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Hi, I have another question if anyone can help, again significant other half has a pending collapse of his vertebrae its being held up by new bone growth one third of the way into a major Lower vertabrae bone.
He is currently in a brace and praying that in time it will heal (though i am unsure how because two thirds of his bone density has been destroyed by the MM) we have a follow up appointment at the end of June – apart from the body cast brace, he has been given nothing else.
What can be done in this instance as he has days whereby he is in a lot of pain, though he doesn’t want to take more medication but nothing has been given to him to help strengthen the bone or even the pain. Are we missing something here? All we have been told is literally go straight to A&E if his pain gets really bad (e.g. before his back collapses or after).
At this moment in time I’m more worried about his back and not mending which is having a massive affect on his quality of life .
Anyone been in the same position or has any advise ?
Hi sabs,
I’d lived with chronic pain for 3o odd years and accepted it as part of life. When I was diagnosed with MM however, my pain became much more severe and I was prescribed morphine – slow release tablets twice a day and oramorph for breakthrough pain, up to 6 times a day.
There are of course side effects to morphine – tiredness, confusion, memory problems etc but I accepted those as I was able to be pain-free most of the time. It took me days to come to terms with the fact that I was allowed to be pain free, I kept having dreams where I thought I had to go back to work immediately, although I was incapable of doing so.
I understand a reluctance to take medication but I think one must accept that one has cancer and choices are somewhat limited.
So personally, I take as much morphine as is needed. I’m in remission now and have been able to reduce the dose as and when, although I had to double it a couple of weeks ago due to calcific tendonitis in my shoulder. I’m now slowly reducing it again and am off oramorph most of the time and only take it when my pain increases due to being out and about.
My opinion? Take drugs. Make the pain go away.
Best Regards
Taff
Thanks Taff,
But I’m now worried that we are basically being told that’s that, live with the pain – he was diagnosed with something called hyper-movement he’s more flexible than most ppl which i guess is one of the reasons his back hasn’t caved in just yet, and why the restraints of the brace are hurting him so much, but if this is it at 39 and its as good as its going to get i’m not sure he can live like that. literally all of his hobbies and interests have come to a very abrupt stop, I just want his back to heal 100% the cancer to go into remission and then we just keep monitoring him from there for the future. But i want him to be himself again, pain free (albeit the issues of having MM and going to the hospital) and be able to do silly things we take take for granted like ride his motorbike, go karting, be able to travel / drive even.
Knowing we cannot predict how long the treatment will keep him MM free or even work is one story, but another is his general health and being stable, its unreal as to one second your are fine happy go lucky the only problem you have is this ongoing annoying pain in your back to which several dr’s think its just a pulled muscle/ tendon after 7 months of pain, to suddenly being slapped in the face and being told your very sick and over night you’re health and whole life has just deteriorated to the point that you’re no longer the person you were because everything has been taken away from you – literally in the space of a day only for it to get worse as the weeks have gone by with more and more limitations.
It’s frustrating to say the least for me so I can’t even imagine what my other half is going through.
Can his vertebrae heal fully or is that it forever ruined?
Sab’s
Hi sabs,
It’s early days yet and your man’s on a trial, so it’s difficult to say what might happen and when. The fact that MM is very individual also has to be taken into consideration.
Just after diagnosis I became very ill, unable to do anything for myself. Went from driving a taxi to being unable to drive. Virtually every bone was affected and I was in a lot of pain. I used enough morphine to counter the pain and that in itself was a revelation – virtually pain free after 30 odd years. I had a huge plasmacytoma in my pelvis that destroyed a lot of the bone. But it’s been treated and shrunk and there’s been some bone regrowth. Other areas that were painful are now not and I reckon that my bones in general, are stronger than they were. Still not perfect but much better.
But everything’s changed. Don’t think I’ll ever work again. My wife’s uncle, who also has MM, has gone back to work though, part time.
Life changes but it’s still life. And it’s what you make of it. I’m older than your man and have no ambitions to fulfil. I’m accepting of things that might perplex others. I take pleasure in little things – a smile, a sight of a grandchild, my children being in a good mood.
All I can say really is that things should get better for you and your man but it might take a few months.
All the best
Taff
Hi sabs
I don’t usually post but have found the forum really helpful since my husband was diagnosed in 2013. He had a couple of damaged vertebrae and was in a great deal of pain at that time so I felt I should respond. His haematologist was very clear from the start that dealing with the pain was a priority. It took a while to sort it out and the palliative care team were involved early on. He takes slow release oxycodone twice daily and gabapentin three times a day. He also has oromorph liquid if needed but doesn’t usually have to take any. Consultant stressed that oxycodone shouldn’t be addictive if it’s needed to deal with pain. He also had one shot of radiotherapy early on. There are options such as vertebroplasty and kyphoplasty (which he opted not to have) but I think the spine needs to be stabilised first which is probably why your husband has the brace.
The end of June seems a long time to have to wait so I’d be inclined to contact haematology and stress how much of a problem the pain is causing and ask what can be done to get it under control. If that doesn’t work phone or email one of the nurses here and ask for advice – they’re really good.
