Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for May 2018

Terrified of seeing consultant tomorrow

Well after waiting since January I am finally (hopefully!) going to get my jak2 result and get a diagnosis tomorrow. Part of me just wants to know what it is...

Well after waiting since January I am finally (hopefully!) going to get my jak2 ...

Vicky_b

•6 years ago

23 Replies

Dealing with post-chemo/ET fatigue

Hi All - I was diagnosed with ET 8 months ago and am being treated with Hydroxyurea and aspirin. It's brought the platelet count down to almost normal, which...

Hi All - I was diagnosed with ET 8 months ago and am being treated with Hydroxyu...

ksos

•6 years ago

11 Replies

A Transplant Triumph. . .

Good Morning All , , hope you're not nursing hangovers after lifting a celebratory glass or two yesterday. . Apparently there was a wedding and a bit of a do....

Good Morning All , , hope you're not nursing hangovers after lifting a celebrato...

JediReject

•6 years ago

25 Replies

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Is a bone marrow biopsy crucial for a diagnosis of ET, or can chemo drugs be started without one?

Is a bone marrow biopsy crucial for a diagnosis of ET? Has anyone been prescribed chemo drugs to bring platelet level down. ( mine is 591) without having a...

Is a bone marrow biopsy crucial for a diagnosis of ET? Has anyone been prescribe...

Sarahjane100

•6 years ago

32 Replies

Venesections

I have PV and have been on daily aspirin and hydroxy since March. My first venesection in February was no problem, the second was also fine but with slightly...

I have PV and have been on daily aspirin and hydroxy since March. My first venes...

Peter18

•6 years ago

12 Replies

MF , ET JAK2

Hi All What a Glorious Day for Prince Harry and his bride. I personally wish Harry and Meghan Much Happiness so richly deserved. My day is not so happy sadly...

Hi All What a Glorious Day for Prince Harry and his bride. I personally wish Har...

pontygirl

•6 years ago

48 Replies

First Treatment of Peg

Hey guys! So I had my first jab yesterday 45mcg, platelets at 1072. I had no initial reaction to the interferon jab, and after 30 mins of sitting in the...

Hey guys! So I had my first jab yesterday 45mcg, platelets at 1072. I had no in...

Mackydee123

•6 years ago

17 Replies

Bad reaction to antibiotics

HI everyone. Comments please. After having a tummy bug I was bitten in bed! And the next day my joint in my right foot looked like Mount Etna. Inflamed...

HI everyone. Comments please. After having a tummy bug I was bitten in bed! A...

Garden987

•6 years ago

12 Replies

Electrolytes

Has anyone done any research into how an imbalance of electrolytes may affect us ?

Has anyone done any research into how an imbalance of electrolytes may affect us...

Juliet46

•6 years ago

6 Replies

Enlarged Spleen Sizing?

Morning all, Just received some paperwork stating that my Spleen is palpable at four fingers breadth below the coastal margin. Can anyone tell me what this...

Morning all, Just received some paperwork stating that my Spleen is palpable at...

P-O-T-S

•6 years ago

25 Replies

Anyone else had their resting pulse rate get lower and stay lower?

Hi. Well, I had a transfusion and it did raise my O2 sats from 93 ish to 98, which was great, but hasn’t yet had much effect on fatigue or mood. Which is a...

Hi. Well, I had a transfusion and it did raise my O2 sats from 93 ish to 98, w...

Rachelthepotter

•6 years ago

3 Replies

Good morning world it’s a brand new day 🎶🎶🎶

Hope you’re all feeling good!

Sand-Dancer

•6 years ago

12 Replies

Hydroxy liquid form

Hi everyone, I've not posted in a while but been reading tons of posts. I saw my heam on Monday and bloods all normal still 😁 I asked if I could try tablet...

Hi everyone, I've not posted in a while but been reading tons of posts. I saw my...

Lainy1

•6 years ago

8 Replies

Article re genetic mutations

Useful article discussing genetic mutations that impact prognosis. The table is especially interesting in terms of listing % chances....

Useful article discussing genetic mutations that impact prognosis. The table is ...

Paul123456

•6 years ago

8 Replies

Blood book update -ready on Thursday 17th May

Hi Just to update you on progress with the "blood book" - the development at Guy's of a (paper based) system for patients to have their blood results and...

Hi Just to update you on progress with the "blood book" - the development at ...

Rachelthepotter

•6 years ago

17 Replies

Pegasys blood results

Had my first results after two months at 45 mcg weekly, increased to 60 mcg last couple of weeks since 45 mcg was only giving me about 5 days symptom relief....

Had my first results after two months at 45 mcg weekly, increased to 60 mcg last...

Paul123456

•6 years ago

11 Replies

Uncuffed blood test

Does anyone have problems getting an uncuffed blood test done? I've had them ok at the hospital but at the gp they made a real fuss. She cuffed it to get the...

Does anyone have problems getting an uncuffed blood test done? I've had them ok ...

Vicky_b

•6 years ago

23 Replies

Medication Review Update!

So I met my new Consultant, she is happy that I’m a good candidate for meds as the migraines show evidence of blood flow restriction and is staring me on...

