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BCG follow-up
I completed 6 BCG in late Nov. Had a Cysto in early Jan. All clear. Another Cysto in March and just finished my maintenace (3 BCG) yesterday. I am scheduled for another BCG in June if all clear another 3 BCG. Then my Uro said I would go to 6 month BCG.
I am doing fine with the BCG – full strength – just some spasams I did take some medication for the spasms this time and it did help – I had about 3 hrs of spasms (better than the 12 hr I had before}- and the last two BCG’s I have been very tired the next day.
Is this the normal schedule? 6 BCG – 3 BCG – 3 BCG and then 6 month.
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/0716 Replies-
wow!! hard to top that explanation!! however, i went to the site which said bcg was an “active virus”…i found this on that same site! sheesh!!! “BCG: An effective immunization against tuberculosis . “BCG stands for Bacille Calmette Guérin. BCG is a weakened (attenuated) version of a bacteria called Mycobacterium bovis which is closely related to Mycobacterium tuberculosis, the agent responsible for tuberculosis.”
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Hmmm… well you might read things on some fairly authoratative web sites that quote misinformation or even misunderstand the correct information, but any physician ought to know that BCG is a bacterium – in fact the B stands for Bacille which is French for Bacillus which is a specific form of bacterium. The mycobacteria of which tuberculosis is a family member is a fairly advanced bacterium, even demonstrating some branching growth structures similar to the fungi which are multicellular – very far from a virus which is an incomplete cell and can only grow inside another cell.
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician
oops..my previous post should’ve been to you rosemary…sheesh, shows where my heads at…smiles…anyway..another quote from Dr Lamms’ protocol, “Bacillus Calmette-Guerin (BCG), which is an inactivated form of the bacterium Mycobacterium tuberculosis,”…also, rosemary…it would seem strange that if our symptoms occured as a result of a virus that they would be treated with an antibiotic…my doctor gave me one to take today as a result of my symptoms the first round!! more food for thought…take care, gina
Gina,
We are obviously not the only people who are confused about whether BCG is a virus or a bacterium. Try Googling each term and you will get the medical community calling it both. There is actually a HUGE difference in a bacteria and a virus. My Doctor referred to it as a “live attenuated virus.”
But, as you say, it is not as important to us as it is to researchers. It does make you want to do your homework when so much is at stake. At least it makes me want to do my homework….
This is from medicine.net
PRECAUTIONS: Because this medication contains active virus, it is important to pour household bleach into the toilet after urinating and before flushing for up to 6 hours after receiving the medication. This will prevent the infection caused by the virus from spreading.
http://www.medicinenet.com/bcg_vaccine-chemotherapeutic/article.htm
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Its all right here……..http://blcwebcafe.org/bcg.asp
Pat
nancy…if an individual treatment is indicative of whether or not the bcg is working then i’d say i should be a little worried…smiles…my first was by far worse in “symptoms” than the second…virtually none yesterday!…also, you and others here know so much more than i about all of this, yet everything i’ve read refers to bcg as being a bacteria, this was taken from Dr Lamms protocal for what should be done following treatments…”The toilet must be neutralized of any live bacteria; this is done by pouring 2 cups of household bleach into the water and letting it stand for 15-20 minutes.”…i am not sure about whether it is a virus or bacteria…and frankly it really doesn’t matter to me…the more i read, the more confused i become…
Not to be the bearer of less than great news, but I had very severe inflammation from BCG last Summer, and the doc said that he believed that indicated good effectiveness. Dr. Lamm was less conclusive, and my next TURB in September, two months later, showed papillary and dysplasia, followed two months later (Nov 30) by another TURB which showed a recurrence of CIS. Like Rosemary said, it varies by individual. Hope yours is effective; the odds are heavily in your favor :)
Gina,
Hopefully your Urologist is correct, and an individual response to BCG would be indicative of whether or not the treatment is working. It is more my understanding about this question, that it depends on who your ask. When I had a very debilitating arthritic response to BCG (an immune system response), I E-Mailed Dr. Lamm (a trailblazer in BCG research and treatment) to ask him whether my reaction meant that the BCG was doing it’s thing with bladder cancer, his reply was that it “might and it might not” be a good sign. Let’s hope these reactions are a good sign, if so, I should never have to worry about bladder cancer again in my lifetime….
BTW, just a point of small correction, BCG is a virus and not a bacteria.
