[lynn16Participant]

I was diagnosed by my GP after months of back pain and three visits to another GP. Huge shock – thought I had muscle strains caused by gardening. Once spotted the NHS moved very quickly with CT and MRI scans and loads of blood tests. I was quickly put on treatment – Lenolidomide, the dreaded Dexamethadone, and Daratumumab. All going well and I have just 3 weeks of this remaining before the prep for the stem cell transplant and said transplant likely in May. Physically I’ve been fine in the circs (only side effects from the steroids – Thursdays are a wipeout) but mentally it’s been up and down, having to stop work which I loved, being a ‘sick’ person after no illness in my life, the need to avoid chance of infection, the challenge of exercise (I have always been very active – cycling, swimming, Pilates etc) and a long haul of treatment.

I’ve discovered that I respond badly to lack of information – 4 weeks between consultant appointments leaves me in limbo – but when I do see them I get what I need to know about the process and timing and feel more optimistic. I also have two good friends who have been through this recently and taking to them has been brilliant – informative and positive. I no longer respond well to friends who text me with ‘how are you doing’!!

This forum is great. I find it hard to get my head round this cancer. I’ve dipped in and out of all the information as and when I need it which works for me.

[rosaryParticipant]

Congrats on such a positive post ….. if you like info then have a look at healthtree.org which has HealthTree university which is an excellent resource on myeloma ….I\’ve also found chatgbt has been getting better and better ….stem cell will need all your fitness as good as you can get it ….. I\’m five years on now from stem cell and living a good life around some of the extra care you need to take of yourself so you\’re doing a brilliant job to have got on top of this as quickly as you have …. friends can struggle on how to ask you how you are so don\’t be too tough on them !

[rabbitParticipant]

Hi Lynn16, welcome to the forum.

It is definitely a mental challenge, from the initial diagnosis to – as you say – the side effects and new normal life.

You are getting well through the treatment. Perhaps focussing ‘on the light at the end of the tunnel’ – the prospect of going into remission – would help?

On exercise, I have been there. I lost a huge amount of weight during treatment, much of it muscle. I got back into the gym when treatment finished: it took so much willpower to rebuild my strength, but I got there!

I agree with Rosary about friends. They probably don’t know what to say. At least they are still contacting you: I had ‘friends’ who didn’t want anything to do with me as soon as they heard of my diagnosis 🙃. It can be a time when you find out who your friends really are.

All the best

Rabbit

[lynn16Participant]

Thank you so much Rosary and Rabbit for your responses and helpful advice. I’m about to be thrown into the maelstrom of meetings and assessments for the stem cell transplant – wish me luck!

[blobgobParticipant]

Hi Lynn,

Welcome to the forums!

I would be saying the “dreaded lenalidomide” rather than the steroids, as I coped much better when on the steroids as part of my initial treatment.

I’m on lenalidomide post stem cell transplant (2022) now, as my long term maintenance therapy. It was not available on the NHS before I had my ASCT. Most days of the 28 day cycle I’m fine, but there are a few days each month where I feel tired, and don’t like to wander to far from the loo! Known symptoms of Lenalidomide, but perhaps you will be luckier and it won’t bother you.

You don’t actually say what form of Myeloma you live with?

Best wishes,
Derek

[Author]

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