Hi all, I’m Charlotte, I’m 50 and married with three children. I have been diagnosed this week with Myeloma. My head is bursting with a whole range of emotions and questions.
Predominantly, my life-long fear of vomiting is a part of everything I do, everything I consume and every pill/medication I take. I’m terrified of the sickness side effects of the treatment I’ll need in the new year. I’ve even cancelled much needed iron infusions as I’m scared of the side effects.
Any advice would very much appreciated. Thank you.
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Hi Charlotte, i was diagnosed with myeloma last year, im in my forties and never saw it coming either! i can tell you after over a year into treatment there is a light and life again. Prepare to put life as you know it on hold for now and slow yourself down, take things daily. I was on DvT with dexamethasone for 6 cycles and wasnt sick at all, the steroids were the worst for me, then this january i had a stem cell transplant, not going to sugar coat that one but it came and went as all this will. As time has progressed and ive spoken to more people ive been heartened by the positive stories and am not seeing it as the disaster i initially thought. You will find plenty of kind people here with good advice. One day at a time x
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Hi Bitsy,
Thank you so much for reaching out.
I’ve decided that I’m not going to have the stem cell as I know I won’t cope with it. I’m not sure how this decision will affect my prognosis but I know my limitations.
Have you had any experience of iron infusions?
It’s good you hear that you are doing so well and that it isn’t all doom and gloom. My head is so full of so many emotions and questions at the moment!
I wasn’t overly surprised by my diagnosis to be honest, I’ve been feeling unwell for some time and my bloods were quite damning. I know my anaemia needs addressing but I’ve read so many horror stories of how sick the infusions have made people not just for days but weeks afterwards 
Thank you again for your message, I really appreciate it 
Charlotte
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Hi Charlotte, dont make any decisions on treatment just yet. Everyone reacts differently and for the most part everyone on the journey at the same time as me said the same. They werent sick with it, tired , emotional, scared, yes but thats to be expected. be kind to yourself, try to find ways to centre yourself and be in the day without looking too far. ive never needed iron infusions ive had other treatments, blood and platelets etc and wasnt particularly unwell? dont dwell on negative stuff, take your treatments as they come and let the experts take care of you.
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Hi @Spooder a great big welcome to our forum.
You say you have been diagnosed this week, I know I was all over the place when I was diagnosed, and I bet your head is bursting with a whole range of emotions and questions, as my was.
A trick I have found is to write down all my fears, questions and practicalities for my medical team.
I realise it must be terrifying for you having a life long fear of vomiting. Perhaps this is something you might raise with your medical team as I bet you will not be the only person they have come across with this issue.
You ask for our advice, well from experience, and as @Bitsy says, just give yourself time to come to terms with your diagnosis and get balanced advice from your medical term.
Your health and welfare is paramount.
We will be about all over the holiday period and I hope others will share their experiences.
The Blood Cancer UK support line is there for you (opening hours apply) on 0808 2080 888.
Just look after and be very kind to yourself and please do keep posting.
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Hi @Spooder (Charlotte)
I was diagnosed at 49 in 2017
Two kids 15/19 at the time
Single parent
I have a fear of being sick as I have hyperemisis I was sick most of the way through my first lot of chemo back then and through stem cell transplant
There is plenty of anti sickness
I did spend a lot of time in and out get sickness under control.
Your more likely to suffer vomiting if you have car sickness and hyperemisis gravidarum which I had in both my pregnancies
It’s surprising what you can cope with when your life is on the line and how much you want to live especially for your kids
Treatments recently are kinder
I relapsed in 2021 and wasn’t sick at all with one of the new treatments and my second transplant we managed to have the sickness under control
Don’t be afraid to let your team know how scared you are of being sick and how they will help to keep it manageable
I’m doing really well at the moment I have my best bloods since 2017 and living my best life
Recent treatment
DVD 8 cycles then transplant and I’m now on maintenance chemo
Remember myeloma is individual to each person and how you respond
I will say keep a positive mindset once over the initial shock of your diagnosis
Myeloma although incurable is very much treatable and you can live life with myeloma
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Hi and thank you for your message.
What treatment were you on second time round? I’m already on low dose Methotrexate (chemo) for my arthritis and even with anti emetics, I feel nauseous every day
I know I wouldn’t cope with the stem cell treatment so I’m choosing not to have that. It’s all very new and scary and very much a time of analysing things and getting my head around it.
My consultant knows about my phobia but I’m not sure anyone who doesn’t have this fear can truly appreciate how it affects absolutely everything you do, everything you put in your body, everywhere you go. It’s completely controlling and terrifying as it can happen to anyone at any time! 
Thank you again for your message, it means a lot.
Charlotte
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Hi Charlotte
I had daratumumab/Dex/velcade on relapse
I had a choice of this regime or Krypolis I chose the one that I thought would be kinder as first time around was hard going and wanted some quality of life which I got
I was that scared and agitated about being sick and being sick nothing seemed to work that I had lorazepam to try and break the cycle I was in.
I don’t think my body likes anything that shouldn’t be in it 
Do always what is right for you and what you are comfortable with
I swore I would never have another transplant but when it came to it I did
The best antiemetic I found once we realised I wasn’t allergic to it was metoclopromide as it works on the tummy
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