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Hi everyone and its been a while since I was last on the forum, I have had a nightmare in the last 18 months due to BCG treatment. Before I go on I would just remind people who don’t know me that I live in Queensland Australia and in 2016 I was diagnosed with T2 non muscle invasive and had a tumor plus multiple CIS removed and was given BCG 6 weeks then on the 3 monthly maintenance BCG for the first year then 6 monthly plus numerous Rigid Cystoscopies then a couple of flexis. I had a reaction late 2016 to the BCG treatment in the form of arthritis in my joints which was put down to age etc, each time I had BCG the arthritis got worse then in May 2018 after my last BCG I was admitted to hospital due to me not being able to walk and excruciating pain in my knees, I was given intravenous steroids for a week then released and I was able to walk but just and with medication I got by. I had a visit to the Urology team in September 2018 in Brisbane as this is my main hospital for cancer, they performed a flexi-Cysto and found an area of concern which after a rigid Cysto 2 weeks later and taking biopsies found it was a disease caused by the BCG. Taking all this into account I will not be receiving BCG treatment in the future and when the cancer returns as the Urology team have said it will they will asses the situation and act on findings, in other words remove the bladder. Sorry to trouble you all with this and apparently not too many people react to BCG but I am one of the few, nice to be back on the forum.
Love & Best wishes to all.
Paul D
You might want to ask if Photodynamic Therapy or instillation of Gemcitabine are alternatives, perhaps as part of clinical trials. Both are mentioned in posts in the new therapies section of this forum. If you are still NMIBC it would be worth a shot.
BTW, I think rigid cystoscopies with the long steel rod are long gone here. I had one around 2014, but the doc retired the following year.
Stephen
Good to hear from you Paul, wish you had better news about the side effects of the BCG treatments.
Please let us know what your doc in Brisbane recommends.
There are some trials you may want to consider if they are available in Australia.
All the best,
JackHi Paul:
Welcome back. I have been hoping that you were okay. I understand what it is like to react to BCG. While I didn’t have the intense reaction that you did, I sure experienced a lot of muscle and joint pain to the point that my muscles and joints just screamed if I moved. My uro reduced the dosage of the last 4 treatments in the hopes that I’d finish. I took a lot of Aleve, Tylenol not doing the trick and had to keep it up for several weeks post treatment. It got better with time but I sure don’t want to know what it would be like to go for more BCG.
I echo what the others have said about investigating other drug treatments or clinical trials. Hopefully there is something out there that will be a better alternative to bladder removal. Hang in there and let us know how it goes. (((((HUGS))))
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