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BCG Treatment Journey
Hi, I haven’t checked the site lately. I hope everyone is doing OK. I just had BCG treatment number 14 with number 15 coming up on Monday. It never gets easier, but hopefully its doing what it is supposed to do. Anyways, let me know if our little group is able to see this. Keep the faith! Hank
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7 Replies
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Hey Nana, OK Take a DEEP Breath. Your story sounds exactly like mine. I have High Grade Papillary Urothelial Carcinoma and mine was caught early. After my 2 surgeries I waited 7 weeks before my first BCG treatment started. There has been a short supply of BCG around the country for the last couple of years. I’m not sure why it has taken so long for the US to start to produce it here instead of importing it from a Manufacturer in India. Merck has a facility in North Carolina but it won’t be fully up and running until Late 2025 to early 2026. There have been folks in our forum that have had to wait to get their BCG treatments. We have 1 person that I know of in our forum, Hannah, that is having the Chemo Therapy (GEM?DOC) vs the BCG but she hasn’t posted for a while. I believe her body couldn’t tollerate the BCG so she had to switch. With that said, and not being a doctor, I can only tell you what I would do if it were me but my opinion is only my opinion. I would probably wouldn’t let it bother me if it were an extra week or 2 past that 7 week time frame from surgery to remove the tumor, but again that is just me. I was diagnosed about 22 months ago and with the BCG Treatments, all of my tests have come back clear so far. I just finished treatment Treatment #15. If you decide to that BCG is the way you are going to go I would be more than happy to share any insite or information that I have with you and tell you what to expect during your treatments. I know everyone is different but I have posted with a bunch of folks and in general it seems to follow about the same path. I understand your panic, Cancer is a scarry word, but I believe inner strength is important. I message 4 of 5 folks that are on the same journey and am more than happy to add you to my list. Keep trying to post on the website. When you post on the website, everyone in the forum gets your post and you will get responses from any and all of them. If you have any questions, please ask. Eddie
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Nana, please read my response on your earlier thread.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait. -
After a couple failed attempts to start a new post [I just joined this fabulous forum] this seems to be a way to post so thank you in advance for listening and allowing me to do this. I’m new to this site and new to bladder cancer. After 5 months of urinating blood I was diagnosed 3 weeks ago with non invasive high grade papillary urothelial carcinoma in situ [involving Von Brunn’s nests?]. Good news it was caught early. Bad news BCG is on National back order and I am petrified. The doctor is “still waiting” for BCG and will proceed with MITOMYCIN INSTILLATION if the BCG is not available in the next couple of weeks. I’m so scared it is going to spread and get worse while I “wait” . Since it is localized to the bladder lining, do you think I’m OK waiting and did anyone else have to wait for BCG?
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Hey Everyone, Just recently finished treatments 13/14/15. All went as expected. All of my tests are coming back good, which I hope continues, of course. My prostate numbers are fluctuating a little bit so my Doc wants to do a Biopsy which is coming up on the 3rd of July and then another scope on the 17th of July. I’m not so sure I want to go thru the Biopsy because if it turns out to be cancer I’m not so sure I’ll do anything about it. Heck I’m 71 and I would bet that my aggressive form of blader cancer will take me (if it comes back) before a slow moving prostate cancer will. I guess I can’t make an informed decision if I don’t know. Stay strong everyone.
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Hi,
On March 4, I had a cystoscopy. The doc says all looks good and no sign of recurrence at this time. That was good news for sure. I am scheduled for BCG treatments 16-17-18 in May with another scope set for early June. I also will be getting my PSA checked in April and an MRI in June. This in relation to the scare I had about Prostate issues. It turned out not to be cancer, but doc wants to follow up anyways. OK with me. Good luck to all! Keep the faith! Hank -
Hi everyone,
I hope everyone is doing OK. I completed BCG treatments 13-14-15 and am going in for a scope in early March. Fingers crossed! I gotta say the last BCG treatment was probably the worst for me since I started. Mostly the next day though. I woke up and found it hard to urinate. I was worried that I may have a clot blockage. Thankfully on the ride home, (4 hour drive) I was drinking water and began to pee normally. I was relieved. (No pun intended). Keep the faith everyone!
Hank -
Hey Everyone. Just an update, all of my tests have come back normal once again so I have graduated to the 6 month program. Cystoscopy at the end of April and 3 more BCG Treatments starting the first of May. I hope you all are doing well. Keep posting everyone, I like hearing how you are doing, good or not so good. I am praying for all of you. Stay Strong. Eddie
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