Hi everyone thankyou again for your best wishes Jo I hope you had a great week with your grandson , I bet he was excited!! I am still plodding on , but my macmillan nurse is back from leave and its been agredd she will make any changes to my drugs It was a real pain being prescribed something only to have it completely changed by the next person I saw , thankfully they have realised how unworkable it was too !! That really bad pain in my back and side seems to have gone into hibernation thank goodness!! Now its just a question of getting used to these new pain relief drugs and finding the right dose for me The local palliative pain consultant that I saw last week incresed the Oxycontin from 70mg twice a day to 200mg twice a day , this was such a big jump but ok at night The morning dose made me feel very wobbly so I reduced it to 120mgs in the morning , Amanda joked yesterday that as I am so used to self-medicating I dont need the professionals !!My legs and feet are very swollen , some days I cant wear shoes at all , so I increased the Ferusamide to 40mgs with little effect .Amanda has told me its not a very effective drug and not worth taking 40mg as there is a risk to my kidneys So the new plan is to ask at the hospice if I can have a leg massage to help shift some of the fluid This plus the excercises whilst I am sitting might help a bit but I think I am stuck with elephant legs whilst on this treatment! Clinic this week I am going to ask them to check out my rib area when I have my next mri in August as usually they just look at my spine . Iam also going to ask for a break from Dex , provided there is nothing nasty showing on the mri , I feel even six weeks might help me to lose some of the weight I have gained as well as these huge legs and feet It will also help me psychologically just to feel normalish for a while , I dont think the docs realise how steroids can affect you emotionally when you are on them long term Sorry for this long boring post , I am trying to catch up on everyone elses posts now lots of love Bridget x
Hi Dai congratulations on your good news and it is GOOD NEWS!! You are within the range and there is a high probability your numbers will drop even more by the time you have finished . I have heard good things about the once a week dose and if it does the trick it might be worth taking it a slower . I have no doubt you will achieve CR in the end whichever way it goes , your determination will get you there !! So keep on seeing the good news and keep smiling you are on the right road however many bends and curves there are love Bridget x
Hi Debs your dinner sounded awful !When I was in having my sct all I wanted at first was jelly!!My mum made some and brought it in but you can also buy it in individual pots too Get someone to get you a couple Fingers crossed the next bit isnt as bad as you fear it will be Keith good luck with your sct , it will be over before you know it and you and Debs will be able to recuperate in lovely summer weather( I am an optimist) love Bridget x
Hi Pam so sorry your dad is having such a rough time , it must be awful for you watching him go through it . It sounds as if your dad is being well cared for in hospital which must give you some peace of mind If it does turn out to be myeloma I am sure they will be able to manage treatment to suit your dads health , they wont give him the strong drugs unless they are sure he can cope The majority of us who have pain associated with myeloma due to bone damage , hopefully they have caught your dad early and there wont be any extensive bone damage If he does have pain there are lots of pain relief drugs that can be used its a case of finding which one suits him. Try not to worry too much myeloma is much more manageable now with lots of treatments available and you will be able to talk to the doctors about your concern regarding your dads treatment being too much .I hope you get some results soon and if it is myeloma just take things a day at a time If you need support there there are lots of lovely people on here only too willing to help Good luck to your dad and you Bridget
Hi John I do hope you remain symptom free for a very long time yet The treatment can be demanding , although consultants are generlly very good in working with you to find the right treatment to keep some quality of life balance The other thing in your favoir is the time to research all treatment options Provided you are generally fit and after a multitude of tests they are able to predict ( to a certain extent) how you would cope with a stem cell transplant . I agree with Min if you can keep your weight up it will give you something to keep in reserve if you do start treatment Well I hope this advice is not relevant for a very long time Take care and let us know how you are getting on Bridget
