[auldolfParticipant]

Hi.

First post from me.

diagnosed with MM last month. Began my VCD treatment & start my 2nd cycle tomorrow. I also had Zameta & radiotherapy on my spine.

I have been seeing specialists with no mention of any problems until last week when I saw a new specialist who in his words ” told us how it is” telling us that I have multiple fractures in my spine, pelvis, ribs, shoulders etc. saying that I should now not pick anything up from the floor & limit my driving, which absolutly floored me.

This has now brought it home to me that life will never be the same, but at the same time I cannot help think that a certain amount of scare tactics was involved.

As a previously very active person do I now take this as gospel or continue to live life ..with obvious restrictions.

I suppose a second opinion would be helpful.
<p style=”text-align: center;”>DAS</p>

[taffdParticipant]

Hi auldolf and welcome,

It is indeed a bit of a shock and we can indeed go from apparently healthy to falling apart very quickly.

I suggest that your doc is definitely giving you the gospel; when I was first diagnosed, the weight of my leg with my foot off the ground, was sufficient to cause a fracture to my hip bone, luckily not a weight-bearing part. I had a large plasmacytoma in the bone and had a fist-sized hole in it as well. Your bones are definitely very fragile. You don’t want to be lifting a kettle full of boiling water only to have your wrist/arm break and the possible consequences.

Simply bending over was enough to cause a vertebral fracture for me, though the opportunity to image and diagnose my myeloma was missed at the time.

Suffice to say though, you really are fragile at the moment. I gave up driving immediately, as I didn’t want to be a danger to other road users. Imagine sneezing or coughing while driving; that in my case was enough to cause fractures. A jerk on the steering wheel while passing a bus stop full of kids? The possible consequences don’t bear thinking about.

You have to expect the possibility that you can become very sick very quickly, unable to do anything for yourself. But also realise that this won’t necessarily be a permanent state of affairs.

You’ll get to hear that different people are affected differently and this is true. Nobody really knows how myeloma is going to affect you personally. Some go on to have virtually ‘normal’ lives and some are severely affected on a permanent basis.

I wish you all the best as you proceed along your journey

 

Best Regards

Taff

 

[MikejanulewiczParticipant]

Hi
Welcome to our select club.

Never give up hope.
Life may have to be a little different but it may even be better.
And taff is right that everyone with myeloma is different

I’m now 55 and was diagnosed 6 years ago this month after bending over and fracturing a couple of vertebra. I had vtd, stem cell and since have relapsed twice. Each relapse has led me to have further vertebral collapse and an unstable neck requiring surgery. This sounds really scary but you just take it in your stride and slow down when the pain is bad.
Has it changed my life- yes. I retired from my job, thinking I hadn’t too long, the docs got that wrong!! Steadily I’ve built up my strength ang in the last 18 months have built two extensions on my house labouring for my builder friend, yes picking up bags of cement, yes totally against the docs advice. But, loving and enjoying life.
I’m also thinking of swapping my very sensible car for a sporty, fast jag!! I just need to check first that I can get in and out!!
I hope that I may have given you some hope that life can continue to be real good.

Good luck with everything.

Mike

[peterlParticipant]

Hello Mike J,  I’m sometimes in awe of the posts that MM patients supply here — and yours in such a one.  And yes, the Drs DO get it wrong, as your post diagnosis activities describe.  I’m not going to say take it easy regarding lifting bags of cement (I know they’re heavy), because you’re obviously in your element and enjoying every minute…  And long may it continue mate!  As far as the new car’s concerned:  I was a bit big (before MM) and I got a ride in an MR2,  I think it was.  And, yep, the only embarrassing problem was getting out of the ######.  My son laughed his head off!  But a low slung Jag should be okay, but obviously try it first.

Thanks so much for your post – it’s better than a tonic!  The very best of luck.

Peter

[LizcParticipant]

Hi
You have every right to think that your life will never be the same again, it wont be the same BUT that does not mean it is the end of life. Your life will be very different but you will come to accept all the changes over time and life will still be good. Like you I was diagnosed with mm and mutiple fractures of the spine, 9 in total and a tumour in the neck that had to be removed and my neck stabalised with plates which means my head is in a fixed position with no movement left or right or up and down. It seems awful but it is surprising how quickly you adapt. Of course I cannot drive any more but despite all the disability life is still good. I was diagnosed in 2011 at the age of 58 I had 6 months ctd and radiotherapy then a stem cell transplant in Kings College London and after 3 months of that I was in full remission and off all medication and I have continued in that vein ever since. I have suffered three more fractures since but I consider myself very fortunate indeed to still be in remission 6 years since the transplant and completely drug free. I wish you well with your treatment, there will be very tough times ahead but the new drugs are now much more effective and treatment greatly improving all the time. So look on it as a new chapter rather then the end of the book. I live life to the full and hope to continue for a
good while yet . Stay strong and keep positive. Liz

[jamesfergParticipant]

Does any mm sufferer have any experience of balloon rhinoplasty to reduce lower spine compression fracture?

