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Missed BCG treatments
This is Mom again. My son has superficial bladder cancer and has begun the BCG treatment. After the 2nd treatment he started having blood in his urine. He could not have the 3rd treatment and after two weeks missed treatments was scheduled for his 3rd treatment Monday. There was still blood in his urine and he missed his 3rd treatment again after missing the treatment 3 weeks in a row. His doctor ordered another urine test to rule out a bladder infection. So far that has been negative.
How common is it to miss consecutive BCG treatments of 6 required treatments of one a week?
Is it unusual to miss the treatments? Or is this common?
When the treatments are missed, does this leave an ‘open door’ for the cancer to spread to the inner surface/muscle tissue?Mom
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43 Replies
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Rosemary and Zachary,
Thank you, thank you so much. I will check out Dan’s story right away.
Carole -
Carole, Dan’s story is both powerful and enlightening. It didn’t exactly help me make the decision to have a radical cystectomy because in my personal situation I couldn’t avoid one, but it made me feel a lot better about my decision and my future.
Dan is a guy who really did his homework in a systematic and thoughtful way. I always appreciate people like that–people who do so much groundwork that it helps make our choices easier.
Someone here…. Rosemary?… coined the term “bladder-optional living”. It’s not so bad and it’s not so hard. None of us have a time machine or magic potion to take away our bladder cancer. What to do about it is sometimes a difficult and personal decision. But, in my heart of hearts, I would probably do what Dan did even if my cancer was superficial.
Zach
Oh, and the Dr. Stein alumnus Dan mentioned that he just missed meeting was, of course, me…
“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein
Mom,
Hello again. There’s lots here who can jump in and answer your questions better than me, but, when I was googling the term “FISH” to better help you at the BLCWEBCAFE homepage, I ran across “Dan’s Story” which might shed some light for your son. He calls his story “To RC or not to RC, that is the question.” (RC meaning radical cystectomy which is what the doctor is referring to in removing the bladder as a last resort).
You might want to read this and see if it would be appropriate to E Mail this article to your son. I think he could possibly relate to it.
http://blcwebcafe.org/stories/dan.asp
Your friend,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006This is that Mom again. My son has completed his round of Mitomycin 40 mg and recently had a cystoscopy to check things out. These are portions of his e-mail to me with the new updates:
I didn’t get the news I was hoping for today after Dr. Grubb’s cystoscopy. I was able to watch the monitor while the camera was in my bladder, and there is a new “area of concern” at the very top (12:00 o’clock) of the bladder. It looks a little like a wart, which is different than the manner in which CIS presents itself. We have two options:
A) Have a surgical biopsy (under anesthesia…same thing as before) and TUR (transurethral resection). Wait four weeks. Begin a 6-week cycle of BCG. The problem: my history of bleeding after these procedures precludes BCG treatment.
B) Begin a 6-week BCG cycle immediately. Have a camera cystoscopy (under anesthesia at the hospital) after that cycle. In the event the cystoscopy determines a biopsy / TUR is required, they can just do it then while I’m already loopy.
He is going for Option B and has scheduled six BCG treatments. Dr. Grubb is going to confer with Dr. Kibell, a senior member of his team, but I have already scheduled six BCG’s starting next week (finishing on MON 08/13/07). I had to leave a urine specimen, too, and they’ll perform cytology and FISH (Fluorescence In Situ Hybridization) tests on the sample.
Dr. Grubb mentioned that the leaders in the field have become more aggressive in recommending bladder removal (cystectomy) in patients that are not responding to any of the standard intravesical treatments (BCG / Mitomycin / Interferon). Sure would like to avoid that.
Has there been any discussion on this website on bladder removal? FISH?
Thanks,
MomWendy,
My son has been in contact with his doctor and has opted for the 40 mg protocol treatment instead of the 20 mg. He feels confident his onclogist will do the ‘au protocol’ for administering the Mito treatment. His oncologist said he can use this protocol for my son’s treatment. Nothing is scheduled yet – still waiting.I forwarded your information and associated websites to my son and he forwarded to his doctor/oncologist.
Thank you.
MomWendy,
You are just the greatest with all your information! I printed off the information on both the websites and forwarded the websites on to Todd. I am sure he will ask about the new treatment technique.Thank you
Carole
Hi Mom
Mito is widely considered to be the best bet when BCG isn’t an option. The response rates are very similar.
I hope your son’s doctor is up on the latest improvements on how to deliver Mitomycin.
There are actually 3 different new improved way to deliver Mito these days, the “Au protocol:” Rosemary mentions that is very simple and covered here:
http://blcwebcafe.org/mitomycinprotocol.aspThen there are 2 European innovations showing improved responses, one is Synergo which heats up the drug, http://blcwebcafe.org/synergo.asp
the other is EMDA (Electro-motive-drug-administration) + BCG, where they also heat of the Mito and then follow through with BCG. [url]http://blcwebcafe.org/intravesicalchemo.asp#emda[url]
This last innovation showed the highest response rates ever seen in blc treatments!Lots of new treatments coming down the pike, good.
