Myeloma

• Hi Eval, if you look up my wife’s story under johnbemussed you will see she experiences so much pain. She was on eventually on 60mgs morphine twice a day and extra where needed. 
  we seem to be in the same place in the trials,I take it you are on the trials? We are coming to 3/4s the way through the 3rd session.
• we have both struggled as my wife was very susceptible to taking pills and terrible sickness. She’s been living on ensure drinks. But the Dr decided to lower her morphine and bk it up with paracetamol. 
  within a few days her sickness,pill aversion and being able to start to eat again all got better.
• so please don’t lose heart as we secretly did and it rocked our whole being.
• oh and don’t think my wife didn’t have it to bad as she has,very but keep at it. John

Hi Eval

i just wanted to say that I had a lot of swelling and pain in my knees too. It sounds like yours is excruciating and I really feel for you. Mine did improve after the treatment had ended but I remember thinking that they would never be the same again. Things are so much better for me now 17 months later and I feel almost back to normal with just the occasional pains in my legs. I hope that the hospital changing your meds and pain relief has made things better for you. It’s such a hard journey but things will improve, hang in there.

Hi Alexandra, well, unless you’ve seen my update on my wife’s multi myeloma we are after 4mths of all the worse pain,distortion of bones and sickness we heard she is free of disease in both blood & marrow. Shocked and hard to take in and the trials carry on for a further 8mths to help the remission side be more successful.

We are still in shock and the effects of the pills are still hard for my wife to take but what a good story like yours where you believe that’s it just not working out,then WHAM!

Hi John

That’s such fantastic news to hear that your wife is free of disease, how amazing! It’s such a hard journey physically and emotionally but to hear that she has come through it and that you have supported her is wonderful. It’s really made my day to read such a positive story, please pass my best wishes on to your wife.

Many thanks for your Best Wishes Alexandraa. 
Hopefully others will see what changes can happen and although there’s an 8mth hill to climb I think we need that for life to stabilize and getting use to a remission is similar to being told you have multi myeloma in the first place.

But we are happier than we’ve been for a while so small steps to our goal.

obviously not forgetting the fabulous work provided by all those connected to her well-being. 

I was taken off thalidomide as it caused my legs and knees to swell, was really painful. Coming of the thalidomide helped.

Hi debjane, my wife Anita suffered terribly with the moving of bones which has changed the shape of her back so much that you would think she was born disabled. All this was due to myeloma and happened in weeks before treatment even began so none of in relates to the tablets she has to take. But yes she’s on the American trials drugs through I think it’s Leeds University.

Course,as I’ve said previously it’s one hell of a bad ride with constant sickness and not able to eat.

But after 4mths we have hit a good patch so we’re not complaining. Long may she be free of this dreadful cancer. The tablets and monthly test continue.

I hope that you show an equal good patch as well. It seems you have to try and try to you hit the spot of curing without a pain that’s unbearable.

lots of best wishes.

john & anita x