Hi Jet I love your pic , you really suit having no hair it shows what great bones you have ! My sct was 4 years ago and I was petrified going into hospital , like most of us going into the unknown. I had the sickness and diarrhoea but I was lucky not to have too many problems with my mouth or gums . I had absolutely no energy whilst in hospital and for several months afterwards But my sct was only 3 months after a major op to reconstruct my spine and my response to the whole sct naturally took longer than someone who was relatively fit to start with The biggest problem throughout my 5 week stay in hospital was feeling isolated We only live 30 miles from London but it was impossible for most of my family to visit during the week, when I was in my local hospital for 6 weeks there was always someone popping in , work colleagues as well as friends and family So the loneliness made my time in hospital seem much longer Going home was a bit nervy , being aware of the need to be almost sterile but we soon sttled into a realistic routine and realised there was no need to be too paranoid , good basic hygiene covers most of it! Good luck Jet I am sure your positive attitude will help you cope wonderfully and you will be home before you know it! Top tip take your own cup or mug into hospital so you can still enjoy a hot drink that doesnt taste of plastic love Bridget x
Hi Gillian its good to hear you are doing well and I hope you can get home next week, there really is no place like it Your new house sounds exciting , even if it is a big undertaking !!You will get some normality back , probably sooner than you can imagine right now ! The main thing is to rest when you need to , dont try and rush yourself to do wht you think you should , it will come in time but you just cant rush this recovery time Enjoy being looked after for a while , I am sure you have been the one doing the caring often enough!! Take care and keep on keeping on !! love Bridget
Hi everyone bless you all for caring Sorry I havent been around but I have been struggling with Revlimid and changing these wretched painkillers! Half the time I am out of it and the other half I am asleep Last week I saw a consultant who specialises in palliative pain care and he altered my Oxycontine dose from 70mgs twice a day to 200mgs twice a day !!As you can imagine I was out of it the following day , I have now lowered my daytime dose to 120mgs On top of all this I had a new and really awful new pain in my back , it was very bad !!, seems to be easing now Hopefully I will be able to catch up on how everyone is doing over the weekwnd Lots of love Bridget x ps Gill sorry I will contact you soon x
Hi Ian I am glad things have gone well so far apart from your reaction. I hope that its all plain sailing from now on Good luck and take it easy love Bridget
Hi Sarah what a bastd this illness is , you must be gutted. Well Dex may be the most evil drug in the world but it is good at getting those pp numbers down quickly. Enjoy your break in Yorkshire I shall watch out for reports of a riot in Yorkshire !! Hang in there Sarah love Bridget x
Hi Kathleen sorry to hear you are having a rotten time hope it doesnt last much longer Your post made me chuckle at your new signature !!Being challenged in the dental department myself I love the name Gummy. Take it easy and I hope you feel better very soon love Bridgetx
Hi Keith great news now you can forget all about it for the time being and enjoy your holiday!! Have a wonderful time love Bridget x
Hi Gill welcome to our merry band of slightly crazy but wonderful people ( cucumbers are a good example!!tee-hee) Actually I thought I replied to your post yesterday , either I was dreaming or the gremlins have pinched it It is very confusing when you first start on treatment but it will soon settle down as you get to understand all the new words Its great they caught you early and you havent got too many symptoms , tiredness is something we all have to a certain degree , I can cat-nap for England !! When is your birthday? I am sure you will have a good one treatment or not My only advice on your starting your myeloma journey is take things a day at a time , today might be rubbish but tomorrow could be great Best wishes Bridget x
Hi Gill you are on the right site for info and lots of support from people who understand what it feels like At the moment it probably feels overwhelming but as your treatment begins it will all start to make sense You will have a specialist nurse who will be available , usually more so than consultants although a lot of them are very good at keeping in touch Take things a step at a time try not to worry too far ahead Good luck and let us know how things are going best wishes Bridget
Hi Peter UCH is a London hospital I am also a patient there. Several of us have have asked our docs about the sub-q Velcade and apart from them being aware of its use in US no good reason has emerged as to why we are not !! It is so frustrating as this would make the use of Velcade so much easier for us . Have you ever had a PICC line? It is so much better than the Hickman It does not need to be put in in theatre for a start , needs only a local anaeshetic , I have had 3 now and it really is painless It is not an open wound so less risk of infection and easier to live with too, all you need is a dressing on your upper arm covered with tubigrip, very discreet too It may be your hospital has not yet trained nurses to fit and use them but definitely worth asking Please let us know how you get on Bridget
