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1st Experience with BCG
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Lauren: that was about my same response with that treatment, the only thing I can say is that it will get better.
Rudy
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Had my 6th treatment this morning. Now I’m bleeding moderately and peeing razor blades. What a change from the first 3 or 4 times…. so, needless to say, I’m not looking forward to my maintenance courses of this stuff next year….but in 12 weeks, if there’s no evidence of cancer, I guess I have to say it will be worth it!
Lauren
TaG1 12/05
3 recurrences
BCG started 9/09
Wow, 22 months! Congrats. I never went more than 18 months without it coming back so far, without any BCGs. I guess I’m on that train now…..hopefully with results as good as yours!
TaG1 12/05
3 recurrences
BCG started 9/09
Fatigue is a common side effect of BCG with a lot of people me included. I have had 30 treatments, and the fatigue got worse as the number of treatments increased.
Well worth the side effects in my case, now nearly 2 years cancer free :)
Jack
TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007
Well, I’ve had 4 BCG treatments so far… and I am just starting to feel a constant bladder ‘soreness’ and am very tired. The actual pain upon urination only lasts about 36 hours, and I think alot of that is just the process of catheterization. I have a great nurse who is doing the procedures, and we sit and talk about places in Europe she has visited (and I have on my “wish list”)…
Is fatigue a common side effect? I do think about how hard my body is working to send white blood cells in an immune-attack on my bladder lining, and can see how that could affect how I feel overall. It doesn’t help that my days are 12 hours (commute included), and I can’t get more than 7 hours of sleep a night…:side:
TaG1 12/05
3 recurrences
BCG started 9/09
You may want to tell your uro about your plan and see if he/she suggests you take antibiotics with you as a “just in case” measure in case there is any issue.
Since everything has been fine for you so far, no reason to believe it won’t continue that way. However, “better safe than sorry” makes some sense as well.
Only saying that because I got a very high fever the night that I had the BCG and antibiotics were required. If you’re in a tent somewhere in the boondocks, it would be good to have a thermometer and antibiotics. Having the stuff you need is one way to pretty much guarantee that you won’t need it.
You only wind up needing stuff when you don’t have it. :DMike
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.
Oh yes.. i had jars of bleach in my bag for my travel stops!!!My sister laughed and figured no one else ever bleached the toilets at a turnpike rest stop but me:laugh:
This week, I have to take my dog to the vet for x-rays after my treatment 2 hours are up, then I’m doing a civil war reenactment for the weekend, camping out in the cold…. but once my tent is up, I can sit around the fire or nap in my tent all I want – I portray a southern refugee widow who is following the army for safe passage to my aunt’s home, after the damn Yankees destroyed my home….:side: I don’t want to give up my fun just because of cancer. However, for all the rest, I’ll be going home and working at my computer at my dining room table afterwards…
TaG1 12/05
3 recurrences
BCG started 9/09
I thought about BCG and then mitomycin the same way. Getting intravesical treatment is WAY better the chemo in the vein!!!
I never needed “chemo” and hope it stays that way since I’ve gotten mine removed.
It’s good that it worked out for you and I hope you used the bleach in the toilet at those places you stopped so nobody else got exposed to the live TB vaccine. :huh:
The BCG has worked well for many, many folks without getting to be a major problem and I hope you remain to be one of them.
It is advisable to take it easy and stay home the day of “the treatment” though, just in case…..
Best,
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 thought about that, Mike.. but I figured driving was better than flying, cuz I could stop and get out and walk around and find more bathrooms along the turnpike! I could not miss the wedding (it was in the RainForest at the zoo, and was a blast, dining in front of pythons and pirahnas, and having cocktails with orangutans)!
I asked my nurse who does the instillations how ANY woman could catheterize herself, and she said it was not easy, you couldn’t be too chubby, and needed a big mirror…:P
So it’s possible by the sixth treatment, these won’t go so easy, eh? I have very slight pain and “spasms”, not enough to really bother me right now. Then again, I don’t have an interfering prostate either… I still have not considered myself having “cancer treatments”.. I just look at it as a medical procedure, like the many others I’ve had. I know I should slow down a bit so I’m not surprised if it hits me harder one of these days…
TaG1 12/05
3 recurrences
BCG started 9/09
Slices and Dicese? ACK!!!!
