myelofibrosis

[glyndale]

Has anyone had mf for a long time and does treatment stop progression, thinking about starting medication which i think is my only option Thank you

[CraftySpider]

Hi Glydale, I have had primary MF for 19 years, picked up by a routine blood test at age 40, with no symptoms. Have been on low dose aspirin and Hydroxycarbamide for 18 1/2 years now, with no disease progression.

[glyndale in reply to CraftySpider]

oh thanks for replying,im not officially diagnosed yet but my platelets are now normal,slightly low hb and slightly enlarged spleen and of course fatigue,so i think i will be started on treatment i think i need to stop googling mf because the prognosis frightened me,so i will stick to sites like this which sound more positive. Thanks again.

[CanadaG in reply to CraftySpider]

Thank you for sharing that, glad to hear your MF is not progressing. I’m a 46 year old man living in Canada who was recently diagnosed with MF. Like yourself, I don’t really have any symptoms. My doctor has suggested putting me on hydrox but currently I’m not on any treatment. The driver mutation I have is CALR+ which I’m told can be important to the prognosis and treatment plan. Can I ask if you know which driver mutuation (if any) you have? Thanks in advance.

[CraftySpider in reply to CanadaG]

Hi CanadaG, sorry I have no idea which CALR mutation I have, don’t really understand all the technical details ! All I know is that I have the. JAK2 V617F mutation.

[CanadaG in reply to CraftySpider]

ok thanks for the prompt response.

[Otterfield]

I remember you said you are seeing your consultant this week. I think it's important that you wait for this consultation before you assume that you have MF. Why spend time worrying and googling before you know anything is wrong.

[glyndale in reply to Otterfield]

yes your right im making myself 100% worse googling.i see him tomorrow so hopefully have some answers. Thank you.

[Hopert]

hello Glyndale, my husband was diagnosed with Myleofibrosis after pre -op blood tests for a knee replacement just over a year ago. The knee replacement operation did not go ahead. he had no symptoms so this diagnosis came as quite a shock. He currently has hemotologist appointment every 16 weeks and only takes aspirin. He has itchy skin and sweats sometimes. He has lost weight too but not sure if this is

connected but still doing ok which we hope continues. He does get stressed with worrying about what will happen to him next. He stopped using google as this made him worse. We live in Northumberland, England.

Take Care

[glyndale in reply to Hopert]

oh thank you for your reply,i was advised not to use google just sites like this,there is an mf private support group on facebook which i joined which is also quite good if you use facebook.i am glad he is doing ok and wish you both well.

[Hopert]

Thank you. we will look at Facebook. Take care. Xx

[PhysAssist]

Hi Glyndale,

Can you offer any follow-up?

Specifically, what happened at your consultant appointment?

Best,

PA

[glyndale in reply to PhysAssist]

Hello I am having a bone marrow biopsy next week ,so hopefully get some answers Thank you.

[PhysAssist]

Hi Glyndale,

Good to hear that, thanks for the update!

The day that I had mine was not the best day I ever had, but it was not the worst one either- waiting for the results may have been the worst part though.

It's the definitive way to know for sure what's going on and what stage it is at.

Best,

PA

[glyndale in reply to PhysAssist]

yes waiting for the results will be worrying but it has to be done ,kind regards