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Hi Wolf? my experience with velcade were somewhat similiar the first time I managed about 4 doses but was taken off it because of constipation ,I did have PN but not till 2 weeks after I stopped velcade and it went after a couple of months . I was under the impression that PN due to velcade is likely to go eventually but PN due to Thalidomide is permanent My second attempt at velcade was ok for the 3 months I was on it but it had no effect I am now on my first course of Revlimid and the lovely dex and I cant say I am enjoying it at all , hopefully next month will be better I would sett;e for being just a little less tired during daylight hours!! Sounds like it is doing the trick for you and I hope for me too. Jen have you tried talking to your specialist nurse about never seeing the same doctor twice? It really isnt good enough we need a good working partnership with our doctors to get us through this minefield called myeloma love Bridget x

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Hi Kay glad its all sorted now but what really impressed me is the speed you were in and out of hospital!! No wonder you have such faith in them Heres hoping there are no more dramatic happenings As for work it will still be there you are far more important love Bridget x

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Hi Emma welcome to the crazy gang. I am glad to hear your dad is starting to pick up now he is on treatment. Th,ink of us as your second family and ask away, there are so many lovely people on here to support best wishes Bridget

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Dear Gaye I think you may well be right and the dex effect may be when it is used in combination with others like Rev and Pom Botheration and a double pox to myeloma!! I am certainly glad to have a friend like you to share the journey with, if only they hurry up and relieve your pain We can be 2 cantankerous outrageous old biddies( not really old though!) and blame it all on the drugs!! Seriously though I am going to try not moaning about the drugs as last week my lovely father-in-law was told his chemo wasnt working( and his tumour is much larger) , they are no longer going to actively treat his cancer now , its heartbreaking watching the fight go out of him So as awful as our treatments are I am grateful that there are still treatments Hope today brings you some relief from the pain, when do your rt sessions start? lots of love Bridget x

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Hi Shirley lovely to hear from you and brilliant to hear you are doing so well! Seems like you have a way to go yet but I am sure you will get your puppy before the summers over Take care love Bridget x

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Hi only me glad to hear your mum has got started, it does get easier You could ask the specialist nurse if they do a drug chart to help manage all the tablets , I usually do my own so that I can tick off when I haave taken something I hope things go smoothly and please give my best wishes to your mum and dad love Bridget

[brochoParticipant]

Hi Tanya your poor dad is having a hard time and of course you as well When myeloma is first mentioned its always a huge shock and it takes a bit of time before all the information starts to make sense, so take it one day at a time and be wary of searching the internet as information is very often out of date This site is brilliant ,if you have specific questions ring the nurses on the info line , they are so well informed and so helpful There are lots of us on this site to support you both, as patients and carers so please dont be afraid to ask High calcium levels and anaemia are very common in people who are newly diagnosed, it doesnt take long with treatment for them to become more normal. I should imagine one of the first things they will look at for your dad is good pain relief, if its not mentioned tell them how much pain he is in The problem in giving advice is that myeloma is such an individual illness its hard to say what is going on whilst only knowing a little about their symptoms etc. I would imagine your dads treatment would be as an out-patient and it will be a mixture of tablets and perhaps intravenous drugs given on the day ward. There will be a specialist nurse who can tell you exactly what the treatment will be for your dad as well as his doctor The specialist nurse would also be the person I would talk to if you are concerned about your dads ability to cope Dont despair !!I was diagnosed 4 years ago when they discovered a tumour had destroyed 3 vertebrae , I havev extensive bone damage and I was told I was stage four but I am still here !!There has been lots of treatment along the way and its not always easy but its not as bleak as you first think Could your half-sister help with taking your dad to appointments? You have a lot on your plate so try and find time to relax as well Please let us know how your dads getting on best wishes Bridget

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Hi Min I bet that feels great now its more official and the time will fly!! Before long you will be having leisurely lunches and long shopping trips , dont forget spa days too Sorry just teasing Icant imagine you are the sort of person who would enjoy that sort of lifestyle!! You will love being retired though and I bet Peter is looking forward to spending more time with you love Bridget x

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Dear Gaye of course you are entitled to feel sorry for yourself , you have been going through h**ll lately!! Tomorrow I will be willing your rt department to get you sorted as quickly as possible , all my fingers and toes crossed too Mind you they must have decided you were a lady not to be messed with today if they are sending your meds out by courier, I should think so too Hang in there Gaye love Bridget x

[brochoParticipant]

Hi Kay glad to hear treatment is going ok. Poor you gout is very painful isnt it, the last thing you need. I am fairly certain it is dex that makes me feel sore and tender, but it is my first curse of revlimid too. I finished my dex pulse last Thursday and the tenderness was at its worst on Sunday, so the timing is right. I think your description of being hit by a steamroller is spot on !! I hope things carry on smoothly for you love Bridgetx

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Hi Jo that image set me off with a fit of the giggles!! Perhaps we could record the dex song ? Then they would have to interview us all on breakfast tv, trouble is none of us would have the patience if it was a dex day !!! Haha Radiotherapy certainly seems to have done the trick for me , the pain does come and go but for only a few hours at a time How are you .do you have clinic this week?Take care love Bridget x

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Hi Debs be interesting to hear what your docs say Have you noticed a need for saltier foods? I realised last night why peanut butter wasnt right , couldnt taste the salt . Have you mentioned the bruising feeling to your doc? I dont think it is that common I mentioned it to my consultant once and she looked at me as if I was nuts!! Just had a thought even Hester Bloomenthal would be hard pushed to cook us a meal at present !!Be a good challenge for him Hope your day is a good one love Bridget x

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Morning Sharon great news !!Bet you cant wait to get home Take it easy love Bridget x

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Good Morning everyone thankyou for your support , it always makes me see the better side of things. I am going to ask why there seems to be a delay in my finishing the dex pulse last week and feeling so rubbish 4 or 5 days later. Debs my money is on dex for the crappy taste thing , it always does it to me!! Pam I really admire how you are so incredibly busy and with a young family , myeloma is certainly no match for you!!! Sharon and Pam I am looking forward to seeing those wedding pics you will both look beautiful and the day will be so special you will feel it too. How romantic a wedding in Rome your sister is a lucky girl Pam . Min I am going to be on a smaller dose of dex hopefully at some point so I will discuss this at clinic . I couldnt find a nasty bar of chocolate Min , because I had eaten it all !! Does anybody else find dex affects the weirdness of your dreams?? Last night I dreamt all of the us were on a protest march , anti- govt something?, Gaye was our leader , Dai was leading us in folk songs We were a pretty fierce force to be reckoned with . shame I woke up before I found out why we were protesting have a nice day , no sun here today , love Bridget x

[brochoParticipant]

Hi Min and Gill the article on steroids which was in the press last week said that steroids deposit body fat in specific areas These are the base of the neck and the tummuy area I know I now have a humpty tumpty tummy now whereas before I had a waist no matter if I was overweight What joy !! love Bridget x

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