Hi Marian I can see you have already been given lots of good advice and I cant add much except to say it will all make sense soon Far better they take their time getting all the right information to treat your dad so that his treatment will be just right for him and worth the wait Good luck to your dad and dont forget we are all here when you need us love Bridget
Hi Fi sorry you are in the position of needing to join us but welcome Myeloma is such an individual illness it would be nearly impossible to guess whats going on with your dad as it needs the whole range of results rather than just paraprotein There is an excellent helpline on this site where medically trained people will be able to give you accurate info and they really are so helpful The other person you could contact is your dads specialist nurse , they are ususally easier to get hold of and have time for families as well as patients . I dont think they do stage now or dont choose to maybe If I remember right though Stage 1 was rise in paraprotein with no other signs or symptoms Possibly Stage 2 was paraprotein levels plus evidence of anaemaia nd or bone damage Stage 3 was raised paraprotein with sinificant bone damage, and involvement of other organs eg kidneys Check out the info pages on here as I have just tried to rememver off the top of my head So whilst your dads pp levels may have plateaud if there are no other significant areas needing treatment it may not be as bad as it seems Has he had a recent bone marrow biopsy or mri scan ? These tests help give a complete picture of whats going on, they may give him a break from treatment if he doesnt need any urgently to allow his body to recover from the chemo Try and get hold of the nurse and do give the helpline a ring You will get lots of support from all the lovely people on here who will help if they can Please let us know how you get on Best wishes Bridget
Hi Roz thankyou I do feel much more positive that was just one of those nights when the pain got too much and ended up in dark thoughts I am sure we all have those nights !! Mri today and hopefully have results by the end of the week Mind you the pain has been gone since I took my steroid dose so maybe it wont come back! I hope you have a good day its sunny here already which always helps to feel more cheerful doesnt it Take care love Bridget x
Morning Eve away with the blubells sounds good to me !!Cant think of anywhere nicer in fact As for the offense dont worry we have all done it I am sure and it was probably a minor thing How was Slim last night? Are you able to get any rest? Try and take a little time to recharge your batteries away from the hospital its exhausting visiting anyone let alone your loved one , my daughter has cystic fibrosis and after years of visiting I know feel exhausted after walking in the door!!Hope you and Slim both have a good day love Bridget x
Hi Jean nothing wrong with being a nutcase !! sorry poor humour sounds like counselling was really helpful for you Myeloma affects so many people not just the patient , my poor mum is not the same person since I got mm and she worries so much it affects her health too Snap I have an mri tomorrow too , I hate them !!Pain has disappeared since yesterday when I had my steroids so am waiting to see if it comes back when they wear off love Bridget x
Hi Min I know what you mean individually the side-effects sometimes seem not worth a mention but as a total they dont make for a happy life. Peter seems to have been very unlucky as far as his diarrhoea , that must be so depressing. I am at the point where the endless chemo in one form or another can get me down , in almost 5 years I have only been treatment free for 18 months, I am not sure how much more my system can take to be honest But then again we are lucky there is treatment for us so I kick myself when I sart to think like that!! I am impressed with you decorating ,its ages since I did In fact its 6 years ,when Jeff had his mid-life crisis and left me for a floozie I decorated the whole house in 3 weeks!! How I wish I had that energy now !!Dont overdo it though , myeloma must be taking its toll on you too so be kind to yourself and do what you enjoy as well love Bridget x
Hi Kathlean and Jean no wonder you are tired and on edge I really do think its easier being the one with mm , husbands and wives are the ones who shoulder the burden .I am about to make a sexist remark so all males please close your eyes!! I think as wives and mothers we are used to being in control of our loved illnesses I am sure you know what I mean , we buy the medicines , make appointments and cook nice things to eat So when something like myeloma comes along it must make you feel more helpless and anxious However I for one could not manage without Jeff , not because he does any of those things very often but because he is by my side when I need him and I am sure your husbands feel the same . I do think you should try and make time for yourselves though , have a few treats , shopping a hairdo or a night out with friends or family , you are just as important love Bridgetx apoligies for the sexist belief by the way
Hi Min yes I agree Revlimid makes life very unpredictable doesnt it !!. I cant say its the easiest of drugs to live with and initially I thought it would be less evil than the others. Has Peter got a cough? I think its all the extra musus being produce rather than infection biut it is turning into a really nasty cough which has me gasping for breath , mind you 2 lots of anti-biotics havent helped so I will just have to live with it Hope you have been able to enjoy your garden in the sunshine love Bridget x
Morning Dai how true tis is !!There is nothing better than listyening to Howling Wolf or Muddy Water when you are fed up and realise we aint got it so bad!! As for Leonard Cohen thats for the seriously depressed and works just as well love Bridget
Hi Angelina poor John is really having a rotten time but as you say he is in the best place at the moment. I didnt have any diarrhoea when on Velcade , my problem was severe constipation. It was explained to me that velcade affects the nerve endings in the bowel and intestines in the same way it affects fingers and toes, it sounds as if John has been severely affected by it. I did have some peripheral neuropathy whilst on velcade but the effects of that went completely within 3 months of my last dose From what I have read and been told peripheral neuropathy caused by velcade is more likely to be temporary wheras with thalidomide it is likely to be permanent Perhaps they will switch John to Revlimid as his side-effects are so severe it does seem velcade is no good for him. Hope you get a good nights sleep , you must be shattered love Bridget x
Hi Angelina thankyou for your caring words. I phoned my nurse today and she is going to make sure the mri report is seen this week and will phone me on Friday bless her!! She has also suggested Fentanyl patches for the pain. But its very strange I have had no back ache this afternoon and evening , thank god,all I can think is the weekly steroid dose I took this morning has reduced some inflamation It will be interesting to see if it comes back in a few days , feel a bit silly if it doesnt though!! Not worrying as much but very puzzled at least I havent got long to wait for the mri results love Bridget x
Thankyou everyone your support means such a lot. Wobbly moment over but I am definitely going to ring my nurse tomorrow as this pain is more than can be blamed on dusting unfotunately !! lots of love Bridget x
Hi Dai good luck for tomorrow . I didnt find velcade too bad at all really , no sickness or nausea but constipation was a bit of a problem, best to take laxatives early on love Bridget x
Dear Gaye yes housework is a perilous business , perhaps its best avoided if only sunshine didnt show all the dust up!! I am less panicked this morning but will definitely ring and tell them to check my mri results sooner rather than later, the pain is exactly like the original which led to diagnosis so I need to know . I am so sorry to hear you are still suffering you must be exhausted with it I am crossing fingers and toes for your surgeon to find a solution very quickly Operations are the last thing you want but when you are in that much pain for a long time its worth a try lots of love Bridget x
Hi Min good morning the laptop decided to go to sleep last night so I didnt see your reply You are right morning things dont seem so scary but I do need to ring tomorrow as this pain is deinitely more than strain, not much point today Thankyou Min for being there just what I needed someone to point outthe obvious which you cant see yourself in the middle of the night!!.I hope you are having a good weekend and Peter is not feeling too bad love Bridget x
