Hi sbis I hope you are feeling well My name is Marion and I was diagnosed with Myeloma on the 5th February 2024 it was a complete shock. I have had MRI and CT scans a nerve conduction test and a bone marrow biopsy numerous blood tests and I’m having a skin biopsy this Friday 29th I still haven’t been offered any treatment yet I would love to be your friend and have lots of chats about our conditions. Hope to hear from you soon. Marion xx
Hello my name is Sharon, I'm 52 next month and doing ok thank you
Oh gosh yes it’s a massive shock, I was the same. I’m a registered nurse and I had been off sick with a urine infection, felt so unwell and it then went onto a kidney infection. I kept thinking I had Covid , felt so unwell. My GP finally did bloods and from there sent and admitted to hospital for further tests. Eventually had the diagnosis of myeloma and I was so shocked too. I had a stem cell transplant February 2023 and I’ve been on maintenance medication since. Yes, life is different but I’ve remained positive. Of course we can be friends x
Hi Sharon thanks for the wee message. I am much older than you, I will be 81 next month. We have 3 sons and 3 daughters all married except 1 son who lives with us. We have 14 grandchildren. My husband of 58 years will be 90 God willing in May. He has Dementia these last 4 years is totally immobile and has to be fed. I am his 24 hour carer with the help of the family. We live on a small farm with highland cattle and sheep lambing at the minute. I am hoping after I get the skin biopsy on Friday that I will get some results and hear if I will be offered any treatment. Before Christmas I had seen a Neurologist as I had bad back pain and peripheral neuropathy in my feet and legs. I have had arthritis in my spine for a long time and I thought he was going to offer me nerve root injections but Instead he sent me to a haematologist who diagnosed myeloma. So that’s where I am now. Sorry for the big long email but I just wanted to tell you a bit about myself. Take care.Marion
Oh bless , you are similar age to my parents. You are a very busy lady, it must be very difficult caring for your husband and having all this worry of your health too x
Thank you for sharing x
I have been very lucky and not had any health concerns in adult life until this. I had even worked all through the pandemic and didn’t get it. I have neuropathy also since diagnosis and bowel issues because of the medication. I live with my husband and our little dog, we don’t have any children but surrounded by great family and friends. We live in Worcestershire in the West Midlands.
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
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
