Is Idiopathic Myelofibrosis cancer?

[Actuallyclaire]

I’ve read a lot about this disease myelofibrosis which I’ve been diagnosed with but I’m unclear if the idiopathic before it changes the disease in any way. I can’t find a lot of information when I research “idiopathic myelofibrosis” and im wondering if it is considered cancer or not.

[jane13]

"idiopathic" , never heard of it before in the context of MF, had to look it up = "of unknown cause". So I can't think that calling it "idiopathic" or not makes any difference?

very sorry to hear of your diagnosis at such young age: try contacting Macmillan Cancer Support, as they will have people who can talk to you about all the difficult decisions you are facing

[Simon96 in reply to jane13]

Hi Jane, from the time of Claire's posts I suspect that she is from the Americas. What is now called Primary Myelofibrosis was commonly called Agnogenic Myeloid Metaplasia or Idiopathic Myelofibrosis in the United States. It is just a regional / era naming difference. Best wishes Simon.

(P.S. I have replied more fully to Claire in her other post)

[socrates_8]

Hey Claire... :-0)

Welcome to our rather exclusive little club - the MPN/MF club.

I also have 'idiopathic' MF, and all idiopathic means essentially is that the disease arises of its own unknown cause somewhat spontaneously...

That however, is but half the truth, for usually, (unlike in your own case), people do not contract cancers unless they are in their more senior stages of the lives, and after a life-time of exposure to various toxic substances that we humans accumulate, and eventually cause cellular mutations, as I understand it...

However, again, you are so very young Claire, and there could be other reasons like one's heritage for instance, that "might" play a part somewhere in the long distant past etc...

In my own case, my father did have three remissions of Non-Hodgkins lymphoma, however, he survived it and passed away three days before his 87th birthday...

No one really knows for certain or so it would seem...

In answer to your question:

Is idiopathic MF a cancer?

Here is a link to the Mayo clinic in the States, that states that it definitely is a type of cancer, unfortunately...

mayoclinic.org/diseases-con...

Hope this helps Claire...

Best wishes

Steve

(Sydney)

[JediReject in reply to socrates_8]

Nicely summarised my antipodean friend. Hope you are going great guns down under.. . .

Chris

[socrates_8 in reply to JediReject]

Hey Chris...

I'm fine my northerner friend, (how are you doing Chris?).

Do you realise that circa 88% of the world's people actually live in the northern hemisphere? It is a rather fascinating fact when one thinks it through.

On the other hand, us antipodeans are still spoiled finding somewhat pristine, and uncrowded locations... However, and that said, we are still members of these some MPN clubs etc...

I am just recovering from a semi-serious cycling accident some 6 weeks ago. However, I am on the mend, and I recommenced cycling as of yesterday.

Hope all is well in your world too Chris...

Best

Steve

[Hidden]

Hi Claire,

Sorry for slow reply. I have been in hospital having a stem cell transplant and came home last night. Yes, idiopathic means unknown and MF is a leukaemia so it is a cancer.

I was diagnosed when I was 42. I had nearly 11 years treatment free before I had to go for the cure, stem cell transplant. Today is +20 and so far so good.

Carry on enjoying your life to the full!

Best wishes

Martin