[mhnevillParticipant]

Hi Mandy,

Sorry you are having so much pain, even though you are in remission. This is one of the horrible things about MM.

Have you seen a Pain Specialist? I saw the Palliative Care Nurse ( sounds grin, but wasn't), this was very helpful as she worked with me till we found formula which worked.

Nothing worse than pain. Lots of love.

Mavis x

[mhnevillParticipant]

Hi Richard

Enjoy these days before SCT. Hope it isn't before Christmas!

Do they keep you in hospital, post SCT, in Germany. You sound to be getting very good treatment.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Illiona

Glad to hear the update on your dad. Glad he was able to go for the second lot of treatment.

I know the Zometa is yet another thing to cope with, but I have been so grateful for the way it helps prevent me having any bones break, as I am at high risk. Apart from a shivery fever type thing for one day after the first treatment, I have had no side effects.

Hope your dad continues to do well.

Mavis x

[mhnevillParticipant]

Hi Maureen

So glad to hear your news after such a rough time for you both. Do hope things go really smoothly one. You deserve a break!

Keep strong.

Love

Mavis x

[mhnevillParticipant]

Hi Michelle

Sorry to have to welcome you to the Site. So sorry to have to welcome you to the Site.

I do understand where your mum is coming from in no treatment. Once I had an operation to move a to our from my spine, with subsequent radiopherepy, I didn't was to have any more treatment at that time apart from bisphosonates for my bones. I also decided I would not want to go down the SCT route. I wanted life to be as normal as possible. I achieved this for 18 months and then had another episode of losing mobility. As the myeloma had become very active again in my bones, I them had six lots of CDT leading to complete remission just over a year ago.

You can see I took a gentle approach to chemo etc. what you didn't say was what symptoms led to your mum's diagnosis and what her PP readings are. You will have gathered from on here, everyone's MM is different! It is just, if your mum has any bone involvement I would try to persuade her to take up monthly infusions of Zometa. – it is a very short hospital visit every four weeks, or there are tablets. I am certain it is the Zometa that has stopped me having any fractures even though they say my body is full of lessions.

Lots of love to you and your mum.

Mavis x

[mhnevillParticipant]

Hi Jan

Missed this post before. Sorry we have to welcome you to the site. Sorry you have had to join us, especially as you are both young. MM is a horrible disease, but I can't believe the progress there has been in knowledge and the number of drugs developed since I was diagnosed 3 years ago.

I wanted to post because I decided early on I didn't want a SCT. I was 66 yrs when diagnosed and had other health issues. I managed 18 months before I had treatment and then had six lots of CDT and have now been in full remission for over a year.

Trouble is, you do get things to cope with, even in remission, but it is a great place to be.

As Andy, a Site member says, every day is a gift use it well. May you and Mike have many more. The American MM Organisation, which has been responsible for fundraising for development of many of the new drugs has a Project to find a cure, called " Black Swan". I am praying they will be successful. My faith helps me get through and live with the uncertainties of MM.

All best wishes. Keep strong.

Love to you both.

Mavis

[mhnevillParticipant]

Oh David

As I said, you do put an amusing spin on everything. I amused at the thought of you building your own coffin! Is it flame proof?! I remember seeing a programme about a barge owner making one decorated with barge-like decorations! I must admit to be planning my own funeral, but I guess, like you, hope it's not used for many years.

I am intrigued about you having MM around your eyes. I don't recall hearing anything like this before, although have read plasmacytomas can form in soft tissues. I wonder if this is what it is?

Do take care and keep battling on.

Love

Mavis

[mhnevillParticipant]

Hi Gill

I can hardly believe so many things could go wrong on one trip! Surely you must have had your lifetime's mishaps rolled into one journey. Yes, I am sure Stephen would have been proud of you. I can't imagine how I would have coped with all that. I can't even face driving in Europe.

Here's to the next trip. I'm sure your feet will get itchy come next spring and France must hold some very special memories for you.

Lots of love.

Mavis x

[mhnevillParticipant]

Hi John

Do hope radiotherapy helps the pain.

Like Tom, I had to leave off Zometer for a couple of months before AND after treatment. However, I now need further treatment and have agreed with Dental Consultant not to stop the infusions. I reckon it is doing me so much good that I'd rather risk necrosis than broken bones.

Hi Tom

Interested that your Consultant says Zometa not so effective after two years. I wonder how they know as there will only now be any of us who have been on it that long!

Best wishes to you both.

Mavis

[mhnevillParticipant]

Hi Babs

So glad to hear that things are going well for you. I'd echo what you say. There is life after diagnosis, in fact, I don't know about you, but many is the day I can't believe I have this horrible disease.

Here's to the future!

Love.

Mavis x

[mhnevillParticipant]

Hi Dai

Thinking of you and hoping and praying you can get back on drugs soon.

Love to you and Janet. Bet she could do that journey to the hospital in her sleep!

Mavis x

[mhnevillParticipant]

Hi David

Do hope November is a much better month for you. You always put a bright spin on things.

How did they diagnose your latest problems, did you have another scan?

Wonder why they keep changing your bisphosonates? I have been on Zometa infusions, four weekly, for over two years now and they certainly have done the trick preventing he stress fractures they were fearful of.

I love men who Cook Sunday dinners, Gordon cooks the best roast beef I have tasted.

Happy days!

Mavis x

[mhnevillParticipant]

Hi Sarah Jane

So glad your SCT did it's job. I do hope you have a very long remission and that maintenance works well for you with no side effects. One hopes that eventually they will find maintenance drugs for MM that work as well, and with as little side effects as the two maintenance drugs for breast cancer do. Well done for being ready to take part in the Trial.

Love and best wishes.

Mavis x

[mhnevillParticipant]

Hi Carol

I'm so pleased for you. I know just how it feels to finish CDT. It is marvellous as your appetite returns and your hair gets back to normal. Sorry you now have to anticipate SCT. As I am older I did not go down that route, I am mow 15 months into remission.

Love and best wishes for the next stage. Don't push yourself too hard.

Mavis x

[mhnevillParticipant]

Hi Dai

I think they are setting you up to test week-end provision in Nottingham.

It's strange because I was thinking of you on Thursday. I was in the Dental Hospital and there was a Notice saying Diff C was not killed off by hand gel but needed soap and water. I though, I hope everyone is being careful around Dai.

Do hope that all this doesn't delay the chemo.

Love and best wishes.

Mavis x

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