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Hello …
I just received a call from my Urologist office.
They want me to start my first course of weekly BCG treatment tomorrow, Wednesday 9 September.
I am a little surprised since it is only about 2 weeks since my last TUR. Should that concern me?
I know if I drink fluids I cannot hold my bladder for 2 hours yet.
I haven’t tried not drinking to see how long I can go. But during the night it seems it is less than 2 hours.I would appreciate any advice on what to do before, during and after treatment. How do I deal with it between treatments?
Thanks
DDep
Hi DDep
I will share with you my experience with my 1st set of weekly BCG treatments.
BCG treatments started 6 weeks after my 1st Turbt. My Uro recommended this length of time as he wanted to insure my bladder had healed from the Turbt and I was having no urgency issues.
I was given an instruction sheet from the hospital prior to beginning treatments.
Prior to each treatment I was told to reduce fluid intake beginning 2 hours prior to treatment.
The treatment itself did not last very long, maybe 1 minute.
After the treatment, I was sent home, and told to lie on my back, both sides, and stomach for 15 minutes each.
I was told to not urinate if possible for 2 hours from the start time of the treatment, but NOT hold the BCG for longer than the 2 hours.
I was told to begin drinking water about 1 3/4 hours after the treatment.
The washroom was only to be used by me for the next 6 hours.
I was told to urinate while sitting for the next 6 hours. Was hands with soap and water after, use paper towels to dry hands.
After each void I was told to put 1 cup of bleach into the bowel and then flush 15 minutes later.
I was told to drink 1 glass of water per hour for the next 6 hours.
After the 6 hours clean the toilet with bleach with gloves on.
I did encounter some urgency and burning the next day, but not too bad. By the 2nd day I was 100% back to normal.
All of my treatments were on Friday afternoons, so I had the weekend to recover and did not lose any work time.
The above are just my experiences, and my 1st treatments began in 2006.
Hopefully others will also share their experiences with the treatments.
Good luck with your upcoming treatments.
JackHi all,
I am still concerned about having BCG starting just 2 weeks after reTUR.
I spoke to my Urologist’s assistant and she said that the Doc wanted me to start BCG “ASAP”. She said, she would speak to the Doc to confirm that I should start tomorrow.
My response was that unless I hear otherwise I will be at the clinic tomorrow as scheduled.
I Searched BCCanada and found another discussion about an Alberta Gentleman (Ktorg) also getting different approaches. the Mayo clinic recommending starting 2-3 weeks after TURBT. However, everyone else starts 4-6 weeks later.
What should I do?
DDep
Hello DDep
My BCGs start 4 weeks after TURBT. Urologist explained that this gave the bladder time to heal. After my June surgery my bladder didn’t feel right. I get mild cramping when I have tumors. The cramping goes away after surgery until the next round of tumors show up. After June surgery the cramping did not go away. Doctor did another scope and there was another tumor. Removed that day (doctors do this when the tumor is very small) and I started BCG the following week. So, this can happen.
The biggest things I recommend: relax; stop stressing; stay close to a bathroom; put your feet up for the day; and DRINK LOTS OF WATER once you are past the two hours after treatment. If I don’t drink lots of water I have more discomfort. I am a big water drinker already so I do 24 ounces an hour for the first three hours then back off to 16 ounces an hour for the remaining six hours. This volume may not be right for everyone but I find this volume virtually eliminates all discomfort.
One other thing: some people react to BCG. If you do, it may be due to the BCG happening so soon after surgery. The staff doing the treatment may not be aware of how soon after surgery it is being done.
BCG only lives for two hours once it is activated. BCG is stored dry then rehydrated before infusion into the bladder. BCG also works better if it is not diluted by urine thus the requirement not to drink before treatment. Some literature recommends not drinking fluids 4 hours before treatment. You may want to try this. I also relieve myself before treatment.
Also, have you thought about a second opinion?
Take care
I’m sorry that I missed this post earlier. I was told that it is necessary to wait 3-4 weeks to allow the bladder to heal. If you are concerned I suggest having another conversation with your uro and ask why he feels you need to go ahead so soon. Ditto for you if you are still bleeding from the TURBT, I would definitely be thinking carefully about proceeding and talk to the doctor first.
Let us know what happens. Take care.Thanks for the response.
I had my first BCG yesterday.
But, before installation, I repeated my concern. The nurse called the attending urologist. He reviewed my file.
I told him that my only concern was having the BCG done 2 weeks after my reTUR.
He said that the reTUR is not as extensive as my first TURBT.
The last time I had visible blood in my urine was the same evening of my reTUR (25 August). The day after my reTUR, 26 August, I had no visible blood in my urine.
