Thank you

I do hope your journey,s are long and the best you can make of them,Liz it’s best to escape the roller coaster as we all know it’s going to pass your way again,and Myeloma should not become normality,but in the end it’s the only thing you know.

Thank you both again,Stanley,Slim was always proud of me, but he is more likely to come back…[Read more]

Hi Rebecca

I have just looked into your profile as no picture! And see how much you are now helping other people, I know I was too blunt at times! But you seemed to be able to get the message across very well, this is the way it should be,helping each other on this journey,then leaving that road and going on a different one.

It makes all of us…[Read more]

Vicky
It goes without saying how sorry I am to hear your news.
i know the auto pilots switch is on for you now,it takes awhile to realise how exhausted you have become,it’s very hard to cry and mourn.
Just try to cope the best way you can,these last few years you have held everything together,being strong for everyone,I can only say,be proud of…[Read more]

Thank you Ann

I have come along way in the last 5 years, 4 years of Slims illness and 1 year on my own,it’s a big learning curve,and I still look in on cyber friends,see how Tom or Andy plus a few others if they don,t post on the Facebook site UK Myeloma ,I worry. So Myeloma never really leaves my world although Slim has gone.

I just wanted to…[Read more]

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]

Hi Jared

Welcome to the Site. Sorry to hear your SCT didn’t work for you. I think you would find Jetblack Living Blog really helpful as Jet has gone through a donner transplant and writes very helpfully about it. She is also in a similar age group to you. She doesn’t often post on here, but you can find her via your search engine. Although I…[Read more]