4 years post Monoclonal gammopathy of unknown significance (MGUS) diagnosis. Regular bloods. Currently in hospital after a spine fracture that came from no/where. could this be the progression from Monoclonal gammopathy of unknown significance (MGUS) to myeloma
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Hi @Dawnyp, no idea, I have Chronic lymphocytic leukaemia (CLL) but I was diagnosed about 10 years later with osteoporosis and scoliosis, out of nowhere, and I have had several (now healed) fractured and compressed vertebrae over the years…
You are in the best place to ask your consultants the direct questions you would like answers too.
Please do let us know how you get on and really look after yourself
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Hi @Dawnyp. It’s an interesting discussion isn’t as I know often when the illnesses occur we look at whether things are connected. Are you able to talk to a member of your team whilst you are in hospital? What have you been told so far?
I hope they are taking good care of you. Please keep us updated 
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Going to link you Monoclonal gammopathy of unknown significance (MGUS) from myeloma uk it may help you firm questions to ask the team looking after you
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Hi @Dawnyp we hope you’re doing okay, sorry to hear you’re in hospital after a spine fracture. If there’s anything we can do to support you or anything you want to talk through with our Nurses at any point, please do give us a call on 0808 2080 888.
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After another spine fracture I am home again. The chemo is not affecting me to much but feel so worried about getting another fracture. Clinic day tomorrow, hoping to see that chemo is working or atleast stopped the myeloma progressing further. I seem to have it everywhere on my body. This has happened so quickly . My M protein was 12.6 last July now it’s 28. It’s been quite the six weeks but I have more positive days than negative. It’s just so inconvenient to life
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And it was!!!’nn
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Oh @Dawnyp it seems as if you have a lot going on so quickly, I would say that you have a lot to process and that it is very natural to have positive and negative days and practically it is just so inconvenient.
However I am glad that you are home again although I find hospital appointments and treatments are so exhausting.
Try to have some treats and be very kind to yourself and please do keep posting.
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After six weeks of shock, Monoclonal gammopathy of unknown significance (MGUS) changing to Myeloma and two spinal fractures and one cycle of chemo, I wanted to share some positive news………chemo is working, my levels have dropped, my M proteins have halved, chemo has not given me to many side affects either. Stem Cell transplant August/September then hopefully remission for a few years plus. It’s not all doom and gloom everyone there is alot of hope out there now. One day at a time x
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Oh @Dawnyp what a wonderful post, I would say to celebrate and please do keep posting how you are and doing
Be very kind to yourself
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I started reading your previous posts and was so pleased to read this last one. I think you definitely needed some good news! Yep - one day at a time and take good care of yourself. Please keep us updated when you are up to it
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16 weeks of chemo completed for MM and my levels are close 0. I only wish the fractures had healed. I am now being referred to spinal.
Update on treatment.
Chemo was not to bad but it’s been a long process over four months.
This week I had my stem cells harvested which took four sessions (4-5 hours a day hooked up to a machine) I found this really tough because you are so restricted but it wasn’t painful. For those that can sleep great but for me it was hard. Top tip - take head phones as your hands will be restricted.
Regarding hair. Still have it but it’s a terrible mess so have opted to shave it off . I got both my daughters to do it.
I now look forward to around 10-14 days without any treatment before I start intensive chemo and have transplant.
Good luck to all on this journey x
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Eh, @Dawnyp I reckon that your daughters did a brilliant job of your hair.
Thanks for the top tip of headphones. I love my music, although they cannot read a book to me, that’s the de luxe version.
Please do let us know how the spinal appointment goes and also the chemo.
Really look after and be kind to yourself
- 23 days after Stem cell transplant.
Still so weak but eating more. Taste a bit all over the place. Not good with sweet things.
Feeling lightheaded when stood for to long but appreciate I’m just not drinking enough. Fizzy water is my goto. It’s good to be home but feel like I should be feeling atleast a bit better but I’m not. One day at a time I guess……
I haven’t lost all my hair which is a surprise but I don’t have much left. Thinking of all of you going through this. It’s not easy.
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Hi @Dawnyp Just think what you and your body have been through medically, emotionally, physically and practically., I reckon you are doing brilliantly.
It sounds as if you know what you need to do and yes, one day at a time and slow and steady wins the race.
Be kind and look after yourself and please do keep posting
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