New Bladder Cancer Pt

Morning everyone……..thanks to Mike I did not get much sleep last night. (just kidding) After going to the site and reading everything Dr. Lamm had as far as questions and answers I decided to read some of his presentations. I found he refers to another site www.eortc.be/ where you can download a freeware Prognostic Calculator Software called Recurrence and Progression in Stage Ta T1 Bladder Cancer. (A word of caution it does not like Vista 64 bit operating systems.) What has amazed me the most was that this Dr. Lamm would take the time to be so informative and it does ease the mind to know that you really have symptoms and are not a hypochondriac. If he wasn't in Phoenix I sure would like to have him as a doctor.

Thanks Bill for sharing your like symptoms and I am looking forward to getting #5 done this Friday.

Al

Al, I know what you mean. I have also felt sick with light-dizziness, and nausea for as long as 2-days, but 2-3 days after "BCG". Thought I was the only one with these symptoms.

I also have burning and frequency after treatment #2, but no bleeding yet. 4-more Fridays left on BCG-round #1 and 2 long years of maintenance BCG, every 3-months thereafter. And I get that "cysto" as a bonus every 3-months.

Also having minor aching in the groin-area (I assume its the blader), which I guess is normal for us.

Al,

Yes. Those are normal side effects. Doesn't always happen right away and can take a couple days before you get them.

Here are a couple of places:

TICE (BCG manufacturer): www.drugs.com/sfx/tice-bcg-side-effects.html

Dr. Lamm's site (see paragraph 3): www.bcgoncology.com/treatment/bcgInst.html

I do recommend making a note of any symptoms/side effects you have, when they start, when they stop, etc. If you get a low fever, note that along with start and stop times (and what you took to combat it, e.g. Tylenol).
Bring those notes to the uro next time just to let them know. Dr. Lamm recommends reducing the dose if the side effects become too bothersome.

There is not evidence of reduced efficacy with lower doses.

If you get any of the big side effects, then you want to call your uro immediately. Those are spelled out in the pages linked above.

Best of luck for continued success with your BCG treatments!

Mike

Just finished the 4th BCG and find it is getting easier as I now know what to expect and there are no surprises. Definitely don’t want anything larger than a 14 and have requested the same nurse practitioner. # 3 was done by a different one and that extra shove after it was in the bladder a little bit discomforting and for the first time did cause some burning and blood for. # 4 was done by the usual nurse practitioner did not. Like most of you the numbing gel is not standard for BCG treatments and I have not thought to request it. For the first time I have felt sick with hot flashes and dizziness, nausea etc. However it did not affect me until a day and a half after the treatment Is this normal?
Thanks
Al.

I got the numbing jell after I asked for it, I think after my 8th or 9th treatment. From then on it was used for all future treatments.
My cath was a number 14, only know that because I asked after coming to this site last fall.
I have found the jell is not standard practice for BCG treatments, as it is for Cystos. But if you ask you shall receive.
All the best,
Jack