Hi Chris

I would really recommend a scooter. For me they have made the difference to always having to sit in the car while my husband took the grandchildren, or the dog, places, and being able to join in.

My first scooter is a Pride go go elite plus and it folds down into the car. (Approx £550.) I have also taken it to Luxembourg, by plane,…[Read more]

Hi John

As I would say to Chris, do read everything on the Web site about MM. Knowledge is power if your Consultant starts to talk options with you. Also, it helps to know what questions to ask.

By the way, MUK issues a free Myeloma Diary to plot your MM journey. I found it very useful when I was starting out. You could no doubt ring for…[Read more]

Hi Susie,

Great news about the pp drop. My husband Phil has his zometa infusion over 20 minutes instead of 15 as we read somewhere (it may have been on this forum) that the side effects of zometa are reduced if the infusion is done more slowly. Phil just asks the nurse each month to do this and they set the drip accordingly. Phil has been on…[Read more]

Hi Susie

That’s good news about your PP readings. That is a really good fall in the right direction. Let’s hope the reduced dose of the chemo drug will reduce side effects.

I don’t remember anyone on here complaining of long term effects of Zometa infusions. As I have said, I had shivery episode after first infusion, but since then have been…[Read more]

Hi Susie

You ask about Zometa. I suppose the question is, have you already got MM bone involvement? Usually shown by full body X-rays. If you have the sooner you start to take Zometa the better. As I have said in another post, I have been on it for about three years and it has prevented any breaks which my Consultant feared as my skeleton is…[Read more]

Hi Julie

I also had metallic taste on CDT. That and thinning hair were worst things. I used to crave salt and vinegar monster munchies as they cut through the taste buds!! The two compensations were ….. I. I got into remission and still am after 2 years, and. 2. I lost weight!

Good luck as you travel on this MM journey.

Mavis x

Hi Denise

I echo what Stanley says. Encourage your husband with the end result. I had six regimes of CDT. And have now been in remission over two years so it was certainly worth it.

Best wishes to you both.

Mavis

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…[Read more]

Hi Colin

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

Best wishes.

Mavis

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…[Read more]

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…[Read more]

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…[Read more]

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

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

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

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

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

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…[Read more]

Hi Rebecca,

That is interesting, I am not sure if my husband Phil’s vitamin D levels are still being tested but that was what lead to his initial diagnosis. He was diagnosed with low vitamin D levels and it was only when those levels did not improve and the pain (that we now know was bone damage) got worse that further tests were done and MM was…[Read more]

Hi Newbies

As a very oldie on here may I suggest instead of joining on some ones post,you start your own post,telling people who you are,what hospital you go to and what treatment you are having,plus of course any problems. This will help people to help you in person!!!!

When I first came on here,some one posted. WHO THE HELL ARE YOU!!!!,I…[Read more]