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BCG Treatment Journey
Had my first BCG treatment today 1/24/2023. Starting this new journey, we’ll see how it goes.
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173 Replies
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Just to update, went into the hospital on November 2nd to go on IV blood thinner to replace my oral thinner (plavix) 5 days prior to my TURBT on November 7th. TURBT was done, back on plavix the next day in hospital and sent home on the 10th. Had the usual spasms, frequency, urgency after coming home. Blood and blood clots were more than my first TURBT a year ago, but that was to be expected due to the blood thinner. One week home on November 18th, I can’t pee…only blood. Off to the ER, they inserted a 3-way catheter and flush out a bunch of blood clots. Admitted me and put me on 10 liters of saline per hour flushing my bladder through the 3-way. On the 22nd, back into to OR to cauterize the bleeding, then back to my hospital room for more flushing through the 3-way. At this point i’m really concerned that this plavix blood thinner is going to make me continue to bleed. I ask my urologist if he had consulted with my cardiologist regarding maybe stopping the plavix (it has been 5 months since my stent was placed) the urologist has not spoked with the cardiologist…I was upset to say the least, and he called the cardiologist right then. Cardiologist said it was safe to stop the plavix. Home on the 26th. Things seem to be going as expected now, with one small scare a couple days ago with some big clots that I had trouble passing, they eventually passed….thank god. No way did I want to go back to the hospital. What a friggin month. Cystoscopy scheduled March 5th, then hopefully pick up at BCG #10 where I left off.
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Well that’s really good news especially with the holidays right around the corner. I don’t return for a cystoscopy until the end of December so I have nothing new to report; however, don’t hesitate to message me if you have any gem/doce questions or concerns. At the moment, I feel pretty good so all is well.
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Hey Hank, GREAT NEWS on the camera check. That’s what we all worry about and are relieved when we get good results only to start worrying all over again about the next one. The availability of BCG seems to be a problem off and on for a while now. Hopefully the Doc gets some in. We are all praying for a good supply of BCG. Hang in there, Good Luck, I am praying for you. Eddie
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Well, I had my cystoscopy today and doc says everything looks good. I have to say I was pretty worried this time, so very relieved to get good results. On the downside, I won’t be able to start my next BCG treatments until February because of the shortage. So almost two months late. Doc says should be fine, but if I had to wait any longer, we would look at alternative treatments. (gem/doce I am guessing). So, I hope their supply comes in OK. If I do have to switch, I am glad we have Hannah to lean on for her experience with it. Take care all! Hank
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Thank you Hank and Eddie. I will do my best to learn from your experiences and relay mine to the group as well. So glad I found this very welcoming group! Brian
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Hey Brian, I would like to say WELCOME to this forum. I would also like to say that I am truly sorry that you had a very good reason to find and reach out to us. First, I’d like to say that we are very interested in your journey, so please continue to post. We are here to answer any questions you might have based on all of our experiences. We have done a bunch of research, though we are not medically qualified, we are a wealth of knowledge. A lot of us are strong in our faith and believe that keeping a fighting attitude gives us the best chance for good outcomes. Though we don’t really know each other, we know what each one of us is going thru because we have been there. Share as much or as little as you feel comfortable with. Different diagnosis mean different thing as far a treatment goes. We have folks in different stages of Immunotherapy Treatment (BCG) and some opting for Gem/Doce (Gemcitabine/Docetaxel), Hannah is our expert on that treatment, or at least our Pioneer. Let us know how things are going and we will do our best to carry you along with us on our journey. Again, Welcome, Stay Strong, we are Praying for you also. Don’t hesitate to reach out. Eddie
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Hi Brian. I too was glad to find this forum. There’s really no one better to talk about it than someone who’s going through the same thing. I am glad to hear our shared experiences has helped you. Keep us posted on how you’re doing. Keep the faith! Hank
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I am fairly new to the forum and have been following this thread for a month or so. I was diagnosed with bladder cancer last Spring, had two tumors removed and am scheduled for cystoscopy every 90 days. I joined the group to better understand my condition, so that when I see my Urologist I can ask relevant questions during the very short time that I have with him. This forum is giving me that. But I want you all to know that I’m trying to emulate something else that you exhibit…..your bravery. I am absolutely in awe of the bravery that you all have and I hope it will rub-off on me. Thank you. I pray for each of you and wish you the very best on your journeys. -Brian
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Hey Hank, I tell myself that also, that the treatments are charging up my immune system to fight any cancer cells that might return. Makes me feel better about it at least. You know, when I made appoints for these 3 treatments back in July my Doc told me the same thing about a BCG shortage, but they went ahead and made my appoints anyway, and somehow, they had some for treatments. Good Luck on Nov 1st, I’m praying for a good outcome. Stay Strong my friend. Eddie
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Thanks for the update Eddie. Sounds like you made it through the treatments pretty good, other than the fever. I like to think that means the treatments are really firing up your immune system! Good luck with your next scope. Mine is coming up Nov 1st. A bit of news though, my docs office told me that they are experiencing a shortage of BCG and my next instillations may have to wait until February. Not sure how I feel about it, but my docs not too concerned. Easy for him! Lol. Just have to go with the flow for now. Keep the faith everyone! Hank
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Well, I survived BCG Treatments 10, 11, & 12. Everything was pretty much normal. It seems that I am running a Temperature about 5 hours into the treatments. This last one ran about 102.0 for about 4 hours before it started coming down. The next day it lingered around 99.2 most of the day until about 10pm, and then, went back to normal. I figure if that is all I have to complain about, I am Blessed. Next scope is December 12th and then I am not really sure what happens then. Doc doesn’t really say for sure, I guess it’s based on what she sees and what the tests say. I am hoping for the 6 month break but she is the Boss. I hope you all are doing good and staying strong. We can all make it thru this, I am Praying for each and ever one of you each day. Eddie
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Wow Bill, you can’t seem to catch a break here. Let us know how your surgery goes. Whenever I start feeling sorry for myself, your posts seem to smack me around a little and bring me back to reality. Just know that you are in our prayers. You are strong and can push thru this. Soon you will be saying, WOW how did I ever get thru all of that, and I know you will. Stay Strong and stay in touch. Eddie
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[quote=”Pickle_Bill post=61967″]Had my scope on August 23rd after rounds 7,8,9. Unfortunately, two new tumors were discovered. They want to schedule me for another TURBT, but since I recently had a stent in my heart and now on plavix blood thinners, they can’t do the procedure. Currently in limbo waiting for the urologist to consult with the cardiologist to decide if and when I can stop the plavix and have the TURBT. My head is spinning a bit, not only with the unknown scheduling of the TURBT, but also because the new tumors have appeared so soon after starting BCG. Trying to stay positive is a struggle at times.[/quote]
So, just to follow up on all of this. The Urologist and Cardiologist, finally came up with a plan. I need to be admitted to the hospital 5 days before surgery so I can go on a IV blood thinner that does no stay in your system for long like the pills do. Surgery was scheduled for October 10th, so to be admitted on the 5th. However I tested positive for COVID on the 4th. Just my luck. Surgery now on November 7th, admitting on the 2nd. Oh, no idea how long i will stay after surgery (need to go back on blood thinners), that will be up to the urologist they said.
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Thanks Hannah,
That’s good to hear, that you get a break from treatments. Thanks for keeping us in the loop about the gem/doce treatments. It will make me, at least, feel better that there is another treatment to try if the BCG proves to not be working. Keep the faith!
Hank -
I appreciate the prayers and I too pray daily and keep in mind the people I have been “traveling with.” I’m thinking that perhaps the gem/doce might end up being a good BCG alternative. I guess time will tell.
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