Guidelines for best practice for diagnosis and treatment of MPNs
Rachelthepotter2 months ago
I may not have made it clear that this link
is to the state of the art guidelines for what a patient should ...
7 Replies7 Likes
MF transplant update - discharged from BMT unit and back home
Simon962 months agoPOPULAR
Hi All, delighted to report that I am back home from my local BMT unit and will now be treated as an outpatient. Still along way to go.
51 Replies20 Likes
Guidelines for MPN diagnosis and treatment , and a personalised risk calculator
Hi I had a look at the NEJM pape Maz posted , and here is a direct link to the MPN Personalised Risk Calculator. It is, at the moment, t...
14 Replies15 Likes
MPN Dictionary of Terms
PVReporter2 months ago
I hope your find this page helpful. Learned a good bit just putting it together - pvreporter.com/mpn-cancer-d...
David - PV Reporter
12 Replies4 Likes
Leukaemia Care Fatigue Day
Pauline432 months ago
I said I would report back on this Information Day in Sheffield - here goes! The speaker throughout the day was Dr Anne Johnson, a consultan...
7 Replies5 Likes
Jane-r2 months ago
If taking Hydroxycarbamide what answer should you give when asked if on chemotherapy for travel ins . I Declare ET but unsure on that ques...
Pain meds for PV symptoms
Titatagg2 months ago
Has any one been told not to take Ibuprofen (NSAID) for pain relief for PV symptoms?
Confused regarding polycythemia Vera and secondary polycythemia.
Lionheart1232 months ago
I have just being diagnosed with liver fibrosis stage three and my hepatologist has suggested that due to my high haemoglobin, red blood cou...
Help please from all with Mpn’s!
Loubprv2 months ago
I’ve been asked to address about 60 haematology nurses and a few haematologists at the Christie in Manchester with regard to how it feels...
19 Replies3 Likes
skodaguy2 months ago
Recently saw Claire because itching has been a real torment lately. She recommended I try fexofenadrine so I looked it up . Was surprised to...
6 Replies3 Likes
Dianne-Guisborough2 months ago
Just returned home from another fantastic MPN forum at Newcastle . It was great to see such a massive turn out and so many people receiving...
1 Reply1 Like
Skye3332 months ago
Hi I have been asked if I would be interested in doing a trial. I take Ruxilitinib for MF and the trial is to take Tamoxifen as well.
Newcastle Forum 12/10/18
dianetat2 months ago
Just back from a very informative forum where my partner and I met some lovely people. As the daughter of someone with MDS/MPN with MF I fou...
12 Replies2 Likes
SENSITIVE STOMACH ASPIRIN
ashby67082 months ago
ET, jak2+, 74 Male. Been on Hydroxycarbamide for 5 years and looking for a quieter life, hence aspirin, which I tried before and got tummy p...
Established Diagnosis of Myelofibrosis
jointpain2 months ago
Well, after months of not really knowing, my beautiful wife Joyce has a confirmed diagnosis. Her BMB taken 24 days ago quote "shows early ch...
15 Replies11 Likes
Confused - JAK2 / CALR mutations and triple negative
Lina_uk2 months ago
I've seen some suggestions that you can only have one or the other but also that you can have both mutations. Is anyone able to clari...
My child's flu nasal spray
john00842 months ago
My daughter is due for her immunization soon and I was wondering as I'm on a low dose of hydroxy if it will be ok. I have a lot of contact w...
Is it possible to test negative for an MPN after underging a BMB, but still have an MPN?
Sarahjane1002 months ago
I have been seeing a heamotoligist for almost a year now, after my GP noticed my platelets were raised consistently. I am triple negative fo...
Pegasy and interferon dosage
Lilly19582 months ago
My heamo prescribed for me Pegasy 135mcg, he said dosage is same like roteferon 3UI, one weakly.Last year I was on only 3ui roteferon weakl...
Just been diagnosed
Deefen2 months agoPOPULAR
Just introducing myself. I’ve just been diagnosed with ET - high platelets turned up randomly in a yearly blood test. I’ve now t...
30 Replies1 Like
Dealing with tiredness
RosemaryHarper2 months ago
I have PV and have been monitoring the exercise I take by wearing a fitness band (which also records sleep patterns which is very useful!) T...
3 Replies10 Likes
AndW652 months ago
Hi everyone, I'm 53 live in Gibraltar and have recently been diagnosed with Polycythaemia Vera. My bone marrow biopsy confirmed that I was J...
9 Replies4 Likes
Lack of bruising, puzzling!
Vicky_b2 months ago
I dropped a big cupboard on my foot on Sunday. Went to A&E Monday as I couldnt walk. Xray showed no breaks.
I still cant walk & would have ex...
Correlation Between HCT and Ringing in Ears
Sklines2 months ago
Is there a correlation between high HCT and or platelets and ringing in ears?!
Flu vaccination- intramuscular or subcutaneous aministration.Does it matter?
Joe5002 months ago
Hi. My husband reacted quite badly to the flu and pneumonia vaccines a few years ago. After that he was advised by one of the haematologists...
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Does Interferon affect BMB results?
fee132 months ago
Dx ET JAK2+ with platelets rarely over 600 (just from blood tests). Was on hydroxyurea for 3 years, now on Roferon A (interferon) 3 x weekly...
7 Replies2 Likes
New haem, new diagnosis?
Aime2 months agoPOPULAR
Hi Guys, just a quick update. On bus travelling home after a worthwhile consult with new haem yesterday. It turns out I may not have polycy...
26 Replies8 Likes
beetle2 months ago
Maz do you know when this year’s Christmas cards will be ready? Thank you
Delaying Treatment No More - Pegasys, here I come.
annem222 months ago
It's been a little over 2 weeks since my first MPN doctor prescribed me with Pegasys which I decided to put off. I was debating for a while...
16 Replies1 Like
Living in abroad (outside the EU) with an MPN
Trocken2 months ago
I have had a dream for many many years that I would move with my family to another country, probably Canada or USA. Has anyone done this aft...
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