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…[Read more]

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…[Read more]

Hi Eve I really feel for you , it sounds as if you both have a lot on your plate at the moment The trouble with dex is that as a patient its very hard to admit it is the dex making you behave badly As hard as it will be try and ignore your husbands bad temper if you can , if you say to yourself its not him its the dexAbove all though make some…[Read more]

Hi Ann wwelcome although I am sorry you are having to join us . I agree with Michelles advice and hopefully you wont wait too long Rrecently I was going to be referred to an orthapaedic surgeon to see if they could help with the pain in my back Apparently there are minute fractures in myeloma that can be the cause of pain but they are hard to…[Read more]

Hi Min what a nuisance for Peter to get the trots on his drug free week , just doesnt seem fair. I hope his neutrophils get themselves in order soon It beggars belief that they wouldnt do the serum free light chain test because of cost !!!Grrrr!! It makes me so cross In my case they are the only chance I have of getting an indication of whats…[Read more]

Hi David great to hear your results , you must be on cloud nine !!Lucky you a whole 2 months before your next clinic , heaven. I hope your x-rays can put your mind at rest so that you can have some fun and normality after all you have been through in the last few months love Bridget x

Hi Sandie its good to hear your mum is feeling well and doesnt need treatment at the moment , long may it last Fingers crossed your scan wont show anything nasty .Work does have its good points keeping your mind busy though , hope you dont have to wait long love Bridget

Hi David I make a chart when I begin a new course of meds Just straightforward boxes but I leave room so I can tick off when I have taken them , the charts the pharmacy gave me didnt have space for this .I keep meaning to get a pill organiser but havent so far The other day I was told that these organisers are not safe to use with toxic chemo…[Read more]

Hi Keith it is blooming awful when your veins just cant be accessed and its even worse when you know the situation isnt going to improve. I agree with you wholeheartedly that licensing the sub-cutaneous injections needs to be a priority . It is infuriating that there isnt a short cut for situations like this Hope you arent feeling too battered love Bridget

Thankyou David what a great picture Bridget x

Haha Min I love it!!Got me with this one Bridgetx

Hi David thankyou that was the funniest thing I have seen in ages Bridget x

Hi Chris welcome I am sure you will get lot of support from all the lovely people on here It took me a long while before I even looked at this site , a form of denial I think Unfortunately not all people even try to understand myeloma but its very sad that your husbands family are so unsupportive . Grandchildren are a special joy arent they , I…[Read more]

Hi Kevin its good to have you back .You have certainly been through a tough time and being in hospital that long must have driven you crazy!!! Heres hoping its a very long time before you have to go back there . love Bridget

Hi Kath lovely to hear from you but I am sorry you are having such a rotten time As you say it becomes a balancing act to gain some quality of life when these drugs rule our lives. At the moment I am hoping like mad that next month will be easier as I am fit for nothing most daysWhat I find really frustrating is when you have a day where you do…[Read more]

Hi Jet sorry you have had to join us but welcome to the most supportive group ever! I am on my first cycle of Revlimid too and I have been struggling Like you I am on Dex for four days, 20mg a day, and 25mg Revlimd daily over the three weeks Most of the side-effects you describe can be put down to dex but I think they are magnified when taking Rev…[Read more]

Hi Norman I had my sct at UCH London , the team is led by Dr Kwee Yong who is pretty well known in the myeloma world Food was pretty much what you would expect but you are in your own room so wouldnt disturb anyone one with your own grub Macdonalds over the road and major supermarkets 2 minutes away I used my laptop with a dongle no problemswith…[Read more]

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…[Read more]