[ChristineandjimParticipant]

I was first diagnosed with myeloma in May this year and the original combined treatment depressed my white cells so I started thalidomide, which worked well for five months then stopped working! I have now started Velcade and it seems to be working although this won't be confirmed until our next review tomorrow! All this has left me with three collapsed vertebra and poor mobility. Is there anybody further down the treatment line who can share their experience of how the collapsed vertebra is likely to effct me in the short and longer term future please?

[tomParticipant]

Hi Christine

Welcome to the site but am sorry you had to join:-(

I cant add to the collavertebraabra as i am fortunate enough not to hsuffererfere that. Just wanted to welcome you into the site and wish you luck 😀 I am over two years post SCT and doing great so keep strong on the road to remission.

Love and hugs

Tom "Onwards and Upwards" xxx((())

[eveParticipant]

Hi Christine
My name is Eve and i am a carer for my husband,first let me welcome you to your journey,and to answer your question,yes there are lots of people ahead of you on this journey.
As you must know by now people react different to different chemo and also people have different damage to bones.

my husband had 2 vertebra cracked plus tumour on spine,but his spinal cord was not compromised,he went through a bad time at the start and used a wheelchair for a short time,he is much better now although we limit walking to short and often.
The Zometa has worked wonders for him,from not being able to lift a small bag,he can do that now,although I do moan at him,because I worry he will do more damage to his bones,He has other damage as well on other pats of his body.
he is roughly at the same stage as yourself,he has just finished 6 cycle of Velcade and waiting on a BMB then consultant in new year.

In the long term I think you will fins someone on here will reply to you,as many people are further down the line have remission and have had bone damage. Regards Eve

[StuartParticipant]

Hi Christine
my wife was diagnosed in July 2008, and at the time of diagnosis she had several collapsed vertebra, to the extent that she was unable to walk or stand up. In her case the hospital concerned performed a vertebroplasty on her collapsed vertebra and over the following couple of months she became completely mobile again. She too at that time was being given Velcade in addition to which she responded well. I think that now the preferred surgical treatment for collapsed vertebra is a balloon kyphoplasty, but that might just depend on which surgeon you see.
I don't know where you live e UK but I do know that there is a back specialist at St Georges in Tooting who also has a very good knowledge and understanding of MM if that is anywhere near you.
Three years down the road I can reassure you that apart from losing a little height my wife has few other complaints about her back.
Good luck, I'm sure that there is lots that can be done to help you!
Stuart

[mhnevillParticipant]

Hi Christine

Sorry to have to welcome you to this elite club!! Glad others have been able to answer your specific questions. One thing I have learnt from this site is to concentrate on what you can do, not what you can't. Now you have been diagnosed and are being treated, I'm sure that, like most of us, you will eventually find you can do more than you can now.

All very best wishes. Do keep us informed of your progess.

Mavis

[ElizellenParticipant]

Hi Christine!

I was diagnosed at the beginning of 2010 because of intense back pain which had been caused by 3 vertabrae collapsing at once. Since then several more vertebrae have gradually deteriorated.

They decided to do chemo then a stem cell transplant immediately to zap the MM so did not look into doing a balloon kyphoplasty initially and I am still awaiting the verdict as to whether they can do anything now I am in remission to alleviate my back pain by some kind of surgery.

Apparently I have a few bone fragments floating near the spinal chord that they are worried about disturbing and shifting the wrong way, so it might not be a possibility.

I have a nagging back pain most of the time but it only becomes unbearable if I stand, bend over a workbench or walk for 20 minutes or so. So I can do quickly finished stuff if I plan things and make sure I can sit down frequently which seems to lessen the pain.

I haven't found a painkiller that really works so on the whole I manage without, as I would rather put up with a bearable pain than suffer the constipation etc which most painkillers gave me.

I have a retail shop selling stained glass supplies and though I do not have regular opening times any more I still manage to open for an hour or so when people contact me to arrange it, so am still working some of the time and keeping the business ticking over. If I had a sitting down job I reckon I could manage to carry that out OK with little disruption.

I manage to drive fair distances and walk around the supermarket to get my shopping (I always use a large supermarket trolly even if I am not buying much, as part walking frame/part trolley) so can get out and about to my old haunts, so do not feel too restricted in daily life.

We bought a mobility scooter when I was first diagnosed which I do use to get to hospital appointments (Bournemouth Hospital corridors are very long!!) and for longer shopping excursions, so if that might be useful to help you get around do look into getting one. We bought ours on ebay for very little money, as well as a vehicle hoist so I can get it in and out of the car on my own.

So for me it has not been the end of all my previous interests and occupation.

Wishing you all the best on your myeloma journey!

Elizabeth
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[ChristineandjimParticipant]

Thanks so much for all who gave their valuable time to reply to my posting. We are only just finding out how the disease,the treatment and the responses to them, are all so individual and unpredictable, but your stories are very positive in a world where it is easy to drift into negativity. Thanks again! Love – Chistine

[brochoParticipant]

Hi Christine and welcome I am sure you will find this site as invaluable as I do. Sorry I cant be much help re collapsed vertebrae though. In my case I had 3 vertebrae completely dstroyed before being diagnosed, the doctors used to shake their heads in amazement because I was walking around , mind you the year of absolute agony was no fun Before I had any treatment for myeloma I had surgical reconstruction to my spine which involved metal plates and rods on three quarters of my back. Because the diagnosis took so long I have very extensive bone damage and as a result Iam not able to walk far or stand for too long and I have been on varying doses of morphine from the beginning. I hope they can do something to help , the vertoblasty sounds promising and I hope you get good news about your Velcade treatment tomorrow Please let us know how you get on Best wishes Bridget

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