[mhnevillParticipant]

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

[mhnevillParticipant]

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 SCT but still do very well and other people do and yet have a shorter remission.

I think Andy’s philosophy is the best for all MMers! Do as much as you can, while you can and don’t worry too much about the future. I know it’s easier said than done.

All best wishes.

Mavis

[mhnevillParticipant]

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 with your treatment. Hope you are not having too bad side effects. What drugs are you on?

All best wishes.

Mavis

[mhnevillParticipant]

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 side effects. Do they adjust the doses or is there only a standard dose?

Although still in remission I find the tiredness a real proble. If I’ve something I really want to do I can usually summon up the energy, but if I didn’t force myself I could easily just stay at home and vegetate.

I must say I don’t have the emotional energy to come on herr very often, but feel guilty about that.

Still, we can’t afford to give in can we! I feel we are the lucky ones on here as we are still here to have these battles. Let’s hope we have lots longer so that new treatments may come through or the current drug dosage and/or side effects become more manageable.

Every day is a gift.

Love to you both.

Mavis xxx

[mhnevillParticipant]

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

[mhnevillParticipant]

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

[mhnevillParticipant]

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 your husband soon. He is obviously a fighter and that goes a long way with this horrid disease.

Best wishes to you both.

Mavis

[mhnevillParticipant]

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 holiday home. Let’s hope we are going to get the promised turn in the weather so you can really enjoy it. Aren’t you glad you retired!
It’s amazing that both you and Andy are benefitting from a drug that wasn’t on the horizon when we all started this journey. Plenty more in the pipeline so hang on in there.

Love to you both.

Mavis x

[mhnevillParticipant]

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

[mhnevillParticipant]

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

[mhnevillParticipant]

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 and pray your blood results are Ok on return.

Yes, you are inspirational!

All blessings.

Mavis

[mhnevillParticipant]

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

[mhnevillParticipant]

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 Black Swan, looking for a cure for MM. Hold on to the hope that it will be successful in your wife’s lifetime.

Very best wishes.

Mavis

[mhnevillParticipant]

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, but I found I needed higher and higher doses plus liquid top up. Problem was I was permanently zonked.

How old is your Dad? I am 70 and currently in remission, but unfortunat the pain has still followed me.

Best wishes to you and your Dad.

Mavos

[mhnevillParticipant]

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 haven’t had a transplant of either kind I have always found her blog inspirational and she doesn’t pull any punches.

My thoughts are with you as you make these difficult decisions.

Helen, who regularly posts is also having to contemplate going down this route.

Keep in touch.

Best wishes.

Mavis

[Author]

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