[mike59Participant]

Hi everyone, my name is Mike and I've just been diagnosed this week with Myeloma, aged 53.

It's come as a shock as I'm not really experiencing any symptoms apart from a few aches and pains (was picked up in a routine appointment).

We're still taking it all in at the moment, and so are still quite confused about the effects of this disease.

During my appointment with the specialist I forgot to ask a few questions (as I was still absorbing the news). The main one I was wondering if anyone has experience of is whether carrying my work bag (I'm a postie so often quite heavy) is going to exacerbate the collapsed/compressed vertebrae that were picked up on the x ray.

Many thanks in advance.

Mike

[eveParticipant]

Hi Mike
Just a welcome to a exclusive club,be it that you are a patient carer family or friend.It is mind blowing when you are first told even if you are expecting it,I could tell you not to worry,but you will,your mind will still be awake in the early hours of the morning,but you will over come all this,and find out it,s not the end of the world,it,s just a different one.

The answer to your question is Yes,but again your employ has a duty of care and should be able to change your duties.many people carry on working all the way through treatment.It does depend on your body.

It does sound if you have been caught early,which in it,s self is a very good thing,lots of people sail through treatment have SCT and are out there,and you would not know they have Myeloma,and there is no reason why you cannot be one of them.

Good luck on your journey.Eve

[VickiParticipant]

Hi mike,

My partner Colin was diagnosed last October 2011, like you at a routine appointment! We were shocked, scared and unaware of this condition! He has one wedge on his vertebrae, has been able to work most of the time, either from home or at work, during treatment. He is waiting a SCT in august. To be honest once we got into a routine we just challenged this head on, asking lots of questions, making notes on how Colin was feeling, eating etc. I have tried to be careful about what he lifts, just in case of any other fractures accruing. I assume you are starting treatment, so welcome and good luck!

Vicki and colin x

[mike59Participant]

Hi Vicky, Colin and Eve for your comments and support.

My boss is being very supportive and so I will ask whether I can switch to something lighter until we know more.

Not starting treatment yet, but off for an MRI scan Thursday so should know a few more details then.

Mike

[andygParticipant]

Hi Mike.
Welcome to the forum. You'll find lots of support and friendly advice here.
Everyones MM journey is different as is their response to treatment and the drugs. Hopefully you'll sail through it to a stem cell transplant.
I was diagnosed at 53 too oct last year – unfortunately my back was quite badly damaged. I'd been on the sick 6 months with it before diagnosis! I would urge caution lifting anything at the moment because MM softens your bones and you will be liable to more damage to your vertebrae. Back damage is a very common symptom and can be very painful. I speak from experience :-/ Hopefully you've been caught early enough and your back won't be too badly damaged – wait for the results of your MRI before you test your back out.
Feel free to ask ANY questions you like you'll always find someone willing to answer or point you in the right direction.
Take care.
All the best
Andy

[tomParticipant]

Hi Mike
Think I was 53 when I found out ??
But a warm welcome to the site ask away and if you need to moan winge and nearly cuss feel free this is now your sounding board.

Where are you or will you be treated as some one on here might be having/had treatment at your area and can give you a heads up on that.

Stay Strong Mike and Good Luck in your road to remission

Tom "Onwards and Upwards"8-)

[mike59Participant]

Thanks so much Andy and Tom,

Very grateful for all the support. I will definitely have a chat with my boss on Monday – I think some posties have a trolley to push around rather than a bag which might be better – I'm keen to carry on as close to normal as I can for as long as possible.

I'm based in the Forest of Dean in Gloucestershire so have been to Gloucester Hospital so far.

Once again many thanks to all for the kind words and advice.

Mike

[tomParticipant]

Hi Mike

Well am In Scunthorpe and was treated at Scunthorpe and Castle Hill in Hull.

Keep us informed Keith and dont forget this is now your forum so use it as often as you need.

