Hi Jan

I do hope that you settle into the new drug regime and that it works to bring your PP readings down. Sympathise about the effect of the steroids. One thing I found though, is that it really helped my joint pain.

I waited to reply as I was seeing my Consultant today. My PP has just gone up by 1 to 10 in three months so no treatment…[Read more]

Dear Jennifer,

Welcome to this site. I am sure you will find it helpful. I certainly did in the early years of my diagnosis in 2010. You asked about staging of the disease. One thing I have learnt is, it doesn’t really matter. This is a very individual disease and everyone reacts differently to the treatment. I am so sorry your dad is r…[Read more]

Hi Jan and Michael

Thank you for taking the time to reply to my post. It is good to know that others are cheerfully coping with the Google’s this horrible MM throws at us.

I was diagnosed with Oesteonecrosis. I have to say that on this occasion the NHS has been marvellous to me. In less than a fortnight from my visit to the Dentist, I was s…[Read more]

Hi Jan and others

I have found your posts very helpful. I have been on Zometa from about 2012 – four weekly until three cycles ago when I ask my Consultant if I could come off. I had read it stays in the system and was finding the logistics of getting to hospital for the infusions more and more difficult. I had one break of three months so I…[Read more]

Hi all,
I have survived and am 7 weeks post transplant ;bald and not shaved for weeks but energy returning .Probably have bronj in two sockets in lower jaw but onwards and upwards ,bisphosphonate related osteonecrosis of the jaw .
Mike

Dear Paul,
I am taking curcumin as I recover from my second asct .
My research lead me to an article on cucurmin absorption;Journal of the american college of nutrition vol34;4 p 347 to 358; Beyond Yellow Curry ;assessing commercial curcumin absorption technologies by BRad J Douglass & D L Cloutare.2015
The conclusion was that the hydrophilic…[Read more]

Hi Helen,
Thanks for the information. I’m glad that Thalidomide is working so well for you like it did for me. At the moment my PP is settling around 10 so thankfully no recommendations for treatment yet. Have also persuaded them to let me reduce the Zometa infusions to eight weekly. I just don’t want to be tied to hospital appointments I’d…[Read more]

Dear Herma ,
I know from personal experience Chemo can effect the heart but usually only on a temporary basis (?six weeks?). Protein around the heart is very unlikely to be related to chemo or indeed myeloma but may due to a related condition called amyloidosis . Further information is available on this website but you should get further…[Read more]

Hi Helen
Happy New Year to you too. I was exhausted after Christmas having done two big services with help of crutches and perching stool!
Our lives have been made doubly difficult because Gordon isn’t at all well with heart failure and hand and shoulder pain which we have eventually found out is a boney spur putting pressure on a nerve in his n…[Read more]

Well there you go Nice has approved IRd after 2 treatments via the cancer drugs fund; six months too late for me but ive got my paraprotein down to 2.8 on Rd.
Had 5 teeth out prior to my second asct which is booked for next wednesday 17th .
Mike

Hi Ceri
Keep fighting for your mum. It’s the last thing you can do for her. Have you thought of involving the hospital Social Worker?
Lots of love.
Mavis xx

Dear Clover
I am so sorry to hear that this awful disease has taken your dear Dad after he gave it such a mighty battle.
I know it must be even more poignant to loose him at this time of year which is supposed to herald hope.
May you find comfort in many happy memories. Death never has the last word, love does.
Love to you and your family.
Mavis x

Hi Helen, Andy and everyone else out there!

A happy and peaceful Christmas.

We are so fortunate to still be here aren’t we. I always feel so grateful to all who took part in earlier Trials and to all the researchers.

I am still just on Zometa infusions. Wanted to come off them, but Dr agreed to 8 weekly instead of 4 weekly. He said this w…[Read more]

Hello Kelly
It’s not often I come on to Myeloma UK, as I lost my husband over 3 years ago, but Myeloma as come into my life again ,as a friend has just lost her husband with Myeloma ,so I looked into the site.

First you have to know about a Myeloma, a doctor might only see it once in his life time,so GP seldom pick it up, usually it’s discovered…[Read more]

hi all,
Change of plan ; my response to Rd has plateaued so I am having a further month of treatment but with less steroids prior to my second asct in january .Not exctly what i wanted but there seems less point in adding ixazomib at great expense . I am still very angry about the circumstances which prevented me getting triple therapy for free…[Read more]

Dear Susie
Not that I am aware of but still investigating .Unless in a trial or in an area where they ignore nice maintenance seems unavailable and the long term cost make this very unlikely despite evidence from a uk trial myeloma X1 . This has to change but how?
Michael

Dear Ann, ,Teresa
I would be grateful if you could let me know the location of your hospitals ( Adrian in southampton ?jan t in northern ireland ) where you have received triple therapy ird under the cup scheme.I need to quote this intially to my consultants .
Dear Ann I am also interested in the possibility of your husband been given…[Read more]

Hi Yvonne ,
I can understand your concern having had smouldering myeloma myself at presentation in 2008 . I am sure i have written many posts on this in the past (possibly as docmike?).
Very briefly 10% of smoulderers never progress to myeloma and if you go 10 years as a smoulderer you risks drop down to mgus levels which is 2% per year. The…[Read more]