You are here

Fibrosis

All,

Just a reminder to speak to your doctor before you try to interpret labs yourself. Was able to look at my bone marrow biopsy before the doc called me this morning to chat about it.  It did verify I am in Chronic phase and also noted -  FOCAL MILD RETICULIN FIBROSIS (MF1).  I started doing research on Myelofibrosis, which turns out to be a totally different thing.  He explained to me that he would expect to see some sort of fibrosis associated with CML.  He did note that Myelofibrosis, is a totally different diagnosis and that it would have been clear to the pathologist during his findings.  Again, before you go down dark holes on the internet, please make sure you consult with your Doc.  This will save a lot of stress and heart ache.

 

best,

Jon

Hi 

I did exactly the same thing with fibrosis.  My result report stated grade 1 so thought “well if it is a grade at all it’s serious”.  But I found nothing on the internet and my Dr. set me straight as well.  Of course I spent hours and hours searching for every other result as well....despite everyone telling me to stay away from google.   I think it gave me something to do until I was on a treatment plan.  
 

Luckily I’ve found all of the information I need in this awesome forum though.  
 

I am also newly diagnosed going on three weeks now, one full week on sprycel.

Just to offer something of a counter narrative: in my case, it has paid dividends to examine information and ask probing questions.

Had I not noticed and researched the acronyms 'MPD and CML' on a blood form, I would be none the wiser that doctors suspect I may have a form of leukaemia.

Having a heads up, and the subsequent opportunity to devour as much information about CML as possible, has helped me greatly and allowed me to be four or five steps ahead of the game.

I'm due to receive confirmation of whether I have CML on Monday.

Although I can understand clinicians not wanting to raise potential false alarms beforehand, it would have been an almighty shock if the first mention of 'cancer' or 'leukaemia' came more than 60 days after it was first suspected.