Does Anyone Have lternative Treatments to BCG???

• By lsh
• Posted July 13, 2009 at 2:58 pm
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Some people who fail BCG do Mitomyacin treatments. I understand that the side effects are pretty much the same with Mitomyacin and BCG. We have a member who said he would NEVER do BCG and he just finish his BCG induction(6 weekly treatments)today. I am sure Cheyenne will chime in.
Good luck with your decision making. Please let us know how your treatments go---whichever one you choose.

Lynda

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• By Karego
• Posted July 13, 2009 at 3:00 pm
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Welcome to BCAN's online community. Learning about Bladder Cancer can be a daunting task. It will help us guide you if you can give us your history so far. By two surgeries, do you mean cystectomies or two TURBT's (resections for biopsy to determine if BC is present and to remove tumors). If you are in the early stages, BCG is the current protocol for treatment. If you are already in invasive stage, a Radical Cystectomy is recommended with choice of several diversions.
Our parent Web site www.bcan.org has lots of information for you to learn about this disease. There are many here who are in varying stages who can share their experiences also.
So, give us more info and we'll be replying back to you.
Karego

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• By Moonerj
• Posted July 13, 2009 at 3:00 pm
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I have had 30 BCG treatments, and have been cancer free for 19 months now, after a couple early on recurrences. An alternative to BCG would be Mitomycin C, which is a chemo, that is instilled in your bladder for 2 hours just like BCG. There has been many success stories with mitomycin. Many people that have failed BCG treatments, have had good success with this chemo.
I hope this helps you.
Jack

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• By JillfromLA
• Posted July 13, 2009 at 3:30 pm
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I am new to this site. My dad starts BCG today, which is why I joined. I am very nervous about the possible side effects, but seeing posts like Jack's above make me feel better/that it is the right decision to proceed with the BCG. Not that he has much choice. Of course, there is always choice, but his urologist (who is also a good friend) basically said to him this morning that he needs to do this and do this now. I welcome any/all positive BCG stories to help me get through this. I am a huge worrywart.

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• By roadrunner
• Posted July 13, 2009 at 4:19 pm
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Welcome Jill,,,,
we have lots of worrywarts here,,,your in good company,,,,
I can't speak of bcg,,,,,,I have many friends here who have it,,,,it seems to do the job and keep many cancer free keeping that bladder removal surgery at bay,,,hopefully forever,,,,side effects seem to be all over the board,,,some have none,some have a couple days of flu like sytems,,,,there was a bladder cancer conference my husband and I attended,,,got all the poop on bcg etc,,,,,its not for us as my husband had his bladder out 23 months ago,,,at stage 3,,,,muscle invasive,,,,he's fine,were great,,,,he was 67 at the time,,,
Remember keeping your bladder is great as long as you can keep the cancer in check,,,,,bcg works for most here,,,its such a personal choice,,,,
Ginger

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• By roadrunner
• Posted July 13, 2009 at 4:21 pm
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candreatos,
Jack is the top dog here on bcg(moonerj), BELIEVE WHAT HE SAYS,,,,he still has his bladder,,,

Ginger

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• By jj803
• Posted July 13, 2009 at 6:03 pm
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Hi Candreatos,

I haven't had BCG, either, RC for me in 3/08; but it was a consideration so I had 3 different urologists 2 at major medical centers all recommended BCG for me (I was thought to be T1, high grade), because there was a strong likelihood that I already had muscle wall invasion, I chose RC instead. From my reading at that time, best I could tell was that BCG was the preferred treatment for CIS, T1, recurrent low grade non-invasive, multiple tumor non invasive and high grade non invasive disease. The recommendation is based on research that concludes that BCG is more effective than the other treatments and that side effects are somewhat less than other treatments. Many members have experience with BCG as well as other treatment alternatives and will chime in with their experience. Best wishes,

