[rach1975Participant]

I have just been diagnosed on 31st July at the age of 51 with multiple myeloma.

Has anyone got any advice on how to deal with lower back vertebrae fractures ? For example back brace or back support.

Any advice would be appreciated.

Many thanks

Rachel

[shaun3Participant]

Hi Rachel, I’m sorry to hear that, Im about 8 ½ years ahead if you having been diagnosed age 53 in 2015. I had a bad back and its turns out I had two crumbling vertebrae. My back is fine now and I’m MRD negative too. After lots of scans i was referred to the royal national orthopaedic hospital at Stanmore. At one point they suggested a brace but thankfully they decided to leave it and actually once the MM was under control the vertebrae grew back, amazing really. I had Zometa and also Adcal for 8 years. Wishing you all the very best on your journey. There is a lot to be optimistic about. Shaun

[rach1975Participant]

Hi Shaun

Thanks for your reply.

This all very new to me.

I finished my first dose of dexamethasone last week and am now waiting further treatment but have been given liquid 5ml morphine and slow release morphine tablets. Were you given either of these and if so, how did you get on?

Thanks

Rachel

[shaun3Participant]

Hi Rachel, how did you find the Dexamethasone? I must admit I never enjoy it but it does work. I’ve not had morphine for back pain but I hope it worked? I’m sure your consultant will be recommending other treatment with the dex, there are some standard treatments but they often depend upon the level of your lightchains and paraproteins etc. Are you seeing a myeloma specialist, I found that helped. Wishing you all the best, Shaun

[rach1975Participant]

Hi Shaun

Got on quite well with it.

The only thing I noticed was that I was still awake at midnight when usually I’d be half a sleep by 10pm.

How long was it after the first 4 days of dexamethasone did you start your treatment?

I’ve been told that I need to have a dental check before I can start chemo. Did you have to do the same?

I tried 2.5ml of liquid morphine at about 2pm but will be trying 5ml before bed.

Thanks

Rachel

[shaun3Participant]

Glad it wasn’t too bad. The sleepless nights were the worst bit for me, that and I was like a Duracell bunny at work 🤣, way too much energy. I was on chemo 8 days after diagnosis, back then it was VTD but I believe standard treatment includes Daratumamab now as well. It wasn’t available 8 years ago and I’ve just started it now, it’s working really well actually. I didn’t need the dental examination but I think that’s linked to the Zometa, I might be wrong. Hope it goes well.

[rach1975Participant]

Hi Shaun

I’ll keep you updated as things progress.

Really pleased that you are doing okay now.

Best wishes

Rachel

[shaun3Participant]

Ahh and I forgot to say that yoga and ta’i chi have really helped me over the years too 😊

[gcoulterParticipant]

Hi

Myeloma UK have a 50s and under WhatsApp group.
If you haven’t already I’d highly recommend you join. Its a really supportive group and you’ll always find someone who’s been through what you’re experiencing.

50s and Under Support Group

Graham

[najmahParticipant]

Hi Rach, I hope you are getting on ok since your diagnosis. I was diagnosed in April but at 73 Im much older than you. I have two end plate fractures at L3 but was told that the treatment would help heal them, I didn’t need a brace or any kind of support. Initially I also had 4 days of Dexamethasone before starting chemo the following week. I dread the two days I take Dex (10 x 2 mg on Tuesdays and Wednesdays). I take them first thing in the morning and feel like I can’t stop all day then I can’t sleep at night! I’m on Isa-VRD. I’ve had two infusions of Zometa so far, a month between each infusion. I was told to have a dental check up and any treatment that my dentist thought was necessary before starting Zometa as it can (rarely) affect the jaw and teeth. I take Adcal too.

Shaun it’s very encouraging for us all fairly recently diagnosed to hear that you are now 8 years post diagnosis and doing well.

[rach1975Participant]

Hi Najmah

Thanks for ypur message.

Not getting on to bad but my lower back is the main problem.

I have my first chemo session on 20th August. Not sure whether they will give me zometa on my go or whether I have to wait.

The next hardest thing I’ve found is telling my parents and sisters (did this yesterday).

I have a stem cell transplant lined up in the new year.

All the best

Rachel

[najmahParticipant]

I’ve had my treatment today (my 15th week) alongside the monthly Zometa. I didn’t have the Zometa during my first treatment as I had to wait until I’d had a dental check and then sign a consent form, so maybe it will be the same format where you are being treated.

Good that you have a stem cell transplant lined up. My age was against me for that but my treatment is fairly new, it just passed clinical trials last October. So I’m very hopeful that it’s a good option.

I can totally understand how hard it would have been for you to tell your family, it’s not an easy thing to do and it’s certainly not easy for the family to get a grip of. I’m sure it went ok for you and hope that your family were not too upset, it’s the initial steps in everything that’s the hardest. I have two daughters is their 40’s, I’m very close to them and they were obviously shocked and upset but they were very positive and supportive. As was my husband (who has non Hodgkins Lymphoma, but that’s another story for another board!). I told my sister too. The little niggle for my daughters and my sister is that my mum had MM 25 years ago and although I’ve been told it’s not hereditary there is an increased chance (I think about a 4% increase) of a direct relative or sibling getting it.

Good luck for your first treatment on the 20th, do you know what you will be getting? I found my first treatment took longer as they did the infusions much slower in case I had any reactions. I didn’t, which meant subsequent infusions could be given much quicker. So maybe plan for a longish first session.

[rach1975Participant]

Hi Najmah

Thanks for your message.

Can I ask what the new treatment you are having is called?

How is your back now you’ve had the Zometa?

Rachel

[najmahParticipant]

Hi Rach,
My treatment is ISA-VRd which is Isatuximab, Velcade(Bortezomib) Revlimid (Lenalidomide) and Dexamethasone. I know there’s another lady on this site who is having the same treatment as me.

I think the only way to determine whether the Zometa is working is by having a bone density scan or maybe an MRI scan. Although the consultant did tell me that it starts to take effect after about three treatments and any back pain should improve. I would say that my back and hip pain has reduced, it’s still there but it’s not as bad as it was and I can control it with paracetamol I don’t need anything stronger.

Regards,

Najmah

[rach1975Participant]

Hi Najmah

I only recognise one of the drugs that you’re taking ie. Dexamethasone. This is one of the ones which I will be having.

Glad to hear that your back pain has improved with Zometa. I’m hoping it will do the same for me.

Best wishes

Rachel

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