Homepage – Forum › Forums › Non-Muscle Invasive Bladder Cancer › Soon to be starting BCG treatments and nerves are setting in…
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Petra.
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June 11, 2022 at 11:12 am #43280
Petra
ParticipantPaul had his 2nd successful, relatively pain free TURBT on May 16th and is scheduled to start his BCG treatments in the next week and a half.
We have been researching and reading through peoples experiences and we are a wee bit nervous to say the least! Although it seems to be a relatively simple procedure, the side affects and the risk of contamination are a major concern for me. I am trying not to worry and convincing myself that everything will go fine…
As far as the logistics of the treatment, we have 2 bathrooms in our home, so keeping Paul isolated shouldn’t be too much of a problem. I am wondering how many hours/days should we KEEP him isolated for bathroom purposes? He will be flushing with bleach and i will be cleaning with a bleach solution, but we are on a septic system and are concerned about the amount of bleach we will be flushing down there. Do i need to wash the bed sheets every day? I am going to keep a separate laundry basket for him and wash his clothes every day, i am just wondering how overboard i should go? I don’t want to take any risks, especially with my cats involved too!
My other concerns are with Paul’s reaction to the BCG itself. He is a rule breaker, always has been and so the norms aren’t always the norm for Paul. He has already been through so much, I just want him to have safe and painless procedures from here on in… I know I’m asking for a lot, but that’s my wish!
If anyone has any tips, advice or suggestions, please do let me know…
Wishing you all the very best,
Petra, Paul, ChessNut and TeddyBear.
“Ode to our Fur kids who can live only in the moment!”
Allensongmusic.comJune 11, 2022 at 7:25 pm #43290Nightingale
KeymasterHi Petra,
I know you indicated that Paul is a rule breaker, but in the case of BCG he should make the effort to follow the rules. There are many in our Support Group who are receiving BCG and they can tell you about their experience. With your permission, I would be happy to share your post via email to my distribution list for the Support Group and see if we can get you some answers ahead of the meeting on June 23rd. Let me know if you’re ok with me sharing to the Support Group.
My best,
June 11, 2022 at 8:11 pm #43295Petra
ParticipantHello Nightingale,
I think you misunderstood my meaning for Paul not following the rules… he is an excellent patient and does as he is told, especially when it comes to his health. I meant that his body doesn’t always follow what is considered the ‘norm’, hehe sorry for the misunderstanding.
We would love to hear as many experiences as possible, so that we can learn what to expect, so yes please do share my post, but would you mind clarifying that Paul doesn’t want to go against ANY of the recommendations!! It’s all a little bit scary and we would appreciate ANY and ALL information.
Thank you and I look forward to the next meeting. All the very best
Petra, Paul and Furmily.
“Ode to our Fur kids who can live only in the moment!”
Allensongmusic.comJune 11, 2022 at 11:15 pm #43296Nightingale
KeymasterHi Petra,
Ah! Thanks for the clarification! I will make sure when I send out my email that I am clear about it.
Enjoy the rest of the weekend!
My Best,
June 12, 2022 at 11:09 am #43298DJK
ParticipantHello Petra,
I’ve had my first two BCG treatments, my third was postponed because I got some kind of infection in my sinus/throat/or maybe a tooth. I still don’t know what it was but my GP put me on antibiotics, so the cancer clinic decided to wait a week and assess at that time when we proceed. Thinking about it now, I’m wondering if the infection I got could be related to the BCG treatments (?), I’ll ask them this week if that is possible. Anyway, the antibiotics are slowly clearing up the infection and I hope to restart treatments on Thursday.
I also am on a septic system and understand the concern with pouring that much bleach down the drain, it can kill the bacteria in the tank that makes the system work. I have to confess, after the second treatment I thought I would be smart and pee outside in a bucket with some water and pour the bleach into that. Not a good idea, the bleach fumes were overpowering, and now I have a half gallon of liquid bleach/urine/and dead BCG that I need to figure out how to dispose of, I’ll likely pour it down the drain after all. I didn’t do that any more after the bleach fume experience, I finished that session with the toilet. So, what I will do with my septic is add a strong dose of bacterial supplement such as Septo Bac or something similar to help offset the bleach. Then, when my treatments are done I will have the tank pumped out and restart the system (I’m due for a pump out before winter anyway).
The treatments generally for me have not been a problem, I had the same concerns as you and your husband. I’ve only had two treatments but am not as concerned about it now as I was before. The side effects and managing the urine for half a day have been nothing compared to other friends of mine going through chemo for other cancers. I consider myself blessed.
DJK
June 12, 2022 at 11:48 am #43299Petra
ParticipantHi DjK,
Thank you for popping in and sharing your experience with BCG treatments thus far, we appreciate the insight. I do hope you are recovering well from the infection! It does seem a little coincidental doesn’t it that at the time you are getting your treatments, you also get an infection around your sinus area. Please do share whether or not your doctor thinks there might be a relation to the BCG and your infection, if you can. I also wonder, if because you got an infection, are you more susceptible to passing on this infection to others close to you? I do hope you are able to restart your treatments this coming week.