Wendy
Mom,
I had a couple of doses of Mitomycin C after TURB’s. I wish all Urologists would implement this method.
I happened to run across this article about Mitomycin C and the possible enhancement of effect by making the urine more alkaline while taking treatment. I’m not recommending this. This is for informational purposes only….
Enhanced Delivery of Mitomycin C Improves Results of Treatment for Superficial Bladder Cancer
http://cancer.unm.edu/cancernews.aspx?section=cancernews&id=16997
Good luck, Mom
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Wendy I had a board for poker once and the Admin ( lol which was me ) sets up the the amount of posts for the stars or whatever other emiticons they might use for its members. No offense to this board it has become a kind of second home checking out others post but when I had my poker league with board I did not have cancer then so that was more enjoyable. Mom I hope all goes well for you and your son this is nerve wrecking as with any cancer I know this first hand being Stage T2 G3, Best Wishes, Joe
I had mitomycin but really only twice as a precaution many years ago. not a course or anything like it. my surgeon used to favour it as a standard treatment following turbt to catch any stray cells that he missed or may have been shed during the procedure (cells falling from the tumour site can “seed” to other areas of the bladder.I was told at the time the dome is a favourite spot as they float up in the water that they fill your bladder with and settle in an air bubble at the top; allegedly – I’ve no way of corroberating this but it sounds like it could happen!)
Its classed as a cytotoxic antibiotic which means basically it kills cells. It can be given intravenously for systemic disease but for me and your son “intravesically” ie via a fine tube into the bladder.
In my brief association with it, I didn’t find it particularly bothersome but as I said, I didn’t have a course so others here may be able to add to this. In fact, when I had it, it was administered, I did the usual fifteen minutes on each side and then peed it out with no obvious symptoms. I can tell you, however, that I was disease-free for nearly two years after the first dose – still my record for a tumour free period…so fingers crossed…
heres some uk info on mitomycin c that I think sums it up ok; again, ignore the intravenous stuff!
http://www.cancerhelp.org.uk/help/default.asp?page=4012
All the best
Tim
Mom here again. My son with superficial bladder cancer met with doctor for 2nd opinion Thursday. They are going to begin MITOMYCIN C treatment as soon as can be scheduled. I have already checked out the Mitomycin website, but wondered if any discussion on this type of treatment? Anyone famililar with it? Thanks.
Wendy,
Thank you again. I have passed the diagnostic information and website on to my son and asked him to show his doctor. We were not aware of this procedure.Carole
That sucks! How utterly frustrating and confusing, not only for you and your son but for the doctors as well…
I was very glad to read that there was an extensive re-scope done going all the way up, plus re-cauterization of the old TUR site. You should be able to rest easier knowing that all visible cancer is gone and no abnormalities were seen. As I said way back after your first post here, there is a chance your son is actually cancer free at this point.
There is a new technique that improves greatly on the accuracy of cystoscopies, it would be wonderful if it were somewhere close to you. There’s info about it here and phase III trials are being conducted around the U.S. (it’s been approved in Europe for a while),
http://blcwebcafe.org/hexvix.aspThis could rule out invisible cancer lurking somewhere just under the lining, as CIS often does. The blue-light, fluorescent cysto technique is especially good at uncovering CIS.
I suppose the puzzle still remains the same, what is causing this bleeding, and that the pieces can’t fall into place until that’s known and dealt with. It couldn’t hurt to travel the greatest, bestest place for bladder cancer treatment that you can possibly get to, somewhere with every cutting edge diagnostic and treatment tool available.
Please keep us posted.
WendyWell, this is ‘Mom’ again to update on my son’s missed BCG treatments and asking for guidance/advice. My son is 45 years old, unmarried, non-smoker and he was diagnosed with superficial bladder cancer Thanksgiving of 2006 and still has not completed the prescribed BCG six treatments once a week. To date he has received only 2 BCG treatments.
He recenly had a second cystoscopy about 5 weeks ago and was scheduled to begin the BCG treatments April 2. He was unable to begin because of bleeding at the end of urination. During this recent cystoscopy the doctor looked all the way in the ureters to the beginning of the kidneys, searched closely the neck of bladder on the recommendation of Dr. O’Donnell. He was given advice from both Dr. O’Donnell and Dr. Lamm on another treatment form, but can’t begin that until the bleeding stops.
Recent cystoscopy diagnosis: Nothing new found, no new growths, no invasion of the bladder muscle and re-cauterization of the previous TUR site that was originally done around Thanksgiving 2006. He was to begin BCG Apr 2 and had to postpone again. He had a CT Urogram and got the results yesterday. Negative. His ‘clotting’ blood test was also acceptable. His doctor has recommended him seeing an associate in the same Urogology group in St. Louis.
Please any comments or advice is appreciated. I have so many questions and suspect you know what they are with this elapsed time to begin BCG.
Thank you,
Mom
Best of luck with the treatment mom!
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