Hi Bridget

I'm still routing for you!!! Sorry you had such a bad experience. It does seem daft what floors us, isn't it.

Maybe your body is saying it wants a partial rest from all this toxic stuff. It sounds, by what you wrote that you are still on steroids. Whatever, I hope it is enough to keep anything more sinister at bay. Hope the…[Read more]

Hi Mari

Sorry to hear Steve has taken a dive. Glad he can be a bit philosophical about it. Folk on here seem to do well on velcade. I met one of the "Velcade Three" ladies (your name sake – Marie!) on am ambulance to Leeds last year. How grateful we need to be to those who fought the Authorities to make NHS agree to pay for it. And, to…[Read more]

Hi Sue and Michael

So sorry the Trial hasn't worked for you – you will have had such high hopes. I know you won't give up and I have read that refractory patients often respond to drugs that have worked for them earlier in their treatment. Has that been suggested. It maybe that your local Consultant with come up with something, but if not,…[Read more]

Hi Christine

Sorry to have to welcome you to this elite club!! Glad others have been able to answer your specific questions. One thing I have learnt from this site is to concentrate on what you can do, not what you can't. Now you have been diagnosed and are being treated, I'm sure that, like most of us, you will eventually find you can do…[Read more]

Hi Eve
I hope you have been informed about having teeth out whilst on Zometa / dont want to scare you but its best to check up as its bad for the jaw (or so am told)

And yep after what you have gone through the Little bits left are nothing you both will do it Easy Peasy (as my big brother says)

Enjoy the week end

Love and Hugs

Tom…[Read more]

Hi Everyone
I have a word,that I think is a good thing on this site the word is

OPENNESS Leaving ESS
on looking at the word it looks if it is spelt wrong,may be it,s because its a word not used very often.Love Eve

Hi Sue
Do not give up,you said your self you both have been in this position before not just once,so I would agree with Bridget,Ask for second opinion.
I know it is Michael and your decision,but he would not be here today if he was not a fighter.
I wish you well what ever you both decide Love Eve

Hi Sue and Michael so sorry your platelets couldnt get back to safe levels . I hope your doctors can come up with another treatment plan very soon It goes against the grain to be told there is no futher treatment when you have gone along with all the treatment so far If your doctor cant see any other way perhaps it would be a good time to ask for…[Read more]

Thank you everyone for your good wishers.
had last Velcade today,so BMB next blood test and Zometa all before Christmas,and one tooth to be removed along the way,sounds a lot but it,s less than we have been doing.
No marathons yet Dai,sleeping for England in the day awake all night,normality will be a bonus,what,s normal:-P I think I have…[Read more]

Hi mari
So sorry to hear Steve, back on the roller coaster it is funny when you hit it again when Slim had his CTD and we went to see consultant,and he told us it had not worked in fact got worse we were both very calm,strange feeling,may be you get past the tears and anger first time you are told.

Velcade!!! its worked for Slim from 80% in…[Read more]

Hi Christine
My name is Eve and i am a carer for my husband,first let me welcome you to your journey,and to answer your question,yes there are lots of people ahead of you on this journey.
As you must know by now people react different to different chemo and also people have different damage to bones.

my husband had 2 vertebra cracked plus…[Read more]

Hi Jo, well a mulled anything is good for Xmas as long as it has alcohol in it 😀

Eve I also have as I put it sailed through my treatment had 5 cycles of CDT then SCT now on Zometa every four weeks and should (should) be treatment free after the 22nDecemberr8-) .

Hope your all well battened down as the wind (not mine) is getting pretty…[Read more]

Hi Christine

Welcome to the site but am sorry you had to join:-(

I cant add to the collavertebraabra as i am fortunate enough not to hsuffererfere that. Just wanted to welcome you into the site and wish you luck 😀 I am over two years post SCT and doing great so keep strong on the road to remission.

Love and hugs

Tom "Onwards and…[Read more]

Thank You Mavis, yes its a great time and am still dong great 🙂 and yep we are looking to many many more years of celebration's

Love Tom xxx

Hi Everyone
It is lovely news at the moment my glass is half full!!!.
Slims been on zometa since February,the last six months every three weeks instead of four,he has not had many side effects from either CTD or Velcade.

This Christmas has to be better than the last,and this is the ,wonderful news he might just be able to sleep that is the…[Read more]

Hi Belles

Great news about your Mum. Here's to a good Christmas and New Year.

Best wishes.

Mavis

Many happy returns Tom!!

Here's to many more years of celebration.

Best wishes.

Mavis

Hi Eve

How good to hear some good news re Slim after such a long, difficult time. I do hope this time leads to a good major treatment holiday!!!

I went onto Zometa three months ago and apart from the shivers the first cycle I have felt really well on it.

Have a great Christmas the two of you.

Mavis

Hi Tom
never had zometa because of the dodgy kidneys have had promidrinate my celebration drink today was mulled ginger wine getting in the christmas spirit:-P cheers to everyone

Love Joxx>:-)