Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for August 2023

SCT update

Hello everyone, I was admitted to hospital on Saturday 30 th July, & started my chemo. I had my picc line fitted the day before. Transplant day was Friday...

Hello everyone, I was admitted to hospital on Saturday 30 th July, & started m...

SRH55

•10 months ago

54 Replies

CALR Antibody

Incyte has started Phase 1 trials for their CALR antinbody. They have high hopes for it. Below is a quote from their Chief Science Officer on their recent...

Incyte has started Phase 1 trials for their CALR antinbody. They have high hope...

CanadaG

•10 months ago

9 Replies

Pneumococcal Vaccine

Hi I have PV and I am 65 in October. I have been given an appointment for the pneumococcal vaccine. Just wondering how others were after getting the vaccine,...

Hi I have PV and I am 65 in October. I have been given an appointment for the p...

Hocus58

•10 months ago

9 Replies

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JAK Inhibitors Effective for Hair Growth in Alopecia Areata

Janus kinase (JAK) inhibitors effectively stimulate hair growth, compared with placebo, for patients with alopecia areata, according to a new systematic review...

Janus kinase (JAK) inhibitors effectively stimulate hair growth, compared with p...

Manouche

•10 months ago

2 Replies

Start of my SCT journey.2

Well, I have had my consultation with the Transplant team I seemed to have passed my MOT and apparently I have two donors lined up not a perfect match but...

Well, I have had my consultation with the Transplant team I seemed to have passe...

Grizly

•10 months ago

18 Replies

Jump in Haematocritt

My Haemoglobin from back end last year to a month ago was between 116 and 121. Hematocrit was 41%. Haematologist wouldn't give me iron tablets as last time...

My Haemoglobin from back end last year to a month ago was between 116 and 121. H...

mark382

•10 months ago

5 Replies

Confused

Ihave been told I have ET. I have just had my blood results back for JAK2 mutations, they were negative? I now need a BMB, has anyone else had negative bloods...

Ihave been told I have ET. I have just had my blood results back for JAK2 mutati...

Presley1935

•10 months ago

20 Replies

Agios and Alnylam sign agreement for siRNA candidate

« We are pleased to license this programme from Alnylam, the leading RNAi therapeutics company, with the goal of delivering a convenient, disease-modifying...

« We are pleased to license this programme from Alnylam, the leading RNAi thera...

Manouche

•10 months ago

2 Replies

Doing Peg Injections

I did my first peg injection on my own yesterday, first one was at the hospital. I think I did everything right but when I withdrew the needle there were a...

I did my first peg injection on my own yesterday, first one was at the hospital....

lizzziep

•10 months ago

13 Replies

time for action?

for years I have been told that l am ‘borderline anaemic’ and the latest FBC says my RBC has declined from 118 to 113 (normal range 130-180) Doc says check...

for years I have been told that l am ‘borderline anaemic’ and the latest FBC sa...

quanglewangle

•10 months ago

5 Replies

How to transfer a BMB slide from Scotland to US Doc

I am getting a routine BMB from the National Health Service in Scotland in the next couple weeks, I am having a consult with a expert at Mount Sinai in New...

I am getting a routine BMB from the National Health Service in Scotland in the ...

ainslie

•10 months ago

11 Replies

Hyponapea test

Just seen letter hospital sent to my gp. My sodium level is 134 and they suggested Hyponapea test. Any advice welcome on fluid intake. Never had cause to...

Just seen letter hospital sent to my gp. My sodium level is 134 and they sugges...

Mostew

•10 months ago

29 Replies

Peg Update - Good News

Had CBC this morning and just got the partial results (all but the thyroid tests) - very happy! For the first time in over 10 years (with one exception when I...

Had CBC this morning and just got the partial results (all but the thyroid tests...

Solyesh

•10 months ago

20 Replies

Agios Pharmaceuticals Announces Exclusive Worldwide License Agreement for Novel siRNA for the Potential Treatment of Polycythemia Vera

Preclinical siRNA Targeting TMPRSS6 is a Potential Disease-Modifying Treatment for Polycythemia Vera. « We look forward to initiating IND-enabling studies...

Preclinical siRNA Targeting TMPRSS6 is a Potential Disease-Modifying Treatment f...

Manouche

•10 months ago

8 Replies

First time Ruxolitinib and what to make note of, from Vietnam - a case of interest/study

I am writing on behalf of my mother who was diagnosed with PV back in 2002. The symptoms started with her in 2001 but it took over 1 year for my mother to get...

I am writing on behalf of my mother who was diagnosed with PV back in 2002. The ...

Cranston3x

•10 months ago

25 Replies

cold legs

Hi all, after a long time just trying to get rid of PV problems. However, my GP has now recommended a vascular surgeon. She did not give me any names, so I...

Hi all, after a long time just trying to get rid of PV problems. However, my GP...

monnywese

•10 months ago

7 Replies

CBD fruit jellies

Are these safe to take for arthritis in my feet I take Hydroxy and aspirin

Tilly_Rose

•10 months ago

12 Replies

VAF Linked With Coronary Artery Calcification in MF

https://t.co/1FqaVnRt8X “JAK2V617F variant allele frequency might be a useful clinical tool in selecting patients with MPNs with increased risk of...

https://t.co/1FqaVnRt8X “JAK2V617F variant allele frequency might be a useful cl...

