Posts - MPN Voice | HealthUnlocked

MPN Voice

11,250 members•15,727 posts

All posts for August 2018

jak2 I want to know if at all the symptoms you tried to clean the frontal sinus with purified water and do you see the results?

I want to know if at all the symptoms you tried to clean the frontal sinus with purified water and do you see the results? jak2 migreine

I want to know if at all the symptoms you tried to clean the frontal sinus wit...

ida777

•7 years ago

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Hello, I want to know if at all the symptoms you tried to clean the frontal sinus with purified water and do you see the results?

Aspirin Hello, I want to know if at all the symptoms you tried to clean the frontal sinus with purified water and do you see the results? I am waiting for...

Aspirin Hello, I want to know if at all the symptoms you tried to clean the fr...

ida777

•7 years ago

1 Reply

Useful read for MF patients on or considering Interferon/Pegasys

Lengthy piece of research and I need to try to understand certain aspects better. It discusses impact of Inf on high risk mutations plus impact of multiple...

Lengthy piece of research and I need to try to understand certain aspects better...

Paul123456

•7 years ago

11 Replies

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Drug comparison chart

I’ve posted before but worth another look for new arrivals. It’s a bit historic http://imagizer.imageshack.us/a/img924/8148/3pQG2M.jpg

I’ve posted before but worth another look for new arrivals. It’s a bit historic ...

Paul123456

•7 years ago

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Operation safe with ET jac2 pos ?

Hi all I’m having to have a what I hope is a minor op for a removal of a cyst but it needs to be done under a general anaesthetic I’m so scared I have pre op...

Hi all I’m having to have a what I hope is a minor op for a removal of a cyst bu...

catwoman2015

•7 years ago

15 Replies

Has anyone else on this forum had PV and moderate risk of familial breast cancer?

I have been diagnosed with pv for 2 years managing to maintain levels with venesections 3-6 monthly. I have always known at some point I’d b advised to take...

I have been diagnosed with pv for 2 years managing to maintain levels with vene...

Sanga

•7 years ago

2 Replies

PV and X-rays

Hi everyone Does anyone know if x-rays present any additional risk to PV patients? I’m only due one at the dentist but just thought I’d check as I don’t...

Hi everyone Does anyone know if x-rays present any additional risk to PV patien...

PT99

•7 years ago

3 Replies

Liposuction and an MPN

I would like to undertake some liposuction having gained 20 or so kilos since January 2016. My head says that is a ridiculous procedure, the other half says...

I would like to undertake some liposuction having gained 20 or so kilos since Ja...

Hidden

•7 years ago

21 Replies

Aspirin and stomach irritation

Hello everyone, For the last 2-3 days iam having a constant discomfort (like pricking of needles) in my left upper abdomen.its worse on empty stomach and...

Hello everyone, For the last 2-3 days iam having a constant discomfort (like pri...

Hidden

•7 years ago

23 Replies

Hydroxyurea or anagrelide

Hi. Long time since my wife was having her ruptured spleen removed in France. Currently she has been on hydroxyurea at three capsules a day. This has been for...

Hi. Long time since my wife was having her ruptured spleen removed in France. Cu...

jointpain

•7 years ago

6 Replies

Numbers dropping.

PV JAK2+ I have been on Hydro, aspirin and veneection for over 4 years, last October they decided to add Pega. Since then the numbers have dropped, but, not...

PV JAK2+ I have been on Hydro, aspirin and veneection for over 4 years, last Oc...

shiftzz

•7 years ago

6 Replies

Can anyone tell me more about Fetor hepaticus and Hepatic Encephalopathy?

My wife has had shunts in her liver and the last few months he breath has become really bad. It appears she has Fetor hepaticus and probably Hepatic...

My wife has had shunts in her liver and the last few months he breath has become...

sobrien1234

•7 years ago

1 Reply

Change of diagnosis, previously ET - Now Post ET Myleofibrosis JAK2 Negative, CAL R positive

As of today I have been diagnosed with Post ET Myleofibrosis intermediate Phase 2, JAK 2 Negative, CAL R Positive. The probability is that I was at the Pre...

As of today I have been diagnosed with Post ET Myleofibrosis intermediate Phase ...

SP-2008

•7 years ago

50 Replies

PV Treatment Options

For me the trickiest part about PV has been deciding optimum treatment plan. The options are: If low risk, venesections and aspirin. Otherwise principle choice...

For me the trickiest part about PV has been deciding optimum treatment plan. The...

