Hi Alex

A bit late to respond to your post, but I don’t come on so often now. Wonder how your Dad is getting on? It’s quite possible he is in the ” wait and see” phase which can be even if he has bone lesions. Treatment is all based around readings of the blood tests. Do you have any readings for your Dad?

Hope all is as well as can be…[Read more]

Hi Compass ( do you have a name?!!)

Just caught up with all your posts. Welcome to the site from me. I’m rather an old stager now at over 5 years post diagnosis and currently in remission though I have lots of problems with bone pain and my kidneys are compromised.

You seem to be remarkably positive in spite of everything. I do find this…[Read more]

Hi Geoff

Have just read your post. Like you I haven’t been on so often lately. So sorry to hear about your daughter. Even though not totally unexpected, never the less it must have been a real body blow.

Time will no doubt help, but will never take away the fact that she is no longer here to be loved and to show love. Do you have any faith…[Read more]

Hi Bob

I was interested in your post. Welcome to the Forum.

Sorry, I have nothing to offer on the question you ask, but wonder if you think coin God zometa and relapsing are linked?

I had my final zometa in May after well over three years of four weekly infusions. This was because my kidney function was deteriorating. Glad to say, in…[Read more]

Dear Vicky

I have only just read the sad news of Colin’s death. I don’t tend to be on as often now.

Colin certainly faught a good fight against this dreadful disease. I am glad he is at last at peace.

Do hope good memories are helping as the numbness of the early days wears off.

All love.

Mavis x

Hi Maureen

So glad that things have turned the corner for you and Ian. Who would have thought it when Ian was so poorly and distressed in the early day after diagnosis.

Here’s to the future.

Best wishes.

Mavis

Dear Simon

I can feel your frustration with you. As Andy has said this is a complex disease and each one of us is very different. I can say though, having read posts on here for five years, that having “only” a partial remission doesn’t seem to determine the progress of the disease. Some people don’t seem to achieve full remission even after a…[Read more]

Hi mjb

Sorry no one has replied to you post. This should bring it to the top of the List again.

Glad that you are getting the pain under control. As I understand it, the law allows those to drive, if on controlled drugs, provided the drugs are properly prescribed and you are fit to drive.

I must admit, I find my car my lifeline.

Good luch…[Read more]

Hi Helen and Andy

I realise I am answering the wrong thread, but hopefully you’ll receive it!

I’m sorry you are both finding Pomalidomide so difficult. I can see where you are though, in a catch 22. It is important isn’t it to get as much quality of life as possible. It’s a shame that your body doesn’t eventually tolerate the drugs with less…[Read more]

Hi Chris

Thanks for your response. Does the OxyContin make you sleepy? I shall certainly discuss it as a possibility with the Pain Nurse. I did have it earlier. Can’t remember why I changed!

Best wishes to you.

Mavis

Hi Maureen

So glad Ian is the right side of his SCT in spite of set backs. I do hope you have some very good years ahead of you.

Love to you both.

Mavis x

Hi Val

Welcome to the Site as an active member. I’m sure Ellen is right about no having your husband’s particular kind of plasmacytoma. I was diagnosed because of a plasmacytoma which was compressing my spinal cord. It was successfully removed by surgery and metal support put in my spine.

I do hope they decide on a regime of treatment for…[Read more]

Hi Andy

Glad to hear you are back on track after the holiday. There is always that elephant in the room isn’t ther which we all try to avoid! I’m amazed how many lots of Pom you have had already. Can it be like a maintenance drug? Just keep knocking the MM back day at a time.

Hi glam Helen

Was wondering how you were getting on with your…[Read more]

Hi everyone

Does anyone know how high your creative levels are likely to be befor you get into renal failure? I an increasingly worried about my kidney function.

Best wishes to all.

Mavis

Hi,

I am now 70! Was diagnosed nearly five years ago. Had one lot Of treatment CDT, four years ago and have been in remission since. I didn’t want a SCT for same reason as your mum. I have monthly ZOMETA and meds for bone pain, but don’t regret not pushing for SCT as not everyone gets a long remission.

Best wishes to you and your mum.

Mavis

Hi Andy

So glad you are still getting to Greece and enjoying the beer in spite of everything. My advice to everyone on here would be “do it while you can.” I am not up to travelling to Luxembourg to see my daughter and family at the moment, but have pencilled in a visit for September as something to aim for. We can’t give up, can we.

Hope…[Read more]

Hi Vanessa

Persistent infections do seem to be part of the MM package. Although in remission I get frequent bouts of cellulitis. However, have you thought of talking to one of the MUK nurses to ask what they think about a second opinion?

Best wishes.

Mavis

Hi Tony

Welcome to the site you never wanted to join. As you read you will find that there is a great amount of research going on into a cure for MM. Treatment options have mushroomed since I was diagnosed nearly Five years ago so stay positive.

Apart from this Site the American site Myeloma Beacon is very good.

There is a Project called…[Read more]

Hi

Sorry to hear about your Dad’s pain. Has he seen the pain nurse? I find the palliative care nurse the most helpful person to help with my pain. She explained to me that we often need a mixture of pain killers. I am currently on paracetamol, Tramadol and ibruprofen. It just about keeps the pain manageable, but initially I was on oxycodine,…[Read more]