[HelenParticipant]

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 this helps
Helen

[HelenParticipant]

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

[HelenParticipant]

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

[HelenParticipant]

4th from the right?
Helen

[HelenParticipant]

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

[HelenParticipant]

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 in bare feet the fastest cure:-)
Helen

[HelenParticipant]

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

[HelenParticipant]

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

[HelenParticipant]

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

[HelenParticipant]

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

[HelenParticipant]

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 more recovered it doesn't look like a big problem in the scheme of things but when I was very ill, frightened and extremely vulnerable it was another area of my life over which I had no control, was uncomfortable and sensitive. Now I know I need to say something but I don't have the anger left in me and feel like leaving it well alone. It's a bit like poking a wasps nest!
Helen

[HelenParticipant]

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 bad and retrospectively I was probably not much use there. I did keep a day by day diary of it but there was no pattern of good days and bad days, it was a cumulative effect and I seem to have got wearier and wearier as the months wore on. My philosophy throughout was just 'throw it all at me and I'll do anything if it works no matter how I'll I feel'. I did take my temp every day and that was just as well as I got 2 chest infections and the only signs were a small temp rise for a day and was poor at recognising the signs of real illness among the tiredness.
Is this any use?
Helen

[HelenParticipant]

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! Hey ho if you don't try you can't work out if you are improving.
How are you today Bridget?
Helen

[HelenParticipant]

Hi Bridget
Hope the sickness is settling for you, well done with the injections.
Helen

[HelenParticipant]

Hi Belles
High temp is quite common, I had temp of 40 off and on for 3 days, days 8-11, given ice and antibiotics, eventually settled. Seems to be part of the general horribleness of the whole thing, I hope it settles soon. I know how I felt and it can not have been easy for the people I love to have seen me like that. I felt quite tormented by it all.
Helen

[Author]

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