Hi Caroline
I have been where you are now and its not pleasant. As Bridget says there are other forms of pain killers and getting the dose right is not easy.
I am sure once he is re- assessed for a more appropriate pain killer life will improve. Meanwhile keep your sanity intact with us whenever you need to
Love Min

Hi myelomawife that sounds horrible , it must be awful to see your husband like that and not be able to help Is there no other painkiller? I have never had oxycotin but I do have mst slow release tablets which work really well plus severidin for breakthrough pain If it were me I would ring the specialist nurse to talk it over with her and once…[Read more]

Keith……..
What can I say been on a crappy holiday, wish I had stayed home and read your post instead. What brilliant good news
So pleased the velcade has worked for you. Its is remarkable how some of these medications work for some and not for others. Will your transplant be in the Freeman? It has excellent facilities, Lucky you to see…[Read more]

Haha so good to know we are all totally BONKERS!!!…[Read more]

Dear Gill,
What can I say to ease the heartache I understand you will be going through. I have always thought of your Stephen and my Peter as being in the same boat, similar age bone damage etc.
If it is of any help at all, Velcade did not touch the sides of Peters mm, giving him the added problems of Pulmonary embolisms, and therefore…[Read more]

Hi Gill I replied about half hour ago but it has vanished , the first time those gremlins got me!! Blooming laptop fell asleep before I did last night but I am always up till at least 2 and often later The annoying thing is the pn in my feet gets me up about 6 am whether I want to or not . I do hope you can get some rest today and it looks like…[Read more]

Dear Gill I had to read your post 3 times before it sank in my god no wonder you are in pieces! I have been told no more sct either but no-one has suggested giving up hence the revlimid Surely we just carry on with the current and most suitable drug and there must be new trials coming up . Steven and I are the same age and it is so incredible to…[Read more]

Hi Chris these chest infections can be a pain to get rid of ! Arent daughters lovely and its always nice when they come to keep you company, not too sure how I always end up cooking thought!! No I am not in remission When I relapsed and was on Velcade for 3 months but it didnt work So now its fingers crossed Revlimid can do the trick , I am just…[Read more]

Hi Andy we we are all whippersnappers really!! As Debs said the under 50 site is great and I think you will find it helpful but I will look out for anymore younguns ! love Bridget

Hi Chris sorry to hear you havent been well , chest infections are really horrible I am struggling with one at the moment!! Hopefully you will be back on top form soon How are you getting on with the lenilimide? I must admit I am struggling with Revlimid , nothing too major just dont feel great most of the time ,mind you I am not falling asleep so…[Read more]

Hi Andy I think you might be right there , an under 30 group would be a very exclusive one !! I should think you were pretty peed off when they gave you the diagnosis, how old were you?!! To be honest I was 51 and still thought I was too young to have myeloma Take care Bridget

Hi Sarah I am on weekly GSF to boostr my neutrophils whilst on Rev . I do occasionally get pain but for the most part its not a problem Hope Frank doesnt have to put up with it for too long . Is there something else he could have or perhaps a lower dose love Bridget x

Hi Eve I wondered if you have tried Maxi-Joule to help get extra calories into Slim? It is a white powder , tasteless which you sprinkle onto or into foods and it bulks up the calorie count It can be put on anything from mashed potatoes , scrambled eggs , in fact just about anything ! I used to have to use it for my very fussy daughter who has…[Read more]

Hi Keith good news that you have a possible date for your sct. One good thing in using your frozen cells is you wont have to go through the harvest process again , it can be a real pain second time around ! It wont be long before you are feeling tip -top just make sure you dont overdo it in th early days You have such a strong positive attitude to…[Read more]

Hi Debs you are certainly not alone!As for the weight I have been size 10 -12 for years even into my fifties but now I am a large 14 and so peed off with !! Its now getting to the point where I cant face going out Trouble is its so difficult to get any excercise as my back causes problems and lately I have totally lost my get up and go!! Moan over…[Read more]

Hi Dai there was a post on here regarding the sub cutaneous injections for velcade Sorry I just cant remember who it was , possibly Keith If I remember he had asked also and was told it is not being used here Hopefully Keith or whoever it was ? will see your post and answer Hope you are doing ok love Bridget x

Hi Eve you have certaily made me think I need to think about my own situation . I was married and divorced very young but Jeff and I have been togetther for 28 years now , like you it has never bothered us and we are as married as any couple can be . I hadnt realised how difficult it could be for him when I shuffle off my mortal coil So now the…[Read more]

Dear Mary and Theresa it so sad to hear things havent worked out for your dad , my heart goes out to you .I am glad you felt able to ket us know and we are all here for you Your dad must be a real fighter and having such a lovely family must make it easier , you girls have been brilliant and if you were mine I would be bursting with pride But…[Read more]

Hi Debs I dont get sinus problems as such but every time I am on treatment I do get the symptoms of a cold , permanent snotty nose and constantly need to blow my nose. I suppose this could lead to sinus problems if you are prone to it Hope she can get some relief though its a horrible pain love Bridget x