JJ

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• By Cheyenne
• Posted July 13, 2009 at 7:57 pm
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Well, you sound like me. I had my first BC in 92. Went 17 years with no recurrence. But in 2008 it came back, this time CIS (cancer in Situ) high grade, got to take this cancer really seriously!. Had a TURB, and BCG was recommended. I would have nothing to do with it. Cancer returned, April 2009, another TURB, BCG recommended, I would have nothing to to with it. Research alternatives which was easy for me because that was a big part of my profession. I would never recommend alternative treatments, but that's me. Have nothing to indicate they are effective in and of themselves) So in May I had another tumor. CIS again. Playing with my life here, really. Wanted no BCG. M.D.Anderson also recommended trying BCG. Well, several kind and experienced people on this site assisted me through my phobia of BCG, I just today completed the 6 weeks. I am really glad I did it and should have done it in 2008. It wasn't that bad, first 4 were fine, 5th some flue symptoms, today, feel pretty good so far. Will of course have a cysto in a month and if it comes back will have BCG and Interferon. There are other treatments of course. BCG is immunotherapy so it does not go around destroying all fast growing cells. Then there is instillations using a a variety of chemical agents (chemotherapy) and then if needed systemic chemo. Of course if none of those work then the bladder needs to be removed. But you definitely do not want this cancer to get into the bladder muscle. Bottom line, I highly suggest you go with the BCG and do not what I did and put it off form almost fours months. Hope this helps.

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• By Cheyenne
• Posted July 13, 2009 at 7:59 pm
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Your Dad's urologist is correct. I just finished my treatments. Not all that bad, a little tired, flue like symtoms, but nothing debilitation. Everyone has different symptoms though.

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• By JillfromLA
• Posted July 13, 2009 at 8:16 pm
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I am so happy to have joined this great group. Thanks for the comments, Ginger and Cheyenne.

Dear Candreatos, sorry for "hijacking" your post/question with my worries. I just felt like my dad was in a similar situation. Really didn't want to do the BCG. Tried to get his doctor to tell him he could wait until/if there was another recurrence. But his doctor convinced him he needs to do it and I am happy, based on posts from others, that he is proceeding. I wish you all the best in deciding what you will do.

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• By billybern
• Posted July 13, 2009 at 8:38 pm
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Hello Jill...I had 7 years of BCG's without a problem
until year 7( 2008) It is possible to get a systemic
reaction from long term treatment from BCG.

I am 65 now and was able to drive myself to the clinic for a BCG and then after holding it for two hours ( at home) go back to work the same day.

After an unpleasant reaction last year, I am opting for Mitomycin. I still think the BCG is the best way to go first.
Be sure to follow the instructions while the
BCG is inside his bladder. The nurse gave me a
novacaine prep so the pain during the infusion was very tolerable.

You will be surprised at how easy it is...
Be Happy.....bill b

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• By Cheyenne
• Posted July 13, 2009 at 8:40 pm
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That was a pretty clever hyjacking Jill. Just kidding. It's the same topic. You wouldn;t believe what they do with mine! You really both have the same concern, and it is a valid one. I doubt that anyone was ever more stubborn about refusing BCG than I was. But, I sure am glad I was helped to have all these fine people get me through my phobia of it. I mean, I would not plan BCG treatments as my next vacation, but it is tolerable. I do think there may be one thing worse than trying BCG. That is having wished you had when it's too late to do anything about it. Whether it is effective is never a guarantee, but I sure would not have to wonder if it would have made a difference. Much better to be able to say you at least tried to do the right things.

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• By Cheyenne
• Posted July 13, 2009 at 8:45 pm
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I need to clarify something. WHen I mentioned earlier that I do not recommend alternative treatments, I was not referring to FDA approved treatment approaches such as Mitimycin C, Interferon, etc. or even clinical trials. I was thinking in terms of the "all natural", "homeopathic" approaches in place of the traditional well studied approaches.

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• By HighlandGuy
• Posted July 13, 2009 at 9:59 pm
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I am 85 years old and I had one bladder and two prostate surgeries before having to have a radical cystoprostatectomy with neobladder implant in July 2000!

I cannot believe your concern for having BCG?
It's been around and proven itsels as a treatment for years!

You could have a partial resection or RC? (It may ultimately be necessary).

You could do nothing? (And, let the cancer run it's coourse?)

You need to examine the consequences, then ask yourself: Do you really have legitimate cause for not wanting BCG treatments?


