I’m so scared and depressed after my hospital outpatient appointment. I was told that after only 6 months treatment (Len/Dex/Dara) my light chains are galloping back up and are now over 500. I’m being put on Bortezimob. I feel like I have nothing to look forward to it seems my myeloma is much more aggressive than most and the prognosis is very poor. I was diagnosed in June of 2024.
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Hi @Valerie1 I am so glad that you have found us and it sounds as if you are having a very tough time.
I reckon that it is very natural to feel scared and depressed and a lot has happened to you in the last 6 mths.
I know this might sound impossible, but perhaps try and take it more day by day.
If you have questions going round and round perhaps write them down with your fears and practicalities to ask your specialist nurse, if you have one, or at your next appointment.
I know what helped me was talking to someone, and I do not know if it might be something you would consider, either through your GP, hospital, Macmillan, Maggies or similar services.
The Blood Cancer UK support line is there for you on 0808 2080 888.
We are here for you to be able to say how it really feels to be you.
Be ever so kind to yourself, look after yourself and please do keep posting
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Hi@Valerie1,I am sorry to hear that your light chains are going up again and how worrying this news will be for you.I have just had my 4 month myeloma screen blood test for Monoclonal gammopathy of unknown significance (MGUS) and that is enough for me and I am grateful for that but it is emotionally draining everytime.My results are a bit like the Shipping Forcast "rising slowly’.I get your distress .
Sending All good wishes to you and hope you get some reassuring news
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Good to hear from you @Bannanacake, really look after yourself
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Hi I’m so sorry you having this worry I think maybe like Erica suggests maybe talk to someone from help centre as it is a lot to take in board and if you worried please talk to someone as might help a little.
Lots of love
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Hi there
It’s normal to feel scared especially when treatment isn’t working.
I know it’s hard but take each day as it comes
I no longer look to the future but to enjoy every day that’s given to me.
Sometimes our myeloma doesn’t respond to chemo regimes it’s called refractory or not responding.
Thankfully we have a few treatments that can be next line and there are clinical trials after 3rd line I believe. The blood cancer clinical trial nurses are great you can email them. Myeloma UK have lists of trials So don’t give up
Have you been told that you have high risk myeloma? Do you know what risks they are
My first line of treatment wasn’t working after 7 weeks and I went into a salvage treatment thankfully that got me to be able to have a stem cell transplant 8. Years ago.
I have since relapsed and had great results with dara dex and velcade better than my salvage treatment and a further transplant
I know I will relapse at some point again as is the nature of myeloma
Each treatment works differently for each of us as myeloma is unique to each one of us
Keep going you got this and it’s ok to not be ok
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Dear Valerie hope you are ok. My light chains galloped up: had to stop len as allergic to it: I was put on tclistamab! ghastly medicine but have been in remission for a year. take heart: ask doctors questions and dont ever lose heart: friends dont understand disease so read lancet articles anything you can ! wish we could have a coffee and chat. if you are ever in Chelsea would love to see you
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