[mhnevillParticipant]

Hi Christine

Didn’t know Zometa could be given in tablet form. I shall follow that possibility up. I currently am in my third year of four weekly infusions of Zometa. It is the only treatment I am on at present and I gladly go as it has kept me free of broken bones which was a real risk.

I had previously taken tablets – Bonefos for over a year, but then NICE said Zometa was more effective AND seemed to have additional anti MM properties.

Look forward to hearing how you get on.

Love.

Mavis x

[mhnevillParticipant]

Hi Colin

Think the thing with grapefruit is if you are on statins. I must say I miss them!

Best wishes.

Mavis

[mhnevillParticipant]

Hi Susie

I can understand you feeling low. I think your Consultant was probably comparing your regime with mor drastic chemotherapy which is in another league again, BUT, HE/ isn’t the one on the RDC!

Hopefully things will get better for you and it could well have been the addition of the Bonefos that made you feel worse.

I was on CDT, but the only way I could cope with all the tablets, different number and type each day, was to make a chart. I did loose my Sense of taste of certain foods and did get shingles once and a week of sickness, BUT, having said that, following six regimes of tablets, I have been in remission for over two years with no SCT. So it was certainly worth it.

It’s not an easy ride but hang in there. If the side effects get too bad do go back, don’t grin and bear it! They can always adjust your dose or give you a break.

Keep posting if you are still fed up.

Lots of love.

Mavis x

[mhnevillParticipant]

Hi

I thought I had answered your post. Sorry, must have just been in my head.

You didn’t say how old your aunt was, but I am guessing she is a good age. If so, I can respect her not wanting treatment which may well make her feel worse for a good while before she feels better.

Maybe you could just persuade her to have monthly infusions to strengthen her bones, if it is offered to her, in view of her having already having had one distressing break?

I think ther would certainly come a time, should I live so long, when I too refused further drugs. I am 69 and currently in remission.

Best wishes to you and auntie.

Mavis x

[mhnevillParticipant]

Hi Martin

I am saying I think Zometa is very good. At first I used to be on tablets, but then research showed that infusions were more effective in preventing further bone damage AND appeared to have an anti-myeloma bonus. Originally they were only given for two years, but they now keep you on them because they are effective. As I said, I have been on them three years and although my Consultant was very worried over two years ago, before I started CDT, that I could have a broken bone at any time, I haven’t had one.

The only side affect I had was a feverish spell, a bit like flu, the first time I had it. It is a bit of a nuisance going to hospital every four weeks, but the infusion itself only takes twenty minutes and I am usually in and out within an hour and a half.

Hope that helps.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Robert

Just realised that obviously no one could help. Which is unusual. What do you take these drugs/supplements for?

Best wishes to you.

Mavis

[mhnevillParticipant]

Hi Andy

Congratulations from me too! So glad that at last they have found something to bring those numbers down.

Many more years for you and Steph. Thank you for all you encouragements.

Go well.

Mavis

[mhnevillParticipant]

Hi Chris

Sorry you have had to join us. Like so many of us your MM was picked up because of bone pain/damage. The weeks on chemo pass, but continue to watch out for infections. If your temperature is over 38 degrees do contact the hospital.

Do keep popping in and ask any questions. There is always someone who can help.

All best wishes.

Mavis

[mhnevillParticipant]

Hi Cupcake

I’m sure you will be one of those who does well. Being young seems to help.

All very best wishes.

Mavis x

[mhnevillParticipant]

Hi Eve,

Yes, good to see you posting still. Like you I often think of lost friends all who helped me in my early days. Don’t know if you watched the new awareness video. I find it very depressing. Glad it wasn’t the first thing I read on here.

Take care. You are special!

Love Mavis x

• This reply was modified 10 years, 1 month ago by  mhnevill.

[mhnevillParticipant]

Hi Both of you newbies

Be encouraged. The treatment does work even if it feels tough at times. Just do watch out for infections. I got shingles and didn’t recognise it straight away so was not treated as soon as I might have bee. I have now been in remission for two years. I am full of lessions, but breaks which I put down to the regular infusions of Zometa.

Keep cheerful and do what you can while you can!

Best wishes.

Mavis

[mhnevillParticipant]

I’m also sorry to hear you dad has lost his battle against MM. I am glad you were able to be with him right near the end. I do hope his funeral will be a celebration of his life.

Love Mavis x

[mhnevillParticipant]

Done. Good lunch! Mavis

[mhnevillParticipant]

Hi Izzie

Someone else not sleeping! And I can’t even blame it on Dex! Like Andy, I find the balance between pain killers and feeling zonked during the day, and then awake at night, a hard one to find.

I am so pleased to hear the SCT did its magic for you. It is funny, some Consultants don’t like to use the word “remission”, but that must be what you are in! Long may it last.

Do take your holiday. It is important to do these things while you can.

I couldn’t get insurance, but know plenty of others have.

All very best wishes.

Mavis

[mhnevillParticipant]

Hi Stu

Sorry to have to welcome you here, especially as you are so young. However, as has lready been said, if your early treatment hits the MM hard before any bone or organ damage you stand a good chance of a full remission following treatment. Do you know what the long term treatment plan is for you.

Don’t be downhearted. I can tell you, the MM story is progressing so fast. Things are so much more hopeful than when I was diagnosed 4 years ago and there are more treatments in the pipeline.

Who knows, there might be a cure for MM in your lifetime.

All best wishes.

Mavis

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