Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for April 2023

Orthodontics Appointment cancelled for the 4th time

Had a text earlier from the hospital again cancelling my orthodontics appointment again for 4th time, I have avascular necrosis of both hip's and the pain...

Had a text earlier from the hospital again cancelling my orthodontics appointmen...

•1 year ago

Good news

Hi everyone. Do not post very often. Have been taking pegasys since January 21 after being diagnosed with MF. Total shock as I had never heard of the...

Hi everyone. Do not post very often. Have been taking pegasys since January 21 a...

•1 year ago

Benign..Feeling Very Blessed

Good morning. First of all I want to thank you all for your support and comfort during the last few weeks as I wrestled with what could have been very...

Good morning. First of all I want to thank you all for your support and comfort...

•1 year ago

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ET/Jak2 postive

Hello! I was recently diagnosed with ET. I had not had bloodwork done in 15 years but just decided maybe I should and my platelets came back 600. They...

Hello! I was recently diagnosed with ET. I had not had bloodwork done in 15 ye...

•1 year ago

2 weeks on HU - first spot check 👀

had my first bloods taken since starting hydrea two weeks ago. All bloods in normal range and platelets down from 1.2M to 880. So far no side effects and...

had my first bloods taken since starting hydrea two weeks ago. All bloods in nor...

•1 year ago

Undiagnosed ET….advice please!

Hi everyone, I have my Haematologist telephone appointment tomorrow so just looking for a few opinions beforehand from you lovely lot… A quick recap…. I am...

Hi everyone, I have my Haematologist telephone appointment tomorrow so just look...

•1 year ago

Adeyabeba with ET

Hello friends . I was diagnosed ET before 3 years and was on Asprin 75mg with no additional medication. My platelet number was increased from 750 to 1250 .I...

Hello friends . I was diagnosed ET before 3 years and was on Asprin 75mg with ...

•1 year ago

Iron regulation offers new treatment hope for incurable blood cancer

Published April 4, 2023 | Originally published on MedicalXpress Breaking News-and-Events A landmark discovery linking iron regulation to a rare blood cancer...

Published April 4, 2023 | Originally published on MedicalXpress Breaking News-an...

•1 year ago

Platelettes going down down

Hello- When I was diagnosed with ET, my platelettes rose into the near millions, in 2019, 4 years ago. About 2 years ago, they began declining. 6 months ago...

Hello- When I was diagnosed with ET, my platelettes rose into the near millions...

•1 year ago

2nd booster shot coming

Feds expected to OK 2nd booster for someFederal regulators are prepared to approve a second COVID-19 vaccine booster shot tailored to combat the omicron...

Feds expected to OK 2nd booster for someFederal regulators are prepared to appro...

•1 year ago

Platelets

My platelets have dropped again to 493, hopefully the will keep falling.

My platelets have dropped again to 493, hopefully the will keep falling.

•1 year ago

results are in ….

but what next… consultant hasn’t mentioned an bmb - is this because of the extended gene testing? Do I need to start looking at ‘other reasons?’ I have no...

but what next… consultant hasn’t mentioned an bmb - is this because of the exten...

•1 year ago

UK - Covid Spring Booster 2023

Just booked in for my spring booster later this month - very quick and easy to arrange it. I think dates vary for other UK countries but in England bookings...

Just booked in for my spring booster later this month - very quick and easy to a...

•1 year ago

St, Jak2, and now Asxl1...

Hi gang,So my quick journey so far, my elevated platelets over the past 2 years, up to 950, led to deeper bloodwork last October discovering Mpn possibilities...

Hi gang,So my quick journey so far, my elevated platelets over the past 2 years,...

•1 year ago

Iron Levels

Hi, Just a quick question if anyone is able to answer. I had some blood tests done a few weeks back at my GP Practice, thought everything was fine as didn't...

Hi, Just a quick question if anyone is able to answer. I had some blood tests ...

•1 year ago

Peginterferon side effects!

Hi all, I have ET Jak2+ since 2021 and have been injecting 45mg Peginterferon weekly for 6 months and doing relatively ok until just recently. I now am...

Hi all, I have ET Jak2+ since 2021 and have been injecting 45mg Peginterferon w...

•1 year ago

Common genomic diagnostic tests

Another from our friends at MPN Hub. Not a lot of detail, but a very nice outline of the types of genetic tests available....

Another from our friends at MPN Hub. Not a lot of detail, but a very nice outli...

•1 year ago

Disease characteristics and outcomes in pediatric and young adult patients with MPN

From our friends at MPN Hub. https://mpn-hub.com/medical-information/disease-characteristics-and-outcomes-in-pediatric-and-young-adult-patients-with-mpn

From our friends at MPN Hub. https://mpn-hub.com/medical-information/disease-ch...

•1 year ago

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New potential PV treatment

https://www.abc.net.au/radionational/programs/healthreport/treatment-hope-for-incurable-blood-cancer/102171406?utm_campaign=abc_radionational&utm_content=link&u

https://www.abc.net.au/radionational/programs/healthreport/treatment-hope-for-in...

•1 year ago

Stay on Bomedemstat or....not?

I have E.T. and originally was on H.U., but began blooming in skin cancers which has continued and experiencing greater fatigue when I began bomedmestat, a...

I have E.T. and originally was on H.U., but began blooming in skin cancers which...

•1 year ago

peg interferon and sun

hi everyone Looking for advice from you all. I’ve lived with diagnosis of PV now for 7 years managing on venesections and aspirin. Since October I’ve been...

hi everyone Looking for advice from you all. I’ve lived with diagnosis of PV n...

•1 year ago

Erythromelalgia?

I was diagnosed with cellulitis 5 or 6 weeks ago, I’ve had 2 lots of antibiotics, 2 scans to make sure no blood clots, this redness has spread around my leg...

I was diagnosed with cellulitis 5 or 6 weeks ago, I’ve had 2 lots of antibiotics...

•1 year ago

"The Verify Study" for PV Patients

Watching today CBS Saturday Morning News showed a short ad for the "The Verify Study" for PV Patient There were not many details mentioned but if interested...

Watching today CBS Saturday Morning News showed a short ad for the "The Verify...

•1 year ago

thoughts on this one?

https://www.mayoclinic.org/diseases-conditions/somatic-symptom-disorder/symptoms-causes/syc-20377776

https://www.mayoclinic.org/diseases-conditions/somatic-symptom-disorder/symptoms...

•1 year ago

enlarged spleen all of a sudden. Need advice talking to MPN specialist Monday

freaking out here because all of a sudden I’m feeling pressure right where my spleen is. On HU since last May, five days a week one pill. Talking to Stanford...

freaking out here because all of a sudden I’m feeling pressure right where my sp...

•1 year ago

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