Hi every body and I feel I should share the problem I am going through, I was diagnosed with Bladder Cancer early 2016 and have been through the usual removal of tumor plus a lot of cancer spots but it wasn't muscle invasive. Having the BCG treatment which is imunatherapy a virus that stimulates the imune system into attacking the virus then anything else including the cancer that lies below which in the first 12 months worked very well and no big side effects. Last year all things changed after the usual 6 monthly BCG treatment with a lot of pain in my knees which have arthritis but that subsided after a while then when the next 6 monthly BCG treatmant was finished on the same day I was in the A&E dept at the local hospital in great pain and unable to walk and this carried on to this day 8 weeks later. I have had a week in hospital recieving IV high grade steroids and am still having oral steroids so I can walk, my oncologist has changed my medication from BCG and my main hospital are ready to do some biopsy's on my bladder as the BCG has attacked that as well. BCG isn't something everyone can tolerate so be warned.
Hi @Paul_D, it's lovely to see you around here again!
Thank you so much for sharing your experience with BCG, I am saddened to hear that you have had such a bad time with it. I hope you are feeling much better with the medication change!
Please do let us know how you go with the biopsy on your bladder
Thanks Kate and I will be at the Mater in Brisbane next week for them to have a look inside and take some biopsi's to see where this is taking me, I have finished the oral steroids now and will hopefully discuss the next stage with the team under Dr Clubb.
Will indeed keep you up to date and again thanks for your concern, walking still an issue as my knees are still very painfull.
Hi every one and yes things have improved over the last 6 months, I had some bio's done and the BCG had left a desease in my bladder and the Mater team have dealt with that. I am now unable to receive the BCG treatment and have been told if and when the cancer returns it will be dealt with (it will), unforunately if it proves to be muscle invasive then the bladder comes out. Getting used to that thought as it's better than not being able to walk which I can now after a long, long period of pain, I am fully aware that my situation isn't any where near other cancer sufferers but even though we are one and all on our cancer journeys our individual suffering makes us understand how other people in the cancer team are effected. My saviour throughout the last 6 months has been Tapentadol but you can really be effected by this so be careful.
Love and best wishes to all on your journey's.
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