Tom "Onwards and Upwards" x

[CarolBradley1Participant]

Hi Mike

Sorry you have had to join us but a very big welcome to you (and your supporters). I´m sorry that I don´t know anything about carrying etc. but did just want you to know that I was diagnosed in 2005 at age 54 and after chemo and a stem cell transplant I am still horseriding and have just come in from painting the outside of the house!
Like you, I only had a few symptoms so they found the MM by accident when I had blood tests for anemia really. Anyway, once they treated the anemia I was fine for just over five years and lived a normal life and continued working pretty hard. It was only when I had rising para protien levels that my specialist advised treatment which I have described above.
This site is really good and the people have all "been there" which can help such a lot because you can "let off steam" in a way that you can´t always do with loved ones because you maybe don´t want to upset them.

Take good care of yourself and please do bear in mind that lots of new things are happening all the time.
Very best wishes
Carol xxxx

[mike59Participant]

Thanks Carol,

It's good to hear other people's experiences and understand a bit more about the disease. Good to hear that people are still living normal lives.

The frustrating thing at the moment is it just feels like being in limbo – waiting to see the specialist, waiting for scans, waiting for tests results…

Many thanks again

Mike

[ElizellenParticipant]

Welcome to the club you never asked to join, Mike!

I hope it won't be long before your test results allow your specialist doctor to plan your treatment if needed and get you out of that limbo-land.

As for whether carrying a post bag will make things worse, my doctor told me right at the beginning after diagnosis (after some of my vertebrae collapsed) not to lift anything heavier than a handbag!

So I would speak to your supervisor immediately about getting a trolley or frame on wheels to take the load off your spine.

Some of our posties have one like this

[img]http://news.bbcimg.co.uk/media/images/59571000/jpg/_59571574_59571573.jpg[/img]

and I have seen one local postwoman actually jogging with hers!!

Since my SCT in August 2010 I have been receiving monthly infusions of a "bone strengthener" called Zoledronate, which seems to have stopped any futher deterioration of my spine, so hopefully they will be able to stop any further damage.

Love
Eliz
XX
X

[mike59Participant]

eliz,thanks for the reply i am starting with the trolley tomorrow but i feel a bit of a fraud as not in a lot of pain, thanks again and look after yourself.
mike

[ElizellenParticipant]

Don't ever think anything that makes life easier for you and helps retain your quality of life is in any way a thing to feel guilty about, Mike!

The more you can do to avoid any further skeletal damage now the better it will be for your future mobility.

Love
Eliz
XX
X

[PilgrimParticipant]

mike59

Take no risks. I felt a bit of a fraud myself when it was first suggested that I might have 'bone cancer'. My GP is usually very cautious and that made the suggestion all the more surprising.

At the very least you are at increased risk of bone damage and back pain is not something to risk. I am officially only MGUS but I spent a week in hospital last year with back pain and, though my CT scan evidences quite an amount of bone damage, it appears that they don't put it down to MGUS. I can walk alright, but I do have aches and pains, especially if I exert myself.

I've led a very active life and know that it can be tempting to disregard risks but damage done now could affect the rest of your life, and it won't benefit your employer if you spend months off work through back pain.

It appears that I have a slightly unusual variation and MM can affect you in many different ways, and part of the medical process appears to be seeing how it affects you and how fast it is progressing.

My next appointment isn't until late September but I presume that will determine what happens next if my results have increased significantly. So far they increased 25% in six months.

When I was working my employer always wanted definite information but that's not how it works.

[VickiParticipant]

Mike,

I see that you are in the forest of Dean. Colin and I are too. We also go to Glos royal. This is where Colin goes for his monthly check up and blood test and an appointment with the consultant. At diagnosis we saw Dr Sean Macpherson. We've also seen Dr Johnny, Dr Frewin and Dr Chavda, all of whom we cannot fault, are prepared to answer questions however small, or seemingly insignificant. Colin was asked to go on the myeloma x1 trial and whilst each person responds differently he has had a good response and we are now waiting stem cell harvest and then a transplant, initially at south mead Bristol and then the long stay (about 3-4 weeks) in cheltenham.. We have taken precautions about lifting, and Colin has a daily dose of bone protection, in tablet form.

Hope all goes well for you, any questions about local issues please ask, we might know (no substitute for the medics though).:-)

Vicki and Colin

[Author]

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