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BCG question
How long do I have to wait after getting the BCG instilled before I can drink water?
Just got my first BCG treatment today. Was fine so far except I could only hold it for 50 minutes and I was getting shooting severe burning pain. The pain would just hit for a split second, then it would go away and I’d feel like I needed to void, then the feeling would pass and then it would happen again. Probably 6 or 7 times that happened before I finally went and voided. Then it was pretty significant burning during the beginning of voiding.
No more pain after that but I was a little shaky.
Any advice?
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.25 Replies-
I’d certainly discuss with his urologist. I’m guessing (but don’t know) that 48 hours after is a long time to be a reaction. My reaction was the night I got the 2nd BCG. The antibiotics and Tylenol seemed to work though as my fever broke about midnight last nite. Even if it is a reaction, I think dose adjustment can be made.
Hope things go well for your husband!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Mike
I’ve read your posts with interest. Steve had his first BCG 9 days ago and forty eight hours after developed high fever, chills, headache, pain in kidneys, stomach ache. He looked and felt dreaful. He couldn’t even get out of bed to see gp on the Monday (he had the BCG on the Friday). I dragged him to docs on Tuesday. he had a temp of 40 deg and he was told he had a severe kidney infection, was prescribed antibiotics. He was better by Friday. Went into hospital to see Urology nurse for second BCG who wouldn’t give it because of his ‘infection’. Although when she ‘dipped’ his pee it was clear, except for blood traces. She said she doubted it was a BCG reaction and was far more likely to be a kidney infecton. He is due to get his next dose this Thursday. I am convinced he may well suffer again, so Christmas is looking bleak for him – although I may be wrong. If he does suffer again, then we will know it is a reaction to the BCG won’t we?
Rab
GP aware of haematura in Jan 06
Diagnosed BC Nov 06
T1G3 with CIS
Age 46, Smoked since 15, gave up at diagnosis
Good question. I have the same question and plan to ask next week. The doc that did my bcg this time (one of the others in the group and not my usual urologist) said there was some microscopic blood in the urine in the test prior to my bcg. SO…..it could be that it got into the blood stream. His thought was that it wasn’t enough blood to intefere with the treatment.
My usual doc delayed my first bcg treatment because of blood in the urine, thinking that I still needed a bit more healing time after the TUR.
Of course my other question is why is there still blood in my urine? The TUR was Oct 31 and the last bcg was 2.5 weeks ago so it seems like there shouldn’t be blood anymore.
Maybe, when the do the test and say there is a little blood, I need to get up and go home and let them know I’ll schedule another one on the end and skip this treatment.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Mike,
I am curious to know if this reaction is due to a sensitivity to BCG or if perhaps there was an abrasion in the bladder and the BCG entered the blood stream.
I wonder if there is a way to know. :-/
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Yes. He said it would kill the BCG and that I might not be able to take BCG. He felt I may have a systemic infection from the BCG, which is why he prescribed that. My fever broke around midnight last night but had remained between 100.1 and 102.6 the whole day. I felt a good bit better after the first CIPRO but it might have been more related to the Tylenol I took rather than the CIPRO because it brought the fever down into the 100 range. Fever climbed back up and I took more Tylenol.
I’m really not sure if it was a BCG infection or just a reaction.
I feel MUCH better today. I DO NOT for one second believe him that I’m that one in a zillion that can’t take BCG though. I’ll talk to my urologist next week about dose reduction. By Lamm’s protocal information it seems that even a 1/100 dose works better than nothing and I would rather not do chemo for CIS as it doesn’t do as much good as BCG.
It certainly was a nasty wake up call for me and for my wife. It was the first time I felt like a cancer patient and it wasn’t fun. Not that I expect this to be fun, but the beauty of the BCG is supposed to be (I thought) that you don’t get all the nasty side effects and that I can minimize the perceived danger to my family and friends.
My urologist and I are certainly going discuss this in detail next week when I talk to him about the result of my follow up CAT scan (get that Monday…so probably by Wednesday). I think I’m on half dose already but there certainly seems to be a LOT of room for reducing that given my apparent sensitivity to the BCG.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Hi Mike,
I hate to say this but Cipro may interfere with BCG. See this info:
http://blcwebcafe.org/bcg.asp#drugsNot all experts agree on this subject, but it can’t hurt to question your doctor about it, see what he knows.
Wendy
Thanks Wendy. The on-call urologist just called me. He’s putting me on Cipro right away and said I’ll have to review with my regular urologist about maybe needing to stop bcg. I’m certainly voting for reduced dose before we go that extreme but he said there are some other tests that can be done first.
Temp went from 100.4 to 101.1 in 20 minutes. Just took some Tylenol and will be heading out to the pharmacy to pick up my Cipro.I REALLY want to do this BCG thing if at all possible. Will send an update after talking to my doc next week.
Thanks again,
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
I suspect that if you also have fever you’ll be put on serious antibiotics immediately. I hope it will all pass over, and obviously you’re sensitive to BCG and will probably need to lower the dose in order to complete the treatments.
