Dear Min bless you , it really helps to know Peter is feeling better . I have stopped feeling sorry for myself now , till the next time !! I dont have the runs but my tummy isnt right , I think I read before that Peter is on Lanzoperale so am I Interesting that Zometa has made a difference to the water retention , I realised mine has been forgotten and well overdue perhaps that explains why I have been feeling lousy, I will be straight on that on Monday !It made feel less anxious when you said Peter had sweated on Thalidomide though as I was getting worried it was a deep infection, I can put that one to the back of my mind too .The runny nose drives me nuts and I realised it always does it at mealtimes too , very odd!! Thakyou for geeing me up Min it really helps I hope you and Peter have a good weekend and the weather lets up a bit love Bridget x
Hi Chris I am glad to hear you are doing well after your transplant A trip to Australia sounds wonderful at this time of year , I bet your daughters were happy you made it Do you have grandchildren as well? I am not sure my tale will be much use as everyone of us is different but here goes— I was diagnosed in 2006 after almost a year of excruciating back pain On diagnosis they dicovered I had lost 3 vertebrae and had a large mass attached to my ribs and lung as well I had surgical reconstruction on my spine which was successful , although it does have painful consequences , but I am able to get about and very grateful I didnt end up in a wheelchair! I had my sct in 2007 and was lucky enough to have around 18 months without needding treatment Then another tumour appeared on my spine and I went on the Myeloma X Trial with a chance of a second transplant It was pretty gruelling as I had pneumonia and difficulty producing any more stem cells due to all the treatments I had had In the end I wasnt picked for a transplant and had oral meds instead After 3 months the beast was back so Velcade was tried for 3 months , unfortunately this didnt work and I have now begun on Revlimid. Apparently the first couple of courses can be a pain but I have been assured it should settle down after that , fingers crossed There are quite a few people on here on Revlimid and it does seem to be fairly well tolerated Good luck I hope you dont get any teething problems and keep us posted how you are doing love Bridget
Hi Min what a pain these neutrophils are I am having the same problem!! Is Peter on the GSF injections ? I have been told its likely I will need one or two a week to keep my neutrophils up. what joy !! I really hope you can get some sun soon love Bridget
Great news Min heres to many happy hours doing all the things you want to do !! love Bridget x
Dear Dai I am so sorry to hear you have lost your dog Its hard to say goodbye to them like that , our 16yr old mongrel put to sleep a few years ago , as you say it happens so quickly. People who dont have dogs in their lives often cant see what a big gap they leave , just the same as any family member . love to you both Bridget x
Hi Sarah its always scary to be told you need to start treatment and at first all the information on side-effects etc is just too much to handle .Please tell your mum to take it one step at a time , life will be different and sometimes its a struggle but it does get better as you get used to the treatments and find what works best for you Its difficult to guess what course someone elses treament path may be as it is a very individual illness . The doctors will come up with a plan to meet your mums needs specifically In a lot of cases it starts with a 2 or 3 month course of 3 drugs , one will be a chemo drug such as cyclophosphamide and usually the steroid Dexamethasone is given with it , but your mums doctors will give her all the info A couple of things are likely at this stage it can be very tiring , your sense of taste may alter and the steroids can make sleeping difficult and also you can be very touchy and a grump!Just remember its the drugs and not your mum if she is grouchy and it goes away when you arent on steroids!Depending on your mums health and fitness she may have a stem cell transplant afterwards which gives a good chance of a longish remission Its quite a simple procedure and you can get info packs from this site to explain it all Some people only need a short spell in hospital for this and others may need longer , ther is a period of time where you need to build up your fitness and immune levels afterwards which means you cant always be as active as you would like , but its worth it to be free of major treatment for as long as possible .I dont know if any of this helps but can I suggest you give the nurses on this site a call , they are brilliant at giving clear accurate info and advice Another person you could contact is your mums myeloma specialist nurse who will be happy to reassure you . Try to take it one step at a time and if you need support there are lots of lovely people on here for you , not just patients but carers and children too Best wishes Bridget
Hi Clara it sounds like fluid retention which is fairly common with a steroid mix.I have had it quite a lot , you need to get a prescription for diuretics tomorrow and get your dad to elevate his ankles and drink plenty .It does go down fairly quickly , not sure about the rash best check it out tomorrowIf the rash gets worse have you got the ward number , they should be able to help Hope he is okay love Bridget x
Haha Roz this one cracked me up very clever thankyou for the giggle .How are you getting on ? I hope you get to spend time with your daughter and granchild , children make the world a much better place dont they love Bridget x
Hi Andy I would definitely reccomend going for the sct ,it is worth the chance of at least a lengthy remission from heavy duty treatment and more people seem to getting complete remission lately too . As Gill suggested talk it over with your consultant as to whether you can delay , most treatment plans are worked with you so tell them of your concerns If they advise not waiting then go for it , your family and friends would want you to have the best chance and I am sure will be understanding , perhaps you can have your own celebration afterwards Good luck in what you decide Bridget
Hi Ruth so sorry to hear your husband is having a rough time . It takes a bit of time for everything to take effect and for the doctors to get test results to help them understand the best treatment .I agree with advice you have had dont delay in phoning the specialist nurse or even the consultants secretary if the pain is bad , its only by telling them they will know what he needs.It does get easier with time and I hope your husband will be home soon which will be better for you both best wishes Bridget
Hi Min thankyou these made me laugh out loud ,just what I needed . Hard to believe we put our trust in doctors though!! loive Bridget x
Hi Tanya its fairly common to have bone pain with myeloma , for this its log term pain relief The bone strengthening infusions such as Parmidronate or Zometa do help pain as well I take slow release morphine tablets twice a day which works well for me .There are also patches which release a controlled dose over 24 or 48 hours .If the pain killers your dad takes are doing the trick you may not need to worry yet . The Macmillan nurse will know all the various pain relievers , they are experts so you will get good advice Hopefully you dad will get on ok Monday as you say he hasnt got you to translate so he will be more aware I am sure Take care love Bridget
Hi Keith it does sound as if it could be neuropathy I am sure the hospital wil put your mind at rest though It must be very frustrating though and not pleasant I hope it goes soon love Bridget
Hi Sarah you will get loads of suggestions for this one .Heres a couple ofcan think of , a packet of moist toilet tissue wipes ( hospital loo paper is not nice when you have to keep going!),a pillow if the hospital allows it best to check,perhaps a digital photo frame with pictures to keep your mum cheerful, a radio If your mum enjoys reading an e-bookreader might be a good idea ( Less books to carry ,Asda do one for about £50 now), hand cream and body lotion as your skin gets dry but not very perfumed Sorry I cant think of more at the moment but I will come back to you .After the stem cells are returned your mums appetite may not be very good and her sense of taste is likely to be off so a variety of small snack size treats , cheese ,crackers , small tins of fruit etc Have you been advised about sucking ice or lollies whilst your mum is having the melphalan infusion? There seems to be a lot of evidence that it helps avoid mouth ulcers , I didnt have any bye for now love Bridget
Hi Roz lovely to hear from you love Bridget x