We’re still battling the MM but the pain is under control and life goes on reasonably well.
Hi Sabs
My husband had spinal compression when he was diagnosed in 2012 and had an operation to insert pins to stabilise his spine. It did work but he had to have the pins removed as they caused infection. He has had several treatments and a SCT in May 2015 which gave him 18 months remission. Now on farydak, dex and velcade which is working. He does take gabapentin as he has slight pain in his backend his mobility is good.
Everything is scarey at first but try to stay positive and learn all you can about your husband’s myeloma. Phone the nurses on this site if you have any questions, they are very good.
Thank you Patsyann / Maureen.
My other half is not big on pills so currently isn’t taking any medication for his back, but feels that something is wrong (though refusing to go to A&E) The situation we are in is that he is being treated by two different hospitals, one for the MM and one for the back, the back specialist is meant to be one of the best in the UK, apparently it can take up to 2 years to get an appointment with this guy. He wanted to give it 12 weeks in the body brace to see how how or if it heals . He is in the back brace now purely because there is a slim chance that his bone can heal itself (though my significant other doesn’t seem to be paying any attention to being told to stop bending and don’t lift anything heavy, hes tallish so bends all the time and I am sure doesn’t actually know how to squat), I may have to call the specialists coordinator prior to our visit and grass my other half up. But I have a feeling at the end of the day they are going to have to do surgery to cement his vertebrae.
Interestingly enough neither the back specialist (dealing with MM bone damage) nor the dr’s at the clinic are that interested in his pain – he has a high threshold of pain so people seem to be ignoring it, its what got us into this situation in the first place – 7 months of pain before anyone took him seriously enough to do any form of scan to find the damage and the MM.
We are in tomorrow for the start of cycle two so will bring up the back issue, I just have no idea if its physically possible for it to heal 100% and for him to be pain free without drugs. To a degree I am more worried bout him potentially being crippled right now than the MM.
These times are defiantly here to try us.
Hi sabs
I’d definitely raise it at the hospital appointment. If there’s one thing I’ve learned in dealing with this illness it’s that it’s really important to get answers to any concerns you have. My husband too had months of back pain when he kept being told it would go away and to keep taking paracetamol! So I don’t feel guilty about pushing for answers, and the hospital staff have always been understanding about that. I know what you mean about your lives being turned upside down in the space of a day.
Maureen
I’m glad to hear your husband is doing OK on the Farydak combination. I’ve followed your progress with particular interest as I think you’re fairly near us – we’re in Fife. The lack of available trials in Scotland worries me as treatment options seem more limited than I’d expected. My husband has just finished a course of Velcade and Dex so we’re hoping the good effects last for quite some time.
Hi sabs. Don’t know if this is of any help to you all situations are different we discovered by chance my husband has myeloma because of an MRI scan showed he had broken is l3 vertabre and was in severe pain indeed after blood tests and bone marrow test myeloma was discovered he was in lots of pain indeed and was taking 16 plus morphine a day after treatment of vdt he is no longer in severe pain he knows it’s not perfect but happy it’s so much better he is now able to walk and now can put his socks and shoes on again ! He still takes morphine 1 slow release in the morning and 1 at night (15mg) and takes 4/6 (5mg) throughout the day .but feels so much better with his back we have now finished his 4 th round of vdt and next week harvest his stem cells ready for transplant sometime soon wishing you all the very best on this journey hope this may help x Annmarie
Thank you annmarie, your husbands situation is sounding very similar to ours, he had back pain for 7 months even though A&E and the drs found abnormalities in his blood and urine samples but nothing was ever done for 7 months it wasn’t until they finally referred him to physio that they did an MRI scan and found his L4 (i believe it was) to be on the verge of collapse as well as MM lesion sticking out like a sore thumb.
I am just confused as to, will the bone collapse / can it heal itself / will he need medication / will he be pain free without medication / does he have to have medication, its a few days over two months now and still I am totally lost – again because he is seeing two different specialists i can only presume that they are presuming the other ones will take care of him.
But we are seeing someone tomorrow so will bring this up – Has anyone had damage to their back / bones and had it heal itself without the use of medication ?? Can you go back to normal or is it pain management all the way now?
Hi sabs
My understanding is that normally bone does renew itself (at least to some extent) but the problem with myeloma is that it interferes with this process so the answer, as with so many aspects of this illness, is likely to be ‘it depends’. Everyone is different. And at this early stage for your husband no one may know. Please tell the consultant you see tomorrow exactly what your concerns are. Write them down if necessary. And the answers! Ask what contact there is between the two specialists and how they’re working together on this. Hopefully they’ll be able to give you a clearer idea of the way forward.
Sorry sabs I should have said his MRI scan taken 3 weeks ago after 3 cycles of treatment for myeloma shows a very significant improvement no break showing at all is this the medication helped by not being in work and completely rested since November I do believe it’s the meds that have speeded the back recovery x hope this makes sense
That’s reassuring to know annmarie thank you, my other half wont rest up so we have a problem them however he has been told that from next week he will have a monthly IV treatment to help strengthen his bones so fingers crossed.
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