Hehe, I’m sorry i had to giggle a little bit on your description of a gallon bucket full of contaminated liquids and what to do with it all!! We were also wondering if one could just pee outside, but it seems like this TB virus can live outside of the body for up to 6 months, if not subjected to sunlight! So that option is down the toilet, so to speak! Hehe.
We do use SeptoBac on a regular basis and we have a large septic tank, so hopefully these bleach treatments won’t do too much damage. We also read that vinegar (a 6% solution) will work in killing this bacteria, has anyone else ever used vinegar rather than bleach? Paul burnt his hands super badly many years back and has a love/hate relationship with bleach, mostly hate! So if vinegar is an option, i would rather go that route.
I pray the side affects will be kept to a minimum, but you’re absolutely correct in saying that others have it way worse! Immunotherapy and letting the body do most of the work, is the best first approach for sure. Those having to deal with Chemotherapy are having a much harder battle. I wish everybody ALL THE BEST in your treatments’! 🙏
Also feeling Blessed,
Petra, Paul and Furmily.
“Ode to our Fur kids who can live only in the moment!”
Allensongmusic.comJune 13, 2022 at 9:05 pm #43305marysue
ParticipantHi Petra:
I can’t remember if I mentioned it in any of our earlier discussions but I have had 21 BCG treatments over 3.5 years from 2008 – 2012. To answer some of your questions:
1) It is recommended that you use 1 cup of bleach per void for about 6 hours after treatment. Pour bleach into the toilet and let sit for about 15 minutes and then flush with the lid down. Paul will need to avoid using a public toilet i.e. like at a shopping mall for about 6 hours post treatment. The main thing to watch out for is to keep your pets out of the bathroom at this time. As mentioned if you have a second bathroom that Paul can use for himself for the 6 hours that is great. We have 2 bathrooms in our house so I just took over the upstairs one for the 6 hours. After the 6 hours were up, I gave the bathroom toilet a good cleaning just to be sure. The risk of contamination is low but precautions are still recommended all the same.
2) If he is not staying at the clinic for the 2 hour duration of holding in the BCG and you are driving home, I would suggest that you carry a small bucket with a lid so he can void into it if he can’t hold the BCG. I would not recommend peeing outside at this time.
3) If you are concerned about Paul accidentally wetting the bed post treatment I would recommend that he temporarily wear men’s depends or have a mattress pad under him. You would only need to wash the bedding if he accidentally voids onto the bedding while doing the 2 hour BCG treatment. There is no need to wash the bedding everyday unless it is soiled. If he doesn’t have any continence issues you can just follow your normal schedule for changing your bedding.
4) The things I recommend keeping separate are towels. While he is undergoing treatment have him use his own towels and wash separately. Risk is very low but I kept all my own towels separate. Same for any facecloths used to wash down below. Keep these items away from pets.
5) If you decide to be intimate, have him use a condom as there may be residual BCG in his urethra.
6) The biggest thing with BCG treatments is to drink lots of water post treatment and for the next 2-3 days to help flush the excess drug out of his system. The drug is only useful for the 2 hours it is in his bladder. After that, the more you drink the faster the drug exits your body. I used to drink about 50% more than I normally did. Avoid caffeine as it can irritate the bladder during BCG treatments.
7) As for side effects – as you may have heard they vary widely. I had quite a lot of them and they got progressively stronger as time went on. Paul won’t know how he will react until he has the treatments. The majority of people feel like they have the flu for a couple of days post treatment. Common side effects are fatigue, headache, chills, low grade fever, muscle and joint pain, bladder irritation. The main thing to watch out for that would signal trouble is high fever and severe chills and lots of blood in his urine. The high fever and severe chills can indicate a really bad bladder infection or systemic BCG infection. Both would need immediate medical attention. It is normal to have a very small amount of blood in the urine. Some people get this because the BCG irritates the lining of the bladder wall but if the amount increases or there is a lot of pain, then it needs to be checked out. Also, if a bladder infection does happen and antibiotics are required, Paul would most likely be asked to postpone his BCG treatments until the infection resolves. Antibiotics kill the BCG rendering the treatment useless so that is why treatments get postponed. Any side effects that seem unusual should be reported prior to the next treatment. It does not usually affect the outcome to postpone treatments but that is a question best answered by his doctor.
8) As for your septic tank, I suggest calling the company that pumps out your tank to see what they say about the bleach use.
I hope this information helps. I’m glad that Paul’s 2nd TURBT went well. You did not need a repeat of the first one. Take care and best of luck. (((HUGS)))
June 13, 2022 at 10:02 pm #43307Stever
KeymasterPetra,
I only had 6 BCG treatments but my cancer was aggressive and I ended up having it removed. I had no side effects from the BCG but everybody is different.
My urologist wasn’t too worried about the BCG as I didn’t use the bleach nor worry about toilet issues. He did say to drink lots of water which I did. My wife and I used the same toilets and maybe we were lucky as neither of us had any side effects.