Mine tried that once with me being in the office awake. I almost hurt my nose when I levitated at the speed of light toward the ceiling! He did’t try that again.
Now that I have a neobladder, I think I could do a cysto on myself without any numbing stuff. I cath with a 16 French red rubber catheter and have no discomfort at all. Back in the old days (when I had a prostate that seemed to enjoy strangling my urethra) it was a thought beyond reason to think about a catheter and cystos were dreaded.
Even though I got the numbing gel when they did my 6 month cysto after my neobladder surgery, I think I won’t even need it next time.
I’m glad there is at least “some good” that comes from not having the prostate anymore. There should be given the down side of not having one. :(
Be careful on that “drove 6 hours” thing after BCG. I stopped at a grocery store once after getting BCG and that was a mistake. Urgency and pain kicked in unexpectedly. I dashed to the bathroom and made it in time but I was not in very good shape after that. I’d suggest being conservative with activities after getting BCG to be on the safe side.
:)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.
Had my 2nd treatment, then drove 6 hours to Cleveland for a wedding… I have to admit, it was as easy as the first. But I am starting to notice I get a little tired during the weekend (I scheduled all mine for Friday mornings). I hope the rest of you have easier times in the future, and that your predictions of “cumulative effects” don’t come true for me.
And it’s my non-medical opinion that caths must always be harder on you guys, even though it’s easier for the techs!:P
I actually like to watch the screen during my scopes – except when he slices and dices and cauterizes (without anesthetic)…yowsa. Don’t need to watch that, I can feel exactly what he’s doing…. :S
Lauren
TaG1 12/05
3 recurrences
BCG started 9/09
:woohoo: 1st six and 1st maintenance series, with a world class infection after each. I have about 10-days left on Sulfa…… (what ever) antibiotic, this 2nd go round. Not real sure I got over the 1st infection, as the 1st 3-maintenance treatments came on so quick. The BCG for me (guess I am the one out of “X” ) has been EXTREMELY painful, even at 30% dosing.
Someone said the infections may come from “tramatic caths”, as my prostate is tight as well, you guys know!:blush:
I have contacted a Uro, by e-mail, at UVA for an initial contact. Maybe I’ll end up there for a 2nd opinion! At this point I am leaning toward no more BCG’s (scheduled for Jan), although I will continue the scheduled Cysto’c.
62
Turbt (May 09)
T1 High grade
Began BCG June 09 (every 3-mo for next 2-yrs)
Rudy, Pat is so right regarding BCG infections. During my first 22 treatments I had 5 UTI’s of which 1 was serious and my Uro send me to a Specialist. Once the infection was cleared I resumed the BCG treatments but was given Cipro the day of and for 6 days following each treatment (I was on monthly maintenance treatments at the time) I never had an infection during the next 8 treatments. The Cipro was prescribed by the Infection Specialist.
Jack
TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007Rudy..it happens more than gets reported. Most uro’s do not recognise the more dire symptoms and an infectious disease specialist needs to be called in when this happens. I don’t know why they are in such denial. I’m pretty sure thats whats going on with Bill,Jr. right now but the patient knows his body and other than the cumulative effects which do happen with BCG when an unusual or prolonged period of discomfort happens you really have to be proactive about it. If that means another opinion……..GET IT.
Pat
I’ve had BCG treatment and must say that I thought it was a piece of cake until the 5th and 6th go-round. I got an infection, which not only gave me the chills and fever at night mostly, but I also wound up with an infection of urinary tract. I also wound up with a TB infection of the prostate gland which was not diagnosed for several months later. I then spent 6 months on two powerful antibiotics. I think I am rid of it now but am told it could return. I am not sure what went wrong and do not know of anyone else who has had that happen to them.
I hope your treatment goes well.
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