HighlandGuy

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• By Shiz
• Posted July 14, 2009 at 1:00 am
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Candreatos,

Greek? Te canis? Anyway....I have had 12 BCG treatments so far with more to follow. It's taken almost two months since the last one to feel close to normal. The side effects for me have been kind of nasty, burning and spasms but guess what...I've had three scopes since the TURBT in August and no recurrance. It's worth the discomfort. Also from reading about the experiences of others here with BCG, I think my experience has been on the more bothersome end of the spectrum. There are meds that can relieve the symptoms. As one who has been there I can honestly say I would do it all over knowing what I do now.

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• By drd
• Posted July 14, 2009 at 7:41 am
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I agree with the gurus- I have had 36 bcg's and each one since the initial 6 have gotten worse in regards to symptoms- but they are temporal- and I have been cancer free for over 2 years. Ask the Dr for medication to subdue the spasms and burning- it may not be a pleasant experience, but it can be made sufferable.

Tony

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• By luco
• Posted July 24, 2009 at 6:21 pm
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Candreatos -

I have been blessed with 2 1/2 years of tumor-free life following a regimen very similar to that recommended by Dr. Lamm. The thought of BCG scared the crap out of me at first, but truly has become quite manageable. Some discomfort urinating, some cramping and spasms, occasional flu-like symptoms. Sounds horrid, but with meditation and conscious dialogue with my doc, I've come to embrace this path of recovery. Probably had close to 2 dozen BCG instillations over the last 3 years, along with the requisite cystoscopies. Bottom line: cancer-free. I augment with LOTS of supplements, green tea, etc. Not sure what's driving your reluctance to BCG.

Luco

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• By spartyman
• Posted July 24, 2009 at 7:17 pm
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BCG kept me cancer free for 15 years. Not too bad.Had r/c almost 2 years ago at age 57.Named my Stoma Stanley and always decorate my bag with stickers before a Dr. appt. Do you think putting Crhitmas tree lights on it would be over the top????

Tom in Michigan

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• By wknclasdog
• Posted August 14, 2009 at 3:09 pm
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I will be 55 on August 18, I'm a male, and almost two years ago I noticed blood in my urine. I called the urologist and he told me to come in. I only had the blood the one time, but that's what happens, you see it once and don't see it again and people say I'm ok but that's not always the case. He did a cystosocopy and found a tumor on my bladder. The Dr. scheduled surgery and he removed the tumor. It was golf ball sized, larger than he originaly thought. From that point on he wanted to do a cystoscopy every 3 months for two years to make sure it doesn't come back.
I went back in 3 months and had another cystoscopy done and he didn't find any tumors. I went back in 3 more months and he found a couple of small ones and removed them in the office. After one of the revisits into the second year he found 3 ir 4 tumors, they were small in size but he wanted to put me in the hospital to get a better look with the hospital scope and see if there were more than he could see in his office. I went in the hospital and there were 10 small tumors. They were cancerous though.He removed them and then set up BCG treatment for 6 weeks in a row. I did the six treatments and went back for another cystoscopy and he didn't find any tumors. I went back 3 months later and he found 1 and removed it but it was not cancerous. He set up 3 more BCG treatments and today was the 3rd one. August 14, 2009. The treatments are very irritating. You have to hold in the BCG for 2 hours and then you urinate. After that you feel like to have prostrate trouble, you constantly feel like you have to urinate. It gradualy calms down, but you sometimes have to run to the bathroom as not to pee your pants. The second day is much better than the first and the 3rd day is pretty good. If you have burning during urination have your Dr. write you a prescription for Utira-C. You take one every four hours and it helps to calm down the burning. After the treatments sometime blood comes out or clots, that is normal. Hopefully this will work and I won't have a recurrence but bladder cancer is nothing to let go or you know what the alternative is. Losing your life to it.

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• By tpop
• Posted August 14, 2009 at 3:16 pm
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Listen to your doctor. And if not comfortable with what you are told, then ask question, after question, after question till you. We changed Drs. ours is now at a major university hospital. Even with that, you still have to be a squeaky wheel. And mine has a shrill squeak.

Theresa

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