Keeping my fingers crossed…. :-
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
thanks nancy! i am glad too…just hoping that the results are as “easy” to take…smiles…i understand that too…i was only sharing what my uro stated…she’s one of the top in our area…well..she’s with one of the best uro clinics!!…ultimately…with cancer…you just never know…i think that’s the worst of all…having to wait and see…thanks for being here…gina
Hello, Gina
I am happy your BCG went well this time. I understand where Pat is coming from. Everybody reacts differently. On this forum alone, some have had reactions to BCG and the treatment did not work – others have had no reaction and the BCG worked. I guess it is up to our bodies to react.
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07
pat…i went yesterday for my second bcg treatment…when i told the doctor what my “symptoms” were from the first….her reply, “hate to say it, but that’s a good thing”…i questioned her afterwards and she said that those with less of a reaction tend not to get as good results!…when you think about it…the bcg is a bacteria and if you don’t get some kind of a response…then the immune system won’t have any reason to “kick in”, hence the bcg is not doing it’s job!…makes sense to me!…i didn’t have a hard time yesterday with my “reactions”…they were very “subtle”, unlike the first time. gina
Craig…thats just not true that if your reaction is to subtle that the BCG is not doing its job. Also… Its been proven that a subsequent lower dose is just as effective as full dosagage after the initial course of BCG.
Pat
Thanks Craig,
I appreciate the info. I have researched everything I can, and you are so right when you say it comes down to the individual. My Uro has been very supportive when I get second, third and even forth opinions from other doctors. One at Barnes St Louis, another cancer Uro here in FL and also the Moffitt Cancer. All concur – I was hoping bladder will take all BCG I need. I was a little alarmed when the Dr at the Moffitt Center said he had to remove bladders because of the BCG not cancer. (Of course, I panic frequently since BC) :)
So far so good, Two clear cysto’s hoping for one more June 9th. I am finally getting to a normal life in between cystos.
I did have an infection after the second one (out of three) I am hoping the antibiotic takes care of it.Good luck in May, I hope your Uro stays on the maintanance – that seems to be the best avenue.
Nancy
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07Nancy,
It is wise of you to be researching and asking questions, of both your urologist and others. Concerning the reduced dose, I believe that this is done if your reaction to the full dose is too severe. Each person has to decide for themselves how much of a reaction they can handle. For myself, I have decided that if the dose is tolerable (even if uncomfortable) then I will continue with full dose. For me, reducing the risk of recurrance is more important to me than reducing my discomfort. But, again, everyone has to decide these things for themselves.
My own reactions to the full dose (81cc) have been a feverish feeling on the evening of the treatment, and bladder spasms until evening. I have found that eating and drinking nothing from two hours prior to the treatment until my first voiding (two hours after) has helped ensure that the treatment impacts my bladder as expected (debris and blood during the 6 hours after my treatment). For the first three treatments, I was taking large amounts of water immediately after receiving the instillment, and feel that this may have diluted the treatment too much. I now hold off drinking until after my first voiding, and drink 13 ounces following each voiding there after. This seems to help clear out my bladder quickly, and I believe to reduce what could be greater reactions. Like you, I do feel very tired the next day, and sometimes am still a bit drowsey the day after that.
Keep in mind that Tb in your bladder triggers your immune system at many levels, which is exactly what helps kill any cancer that may be developing there. Just like any bacterial infection, your body will get exhausted. If your body’s reaction is too subtle, then the treatment may not be causing the desired result. I am encouraged to hear that your body IS reacting to the treatments in the manner you describe, as that seems to fall well within the desired results noted in Dr. Lamm’s protocol.
Concerning the schedule, it appears that the regimen you are on is what is called the SWOG protocol, which is recommended by Dr. Lamm, and seems to be the most widely used. At the bottom of the document (linked by Patricia), you will find a summary of the schedule, which has helped me to plan ahead for what is to come.
Lastly, hearing about your experience after three rounds of treatment is encouraging to me. I just finished up my 6-week initial treatment, and have my next Cysto mid-May. At that time the urologist will let me know what will be the next step (he seems to be trying different regimens with different patients).
Be encouraged!!
Craig Stockton
Hi Patricia,
That was my concern – A cancer Uro told me that he has had to remove bladders not because of the cancer but all the bcg. The bladder had shrunk. I will ask my Uro if the thinks a smaller dose is wiser. I guess I will see in June – hopefully the scan will be clear! Thanks Pat- you are always there!
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07Sign In to reply.
