Hi Paul glad you got hold of someone at last and I hope it gets sorted quickly for you love Bridget x

Hi Nicola sorry to hear Velcade didnt work for your dad but as Keith said you never can tell Its very possible that Revlimid will work for him even though Velcade didnt Hang in there hopefully he will start to improve with a new treatment plan Dont forget we are here if you need us love Bridget x

Dear Mavis so sad to hear you need to start treatment but hopefully CDT will knock the little blighter back !! I remember feeling exhausted and very weak after the first 2 cycles One bit of advice dont force yourself to do things because you feel you should be able to do them , rest when your body tells you . I didnt lose my hair either One of the…[Read more]

Hi Paul some hospitals have Macmillan advice centres based there pop in and see them If not ask your specialist nurse to refer you to Macmillan for help with benefits Someone will come and see you at home and go through it all with you . I think your GP could also refer you . Let us know how you get on . You will get backdated payments too which…[Read more]

Hi Paul I am sure you arent the only one to delay filling in those forms. I was like it too at first My advice is to get a Macmillan benefits advisor to help check your entitlement and fill in the forms with you If Macmillan arent avaialable try the hospital social worker Good luck love Bridget x

Hi Keith thankyou for the info but I did get a laptop , no patience at all !! In the end I got a decent one in the sale at PC World It was advertised at £520 before the sale and reduced to £310 Whilst I dont believe their pre-sdale price was that high I have seen the same one for over £400 so am quite pleased It does everything I need it to and I…[Read more]

Hi Chris great to hear things are going well Congratulations for your wedding, at least you should have some sunshine , you are so right it really helps to have something good to look forward to. Good luck wth the insurance company the older I get the more I think they are a bunch of crooks!! Stay well and happy Bridget

Hi Tom and Eve I feel the same as you both. I dont blame the consultant, her hands are tied , but as far as the drug companies go its all down to the root of all evil, money, im sure they will say it isnt, its all to do with the safety etc of the patient, but I say if the patient is well enough to recieve the drug then it should be there choice to…[Read more]

Hi All Just wanted to let you know Michael has been turned down for his last hope of treatment, he didnt fit the criteria for Pomalidomide ,although you would think having MM is criteria enough. It makes me so angry, it feels like we have taken a huge step backwards with treatment (after having a huge fight on our hands to obtain Velcade a few…[Read more]

Hi Tina tried to send you an email but it wouldnt let me

love
Sue

Dear Jo I am sorry your dad lost his fight against this horrible illness No wonder you are all in shock but stay strong and together you will get through it Remember all the good times , your dad will always be with in your memories Bridget

Thank you all for your lovely wishes and kind words Its at times like this that we appreciate good friends who understand, I am so thankful that I found this site way back when !! I am less shell shocked now and I keep thinking of random things which leave poor Jeff rather puzzled But on the whole I am being a bit of an ostrich and burying my…[Read more]

Dear Bridget I wasnt going to post today until I read your post, what can I say im so sorry, I cant imagine how you are feeling, but I know one man who does. We also went to clinic today, we were told Michael does not fit the criteria for the Pomalidomide trial, so no more treatment.She did offer high does Dex but Michael could not get his head…[Read more]

Well I had clinic today and it wasnt a pleasant experience to say the least Basically I have had all the myeloma treatments over the last five years and none has worked for any significant time The team at UCH have been looking for a trial but that is no longer an option due to the fact I am a non- secretor Its possible they may retry…[Read more]

Hi Amelie sorry to hear John didnt get a longer remission but quite a few people have said they found their second sct easier than the first one so try not to worry too much . I dont know why Thalidomide was chosen its something that his doctors would be able to tell you. I think you may be thinking of ice pops to suck whilst he is having his…[Read more]

Hi Terry welcome glad you found us. You were lucky they spotted your myeloma early before any damage was done Your doctors sound impressive and very cutting edge , you will be able to access new treatments as well This site is brilliant you wont find a more supportive group of people anywhere and its not all gloom and doom either we share laughs…[Read more]

Hi Dai what a bugger!! Rev and Dex have proved to get good results though and as you say the other advantage is freedom from hospital visits. I hope it does the trick but at least if you do need further treatment Carfilzomib would be an option and may be more readily available love Bridget x

Hi Andy welcome . Its sometimes funny when you find yourself doing mad things because of steroids!! There have been times when I found myself cleaning like a mad thing at 3 am !Like you I was diagnosed after about a year of back pain and they discovered 3 vertebrae had been destroyed completely After surgery to stabilise my spine with huge…[Read more]

Hi Mavis you arent alone in having senior moments I have them all the time!! My grandson is 11 and at the moment he tries to appear like a cool teenager half the time , the other half he is the little boy who takes teddies to bed!! Bless him They are under so much pressure to grow up quickly these days its such a shame they cant keep their…[Read more]

Hi Eve I must admit London isnt my favourite place either too busy and too noisy , perhaps 30 years ago I would have had fun but not now . I dont drive into London luckily Jeff doesnt mind so he drives as I cant manage the walking and stairs when going by train. Most weeks I am there at least once and every fourth week I go twice a week not my…[Read more]