I’m recently diagnosed with LCMM. All been a whirlwind as it started off with an unusual feeling of weakness/strain when I was moving something heavy. Otherwise fit and healthy, just turned 50. Assumed it was disc related. Lots of physio, then an MRI and 4 months later here we are.
I am really struggling with pain though. I have lesions through my pelvis ribs and spine. The largest pelvic ones I am due for radiotherapy, but the ones on my ribs are only around 2cm and considered too small, yet are preventing me sleeping, bending, wearing a bra and please don’t let anything make me sneeze ! I just cannot get comfortable. I’ve got all the pillows - body, U shaped, V shaped, a sauna blanket paracetamol and co-codamol. Nothing works. Any tips gratefully received.
I’m due to start on the Radar trial on Wednesday and would welcome experiences from anyone on it.
Thanks to all who read this message- I’d love to hear from you x
Yes mine is stated in my diagnosis as Kappa Light Chain Multiple Myeloma (my last result was 738 and had gone up by nearly 100 in 2 weeks) that combined with the bone lesions and the blood plasma result led them to that.
I was just wondering? I don’t know what stage of life you are at- but I’m on a gel HRT, did they check with you before putting you forward to the trial? Am not sure if it might stop me getting on it
I’m in peri and had started sequi patch hrt in August to help mostly with night sweats. Had some mixed messages - one of the non trial clinical nurses said I didn’t need to stop using it but when I read the trial info - it said to discuss with the consultant. In the end I discussed with my GP as I was due for a repeat prescription and I decided to stop using it to reduce any risks. I’d had to take so many patches off for the many MRIs that I was totally out of sequence anyway. The night sweats aren’t back yet and they were really the worst symptom- my GP was saying we have no idea if they are hormonal or cancer related night sweats anyway.
In answer to your question I don’t think it will block your eligibility for the trial but you do need to discuss it with your consultant haematologist because they may ask you to come off or perhaps do some extra monitoring if you can stay on it.
Ahh ok thanks for that! I’m in for my echo and ecg and blood (again!) on Wednesday, so ill ask, might be best to get off them, I had started with light hot flushes of a night and I’d just put it down to needing more HRT that’s why I had the bloods in the first place- didn’t realise it was a symptom! I’ll ring then tomorrow and let them know I’m happy to come off them, as it’s another risk with clots than can be done without xx
Ask for a referral to palliative care they are brilliant for pain control. You have to be honest with your pain (I wasn’t to start with )
I had a fractured T9 and in my pelvis with many other lesions on diagnosis. Palliative care were brilliant. I ended up on 1200mg gabapentin and 60mg of oxycodone with break through oxy if needed
Thanks @2DB If it gets worse I will, I’ve been very open about my pain and was offered morphine, but I hate the dissociative feeling and tiredness you get taking strong painkillers, as I’m trying to work some still. I’m guessing from your experience that medication is the only way that works?
I tried working through the pain but ended up one night not being able to lie down in bed and having a panic attack. I ended up in A&E having my pain managed before transferring to Cheltenham. I wa in agony by the time I got there and needed radiotherapy on my spine only I couldn’t lie down and that’s when palliative care came in. I had to call for pain relief (which I tried to work through) and got told that I needed to call every bit of pain so that I could be in a place where I was pain free. Yes I felt like a zombie for a couple of weeks. My body did get used to having pain relief and I was able to function a lot better. Once I had my stem cell transplant I was able to lower both. Gabapentin to 600mg (300 am/pm) oxy to 30mg (10 am/20pm)
When I relapsed and had DVD and my second transplant I came off both. i now go between paracetamol and co-codamol
Hey lovely, I’m doing well - had good blood results after first round, radio worked brilliantly for my pain and as a result I’ve been low key back at work which is great for my mental health! More importantly how are you? How did everything go with your Dad’s service, how are you feeling about starting treatment? Been thinking about you xx
Oh that’s wonderful news star so happy for you! Yes, a bit of normality is fantastic for our mental health, so so pleased for you
Today is Dads funeral, so I’m sure it will be a rollercoaster, not really faced up to him being gone, as I’ve been so busy planning, but reality starts today I guess xx still nervous about treatment on Friday, but that’s just natural I guess, and knowing you are doing so well really helps x don’t be a stranger you got this xx
did they specifically diagnose as LCMM, as mine is elevated(only symptom apart from paraprotein) but haven’t given it a name
that’s why I had the bloods in the first place- didn’t realise it was a symptom! I’ll ring then tomorrow and let them know I’m happy to come off them, as it’s another risk with clots than can be done without 
xx
I hope things are going well for you, always here if you need to chat or scream xx
you got this xx
and you