Hi sally1976,

I just wanted to send a reply to welcome you to Cancer Chat and to say I'm sorry to hear of what you've been through - this sounds like a lot to deal with.

Hopefully you'll receive further replies on this thread, although it hasn't been active in a little while so if you don't then do feel free to create your own new discussion on the forum to connect with others and hopefully get some support.

If you feel you're struggling and would like additional help, please have a look at Cruse, who offer support to those who are grieving.

Wishing you all the best,

Ben
Cancer Chat Moderator

Hi Kaitlin, sorry to hear about your mum and also sorry that I don't have any answers for you, was kind of hoping you could help me actually. My mum has spent the last 2 years with crippling bone pain which was put down to osteoarthritis   has seen physio, had scans etc, only recently started developing lots of bruising everywhere, which she put down to old age. She can't even leave the house because walking is do painful. Anyway I finally made her go and get blood tests, she had a couple of sets and have now referred her to heamatologist for myloma staging. To me it sounds all a little late. In your experience how long do you think she has given her symptoms??

Hi I'm looking for information from anyone that has been in this situation. My mum was laid up in bed for months with a bad which we then found out last July that she had multiple myeloma she had 3 fractures in her spine from where the myeloma had spread to her spine. The cancer has formed tumours over most of her body in her bones. My mum has gone through a course of treatment and has had a pet scan and the cancer now shows that she has a bad tumour in her leg on the bone so her leg is close to breaking and she has another tumour at the bottom of her spine which is close to nerves and could make her paralysed.  She also has a tumour in her liver and stomach so now she will be starting radiotherapy and another course of chemo. Has anyone known of this cancer to spread how it has? Also her physical ability is really bad does anyone know sheathed ghis could get better? 

I was diagnosed 5 years ago with MM.  / smouldering and I've found that the information in the UK for MM patients is a hard to find unless you come here for information and advice. I actually found multiple sites, information, forums and every breakdown from people at my stage to others near the end stage. I wasn't told that much about the disease and I ended up in some right rabbit holes on the Web trying to find anything that matched the stage I was at or even near.

But the stages / processes/symptoms /effects etc that we are told or led to believe are "in the post", and  what MM  has in store for us doesn't fill you with joy.

I ended up after 6 months twice times weekly having to bloods taken and although they /even I knew something wasn't right. From light chains, Paraprotein levels sky high, Kappa this, Ilg, platelets that when a junior doctor suggested a bone biopsy to be sure because there was a good chance that they could accidentally link my symptoms with MGUS, as both diseases are practically the same., but very different.  MGUS is  Benin and rarely turns cancerous (although it has been known to). But by now after trawling every part of the world's cancer forums, and institutions I realised that our cancer is rare so there aren't that many forums for us and the ones I did find tended to be full of people over 65 and although un good spirits and sharing stories I went in once and I came away feeling like I'd lost a tenna but found a pound. But by the time it was suggested that a bone biopsy was the only thing left to find out why my blood was all over the place and I was told that the bad swollen knee 6 months prior was in fact a DVT in my knee and  that my blood cam clot at any time and my lungs were a hive and coated in blood clots (yet I'm never short of breath, no wheezing etc) , and it was by pure chance that one had broken free wandered off and stopped and clotted for a couple of days in my knee, then disappeared,, but long enough  thankfully for someone to know the signs because I certainly did not. me so now I have to take blood thinners indefinitely as my blood is vetI full of dea came come across a  University medical  student site which was the go to bible for anyone studying medicine, Inc. MM. and knew that they could be a good chance that