Hi,

My mum has just been diagnosed with Intravascular Lymphoma, which is apparently 'extremely rare and aggresive'.  We are really struggling to find any easy to understand information about the illness and also find it hard to understand the outlook. She has just started R-CHOP which we do have information about and, although the doctors are amazing, they tend to focus on talking about the chemo as they are unsure about how the illness is likely to respond.  So we don't know how far advanced the illness is, how much of her neurological damage may be reversed, what the short term or long term looks like....the list of uncertainties goes on. 

So I was wondering if anyone else has experience of dealing with one of the more rare cancers - are there any useful sites for the patients (have found some medical papers online but I get bamboozled by the medical jargon).  Or probably more signifcantly, does anyone have any tips about how to cope with being so in the dark? 

I know that the outlook for anyone with cancer can be uncertain and none of us really know what the future holds, but I'd  like to know if other people with rare cancers feel the same. (And if anyone else has had a diagnosis of IVL I'd love to chat).

Thanks,

Natty