I saw in your earlier posts that your treatments were delayed because of blood in the urine. That’s wise. You also mentioned taking pyridium which would mask gross hematuria. Good point…so can you check it with hematuria strips to make sure you’re not bleeding, or have the doctor investigate and rule out blood in the urine now.
BCG should never be given in face of symptoms from the last dose. There is such thing as ‘too much of a good thing’ when it comes to immunotherapy. Lowering the dose is part of tailoring the treatment to fit the person. Skipping a dose is necessary sometimes and won’t mess with the ultimate (possible) effectiveness of the BCG treatment.
Be very careful and take good care of yourself. I hope the doctor you’re expecting to hear back from knows his stuff when it comes to the subject of BCG!
Wendy
Second BCG yesterday. Managed to hold this one in for 1 hour and 4 minutes. As soon as I stood up to get some water and juice, I started getting spasms. Burned like hell at the start of voiding and there was a good bit of blood in the first five or so voids. I took a peridium so I wasn’t sure about the blood after that but it still burned quite a bit every time I got up in the night.
Today, I took my wife to get an MRI on her knee and about passed out in the waiting room. My body produced a massive amount of seat and I was drenched. It passed after about 15 minutes but I was pretty cold and had the heat on blasters on the drive home. She couldn’t drive because of the valium she took prior to her MRI (claustrophobic). The dizziness was gone but she said I was pretty darn pale when she came out. Starting having chills last night but I piled on the blankets each time I got back from the bathroom.
The Tice BCG document says to call the doc if you get bleeding, burning, urgency, chills, and I seem to have all of them. Anybody know what the doc is going to say when the on-call gets back to me? I’m guessing they just say to rest and relax.
Thanks,
MIke
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Hello that is the way I did my first round of BCG. the ride home then 15 min each side and back. This did not work next turb Doc wanted me to do an RC but it was still a T-1 so I went to a cancer center top uro. When I did my second round of bcg and interferon mixture. this uro had me stay in the office if I wanted and did my rollarounds rite then in there. Peed before I left the office.you see your kidneys produce 50 cc of urine into the bladder every hour. So it makes good since to do it rite away so the BCG is not deluted. I just had my turb after this round on Monday no tumers at all I will get path report I hope by the end of today. I will be making a seperate post on this last treatment I went thru and the finale results. Dam I hope I am clear of this poisen, they call cancer. Don
Hanging in there!
Thanks to all for the different suggestions. Burning gone away now. Might have been some from the cath but I think some from the bcg stuff. The water, water, and more water approach seemed to work fairly quickly.
No other side effects at all except for that burning and shooting pain stuff. Since the bladder was barely healed from the TUR, it could have aggravated that area which caused spasms.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Hi MMC. Well you had your 1st bcg treatment WOW thsi is what i did i came home it took about 40 min. to get home then I layed down on one side for 30 min. then turn on the other side for30min. then the other side for 30 min. then the other side for 30 min. then go urinate then drink mass quantities of cranberry juice and i didn’t even like cranberry juice I thought it was somithing women drink for a yeast infection man I did not know what i was missing i love cranberry juice know. Well after you urinate then drink lots of cranberry juice and water to flush out the bcg I had no burning when I had the bcg guess I was lucky? On one time i hurt was aftet my treatment and the 6 hour wait to flush out the bcg I went on a 6 hour trip to my Son’s mother in law’s funeral she died of cancer the funeral was on my 51st birthday . what a bummer…
Wildbill
Bill H
dob 4-19-1955
Live in la.ca
Plumber 1972—-forever
12 grandkids
5 great grandkids
BTW, Mike, I’m glad we helped!!!! :)
I’ve had nine BCG’s and no more for 5 more months.
If you need more input, we are always here, (or I should say we’re around most of the time)
Please let us know how it goes…..
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Greg,
I am totally intrigued :-X
Ro – Read the packet! I think that IA for BCG or MytomycinC spillage is neutralise with mild acid and wash surface spillages or skin spillage with mild acid – eg. vinegar!
What the heck does “IA” mean? Is that like an antidote? (sp)
Can we infer from this that an alkaline bladder environment is conducive to anti-bladder cancer, or are we just “whistling Dixie” here?
Ro
Hi,
IA means Immediate Action.
Can we infer from this that an alkaline bladder environment is conducive to anti-bladder cancer
NO wrong inference – an acid wash neutralises MytomycinC and also I think BCG. No inferrence is given or implied by this that alkalinity or acidity has any causal or curative effect on the cancer.
or are we just “whistling Dixie” here?
Petomaines I know of but this one is a new one on me – that could be the star turn ;D ;D
Whatever Ro, Ro, Ro(s) your boat ;)
Regards,
Greg L-W.
Hi,
dunno – maybe it works like draino ::)
I’m sure we’ll know if you try it (NO emoticon for ducking at speed :()
I’m not sure to what extent fluid alkaline or acidic properties are absorbed into the blood stream for the kidneys to strip out with the uria etc.
Let us all know if it burns and if it does it was someone elses idea ;) ;D
Regards,
Greg L-W.Sign In to reply.