Paul123456

•7 years ago

1 Reply

Poly

Hi I have had poly for over 20 years 9 tabs and 2 injection a day

Redrash

•7 years ago

1 Reply

Poly

Hi I have had poly for over 20 years 9 tabs and 2 injection a day

Redrash

•7 years ago

1 Reply

Poly

Hi I have had poly for over 20 years 9 tabs and 2 injection a day

Redrash

•7 years ago

Be the first to reply

Immunizations galore

My haemo has me set up to get a shingles shot and two pneumonia shots, because of my immune system being potentially lower due to the hydroxyurea. Public...

My haemo has me set up to get a shingles shot and two pneumonia shots, because o...

WileyFrench

•7 years ago

23 Replies

Venesections and iron deficiency

Hi everyone I have a diagnosis of polycyhthemia which I have recently started having venesections for (2 since April). After my second one I became really iron...

Hi everyone I have a diagnosis of polycyhthemia which I have recently started ha...

Elcee253

•7 years ago

21 Replies

Ruxo versus Best Available For MF

Of interest to anyone here with MF. Would be interesting to know the split of the ‘best available’ alternatives ie what % were on Pegasys and what was the...

Of interest to anyone here with MF. Would be interesting to know the split of th...

Paul123456

•7 years ago

2 Replies

Grapefruit and Peg?

Hi everyone I remember reading somewhere that you should avoid grapefruit if you are on Peg Interferon as it can interact with the drug. Anyway, I was out on...

Hi everyone I remember reading somewhere that you should avoid grapefruit if yo...

Mackydee123

•7 years ago

6 Replies

end stage MF

Can anyone advise me on what to expect from end stage MF My husband is getting worse and has now developed a heart problem which occurs during transfusions. He...

Can anyone advise me on what to expect from end stage MF My husband is getting w...

ardpatrick

•7 years ago

22 Replies

ET & MF

Hi Folks Question I keep forgetting to ask my Haematologist. Diagnosed with ET in April and then after BMB diagnosed with MF Intermediate 1 in May. I can't...

Hi Folks Question I keep forgetting to ask my Haematologist. Diagnosed with ET ...

pontygirl

•7 years ago

11 Replies

Pv specialist

How would I find a specialist in pv?

Emeraldpv

•7 years ago

4 Replies

Article on MPN related itching

Something afflicting many of us, to varying degrees....

Paul123456

•7 years ago

5 Replies

High platletts

Can a 650 platelet count cause lower leg to have big blood spots on lower leg. Didn't bump into anything. I am 71.

Can a 650 platelet count cause lower leg to have big blood spots on lower leg. ...

Keiki4me

•7 years ago

3 Replies

Want to understand ET

I was diagnosed with ET in September last year. After being ignored for over 7 years from my medical care. I have never really thought or looked into it, as at...

I was diagnosed with ET in September last year. After being ignored for over 7 y...

Avamia94

•7 years ago

11 Replies

Progression question

So, if the hydroxyurea keeps platelets in check, and the clopidogrel (and oodles of water) reduce platelet “stickiness”, and since the vast majority of ET...

So, if the hydroxyurea keeps platelets in check, and the clopidogrel (and oodles...

WileyFrench

•7 years ago

37 Replies

PV Related Headache?

I was flying back from Spain, just on the descent into the airport and experienced a sudden sort of sharp flashing, rippling headache up my forehead. Not a...

I was flying back from Spain, just on the descent into the airport and experienc...

Bluetop

•7 years ago

7 Replies

Polycythamia Libra vera

Had venesection number 7. today managed to get a quick word with the very busy consultant who looked confused when I asked him about my diagnosis a letter was...

Had venesection number 7. today managed to get a quick word with the very busy c...

john0084

•7 years ago

5 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2018

jak2 I want to know if at all the symptoms you tried to clean the frontal sinus with purified water and do you see the results?

Hello, I want to know if at all the symptoms you tried to clean the frontal sinus with purified water and do you see the results?

Useful read for MF patients on or considering Interferon/Pegasys

Drug comparison chart

Operation safe with ET jac2 pos ?

Has anyone else on this forum had PV and moderate risk of familial breast cancer?

PV and X-rays

Liposuction and an MPN

Aspirin and stomach irritation

Hydroxyurea or anagrelide

Numbers dropping.

Can anyone tell me more about Fetor hepaticus and Hepatic Encephalopathy?

Change of diagnosis, previously ET - Now Post ET Myleofibrosis JAK2 Negative, CAL R positive

PV Treatment Options

Poly

Poly

Poly

Immunizations galore

Venesections and iron deficiency

Ruxo versus Best Available For MF

Grapefruit and Peg?

end stage MF

ET & MF

Pv specialist

Article on MPN related itching

High platletts

Want to understand ET

Progression question

PV Related Headache?

Polycythamia Libra vera

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