myelofibrosis

[glyndale]

Does anyone on here know if mf should always be treated,main symptom is fatigue, slightly enlarged spleen and slight anaemia ( for 3 years)not sure about the watch and wait approach.

[katiewalsh]

Hi. Do you have a doctor treating you who specializes in MPNs? This is really important for all MPN patients but especially when your MPN appears to be progressing at all. If you don’t have one, please get one. Mine is a 90 minute drive and I see him twice a year and am followed by an oncologist the rest of the time. But if I have any type of change I will see my specialist as soon as possible. Many patients on here didn’t have a specialist until they were urged to by members of this forum. After seeing a MPN specialist, all of them were very pleased with the improved care or just the oversight by someone who knows the very best treatment approach for that individual. Let us know how things go. Katie

[glyndale in reply to katiewalsh]

Ok thank you

[Leighcox85]

there was a study based on mf that received treatment straight away vs the watch and wait process people that did the watch and wait had poorer outcomes in the long run I was part of the study and I was watch and wait I have had mf diagnosed in 2009 and my outcomes have not been great the one thing I will advise you now at the start is advocate for yourself research everything and get a specialist the earlier the better iam with st guys in London it’s a 4 hour trip but so worth it iam currently beginning sct when I get over the septis I wish you luck and iam so sorry you have go through this if you ever want someone to talk to there’s so many wonderful people on this group and I will do my best to help in anyway

[glyndale in reply to Leighcox85]

ok thank you

[Bulstrode5]

I was watch and wait for a long time before I was put on ruxalitinib when my spleen increased in size v quickly

[glyndale in reply to Bulstrode5]

ok thank you

[Mazcd Partner MPNVoice]

hi Glyndale, it might help to have a discussion with your haematologist about this to discuss your concerns that you are on watch and wait, and what options are available for medication/treatments. Best wishes, Maz

[glyndale in reply to Mazcd]

thank you

[ainslie]

that’s definitely one for a expert Haem if poss, nobody on here can advise treat or not treat, that’s one for expert Haem who knows your situation

[glyndale in reply to ainslie]

ok thank you