Hello Roisin
Welcome to the site. You have a problem and a half with pa in law and everything else. Will he talk to a Macmillan nurse? You could suggest it with an eye to future needs and general health rather than 'care', they are good at getting things sorted out.
Good luck with this
Love Helen

Well I now have 3 mm of hair and it seems darker as it grows, does this mean grey hair grows faster than coloured hair?
Have now been randomised to revlimid arm for maintenance on myeloma xi trial, so hoping for very few side effects.
Helen

Hi David
Mm is a very complex thing isn't it. I've probably had it for about 5 years but knew nothing about it except for a gradual decline in my haemoglobin. When blood bank expelled me last year for being anaemic I never thought it would be something as scary as this. Did you go on the sct route I know it must be on here somewhere but I can't…[Read more]

Hi Belles

yes I had a stem cell transplant (my own cells) at the beginning of September on ward 44. The hospital stay was just over 2 weeks and not as bsd as I thought it was going to be and my recovery has been fairly smooth as well so far. Your mum sounds like a fighter in spite of all the complications and I really hope things do get sorted…[Read more]

Hi David
Tumour just means 'lump', plasmacytoma is a lump with malignant plasma cells in it, peculiar to the myelomas, usually sited over central bones, spine, rib, hip, skull,sometimes in soft tissue too. Sometimes they are the start of mm, sometimes they come after and some people just get one, have it treated and never get another.
Hope…[Read more]

You look so lovely Gina take care of yourself ( and mum)
Helen

Hi Belles

I think it must have been another Wendy. I was on ward 44 MRI but that was about two months ago. How is your Mum doing, I have read your posts but didnt realise that she was being treated at the MRI.

Regards

Wendy

Just to add to the above, Lyrica is pregablin which I know is quite commonly prescribed for PN.

Hi Dai
Well I'd love to but I'm still so technically useless that I can't even put my photo on here, let alone the old ones!
Love Helen

4th from the right?
Helen

Dear David
How sad for you and your family, but you are right, we do have time to do stuff and say the things we need to say to the ones we love.
Helen

Hi Anne
I have had lots of hot flushes but I put them down to menopause but there is a thread on here somewhere where some of the gents have also experienced sweats. Dai and Tom i think. I think it might be listed under hot flushes and debs may have started it if you can track it from that.
Good luck with them , I find standing on a cold floor…[Read more]

Hi Gill and Stephen. No help from me I'm afraid. The combo bunged me up!!! Helen

Hi Paul
It's so good to get good news, makes the journey that bit easier.
Chin up got to be in peak condition for the sct.
Ps used to work at jimmy's on one of the orthopaedic wards, back in the 80's, lovely place, met my husband there.
Helen

Hi jo
What bad luck, I'll be thinking of you tomorrow with the bmb, I'm not looking forward to my next one.
Love Helen

Hi Eve mmm it really is very sad that people take the huff when clearly the system is at fault not the individuals, here's hoping the next visit is better and they are more professional about it, don't let the blip dampen the good news.
Love Helen

Hi Eve
I can totally sympathise, the long waiting in various places is outrageous. Particularly when you and Slim have been through such a difficult time. I really feel for you, it only adds insult to injury.
I've been trying to frame a complaint that sounds more like positive feedback,:-/ because I don't want to alienate people. Now that I am…[Read more]

Hi Gill
I' sorry to hear Stephens second sct has failed
I was on this combo as induction therapy for myeloma xi trial, I had all the tiredness, sickness, peevishness and generalised unpleasantness but for me it worked and dropped my light chains from 800 to 17 (normal) in 3 months. I went to work all the time I was on it but some days were very…[Read more]

Hi Belles and Bridget
I can't remember what day I had platelets I was keeping a diary until day 8 then things went down hill for me, but today I overdid it( cut down tree branches and up ladder mending shed roof for my mum and dad) after having flu and pneumonia vac this morning. I know I should know better but I felt soooooo well this morning!…[Read more]