So I met my new Consultant, she is happy that I’m a good candidate for meds as t...

Mackydee123

•6 years ago

8 Replies

Mouth Sores from Pegasys

Any suggestions for treating mouth sores? I have been taking Pegasys since November, and recently started getting mouth sores. It seems to occur weekly, and...

Any suggestions for treating mouth sores? I have been taking Pegasys since Novem...

clevemic

•6 years ago

17 Replies

Change of Pegasys Dose

Just wanted to say a huge thank you to everyone who helped and replied to my post on Friday regarding my pegasys dose. I have successfully after speaking to...

Just wanted to say a huge thank you to everyone who helped and replied to my pos...

Poppy112

•6 years ago

5 Replies

Medication review

Hi all I’m 39 and diagnosed ET 1 year ago. My platelets are around 1000 and I’m on Baby Aspirin daily. I suffer badly with fatigue and forgetfulness, which I...

Hi all I’m 39 and diagnosed ET 1 year ago. My platelets are around 1000 and I’m...

Mackydee123

•6 years ago

27 Replies

effects

Has anyone ever had the hemo reduce the hydroxy when platelets are 415? I feel so bad on this drug? Skin cancers, hair loss, extreme tiredness,depression and...

Has anyone ever had the hemo reduce the hydroxy when platelets are 415? I feel ...

kp27kathleen

•6 years ago

17 Replies

Interferon alpha /babies

My partner is 35 and on interferon alpha 3 times a week , he is prv,et, jak2 pos . Does anyone know about fathering babies whilst on injections as this was...

My partner is 35 and on interferon alpha 3 times a week , he is prv,et, jak2 pos...

Brook04

•6 years ago

7 Replies

Sapphire anniversary!

Just had to share! We’ve been married 45 years today! How lucky are we? Also got a Saphire eternity ring to celebrate!

Just had to share! We’ve been married 45 years today! How lucky are we? Also ...

Sand-Dancer

•6 years ago

37 Replies

hip replacement with jakafi controlled polycythemia

I am 71 years old. for a year I have had worsening troubles with my hip. I've followed the protocol to heal with physical therapy, shot in hip, RICE etc. Two...

I am 71 years old. for a year I have had worsening troubles with my hip. I've f...

titanswomn

•6 years ago

13 Replies

Interferon/Pegasys

I posted this link earlier, has about 10 Presentations from the recent MPN Asia Conference http://mpnasia.com/site/mypage.aspx?pid=205&lang=en&sid=1206 Too...

I posted this link earlier, has about 10 Presentations from the recent MPN Asia ...

Paul123456

•6 years ago

3 Replies

MPN Chronicles Podcast, EP 02- Interview with Dr. Naveen Pemmaraju (un-covering Insomnia in MPNs and much more):

Hi Guys and Gals - Hope things are going well across the pond.....check out this interview discussing insomnia, MDS/MPN overlap, clinical trials, familial MPN...

Hi Guys and Gals - Hope things are going well across the pond.....check out this...

PVReporter

•6 years ago

2 Replies

THE GREAT OUTDOORS

My age is 74, I have had ET for 6 years for which I have been taking Hydroxicarbomide. As anyone on Hydrea will know, you have to protect your skin from the...

My age is 74, I have had ET for 6 years for which I have been taking Hydroxicarb...

ashby7763

•6 years ago

25 Replies

Skin conditions with MPN's and chemo

Just a quick link to colloidal oatmeal recipe for rashes that can develop while taking medications, dry and itchy skin etc. Only 3 ingredients; oatmeal,...

Just a quick link to colloidal oatmeal recipe for rashes that can develop while ...

fee13

•6 years ago

3 Replies

Change to pegasys

Been to the hospital today and have been changed to pegasys. First injection tonight. I am a little worried as I have been started on a dose of 180mcg/0.5ml...

Been to the hospital today and have been changed to pegasys. First injection ton...

Poppy112

•6 years ago

23 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2018

Terrified of seeing consultant tomorrow

Dealing with post-chemo/ET fatigue

A Transplant Triumph. . .

Is a bone marrow biopsy crucial for a diagnosis of ET, or can chemo drugs be started without one?

Venesections

MF , ET JAK2

First Treatment of Peg

Bad reaction to antibiotics

Electrolytes

Enlarged Spleen Sizing?

Anyone else had their resting pulse rate get lower and stay lower?

Good morning world it’s a brand new day 🎶🎶🎶

Hydroxy liquid form

Article re genetic mutations

Blood book update -ready on Thursday 17th May

Pegasys blood results

Uncuffed blood test

Medication Review Update!

Mouth Sores from Pegasys

Change of Pegasys Dose

Medication review

effects

Interferon alpha /babies

Sapphire anniversary!

hip replacement with jakafi controlled polycythemia

Interferon/Pegasys

MPN Chronicles Podcast, EP 02- Interview with Dr. Naveen Pemmaraju (un-covering Insomnia in MPNs and much more):

THE GREAT OUTDOORS

Skin conditions with MPN's and chemo

Change to pegasys

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