Hopefully the BCG treatments will be successful and no further treatment will be necessary other than monitoring.
stever
June 14, 2022 at 7:41 am #43309Thistle
ParticipantGood evening Petra.
I live on a farm in Alberta with a septic system. When I had my BCG treatments, I had to ask for a small pail to collect the urine/BCG output for 6 hours after treatment. Seal the pail and take back to the hospital on the next treatment. This way we did not have to worry about the septic system and bleach. I received 6 BCG treatments and went through this procedure each and every time. I hope this information helps.
Thanks, have a great night
Thistle
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This reply was modified 2 years, 8 months ago by
Nightingale.
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This reply was modified 2 years, 8 months ago by
Nightingale.
June 14, 2022 at 1:50 pm #43313Petra
ParticipantHello MarySue
Lovely to see you again 😉 I do recall from our conversations that you had had a number of BCG treatments, I couldn’t remember how many… 21 is a LOT! But you’re here on BCC to share your story and for that I am grateful! 🙏 I hope that Paul is able to sail through these treatments and not have issues like you unfortunately had.
These are excellent suggestions you have made and i will be keeping them as a reference, thank you! Thank goodness for BCC because and all of your input, as our medical professionals around here, don’t seem to know much about BCG treatments and how to manage them.
Have a wonderful week and many hugs coming your way 🫂
Petra, Paul and Furmily.
“Ode to our Fur kids who can live only in the moment!”
Allensongmusic.comJune 14, 2022 at 2:03 pm #43314Petra
ParticipantHi Stever
Thanks for popping in and sharing your experience. I am sorry to hear that your cancer was so aggressive and had to have such an invasive surgery, I pray you are doing well now.
Excellent to hear you and your wife had no issues while dealing with your BCG treatments, that is reassuring as so many people tend to suffer some sort of side affect.
I am surprised that your Urologist was unconcerned about the BCG and it’s potential for causing others harm, but I am really happy that you and your wife had no issues. I think I would rather err on the side of caution and am going to put Paul in temporary isolation, just to be certain.
I’m hoping that he won’t have to go through too many treatments in the future, but if it keeps this monstrous cancer at bay, we will do what we have to do.
All the very best to you and your family,
Petra, Paul and the Fur kids.
“Ode to our Fur kids who can live only in the moment!”
Allensongmusic.comJune 14, 2022 at 2:11 pm #43315Petra
ParticipantGood morning Thistle
Thank you, yes, your information is very helpful. It’s an excellent suggestion! I will be enquiring with our local hospital as to whether or not they can accommodate this.
Wishing you all the very best,
Petra, Paul and Furmily.
“Ode to our Fur kids who can live only in the moment!”
Allensongmusic.comJune 14, 2022 at 2:16 pm #43316Petra
ParticipantHi Nightingale
Thank you for going the extra mile for me in this BCG topic. I am so grateful for all the feedback, every little insight is going to help us proceed with confidence.
I look forward to our next Support Group zoom meeting. Paul is supposed to be starting his treatments next week, so I hopefully will be able to update you all as to how our first session was a complete success 🙏!
See you soon. Have a great week 🙂
Petra, Paul, ChessNut and Tedwardo.
“Ode to our Fur kids who can live only in the moment!”
Allensongmusic.comJune 14, 2022 at 3:15 pm #43320BluenoserEW
ParticipantHello Petra,
I had about 12 BCG treatments in 2016/2017 before needing to have my bladder removed in 2018. Everyone responds a little differently to BCG; for me, I felt achy and tired for 2-3 days.
There are a lot of good comments here and my comments would pretty much echo marysue’s. The one thing I would add is that, although I don’t have a septic tank, I didn’t want to use bleach for environmental reasons. Instead, I used a product by nature clean. It is oxygen bleach and is septic tank and grey water safe. And it’s made in Canada! It might be worth checking out.
I wish Paul every success with his BCG treatments. All the best to all of you.
BluenoserEW
June 14, 2022 at 4:12 pm #43322Petra
ParticipantHello Bluenoser,
thank you so very much for sharing your experience, I do hope that you are fairing well, losing his bladder really is one of Pauls worst nightmares! A very scary experience and i feel for you!
Being achy & tired after the BCG treatment, seems to be fairly common and good to know what to watch out for. It does make me wonder that you are all experiencing a mild form of TB? I guess it is kind of to be expected with all things considered. I would think that the bladder would absorb some of this vaccine?
Great idea on the use of the oxygen bleach! Would this be the same as Oxyclean? I have some downstairs that i sometimes use for my laundry. I wonder if this would be the same thing?
I agree, there’s a lot of great comments and after suffering through 21 treatments, i consider MarySue to be the veteran in these affairs and will follow her advice for sure.
Paul and I thank you and hope that you stay strong and healthy. All the very best
Petra, Paul and Furmily.
“Ode to our Fur kids who can live only in the moment!”
Allensongmusic.com -
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