The Uro’s ensured that there was no blood still in my urine.They kept me in the hospital for 30 minutes after installation. I flipped 10 minutes on back, front and each side. After 40 minutes I left. I emptied my bladder as soon as I could after 2 hours (2 hours 25 minutes). Drank lots of water.
After 36 hours I am still feeling fine. I wonder if the BCG is even working?
DDep
Hello DDep
My first round of BCG, treatments 3 and 4 were done wrong so it is something I am a little paranoid about so, checking on the following for you:
– did you do rotations for the first 2 hours? This is the period of time the BCG is alive. Unless you are actively moving so the BCG sloshes around, you need to do the rotations. If traveling home is more than 10 minutes, suggest you make arrangements to do the 2 hour rotations at hospital.
– did the nurse mix the BCG while your bladder was draining? This maximizes the 2 hour period and gets the best effect from the BCG.
– did the nurse let your bladder drain once the catheter was in and before instilling the BCG? Diluted BCG from urine is not the best.My first time the hospital kept me in for the first hour.
The water will be why you are feeling fine. You probably noticed that your urine was quite cloudy between hours 2 and 6. This is the lining of your bladder coming out and this is exactly what the BCG is supposed to do.
If you were going to have a negative reaction to BCG it would have already happened. In my opinion, as long as you consume lots of water, you will feel just fine.
FYI: in the future, after you are an old hand at the BCG treatments, you will look back at this and shake your head at your initial worries and concerns. I think we all go through this process with BCG because it sounds so scary and yet, in reality, it isn’t as long as you follow the protocols.
Take care.
Thanks Cheryl
In accordance with the advice I got on this site I refrained from drinking anything 3 hours before installation – except for taking a little water along with 2 tylenols 1 hour before.
Before I spoke to the Urologist the Nurse handed me a “Guide” book. I was given a few minutes to read it. I then spoke to the attending Urologist.
I voided immediately before installation.
I was catheterized.
The nurse mixed the BCG just before she “fed” it in. (She was dressed like she was going to walk through plutonium).An extract from the “Guide” stated:
” – You will be asked to hold the medication in your bladder and not to urinate for two hours after the installation. The BCG is most effective if kept in contact with the bladder. It is not necessary to lie down after the procedure, walking or sitting will allow the medication to coat the bladder. You can get up and get dressed.
– You must remain in the unit for 30 minutes after your initial treatment with subsequent treatments you may go home.”Nevertheless while I waited for the 30 minutes, I took 40 minutes to roll around – 10 minutes per side. I then went for a 30 minute walk.
I downed 1 litre of water (2 x 500ml bottled water) at 1 hour 50 minutes. Then another litre at 2 hours 15 minutes to encourage a wee-wee. Before 6 hours was over I must have downed 4 to 5 litres of fluid. With that much fluids I returned to my 20 to 30 minute “hold time” before having to go. I did notice some little cloudiness each time I voided after the 2 hours. But, as I say, for most of the day yesterday, I was peeing every 20 to 30 minutes.
I am continuing to drink a lot to avoid my only fear … UTI
All in all it has been pretty mild so far (in fact, – nothing abnormal). Bluebill said that I may feel it more after my 4th, 5th and 6th installation.
I really don’t mind. It is a positive experience. I need it and want it ! In fact, I am rather upbeat about the BCG ! I just hope it works !!!
DDep
I’ve had people tell me that they didn’t feel much for the first few treatments and then started to notice things. We’re all different. Me? I was the opposite in that the very first treatment knocked me flat but I’m an exception because I’m very very sensitive to meds. I even feel a bit loopy after a freezing for a filling, so go figure. Good luck going forward. It will do its thing if you do your best to get through it.
Just wanted to close the loop on my early BCG experience.
I completed my 6 week induction course last Wednesday.
I should be having my 3 month Cysto sometime towards the end of November – No specific date set yet.
As far as the BCG goes, here is my experience so far:
Pretty straight forward procedure.
They catheterized and drained by bladder before installation (Notwithstanding that I voided before going into the clinic). They said they do this, in part, to make sure there is no blood in the urine. They mix the BCG just before they instill it.My symptoms were and are the following:
1) Slight burning upon urination up to 6 hours after. Nothing really after that
2) After my 4th installation – systemic tiredness. My energy level is low and that continues up until today. I get fatigued quickly. It is difficult to do minimal work-outs. Going for a walk is about all I can do.
3) After my 4th installation – systemically, (i.e. all the time) my bladder continues to feel slightly distended.
I still have frequent urination (day and night – i.e. nocturia). I do not know whether the tiredness is the result of a lack of uninterupted sleep or directly because of the BCG.I have read, that, up to around 60% of patients respond to BCG. I hope I am in that group. Unfortunately there is the 40% side.
