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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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14 Replies
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Sounds like you have found your lane. Fred Hutch, sounds like you might be in my area of Washington. Let me know how your treatments are going. I am getting ready to start BCG treatments 19, 20, & 21 but always keeping in mind that is things go south it’s good to know that there are other options. Hang in there. Eddie
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Hey Hank, good to hear from you. Things are, so far, continuing to go well. I have another Cystoscopy at the end of May and then 3 more treatments, numbers 19, 20, & 21 I think. It’s been 6 months since my last treatment so I am a little apprehensive about this cystoscopy, hoping that all is still good. I guess we will see.
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Hi all,
Well, it’s been several months…. I was diagnosed with 1 p ta High Grade NMIBC tumor in October 2024. Since then, I have had a 1st TURBT and 6 sessions of 1/2 doses of BCG. Three weeks BCG treatments my cystoscope showed 7 more tumors. My biopsy after 2nd TURBT showed the same p ta High Grade NMIBC tumor(s) as the first. My Urologist wants to wait 3 months to do another cystoscope and go forward from there. I know treatments work and treatments don’t work but because I had 7 more tumors within a 14-week period I was terrified about waiting 3 months (15wks) for a follow-up.
Because I wasn’t happy with that plan, I made an appointment with Fred Hutchinson CC (FH) for a second opinion. After my visit I changed my care to FH. My new doctor there has a much more aggressive plan. I will be starting a 2 drug-Intravesical Chemo regimen right away and secondary follow-up plans are already in the making. I feel so much more positive about my care now. And because I am with an Oncology Urologist now, I feel so many more options are available to me. I am so happy that I chose to get a second opinion.
Along with treating my bladder cancer she has also scheduled full body CT scans to not only look at my whole urinary system, but to look for secondary cancers throughout my body. This also is a great comfort.
I am also so glad this forum is available for all of us to share. When I was first diagnosed I had so many questions that were not being answered with my online research. I am so grateful for you all and your sharing.
Thank you so much.
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No problem, I have done a lot or research over the past 2 years and had a lot of different experiences with this BCG. Though I am not a doctor I will share anything that I have found out with you if you have questions. Please feel free to ask. Eddie
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Thank you, Eddie! I appreciate your reply and information. This Forum really helps me get information that is not readily available on the web.
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Hey Sue, I started this thread just a little over 2 years ago when I was diagnosis with HGT1 Papillary Urothelial Carcinoma (Bladder Cancer). I have just finished BCG Treatment 21. All results have been amazing so far. I remember that my first 3 of the first series of 6 treatments were kind of uneventful but starting with the 4th treatment is when I started experiencing symptoms. Hang in there, BCG is the best first option. It has been working for me and it can work for you. The success rate is very high. If you have questions, don’t feel embarrassed to ask them. We have all been thru numerous situations and we will freely share our experiences with you. You are on the right path, stick with it. Eddie
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Hello all,
My journey hasn’t been a short one so far. Diagnosed with Ta NIMBC in Oct 2024. I just had my second BCG treatment. I have been reading where many patients have light to severe discomfort during these treatments, at least for a few days. So far, I have had no adverse side effects and am wondering if the BCG is really working. My doctor and NP say not to worry. But you all know how that goes. Wondering what you all are experiencing.
Thank you and Blessings to you all. Sue
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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?
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.
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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