Has anyone have Multiple Myeloma? I would love to chat with them.
Has anyone have Multiple Myeloma? I would love to chat with them.
Hi, my mum has just been diagnosed with multiple myeloma, she is due to start chemo next week then after that she will be having a bone marrow transplant, I’m so worried about her, I just wanted to hear how others were with it.
Hi x I’m so sorry to hear this.
stay positive all x I had chemo via injection before my stem cell transplant. I had a high dose of chemo the day before the transplant that was the worst bit for me.
But everyone is different x
I continue now with maintenance medication and have a good quality of life x
Thankyou for replying, when you had the transplant how long was the hospital stay? And were you aloud visitors. I’m hearing stories of being in there about 4 weeks with no visitors at all, There’s so many questions, we are only just at the start of it all.
It’s nice to know you have a good quality of life, :) xx
No problem x
I was on an isolation ward for 2 weeks then went home. Obviously this can vary, we are all different. Yes, was allowed visitors but to be honest I just wanted my husband, everyone else wanted to keep me safe so didn’t visit.
I struggled was nausea post the chemo so that was tough for me. I remember seeing a patient on the myeloma uk website who did an exercise bike ride while in isolation. So like I say we are all different.
Yes, it was a massive shock to find out I had Myeloma at 50 previously fit and healthy and I’m a Registered nurse.
I’ve had great support and care.
I’m very grateful x
Hi, sorry to message again, I’m just sat here with my mum and she has so many questions. She is due to start chemo on the 22nd of this month so she is getting very nervous, I hope you don’t mind me asking but did you lose all of your hair? Did you bloat with the steroids. X
Don’t apologise x
I only lost my hair when I had the big dose of chemo pre- transplant but it came back in no time and it wasn’t as traumatic as I thought it might be x
I didn’t have any effects from the steroids but everyone is different x
The fatigue has probably been the hardest part for me but I’m managing it the best I can x
Thankyou for replying, it’s so much to take in at first, it really helps being able to talk to someone who has been through and is going through similar. It’s lovely to hear you have a good quality of life, it gives us some hope xx
Oh absolutely it was such a shock diagnosis and I’m still getting my head around it nearly 2 years in x
oh I’m very positive and my husband has been a tower of strength x
have you looked on Myeloma uk web page it’s really helpful x
I’ll have a look now. I’ll get my mum to look aswell, thankyou so much. X