Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,843 posts

All posts for December 2023

left side upper body pain, ET

Hi all, I’m gonna try here to see if anyone has experienced pain in the upper body (one-sided) for a long time as a result of their mpn or medication? Feel...

Hi all, I’m gonna try here to see if anyone has experienced pain in the upper b...

ts75

•8 months ago

5 Replies

Pegasus

I started taking Pegasus 2 months ago and the first few injections ( small dose 0.2) seemed lime it was great. they had me increase to 0.25 and 0.3 and have...

I started taking Pegasus 2 months ago and the first few injections ( small dose ...

MDI55

•8 months ago

2 Replies

MPN Specialist

Hi folks I’ve reached the point where I feel it’s time to get a MPN specialist involved in my care after years with the local hospital haematology dept. So...

Hi folks I’ve reached the point where I feel it’s time to get a MPN specialist...

PT99

•8 months ago

7 Replies

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

Prof Harrison Interview report.

Just in case you missed it... https://hospitalhealthcare.com/clinical/oncology/managing-blood-cancer-claire-harrison-on-ruxolitinib-for-polycythemia-vera/...

Just in case you missed it... https://hospitalhealthcare.com/clinical/oncology/...

AirconBob

•8 months ago

1 Reply

haemaglobin low

I had bloods done, and pharmacist phoned and said I should visit GP as haemaglobin was low. I was diagnosed 18 months ago with ET, Jak 2. Does anyone know...

I had bloods done, and pharmacist phoned and said I should visit GP as haemaglob...

Hannah2308

•8 months ago

18 Replies

Sweating at night

I am on Besremi. I started to sweat at night. What does it mean with PV? 9 years from my diagnosis. What do you think about it, please? Recommendations

I am on Besremi. I started to sweat at night. What does it mean with PV? 9 yea...

SoledadBarcelona

•8 months ago

4 Replies

Reducing Pegasys

Hi folks Has anyone who has reduced pegasys dose seen an increase in spleen size? Thanks Pete

Hi folks Has anyone who has reduced pegasys dose seen an increase in spleen siz...

PT99

•8 months ago

3 Replies

Pegassis start

Hello All I'm 63 years old and I have polycythemia vera,the doctor suggested that after 13 years of hydrea to start treatment with pegassis. What do you...

Hello All I'm 63 years old and I have polycythemia vera,the doctor suggested th...

cata

•8 months ago

40 Replies

Probiotics.

Wishing everyone on this fantastic supportive. Group a Very Happy Christmas and New Year. Can anyone tell me if I can take probiotics with interferon. Hydroxy...

Wishing everyone on this fantastic supportive. Group a Very Happy Christmas and ...

lindyloulou

•8 months ago

14 Replies

Individualized Dosing of Ropeginterferon Alfa-2b Ensures Optimal Response in Patients with Low-Risk Polycythemia Vera (PV)

Conclusions: High long-term response rates (80.4% at 24 months; 73.2% at 72 months) were achieved with ropeginterferon alfa-2b treatment in the low-risk PV...

Conclusions: High long-term response rates (80.4% at 24 months; 73.2% at 72 mon...

Manouche

•8 months ago

5 Replies

blotchy itchy feet

I have ET and experiencing very blotchy itchy soles and sides on feet . Anyone else have this ? Gets very red and itchy and then skin peeling off . Will have...

I have ET and experiencing very blotchy itchy soles and sides on feet . Anyone e...

HazeBlue

•8 months ago

9 Replies

Advice about Hydroxycarbamide/ Anagrelide please

Hi everyone I've not posted for a while . I was diagnosed with PV in December 2022 and I have been taking peg interferon since February this year. At my...

Hi everyone I've not posted for a while . I was diagnosed with PV in December...

Blonde25

•8 months ago

9 Replies

Interferon

ET / JAK2pos diagnosed September 2023 age 66yrs. I’m collecting my Interferon therapy today after seeing my Specialist in Oxford (UK) yesterday. Recent...

ET / JAK2pos diagnosed September 2023 age 66yrs. I’m collecting my Interferon th...

Carol0925

•8 months ago

10 Replies

ET/PV/MPN-U

Hi, this is my first post. I have been inspired by others’ positive feedback and useful information sharing to share my journey so far. It was diagnosed with...

Hi, this is my first post. I have been inspired by others’ positive feedback and...

Mookat4

•8 months ago

7 Replies

Thankyou

Just a quick post to say Thank you for all the info on Peg and Angrelide.Just taken my first 45mg of Peg, which is taken fortnightly. Feeling ok,sore leg(...

Just a quick post to say Thank you for all the info on Peg and Angrelide.Just ta...

Spanelmad

•8 months ago

22 Replies

Strange Experience

Has anyone had a similar experience? I suddenly had an excruciating pain half-way down my calf on the outside of my right leg. This lasted about 12 hours but...

Has anyone had a similar experience? I suddenly had an excruciating pain half-wa...

Mwalimu

•8 months ago

2 Replies

low blood sugar

I had my blood work done yesterday at the clinic for ET. I am on HU 500 mg every other day. Platelets were 482 which I am happy about, however my blood sugar...

