Hi Keith,

So pleased to hear your great news. Long may your remission last.

Best wishes.

Mavis

Hi Rachel

So sorry to hear how poorly your a Dad is and that you have had such problems getting information from your Consultant. It seems that now the priority is to make sure your adad is as pain free as possible. Is there a pain specialist nurse you could talk to. Also, is the. Myeloma Nurse Specialist who could give you support.

Lots of…[Read more]

Hi Nick

Glad to hear you have got you pp level down. The side effects will wear off in time.

Very best wishes.

Mavis

Hi Marge

well I have been on the Velcad for 5 months now, it stopped working on month three so i have had Cyclophosamide to the mix side effects ?? am tired and weary more so as the other one was added,apart from that Not much else as yet, to be fair its ben kind to me 🙂

Good Luck with it

Tom Onwards and Upwards xx

Hi Deborah

I had mine in 2009, got four years out of it and that was great, yes I was bloomin cold in the room should have taken my throw in 🙂

Mouth wash now I used bottles of it every time i went to the loo, walked past it thought about the loo I mouth washed (they will give you more lol) , cant emphasise enough to use moth wash as often as…[Read more]

Hi Dawn

Sorry you had to join the forum but as said before you are in the right place for advice, info and friendship. My husband was diagnosed in September 2006 with smouldering myeloma. Like you it was discovered by chance. We had 7 years with only treatment being
Zometa infusion to strengthen bones. He had this for about 18 months then went…[Read more]

Dear Susie,
Ive had several mri s .noisy and cramped .SO put on the earphones ,listen to the canned music .CLOSE YOUR EYES and imagine you are on a beach drinking your favorite cocktail and are indeed falling asleep ,focussing on keeping as still as possible(dead lions;the childrens game?????)
Mike

Damn predictive txt. Should read I’m there for Frank when he needs me

Hi James,

I was unable to attend my husband Phil’s last appointment with the consultant and Phil asked if the doctor would mind if he taped the converstaion as normally with both of us there one of us will remember what the other one forgets. The doctor did not mind at all so it may be worth asking. Phil used a device on his phone to record the…[Read more]

Mike damn predictive text. My spelling isn’t as bad as above
Jean

Hi Mike

Long long May tour remission continue. My husband smouldered from 2006 and had SCT March 2013. We were at co sultNt today said his protein was not dectable all bloods were god and to go away as he could not find anything wrong with him. Frank doesn’t come onto the site but when I read your response to Rebecca about drinking g the water…[Read more]

Hi Mike

We come from the south east coast,called Deal,you can see France on a clear day.
Slim used to have treatment in Canterbury,but was refused any more treatment at Christmas,Faith Davies agreed to treat him,we usually hit the rush hour going as clinics are in the morning,always the odd accident,it’s M20M26M25.then 8 miles to Sutton ,it…[Read more]

Hi Fiona

I also hate the word carer. I’m not there for Frank when he needs me, just like he’s there when I need him and I certainly do NOT consider him as my carer. I agree “family” might be. Better option

Best wishes
Jean

Hi Jane

Welcome back,you have been through the wars,battling away,so glad you made it,to tell us about it.

Let’s hope this is now your time!!! Go out there and enjoy every minute,the experience does give you a different out look on life.

Ours is being here each year to smell the blue bells,heaven on earth that smell.Eve

Hi Sandra

Just to say welcome

As you know your condition is rarer than Myeloma! I believe 600 cases a year,I would go back in to Related Conditions,you should find a few in there with Amyloids in the heart,they one I am thinking of is an Ozzy who lives with this condition who also travels,so might be worth a search.

Good luck on your journey,my…[Read more]

Hi Mike and welcome

I think may be what you do not realise is your good news of lasting seven years,if you look at statistics when you are a new MM it’s depressing,and some one like you comes along and says 7 years,you give the newbies so much hope. The waiting room is so small at the Marsden,bit like sardines in a tin,you cannot help but talk…[Read more]

Hi Denise and Carol

It’s a sad fact this disease has a massive impact on all family members,most people know there is something wrong but when it’s diagnosed it comes as an awful shock,I think it’s because there are so many different symptoms,either bad backs,or broken bones,there are only 3000 cases a year in this country,then you get the…[Read more]

Yes there is a lot of nonsense out there regarding alternative shall we say trends however my own experience regarding complimentary medicine has been successful, firstly after the birth of my son in the 80s I came down with quite bad hayfever tried all the usual tablets and so forth whilst they where good the effects didn’t last and left me…[Read more]

Hi James

They like you to be 12 months clear and to have had a good response .nice guide lines is it’s allowed if you have had a good response .

Revilimid they usually use until it stops working.
Pomilidomide is the latest one coming out in trials.

When he says chemo!!! Is he talking just cyclophosphamide ????

You can go into trials on the…[Read more]