regard to how it feels to have an mpn...

Hi, I’ve been asked to address about 60 haematology nurses and a few haematologi...

Loubprv

Volunteer•6 years ago

20 Replies

Fexofenadrine warning

Recently saw Claire because itching has been a real torment lately. She recommended I try fexofenadrine so I looked it up . Was surprised to find that apple,...

Recently saw Claire because itching has been a real torment lately. She recommen...

skodaguy

•6 years ago

7 Replies

Newcastle Forum

Just returned home from another fantastic MPN forum at Newcastle . It was great to see such a massive turn out and so many people receiving first class up to...

Just returned home from another fantastic MPN forum at Newcastle . It was great ...

Dianne-Guisborough

•6 years ago

1 Reply

Tamoxifen

Hi I have been asked if I would be interested in doing a trial. I take Ruxilitinib for MF and the trial is to take Tamoxifen as well. I have read all the...

Hi I have been asked if I would be interested in doing a trial. I take Ruxilitin...

Skye333

•6 years ago

13 Replies

Newcastle Forum 12/10/18

Just back from a very informative forum where my partner and I met some lovely people. As the daughter of someone with MDS/MPN with MF I found the breakout...

Just back from a very informative forum where my partner and I met some lovely p...

dianetat

•6 years ago

12 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2018

Work!

Patient Power - mpn section

MF with falling Hb: what drugs to go to next?

Sususre202

Tooth infection

low platelets

Clicking joints all the time

Good news to finish the week on

Nauseous with ET

Bmb

Good Platelets

Micro blading

Stupid me

Bruising badly with ET

Peg Interferon and lower phosphate levels

Cancer 52 - Getting a better deal forpeople with rare andless common cancers:the next ten years

TOLUENE & BENZENE

Hydroxycarbomide

Guidelines for best practice for diagnosis and treatment of MPNs

MF transplant update - discharged from BMT unit and back home

Guidelines for MPN diagnosis and treatment , and a personalised risk calculator

MPN Dictionary of Terms

Leukaemia Care Fatigue Day

Travel ins

Pain meds for PV symptoms

Help please from all with Mpn’s!

Fexofenadrine warning

Newcastle Forum

Tamoxifen

Newcastle Forum 12/10/18

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