I had my blood work done yesterday at the clinic for ET. I am on HU 500 mg every...

Plate

•8 months ago

2 Replies

Another update….high platelets….

Just a quick recap and an update on my latest appointment…. I have been under the care of an Haematologist for two years now, referred by my GP for...

Just a quick recap and an update on my latest appointment…. I have been under t...

Purdy13

•9 months ago

12 Replies

white capsules vs pink/green capsules Hydroxycarbamide

Hi all Have any of you had the plain white capsules of Hydroxycarbamide instead of the Pink/Green capsules ? I’ve been taking the pink/green capsules made by...

Hi all Have any of you had the plain white capsules of Hydroxycarbamide instead...

130396

•9 months ago

36 Replies

Recent appointment

Hi guys I had an appointment with my consultant yesterday - first time in a year although my bloods have been regular checked. I’m 54 and have PV. I’ve been...

Hi guys I had an appointment with my consultant yesterday - first time in a yea...

PT99

•9 months ago

7 Replies

Peripheral neuropathy

Hi, wanted to know if anyone on Anagralide suffers from numb feet? I have been on it for 5 years with E.T. and this numbness is getting worse as its affecting...

Hi, wanted to know if anyone on Anagralide suffers from numb feet? I have been o...

Benjamin12

•9 months ago

12 Replies

Does anyone else with PRV have tooth loss?

Ive read posts on a couple of people on here that have PRV that have real bad tooth loss and or broken teeth. I noticed in their posts that it was after having...

Ive read posts on a couple of people on here that have PRV that have real bad to...

gtr1963

•9 months ago

7 Replies

HU and AST?

PCP ran blood panels for upcoming visit. I resumed HU 500mg three times a week about two and half months ago. Disturbing results came in tonight on patient...

PCP ran blood panels for upcoming visit. I resumed HU 500mg three times a week a...

JAB6

•9 months ago

5 Replies

Ruxolitinib Combinations Reduce Spleen Volume in Myelofibrosis: Combos with navitoclax/pelabresib led to more patients achieving reductions

SAN DIEGO -- Combining the Janus kinase (JAK) inhibitor ruxolitinib (Jakafi) with either navitoclax or pelabresib led to more patients with myelofibrosis...

SAN DIEGO -- Combining the Janus kinase (JAK) inhibitor ruxolitinib (Jakafi) wit...

PhysAssist

•9 months ago

Be the first to reply

Hoping there's no need to worry.

I haven't seen my haematologist since before Covid struck the world. I've had phone appointments every 3 - 4 months and now my appointment has been brought...

I haven't seen my haematologist since before Covid struck the world. I've had p...

MaggieSylvie

•9 months ago

20 Replies

The Video Journal of Hematology and Hematologic Oncology- MNP Channel

Take a look at any of these that may interest you:...

PhysAssist

•9 months ago

3 Replies

Peginterferon alfa-2a

Hola! I'm new to this group and newly diagnosed with essential thrombocythemia. The treatment prescribed is peginterferon alfa-2a. So far I have done one...

Hola! I'm new to this group and newly diagnosed with essential thrombocythemia. ...

LisaLoveTacos

•9 months ago

12 Replies

Right dose of Besremi

Hi, I last posted here four months ago while awaiting the effects of Besremi:...

Hi, I last posted here four months ago while awaiting the effects of Besremi:.....

skakulec2

•9 months ago

3 Replies

Losing hope

I have had the worst possible appointment with my consultant today. My recent bone marrow biopsy shows 14% blasts. 20% would indicate AML. I am starting...

I have had the worst possible appointment with my consultant today. My recent bo...

Otterfield

•9 months ago

79 Replies

Had a call from Guys

I’ve had the call from Guys I should have had 2 weeks ago. Apparently there was “miscommunication”, I did email Professor Harrison to see what was happening....

I’ve had the call from Guys I should have had 2 weeks ago. Apparently there was ...

lizzziep

•9 months ago

18 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for December 2023

left side upper body pain, ET

Pegasus

MPN Specialist

Prof Harrison Interview report.

haemaglobin low

Sweating at night

Reducing Pegasys

Pegassis start

Probiotics.

Individualized Dosing of Ropeginterferon Alfa-2b Ensures Optimal Response in Patients with Low-Risk Polycythemia Vera (PV)

blotchy itchy feet

Advice about Hydroxycarbamide/ Anagrelide please

Interferon

ET/PV/MPN-U

Thankyou

Strange Experience

low blood sugar

Another update….high platelets….

white capsules vs pink/green capsules Hydroxycarbamide

Recent appointment

Peripheral neuropathy

Does anyone else with PRV have tooth loss?

HU and AST?

Ruxolitinib Combinations Reduce Spleen Volume in Myelofibrosis: Combos with navitoclax/pelabresib led to more patients achieving reductions

Hoping there's no need to worry.

The Video Journal of Hematology and Hematologic Oncology- MNP Channel

Peginterferon alfa-2a

Right dose of Besremi

Losing hope

Had a call from Guys

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