This topic contains 34 replies, has 10 voices, and was last updated by mulberry 1 year, 2 months ago.
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Hi Squirrel,
In answer to your question about hubby’s spinal brace, he only had to wear it for 6 months, mainly to stop any further damage to his spine and sternum, the brace fitted from just under his chin down to his waist and the results where amazing, because of the spinal fractures and the sternum also fractured his head and neck went forward and he lost 5 ” in height the brace stopped any further movement going forward.
It was made to fit at Stanmore hospital a very long journey from rural Wales, but so worth it and it was a real eye opener how many Myeloma patients where having braces fitted.
Here’s hoping that you get your pain under control, (dont put up with it) thats what we were told many times, once it is under control and treatment starts you will soon be looking forward to getting the seed catalogues out and planning the garden again wishing you all the very best.
Ann
Hi All
Thank you all for your messages.
Derbyshirelass – I find it hard saying I have pain but I know you are right I have to be honest with them.
Update from my appointment yesterday. 2nd May.
MRI scan, XRays, Bone biopsy, bloods etc etc all confirmed what the Consultant expected and I have multiple myelomas all over my skeleton.
So early Friday morning I will be starting Cycle one.
Not sure I really understand what to expect but going with the flow and hoping no adverse reactions to the medication.
Reality of my condition is starting to sink in now I think.
I don’t know if you can lose your hair with this treatment. I think I read it may thin out a bit?
Has anyone experienced hair loss please?
Hello Sandra, welcome to this club no-one wishes to join.
Many working age patients manage to continue to work during induction therapy, at least part time. Induction isn’t as debilitating as true chemotherapy as it targets very specific things rather than causing a lot of collateral damage.
Actually it’s the steroid, Dexamethasone, that causes the most problems for many patients as it can cause sleeplessness and mood swings. However it can give real highs & energy bursts, which help some of us.
I felt “odd”, a bit spaced out and dizzy, rather than unwell during induction (although when I was diagnosed 5 years ago we only had 3 drugs for induction).
You shouldn’t lose your hair at this stage, that’s caused by melphalan and cyclophosphamide which are chemotherapy drugs given around the time of stem cell transplant.
Report any odd symptoms to your myeloma nurse or at clinic appointments. Many of us are left with a degree of peripheral neuropathy in the feet, or feet and hands. To minimise the chance of this, report any tingling or odd lack of feeling in your feet as soon as possible. I did this, my Velcade was reduced (twice, eventually to half dose) and I haven’t been left with neuropathy.
Often myeloma levels start falling very quickly after treatment starts, and I hope this is true for you.
Many of us have some sort of hiccup along the way, but we get there in the end.
Once the myeloma is in remission or stable all the effort to get there is worthwhile.
Hi Mulberry
Thank you for your reply.
Knowing how others get on really helps.
As lovely as my Consultant is I feel she wants to give more of the positives.
Fingers crossed for tomorrow.
So I have had 3 treatments so far in the first cycle. DVDT
I feel out of sorts for the majority of the time and wondered if others felt the same. I know people react differently but when I saw on here that others were continuing with work I thought I would have felt reasonably ok but I don’t.
I am very much on edge, nervy, and shaky. I also have jaw ache which doesn’t want to go away. I think my tongue felt a bit swollen yesterday.
I tried to speak to a doctor last Friday when I was at the treatment ward but no one was available!
I can’t contact my Specialist nurses directly as it always goes to answerphone message for a 48hr response or they state to contact emergency hotline!
I think it might be the Thalidomide – Has anyone else had similar issues please?
Hi Sandra
I’m sorry that you are having a tough time dealing with induction treatment. I know that many patients do feel weak, dizzy, shaky on induction treatment & although I didn’t have pain I didn’t feel myself for a year, until after I recovered from induction and stem cell transplant. But I did feel well again eventually & you are very likely to do so too.
I haven’t heard of jaw or tongue involvement. I would leave a message for your myeloma nurse to report it. I know the answerphones may say a 48 hour response (my hospital does too) but I sometimes had a response later in the day.
I hope you get help or reassurance from your team. Myeloma is a tough challenge.
Best wishes, Jane.
Hi squirrel
Contact the helpline that’s what it’s there for and often they will see you even if it’s to say everything is ok. They would rather that thsn you sit on pain etc.
Steroids can cause your tongue to swell it’s called steroid tongue (I had no idea until I had it)
Your jaw could be aching from pain tension but could be Zometa
Pain wise I would be keeping on reporting how much pain you’re in.
I have boney disease and I was found to have a tumour on my T9 hence the pain as it feels like it’s the ribs
I know we don’t like keeping on but in the case of myeloma you can make an exception
I had DVD on relapse in 2021 and tolerated it really well apart from velcade which causes neuropathy and was lowered Dex was lowered also.
I’m refractory to thalidamide I don’t respond well to it.
I’m on maintenance Dara with low dose Dex
I have been off work and still am
Hi Squirrel
Your original post is more or less verbatim to me, doctors thought I had a PE, huge pain in the ribs and sternum, CT scans and blood test confirmed Myeloma, placed on the two week pathway on the 1st February, currently on a clinical trial.
Don’t suffer with the pain I’m on MST, slow release morphine tablets, which work a treat for me, I asked my haematologist for the prescription with no problem, I also have oral morphine, which works a treat with paracetamol, for when the pain is severe.
I hope that helps but definitely don’t suffer with pain
Thank you Mulberry and Duclady for your comments.
I ended up in hospital for assessment after phoning the hotline.
They wanted to check me over to make sure everything was ok and nothing was really discovered so can only assume I must be one of the ones that doesn’t respond too well to these drugs!
Steroid tongue does sound very much like the reason for my swollen tongue. My husband picked it up before I did as he said i wasn’t opening my mouth to talk! It only lasted for a couple of days but wary now that I will need to take more steroids as part of the next treatment.
Duclady – How did you not respond well on Thalidomide? I thought some of my symptoms could have been related to it.
Thanks again for your comments
Hi iangray67
It’s quite strange how it gets picked up when being checked for a PE.
I am actually on Zomorph now which I believe is the same type of medication which I take twice a day. Also Oramorph for breakthrough pain.
Interesting you are on a trial – which one is it?
Thank you for commenting I really appreciate it.
Hi Squirrel
I only went to the doctors as I couldn’t shake the winter virus which then started to cause rib pain, thinking it was all the coughing or just something simple.
I think its similar, tablets twice a day.
I have been on the RADAR trial, It was offered to me at the beginning so I jumped at the opportunity, I have just completed the 12 week induction phase yesterday, I have review next Tuesday then bone marrow biopsy on Thursday then hopefully if the results are favourable its on to the next stage, which is stem cell transplant.
Hi Squirrel,
Glad they checked you out and you have the medication. Hoping the side effects will improve for you. Dad has the jaw pain too which we think may be from the zometa. He is moving on to his 4th round treatment next week with Isa-Pd so Im hoping he doesn’t suffer with too many side effects but you just never know, do you? Unfortunately the steroids are always problematic! Hope you are feeling bit better x
Hi iangray67
How are things going with you?
Hope everything was favourable on your results and you are now onto the next stage.
Interested to know especially as you are on a trial as well.
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