Hi Tanya glad to hear your dad isnt doing too bad Low platelets and blood counts are typical with these drugs and easily remedied so dont worry .I am so shocked they havent given him proper pain relief nobody should have to put up with painWhen I see my doctors pain relief is the first thing they ask about and others have the same treatment so please keep insisting Perhaps your dad is not telling them how bad it is , my mum never tells doctors how bad she feels, could you ring his specialist nurse to discuss it they are usually very good . I hope your daughter feels better soon. there seem to be a lot of tummy bugs around at the moment . love Bridget x
Hi David you have started something with this game!! My husband is now a total addict who is dtermined to get the maximum score !If only I had paid attention in geography lessons I might have a chance of beating him love Bridget x
Hi Clara I am so glad things have got off to a good start and I hope your dad continues to feel fighting fit for a long time . As long as he doesnt feel he has to keep going through the tired times and rests when he needs to he should do fine It must be a relief for you to see him doing so well love Bridget x
Hi Jet interesting topic I must admit its not something I am prepared to take a risk with Nothing I have read so far has convinced me that using herbal remedies alone could deal with cancer , if that were the case it would have been proved beyond doubt a long time ago . Vitamin supplements to deal with by-products of cancer have been useful for some but for me I am wary of taking anymore alien substances on top of all the toxins I need to take love Bridget
Hi Min congratulations you must be walking on air!! I have had to give a few presentations in my work so I know how scary it is , you should be very proud of yourself . I hope to get to an info day soon I could use some inspiration at the moment !!My neutrophils are rock bottom too and I have a blood test Monday to determine whether I can take the next course of rev .I hope Pter starts to feel better soon love Bridget x
Dear Gaye I am glad you have finished your rt now I hope you start to feel the benefit very soon . I have been feeling a bit blue myself lately and I am hoping the lighter days and spring weather will make us both feel happier . I hope you have a lovely pain free weekend love Bridget x
Hi Sandra thanks for making me giggle today !!From another oompah-loompah who also has the round face , awful pot belly and stumpy legs !! Shame we dont all live closer we could put on a very authentic production of the show !! Seriously I hope its not getting you down too much sometimes it depresses me more than others( usually when I try to wear a favourite item)Thanks again because I am now going to have the song on the brain all day love Bridget x
Hi girls this is certainly a hot topic and I agree bras are a painBut now that I am the size of a house it is actually just as uncomfortable to go without, oh for the days when my nickname was ironing-board!! It has added to the image of militant mmers marching in protest –bra-less and hobbling !! love Bridget x
Hi and welcome sorry you have had to join us but you have found the right place for info and support It sounds as if you have a good medical team looking after you which helps a lot if you have confidence in them It does get easier as begin treatment and get to know the ins and outs of various treatments but I remember how confused I was initially Have you sent for the info packs from mmuk they are very good .I willtry and answer some of your questions and I am sure others will too I was only on Velcade for a short time last year but you need to watch out for peripheral neuropathy in your feet and hands , velcade affects the nerves and can damage those in your feet and hands so tell your doctor straight away if you get any numbness or pain in your feet ,legs or hands , often they will lower the dose but the quicker you tell them the better so it doesnt become a long term problem Velcade also makes you feel very tired so try not to overdo things and rest when you need to . Dex is the bain of all our lives !!Well maybe not all but it is a nuisance for a lot of us because it diturbs your sleep patterns and can make you very ratty to those around you so warn your family its not you its the drugs It can be useful when you get a rush of energy from it though! I have been on monthly infusions of Parmodronate and now Zometa since being diagnosed , it helps reduce bone pain and removes any excess calcium from your bloodstream to protect your kidneysThere is also some evidence that when used with drugs like Vecade it can actually help beat the myeloma It will be a few months before you have your stem cell transplant if you have trawl through the posts on here there are lots from people who were writing whilt they were in hospital The procedure is very simple really but you can feel lousy for a few weeks afterwards and need to be careful about catching infections , lately more people seem to be getting a complete response or remissionafterwards so it is definitely worth it! I think you are right when you say you have a lot going for you so good luck and keep posting Bridget
Hi Eve I am glad you find this site helpful ,I know its a lifeline for me .You didnt say how long your partner has been diagnosed but if it wasnt long ago you are bound to still be in shock and trying to come to terms with such a life changing illness But it does get better , life may be different than before but nothing stays the same forever. It is a shame you havent been able to tell your daughters , they would be a support for you both , perhaps in time as you understand more about myeloma you will be able to tell them . Have you got a close friend you can confide in? We all need a friend at times like this Please use this site for advice or just to get things off your mind , we have all been thrugh all sorts of situations , patients and carers alike. Roll on spring the warmer weather makes everything seem better best wishes Bridget
Hi Ruth what an awful shock for you no wonder you feel frightened and alone .If I were you I would avoid searching the internet for information as a lot of whats out there is out of date and can be frightening .I agree with Jet the specialist nurses are great and very easy to talk to If you dont feel thats right you can ring the info line on this site , they are very helpful and will be able to answer your questions about treatment etc. It is very frightening to hear that someone you care for has an illness like myeloma but as your husband begins his treatment you will understand it more and you will also see him getting better too. To be diagnosed with myeloma at such a young age is awful but there are positives too , hopefully its been spotted before too much damage is done and being younger does mean your general fitness is likely to be better.New treatments are emerging all the time now so try and ignore the life expectancy figures if you can It is possible to get complete remission after a stem cell transplant , which is likely to be part of your husbands treatment Please dont feel you are being selfish its understable to be frightened but there are lots of lovely people on this site who will support you . Take care and please let us know how you are coping best wishes Bridget
Haha lets just settle for irreverent anarchists!! Bridget
Hi Gill sorry to hear Stephen is having a rough time . When I was on velcade the fatigue was a major side-effect, I wasnt able to stay on it for long so I dont know if it gets better over time Fluid retention was also a problem for me , I think it is the combination of dex and velcade Does Stephen take Ferusimide ? It would be worth getting hold of his nurse , perhaps they could lower the dose for a while Sorry I cant be more help but I hope Stephen feels better very soon love to you both Bridget x
Hi Nicki how lovely to hear that Sam is doing so well and your life is back on track Good luck with the move and I hope you have a wonderful time in Poland love to you both Bridget x
Hi Jon welcome to our merry little band , yes we are mostly merry ! Your head must still be spinning but its great you were able to get a fairly early diagnosis. In my experience, I was on the Myeloma X Trial , you get the very best of care whilst on a trial and hopefully you will sail through it without too many hiccups. Have you got your pain under control now? I was eventually diagnosed after a year of agony , it turned out 3 vertebrae had disintegrated completely .I had a spinal reconstruction and am now known as metal micky! I take mst morphine for pain relief which usually does the trick for me I hope you can keep your lovely positive attitude for a very long time and dont forget we are all on here for you if you need support Good luck Bridget