[jamesfergParticipant]

Sorry the word is kyphoplast but my predictive spell check plays games!

[MikejanulewiczParticipant]

Hi
I haven’t had this procedure Jame’s but I have had compression fractures.
The neurosurgeons saw me and considered kyphoplasty but I was referred a bit late (waiting list etc) so by then the pain was much better (morphine) and movements improving. I remember them saying the risk is that you make the diseased vertebra very very strong with the cement but that this can weaken/put pressure on the vertebra above and below.
All in all it took about 6 months for me to come off the morphine post fracture and be reasonably pain free.
I’ve since had several more compression fractures and each time I decided not to see the neurosurgeons for kyphoplasty as I knew things would improve. The only time I’ve had intervention is when my neck went and the neurosurgeons put in some scaffolding.
I hope this helps.
Kind regards
Mike

[jamesfergParticipant]

Thank you mike, thank heavens for Butran patches. Dad to hear that more fractures could occur. I hope that the Zometa will help to prevent them.

Good luck in the future

 

[MikejanulewiczParticipant]

Hi James

You’re right about the Zometa, it helps strengthen the bones.
Everyone with myeloma is different, some get lots of infections, some kidney problems, and some like me get compressed vertebrae or other broken bones.
All the above to a greater or lesser extent.
Nothing is a certainty.
So enjoy life as much as you possibly can.
Let us all know about the outcome//decision on kyphoplasty.
Good luck.
Mike

[glynnisParticipant]

my husband has had mm for 8 months 2 spinal fractures and collapse on the lower spine.  He has had 7 months of chemo injections, thalidaminde, steroids and zonate drip.  6 weeks ago he had kyphoplasty and he spine is horrendous he has already spent 6 weeks in hospice to control the pain but the side effects from the treatment are horrendous.  He was a very healthy 70 year old walking at least 20 miles a week with our group and lots of gardening has always played sport and look very young.  He is now a shadow so weak and thin also bent over has anyone suffered like this and will there be a light at the tunnel.  would like to hear from anyone that may help us as I find it so difficult to see him in so much pain.  Apparently his bloods had plattooed and because his side effects are so bad he is coming off the last month.  Sorry to go on as I know it is horrible for everyone but I am also finding it difficult to cope as he has not been able to sit comfortable for 8 months he has a special chair  but that is no comfort and laying is also difficult.  I actually feel very alone as he is trying to be so strong, but is so weak and thin.

maybe someone can help

thanks

 

Glynnis

 

 

 

 

[MikejanulewiczParticipant]

Hi Glynnis,
I really hope your husband will very soon get his pain controlled and be able to enjoy things again, even if it means a change to strenuous activities. You may have read above that I’ve had quite a few vertebrate fractures and collapses. I regard myself as very very lucky as my diagnosis and first fractures where 6 years ago. Yes I do still get back pain and I’m back on morphine, it’s not horrendous and I’ve no other side effects from my present chemo.

Now the most important bit!!——you.
It’s easy for us patients, it’s our spouses who suffer more as you watch us in pain and being unwell. I don’t know how best to suggest how to get through, family and friends are often very helpful, but I wonder if you yourself have spoken about support for you?? If your husband is still being seen by the hospice then this could be an avenue or alternatively, the specialist nurse from harmatology department. Or another suggestion, the nurse helpline from this myeloma uk site.

I’m sorry not to have been more help. Please let us know how things are going.

Take care.

Mike

[glynnisParticipant]

Hi Mike,

 

thank you so much for your reply it has made me feel better especially after a long day at hospital again and the news was my husband has not got another fracture just they suspect muscle pain.  So maybe we can look up now Mike as I have told him about your email as he has been sure that he will not be long for this world.  I do have friends and we have a son who come when he can but does live 4 hours away.  I suppose things happen of a night time and it always seems worse.  It would be lovely to go for a walk again especially if weather stays improving.  I must say the hospice have been wonderful and I have really put John first so will get in touch with them for some support again.  Thanks so much for reminding me there is a life with Myeloma as it can be so easy to forgot.  Good luck to you to.

 

regards

 

Glynnis

 

 

[reedhammanParticipant]

Four years ago I was diagnosed with Myeloma. My spine collapsed and I lost a few inched in height, which left me in pretty bad pain and I had to sleep in a special chair for about six weeks. Could not get into bed. Could hardly eat, I was thin as a rake.

There is really no light at the end of the tunnel, my body will never be right again but things can get better. Pain is now manageable and I have regained the weight that I had earlier lost. I am 69, I have given up all physical work but life is not too bad and I think I will go on for some time yet.

Regards John

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