Manouche

•10 months ago

3 Replies

Video of the MPN Voice ‘virtual’ forum focussing on PV, held on Thu 27 Jul 2023

This ‘virtual’ forum focussed on Polycythaemia Vera (PV) and features talks from: Prof Claire Harrison, Guy’s & St Thomas’ NHS FT; Dr Anna Godfrey, Cambridge...

This ‘virtual’ forum focussed on Polycythaemia Vera (PV) and features talks from...

Mazcd

Partner•10 months ago

4 Replies

Video of the MPN Voice patients’ in-person forum Galway, Sat 24 June 2023

This in-person forum was held in Galway, Ireland on Sat 24 June 2023, with MPN patients and family/friends attending from across Ireland. Programme...

This in-person forum was held in Galway, Ireland on Sat 24 June 2023, with MPN p...

Mazcd

Partner•10 months ago

1 Reply

tasquinimod in myelofibrosis (MF)

»The data showed that treatment with this drug results in normal blood counts, reduction of fibrosis in the bone marrow and normalization of spleen size in...

»The data showed that treatment with this drug results in normal blood counts, ...

Manouche

•10 months ago

10 Replies

Bomedemstat trials

Hi everyone, I haven’t posted for a while as I’ve been trying to ignore this condition! Calr positive ET. I’m terrified of going back on Hydrea due to...

Hi everyone, I haven’t posted for a while as I’ve been trying to ignore this con...

myllo

•10 months ago

3 Replies

Bomedemstat trials

Hi everyone, I haven’t posted for a while as I’ve been trying to ignore this condition! Calr positive ET. I’m terrified of going back on Hydrea due to...

Hi everyone, I haven’t posted for a while as I’ve been trying to ignore this con...

myllo

•10 months ago

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Interferon Consideration Update

hi all, I wanted to provide an update on the ongoing discussions I’ve been having with the consultants at Guys regarding the consideration of me starting...

hi all, I wanted to provide an update on the ongoing discussions I’ve been hav...

Steve_Essex

•10 months ago

23 Replies

LDH high

Looking back, my specialist tested my LDH at diagnosis and it was in fact elevated. He told me that it’s very common for MPN’s to cause elevated LDH levels and...

Looking back, my specialist tested my LDH at diagnosis and it was in fact elevat...

JAKboy

•10 months ago

3 Replies

Jakafi + Grapefruit

Just came across this warning on Drugs.com. I had never seen before. Have those of you on Jakafi (ruxolitinib) seen this warning? ruxolitinib food...

Just came across this warning on Drugs.com. I had never seen before. Have those...

hunter5582

•10 months ago

49 Replies

Treatment-free remission as a new goal for patients with PV

From our friends at MPN Hub, https://mpn-hub.com/medical-information/treatment-free-remission-as-a-new-goal-for-patients-with-pv Conclusion...

From our friends at MPN Hub, https://mpn-hub.com/medical-information/treatment-f...

hunter5582

•10 months ago

22 Replies

Update

Spoke with my key worker waiting fir doctor to ring me Tommorow x

Mandz12

•10 months ago

3 Replies

Antimalaria Medication and Jakavi

Hello dear all, Things are going well with my husband who has myelofibrosis. Jakavi has been a live changer and he responds very well to it. We are ready to...

Hello dear all, Things are going well with my husband who has myelofibrosis. J...

Ticotopia

•10 months ago

12 Replies

Exercise

Just to say Thank you to Maz for her message about exercise even if you don't think you can! I was recently diagnosed with ET and had HU for a few weeks,...

Just to say Thank you to Maz for her message about exercise even if you don't th...

Leveret20

•10 months ago

26 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2023

SCT update

CALR Antibody

Pneumococcal Vaccine

JAK Inhibitors Effective for Hair Growth in Alopecia Areata

Start of my SCT journey.2

Jump in Haematocritt

Confused

Agios and Alnylam sign agreement for siRNA candidate

Doing Peg Injections

time for action?

How to transfer a BMB slide from Scotland to US Doc

Hyponapea test

Peg Update - Good News

Agios Pharmaceuticals Announces Exclusive Worldwide License Agreement for Novel siRNA for the Potential Treatment of Polycythemia Vera

First time Ruxolitinib and what to make note of, from Vietnam - a case of interest/study

cold legs

CBD fruit jellies

VAF Linked With Coronary Artery Calcification in MF

Video of the MPN Voice ‘virtual’ forum focussing on PV, held on Thu 27 Jul 2023

Video of the MPN Voice patients’ in-person forum Galway, Sat 24 June 2023

tasquinimod in myelofibrosis (MF)

Bomedemstat trials

Bomedemstat trials

Interferon Consideration Update

LDH high

Jakafi + Grapefruit

Treatment-free remission as a new goal for patients with PV

Update

Antimalaria Medication and Jakavi

Exercise

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