My question to you all is: Have any of you had similar symptoms that continue on?
DDep.
Hi DDep!
I had 21 BCG treatments between October 2008 and January 2012. After my first TURBT I had a set of 6 October/November 2008. Everyone is different with BCG. I’m very sensitive to meds and felt side effects right away even after the first treatment. During the first 6 I would experience some burning while the BCG was in me and obviously ouch and double ouch when expelling it. I was okay for about an hour afterwards and then felt so sleepy. I would then go to bed for about three hours. I ran a low grade fever and had some fatigue, chills and muscle aches that lasted for about 2 days in the beginning and was pushing 4 days by the time the 6 weeks was up. My bladder and urethra were pretty sore by the end of the 6 weeks. I also felt fatigued and sort of drugged, I guess similar to chemo brain for about a month afterwards.
When I had the second set of 6 in 2010 followed by 3 sets of maintenance treatments thru 2011 ending January 2012 I found that the same side effects kicked in almost right away. While I was doing the 2 hour treatment my bladder protested plenty. I had to pack hot blankets or a heating pad around me to settle the spasms. I found my bladder sensitive after each set of treatments but peppermint and chamomile tea along with lots of water seemed to really help. I stayed off of anything that contained caffeine. My fever, fatigue, muscle aches increased with intensity with each set to the point my uro finally agreed to reduced the dosage to 25% for the last 4. I told him I had surpassed what I could tolerate discomfort and pain wise. Regular pain killers were no longer effective and I was honestly afraid of getting really sick from the BCG.
As for lingering side effects…I found for most of 2011 and to the latter part of 2012 I had lingering fatigue, sporadic muscle aches and the chemo brain. It just gradually lessened with time. I rested more and took Aleve to help with pain. Not everyone has the adventures that I had with BCG because as mentioned I’m very sensitive to meds and need to be careful. I get woozy from doing a simple dental filling.
My only suggestion is just rest when you need to and the side effects should start to clear up. You will need to mention things to your doc should your bladder really start to get painful, you pass blood long after it should have cleared and if side effects all of a sudden start up again. That could mean a systemic BCG infection for which you would need treatment. Hang in there, it does get better. As Jack says BCG=Bladder Cancer Gone
Hi DDEP
I have personally spoken to hundreds of patients that have gone through the BCG treatments as I did. Your side effects are a mirror image of the far majority. In most but not all cases, the side effects primarily fatigue, and urgency started after the 3rd or 4th treatment. In my particular case the side effects did not start until the 13th treatment so my case is more on the minority.
In my case the fatigue did begin to improve after about 3 months following my last treatment. The urgency was gone after a few weeks.
If you continue a period of time with urgency and you start to get slight burning while you urinate, get checked for an infection.
Good luck with your upcoming cysto.
All the best,
Jack
BCG =Bladder Cancer GoneHello DDep
I agree with Jack and MarySue. Your symptoms sound very familiar!
One huge, huge thing I have found to alleviate symptoms: water, water, water. I found this out when I accidentally went 1 1/2 hours after a treatment without water. Extremely painful to urinate and there was blood. As long as I do lots of water, it is a piece of cake. With my last round of BCG that started Oct 19, I also found out that being dehydrated at the start is not a good thing. The body hogs too much water thus don’t urinate enough. I spent 5 hours the day before treatment push mowing in my yard (yes we have riding mowers but this was stuff the riding mowers couldn’t get at) and ended up dehydrated even though I was drinking water but obviously not enough.
Water routine I do on the day of treatment: 24 ounces 5-6 hours before treatment; no water for the 4 hours before treatment and 2 hours after treatment; then 32 ounces every 1 1/2 hours for first three hours; 24 ounces every 1 1/2 hours until the 6 hours are up. I also book my BCG in the morning so I’m not running to the bathroom all night after treatment. Yes, you run to the bathroom a lot. At least every hour and sometimes more frequent. Second day I go back to my usual liquid consumption of 14-16 cups of liquid a day:6 water; 6 green tea; 4 milk.
I also experience the chemo brain thing, low grade fever, chills and muscle aches for a couple days after a treatment. The chemo brain thing drives me crazy. Not just the forgetting of words but the impact it has on caring for my husband. My husband calls me his body guard because of the damaged short term memory that he has. Now add to this my chemo brain and it is not a pretty picture when neither of our brains are working right!
Anyway, DDep, it will pass. Remember it is temporary and this will help you get through it easier.
“To everything there is a season and a time to every purpose…a time to be born, and a time to die…a time to break down and a time to build up; a time to weep and a time to laugh; a time to mourn and a time to dance…”
I challenge anyone to identify where this quote excerpt comes from.Take care
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