Homepage – Forum › Forums › Non-Muscle Invasive Bladder Cancer › Another Educational Topic BCG show from BCAN
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marysue.
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February 17, 2014 at 7:39 pm #8024
Ieva
ParticipantBCAN has just released news about several educational programs and resources.
Conversations: Let’s Talk About Bladder Cancer – Spotlight on BCG is the latest episode of an online talk show hosted by BCAN President and Co-Founder Diane Quale. In this most recent show she talks about Bacille Calmette-Guerin (BCG) treatment for bladder cancer with two experts in the field: Dr. Donald Lamm, BCG Oncology President, and Dr. Michael O’Donnell, Professor of Urology, Holden Comprehensive Cancer Center, University of Iowa. Please click this link to take a look: https://www.youtube.com/watch?v=IdIRncnAK2w
February 17, 2014 at 9:18 pm #17061auntybevy
ParticipantEveryone new to NIBC should be watching this extremely informative discussion on BCG. This is Bladder Cancer Treatment 101. A huge thank you to Ieva for this post.
Bev
February 17, 2014 at 11:32 pm #17069Jack Moon
KeymasterI agree Bev, this is a must watch if you are going through BCG. Both doctors who happen to be experts on the subject have done a great job of putting the information about BCG in words we can all understand. By the way, if you do have a question about BCG and your treatments, Dr Lamm will answer your emails.
Jack
February 18, 2014 at 1:35 am #17071Rick B
ParticipantThis is a great informative piece on BCG. Most of what was talked about is covered in the product info sheet but their comments put it in terms to better understand.
Recommend those who are just starting BCG to take the 25 min and watch the program. In fact, there is something for most everyone.
Rick
February 18, 2014 at 3:17 pm #17072Dunin2
ParticipantGreat video and very informative. Thanks for posting it.
After watching it I can say for certainty that my uroligist is doing everything right with my well being and comfort in mind.February 18, 2014 at 4:21 pm #17074stumblegirl14
ParticipantI watched this after they sent me the link to me email. I thought it was very informative. They did say that bcg works the best on early stage high grade bladder cancers so not sure why bcg is recommended for low grade bladder cancers if it’s not very effective? Anyone have an answer to this as my doc is suggesting bcg but I have low grade but with many recurrences. If bcg is not effective for low grade seems that perhaps one shouldn’t be getting this.
FloFebruary 18, 2014 at 5:26 pm #17077Greg
ParticipantFlo:
The American Cancer Society link below gives some guidance. Perhaps a discussion with your uro would educate either you or him!!! I am not personally convinced that every uro is up to speed on current protocols (my uneducated opinion only). Your uro might well be, of course, so this is not a reflection on him. But he would be able to give you his reasons, no doubt.http://www.cancer.org/cancer/bladdercancer/detailedguide/bladder-cancer-treating-by-stage
Greg
February 20, 2014 at 3:57 pm #17079stumblegirl14
ParticipantThanks for the link Greg and I appreciate your answer. I did speak to my uro and his reasoning is because of my many recurring tumors which seems to be minimum 5 tumors every 3 months for the last 3 plus years with a max of 10 tumors this last time. So makes sense to me if it reduces tumors even though mine are not high grade. Thanks again Greg.
Flo
February 20, 2014 at 5:46 pm #17081Jack Moon
KeymasterHi Flo
I was diagnosed with low grade in 2005, 2 low grade recurrences during 1st 12 BCG treatments, both times just 1 tumor and very small. I continued with a further 6 treatments and 12 maintenance treatments. As you know I have been cancer free since 2007. Although BCG may be more effective with high grade tumors, I am prove that it can work with low grade, and I do know several survivors with low grade that BCG has worked for them also.
Hoping the treatments work for you also.
JackFebruary 20, 2014 at 6:33 pm #17082stumblegirl14
ParticipantThanks for this Jack very helpful as sometimes all the info gets overwhelming and I just want to make sure I’m choosing the best options for myself.
FloFebruary 20, 2014 at 7:04 pm #17083Jack Moon
KeymasterHi Flo
I also did start Vit D supplement in 2007, as there was some early research BCG may be more effective with added Vit D.
In 2012 a study in USA confirmed that Vit D does improve the effectiveness of BCG.
In the summer I only take 1,000 units and in Spring, Fall and Winter I take 2,000 units.
Might be worth a try.
http://www.urmc.rochester.edu/news/story/index.cfm?id=3513February 20, 2014 at 8:05 pm #17085Val
ParticipantI survived 17 BCG treatments. The last few were at a very small dosage because my body started reacting to it.
My last BCG treatment was 3 1/2 years ago and I’m still cancer free!
February 21, 2014 at 4:09 pm #17089marysue
ParticipantI will be forwarding this on to my support group members. We have several individuals that are currently doing BCG.
For myself I did 6 weeks BCG at full strength post TURBT in 2008 (had several non-invasive Ta papillary tumours and a couple of CIS spots removed – all high grade), was clear for almost two years and then after a second TURBT to remove a single non- invasive (Ta) high grade papillary tumour I underwent a second 6 week round in 2010 followed by 1 year of maintenance treatments consisting of 3 sets of 3. I toughed it out until into the second set of maintenance (6th month) when the flu like side effects caused severe muscle and joint pain to the point regular pain killers were no longer effective. I changed drs at this point and my new uro agreed to reduce the dosage to 25%. I managed to tough out the remaining 4 treatments. I have been clear since then. My cysto is coming up in March but I fully expect it to be clear. BCG according to my uros is usually 60-70% successful with 6 weeks of treatments but over 85% successful if you follow the 6 weeks with one year of maintenance. They are however of the opinion to try to do it at full dose if possible. So in total I have done 21 BCGs and lived to tell the tale. My understanding is that if you have side effects that are other than mild flu like symptoms, some fatigue, a little bit of bleeding which should clear before the next treatment (usually in 24-48 hours) you should be talking to your dr or clinic before undergoing any further treatments.
I also do Vitamin D supplementation. Someone at our BCG clinic, I think a nurse said that they had heard about Vitamin D enhancing BCG’s effectiveness. I started taking Vitamin D with the idea that anything to help me from having to do any more BCG was a good thing. Also it is reported to help with preventing colon cancer so I figured if it is good for that it should be good for the bladder too. I take 2000IU in the winter and 1000IU in the summer. I also take it by drop form not pills. The nutrition person at a health food store where I shop told me that vitamins are best taken in liquid form because they are more readily absorbed by the body.
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