Hi Clara how disappointing to hear your dad wasnt given his results, you could do without that sort of mix up I am sure .Sorry but I am not up to speed with AL but I am sure you will get answers from others who do know Most of us with myeloma have weakened bones and it is standard treatment to give monthly infusions of drugs such as Parmidronate or Zometa to help These drugs also help to get rid of the excess calcium which can cause kidney problems The other benefit is pain relief, I have found it does help relieve bone painand I have been on monthly Parmidronate and now Zometa for almost 4 years now. In this country Revlimid can only be used when at least one other treatment has been used and either not worked or following relapse.Did you mean Thalidomide? I dont know of a drug called Thamilimide sorry.As your dads treatment gets under way you will find it easier to duscuss the various options with his doctors and the specialist nurses are great for finding info etc .Hope this helps a little best wishes and I hope your dads treatment goes more smoothly in future Bridget
Hi Elizabeth it was that clever Min that started this post I am so glad she did its lovely to hear about everyone !I am so pleased you still like your hat and even more pleased my sewing has held up!!Have a good weekend love Bridget x
Hi Sharon well if you do go there you will be in good company !! 5 sessions sounds promising , I hope they let you home soon afterwards . I have been impressed with the results of my rt , the pain isnt constant now and can disappear for a couple of days at a time , I can cope with that! There was an excellent piece on radio4 the other day( see I am old!!) discussing modern radiotherapy and how it is equally as important as chemo or surgery Apparently rt is now often used to obliterate tumours and the success rate is really good , in that they dont recur It is all to to with the doses being so minutely and accurately given in radiating doses, which minimises risk to healthy cells The most reassuring news for people like us with spinal tumours is the very high success rate using rt to eradicate spinal tumours as surgery would be too risky . I must admit until recently I thought of rt as being mainly for pain relief and didnt rate it in the overall scheme of treatment So chances are when they have finished zapping your pesky critter it wont come back !!I hope you have plenty of visitors to keep you from being too bored over the weekend , and to bring you nice things to eat too!! love Bridget x
Dear Sharon thank god you knew to insist but what a heck of a shock!! I was in the same position when they eventually diagnosed me and its so frustrating not being able to move independently , I feel for you. I remember them coming round and checking the reflexes in my legs every few hours as they couldnt understand how I had been walking around with 3 vertebrae gone completely As time has gone on I have learnt to listen to my instincts more and am more aware when there is something not right , you are obviously the same ! How long is your course of radiotherapy for? Hope they get it resolved quickly for you so you can get home very soon love Bridget x ps it wouldnt let me post at first because I forgot its not allowed to mention the very hot place bad people go to !!Haha!!
Hi everyone, great idea Min ! My name is Bridget I was diagnosed with mm in 2006 after 3 vertebrae disintegrated. I had a spinal reconstruction and am now known as metal micky!! I had an sct in 2007 which gave me 18 months partial remission. I was then on the Myeloma X Trial which gave only a short break This time round I was on velcade for 3 months but as it wasnt working I have now changed to Revlimid . Unfortunately Revlimid didnt work either and I am now waiting for radiotherapy to get rid of a tmour on my spine and then will have further treatment to get shot of the mm cellls I live near Luton with Jeff ( also a toyboy) ,we have 5 children and 4 grandchildren who all live close by. I am treated at UCH London and occasionally at my local hospital . I am a ferocious knitter these days and also watch too much tv and too long on my laptop Pass the baton to the next one Bridget x
Hi Colpot what a brilliant post , very encouraging for people like me who have just started on Revlimid. thankyou . Long may it continue perhaps you should go for a world record!! best wishes Bridget
Hi Gavin thank you for letting us know . In my experience you get very well looked after on these trials so fingers crossed it will be trouble free and you can have your sct and be free from major treatment for a long time . I have just started on Revlimid and the lovely dex !! A few unpleasant side-effects this week but I am hopeful it will settle down after this first cycle Take care and dont overdo things, rest when you need to love Bridget
Dear Gaye I am so glad you have got a date now , at least they can start to relieve your pain and hopefully it wont be too complicated. For most of the time now I dont have that awful pain , it does come back for a few hours at a time but its not constant and I can deal with it Havent seen any daffs yet but its definitely milder and brighter , at least spring will help to cheer us all up . I hope you can have a good weekend lots of love Bridget x
Hi Jen and Keith the disappearing veins are a problem for me too and in fact it is the one thing that can reduce me to tears! At my hospital they use PICC lines, these are a fine tube fed through a cannula in your elbow , up tp tour neck and then down to a major vein in the chest It is completely painless , being fitted and removed , only a small local anaesthetic is needed. The biggest advantage is there is no open area to worry about , it is completely covered with a dressing ,changed weekly. I have had 3 of them now and had very few problems, the odd blockage which is easily cleared .Blood can be taken from them too . It may be worth asking if your hospital uses them or perhaps plan to. love Bridget x
Thankyou for making me laugh out loud!! Hard to believe but even harder to keep a straight face Hope you have a good day love Bridget x
Dear Min I hope you enjoyed your birthday and now you are officially allowed to grow old disgracefully !! You can now wear outrageous hats, jump in puddles , talk to yourself and answer , in fact anything you fancy ! Of course the men in white coat may come after you !! As for men in white coats– Sacha could definitely charm me into feeling better , Nick Jordan far too dodgy I would prefer the younger tragic one from casualty whose name escapes , tall dark and brooding Petrenko is the funniest and scariest too! The rt has worked its magic for the most part , the pain isnt constant but seems to come back for a few hours then disappear for a couple of days Hopefully it will have gone completely soon Gaye I hope you had some luck in chasing yours up today If not threaten them with a protest march by the militant myelomas, I can just picture it now , all of us hobbling around with placards outside the hospital , wouldnt that be a site to see !! Guess who is on dex today ! love Bridget ( aka Rent an Anarchist!!!)x
Hi Keith really good to hear you and Velcade are getting on so well Long may it continue!! love Bridget
Hi Clara welcome to our merry band . At the moment you must be feeking so overwhelmed with it all but it does all become clearer. My advice would be not to google everything but take it one step at a time Myeloma is such an individual illness andthe descriptions of stages etc on the net are very often outdated now Newer treatments are emerging all the time and outcomes are improving all the time too . Four years ago I was diagnosed and told my illness was stage four , this terrified me when I read all the info on the net However I am still here and going strong despite major surgery , chemo and stem cell transplant or rather because of all those thingsTake it a step at a time , if you can talk to the specialist nurse they are very good at giving you realistic information , relevant to your mum.There are lots of lovely people on here who are only too glad to answer questions and support you and your parents so please ask away. Take care and my best wishes to you and your family Bridget
Hi everyone my diary was given to me by my specialist nurse perhaps yours may have some of their allocation love Bridget x
Hi Angie welcome from me too , you really have found the right place for answers and support .Even if your mum and dad arent up to reading up on myeloma yet they will be glad of your support As Min has said it does get easier to understand as treament gets going and the initial shock wears off. In the beginning it seems to take ages for treatment to get started but the medical teams are very thorough in getting all the necessary test results to be able to give your mum the best treatment.l Take care and I look forward to seeing your posts best wishes Bridget
