[hotfootParticipant]

Hello Everyone,
I’m Pauline, a 72 year old lady who is very young at heart. I have suffered with severe lower back pain for a very long time which my GP keeps
telling me is arthritis now spreading to my hips. I have also been complaining of fatigue for some months now. Some weeks ago, following a routine blood test, I was called in to the surgery when my GP told me there was a problem with a protein in my bone marrow which needs to be monitored as it may possibly lead to cancer. Around the same time I was admitted to hospital as an emergency with severe anaemia and was given a blood transfusion followed by an iron infusion. Again around the same time I was referred to an orthopaedic specialist for my back who ordered an MRI scan which came back negative. In her letter to my GP, of which I was sent a copy, she mentioned the word ‘myeloma’ in relation to my next blood test. This made me look it up on the computer and that’s how I found you. I have my next blood test in a few days. Should I be asking my GP outright if I have myeloma? As I’ve already had cancer twice with 12 years in between, and am living alone with no family here, I feel very alone and scared. I’m sure someone reading this will be able to identify with how I feel and be able to offer me some words to ‘buck me up’. Of course I understand that I may not have the problem at all but just now I feel in limbo. Thanks for listening

[val72Participant]

Hi Pauline
I am also 72 and was diagnosed with myeloma in June 2017, like yourself after a period of being unwell and in increasing pain. I was treated with velcade (plus thalidomide and steroids which caused problems so I only took those for 1 month). After 8 months on velcade I was in remission for 18 months, but unfortunately had a relapse earlier this year, so am now on an indefinite dose of lenalidomide and steroids, which will continue for as long as it works (could be several years!)

The two main indicators for myeloma are high free light chains (mine went up to 6,600) and/or high paraproteins (mine went up to 28. Both of these are identifiable from a fairly straightforward blood test. I had three fractured vertebrae and several fractured ribs initially, which caused a great deal of pain, so I was on slow release morphine for several months, though there has been no new bone damage this time round and the chemo has reduced the indicators considerably.

I would have thought that the MRI scan would have indicated whether there was bone damage from myeloma (a kind of honeycomb effect), but the blood test certainly would be conclusive.

It is scary being diagnosed with something that you have probably never heard of – I know I certainly was! The velcade, if myeloma is confirmed, is a weekly injection and I also had a monthly intravenous drip of zoledronic acid, which is a bone strengthening solution that I am still having monthly. I have total trust both in my GP and the medical team at the hospital, but it is best to clarify anything that is said. Is there a friend or relative that could go with you to the next doctor’s appointment, as it is easy to forget just what was said? If myeloma is confirmed, then you should be put onto the system very quickly and your condition will be closely monitored.
The very best of luck with it all and I hope the treatment is as effective for you as it has been for me.
All the best Val

[hotfootParticipant]

Thanks for your reply, Val. My goodness, you’ve certainly been through it, haven’t you? I hoped the MRI would show up a problem which could then be solved and that I would get well but, unfortunately, that wasn’t to be. However, ever the optimist, I live in hope. Incidentally, because of my cancers, I have had 2 dexa bone scans, each one showing I have strong bones, something to be thankful for. The last one was nearly 2 years ago but I don’t know how quickly bones would deteriorate. Have you had any problems with severe pins and needles? I had them in all 4 limbs almost constantly before my transfusions but now I only have them in my right leg, although they involve my whole leg and are constant.
Thank you for your kind words, Val, I know I’ll keep referring back to this if I do have a diagnosis. I wish you all the best and hope you continue to be in remission as I am with my cancer (again).
Take care.
Pauline

[val72Participant]

Dear Pauline
About the only thing I haven’t had is the pins and needles (peripheral neuropathy) and I think that is because we have a dog and the consultant advised me to keep walking, even for 15 to 20 minutes a day, to improve the circulation in the legs. I don’t know whether that would help with you.
It’s good that you have strong bones, though they may put you onto the Zometa (the bone strengthening infusion) in any case, to make certain that there is no bone damage.
Do keep in touch and good luck with everything.

Best wishes

Val

[val72Participant]

Dear Pauline
Forgot to mention that Myeloma UK provide an excellent infopack for newly diagnosed patients, also a patient diary that can help keep track of what’s happening.
Hope you’re ok.
Best wishes
Val

[hotfootParticipant]

Thanks, Val, I’ll send for it. I really appreciate your help.
Kind regards,
Pauline

[puyarnaudParticipant]

Morning Pauline,

Reading of your difficulties with your GP, I feel you should be demanding that he refers you to haematology who will test your blood and either confirm myeloma or perhaps MGUS a precursor sometimes to MM. As we are now well into October perhaps you have already been referred.

Roger

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