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BCG Ready Set Go!!!

Today I was notified that I can now start my BCG treatment after 18 months since first being diagnosed with bladder cancer and 5 TURBT surgeries later. I have aggressive invasive high grade carcinoma bladder cancer insitu. They found I had BC when I had a hysterectomy in September 2018. It was low grade at the time and didn't require BCG at this time. At my next cystoscopy it became a high grade aggressive BCC insitu. At this time I became very unwell with a condition called Temporal Arteritis which can cause permanent blindness. For this treatment I was put on a very high dosage of steroids. You cannot have BCG on 75mg of steroids I found out. My specialist wanted me off the steroids completely before starting BCG. This was going to take at least a year to come off them if all went well. This disease can last up to two years. So in the meantime I have been having TURBT surgery every 3 months to remove new growths (5 in total) the last surgery was Monday 13 January 2020. I am now down to 4mg of steroids and my NEW specialist has given me the go ahead to commence BCG. Yippee!!! I have been waiting 18 months for this day but now I am so scared of what is to come. I will be susceptible to side effects because of the steroids and also my urethra valve back to my kidney leaks a third of the way back up to the kidney which is a bit worrying. I only had my surgery two days ago and I start BCG in the 5 days time. Is this too early as my bladder wouldn't have healed, another worry. Mentally I have been very good and I haven't broken down once and been very positive. Wish me luck!!!

  1. Michelle,

    So glad to hear you are now able to start BCG. That's wonderful (relatively speaking 😀. I am sorry it's been such a complicated road to get to it. I actually happen to be familiar with temporal arteritis because my Mom had it. She was on the high steroids like you, for a while, and then normalized in the 4mg-10mg range depending on her sed rate at any point in time. What I didn't realize is that the steroids so highly affect BCG and your ability to receive it. I am so glad that you are able to get treatment for both these conditions. Please let us know how it goes as you are able. We are all rooting for your well being! Thanks for telling your story here.

    Best,
    Renata (moderator)

    1. Thank you Renata for your kind words. Hopefully the headaches will stay away long enough for me to complete my 6 weeks of BCG on the 4mg of steroids without having to increase the dosage.

      1. Michele
        Best of luck to you I started my BCG treatment yesterday myself my bladder cancer was found beacuase fortunately being a stubborn male I tried to deal with pain from the stone till it got awful if it hadn't been for me being stubborn the cancer might not have been found early or stone removed befor the cancer was there but so far the side effects have not been too bad urinary problems the need to go frequently weak stream noted the day after first treatment..honestly things i had expected and bad typing...oh wait that last one is just me..had to try to blame it on something 😀

        Keep on fighting

        1. Hi Alan,
          Glad to hear you have started your BCG treatment without too many side effects.
          I had my second BCG on Tuesday and it is now Thursday without too much discomfort. I have just needed to go more frequently like yourself and a slight burning in the bladder within the first 24 hours. It seems to have settled now which is great. Last week for my first BCG wasn't as good as I had to have surgery the day after my BCG to remove a tumour in my Duodenum (small intestine) and the mix of the two gave me some side effects. Thankfully the effects weren't from the BCG as I feel fine from my second BCG today. Good luck going forward Alan with the remainder of your treatment with a good outcome in the end.

      2. Hi Michelle,
        Oh dear, you have been in the wars! I do hope the BCG treatment fixes your bladder cancer without too many nasty side effects.
        I had my 5th treatment today, and it was even worse than last week, which was horrible. The treatment itself is painless, but the following 12 hours have been so painful I've sat on the toilet and cried. My poor hubby was distraught, but there is nothing he can do. Just as well it settles down overnight usually, as I would hate to be like that for any longer.
        I was interested to read on this forum about the BCG being in short supply over in the States, and asked my nurse today if she knew anything about that, and she did. Same in Australia, and the hospitals are having to prioritise the treatments; those receiving the first six weeks get priority over the once a month maintenance patients. I'm supposed to go on the monthly maintenance plan later this year, but I'm kind of hoping they won't have enough supplies 😉

        1. Hi Gina, thank you for commenting. Firstly, I am sorry to hear that you are going through a painful time with your BCG treatment. Just think one more and you will be finished. I believe the maintenance treatments aren’t as painful as it’s only once a month. I guess I will find out if my 4th BCG will cause me pain next Monday. I had my 3rd yesterday without too much discomfort. I had a terrible headache and had to take strong painkillers which might have helped with the pain in the bladder. Did you take any painkillers for your pain?
          I was wondering about the shortage of BCG in Australia and thank you for letting me know. I am supposed to also start my monthly maintenance after 6 weeks.
          I can understand how there is a shortage worldwide as while I was having my treatment yesterday there were 10 bladder cancer patients being treated at the same time as myself.
          All the best for your final treatment and I wish and pray that you have no pain and burning. 🙏🙏🙏☺️❤️

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