Second BCG Yesterday!!

12 years 3 months ago #40551 by Nix
Replied by Nix on topic Second BCG Yesterday!!
Hi Mary,
I remember how many "unanswered" questions I had. You are smart to keep researching for all the information you need.
I can tell you I had no reaction to the first four BCG - then small reactions that got progressively more apparent through 24 BCG's.
Everyone's body reacts differently, as is apparent by our forum. I wouldn't read too much into your reaction, since that is why we have frequent cystos during BCG treatment.
I remember wanting to hear that after all the BCG I would be fine. Unfortunately, with bladder cancer, you just don't know. But we have the cystos to keep tabs on everything.
I am a patient at Moffitt in Tampa. Although, I did not get my BCG there, I did transfer from my Uro because of my "side effects" from BCG.
I like Moffitt, and know they are very thorough, but I don't think they have the floresent light.Here is a link that explains the light: www.sciencedaily.com/releases/2005/01/050124011311.htm.
At least, I know they have not used that on me.
A strong support system is very important (as you have) also the more information you have the better.
Eating healthy is always good, but I felt even more important after knowing I had bladder cancer. I do eat a lot of broccoli, you can find the research done on broccoli and bladder cancer. And as everyone has said, just cut back a little on sugars, but otherwise, live your life :laugh:
Feel free to come here to voice your concerns, questions, or just whine - we have all been there and will help you through your journey bladder cancer.
Nancy

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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12 years 3 months ago #40550 by Zarathrustra
Replied by Zarathrustra on topic Second BCG Yesterday!!
Our other colleagues here who have experience of BCG (I haven't) seem to be giving the best advice on how it goes.

Whine away - many of us do. I've done my share, and had wonderful support and help.

Whilst the jury is out on sugar and alcohol, the weight of opinion is against having any. I have a little now and then.

Perhaps most important is (a) have supportive family - which you seem to have; (b) try to do short intensive exercise every other day, to pump your heart rate to above 90% of maximum; (c) eat lots of fresh fruit and veggies (esp. greens - brocolli, sprouts, etc); (d) do a daily juicing if you can (see my blog, link below); (e) if your waist is above 80cm, try to reduce it (cut out the carbs); (f) get your Vit.D levels up (take Vit.D3).
If you can, get an NMP-22 ELISA urine cancer marker check now and then (tri-monthly? - I do mine monthly, but then I'm stage 4), and, easier, urine dipstick weekly to check for micro-haematuria - which you wouldn't otherwise see).
If you've no symptoms, have your holiday and relax - I did a two-week holiday last April even tho' my cancerousness comes and goes.
Best wishes, Ian
bladdercancerfight.blogspot.com/2011/06/extending-survival-time-in-cancer.html

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12 years 3 months ago - 12 years 3 months ago #40547 by pemquid
Replied by pemquid on topic Second BCG Yesterday!!
I've been through 27 BCG treatments, and am all done as of early December. I don't think lack of symptoms means lack of response; each person is different, and not all have symptoms especially for the earlier treatments. I just wanted to let you know that I initially had very few side effects other than some mild pain and urgency for a few hours to about a half day afterward. After a year or so, I did run a fever for several days one time, and at that point they reduced my BCG to 1/3rd. I've been all clear now since 2008, maybe helped by the BCG, though I'll never know if the same might not have been true if I hadn't had the BCG. But, I figured it would be best to follow the "gold standard" for forestalling bladder cancer recurrence.

Here's a link to a discussion on this board about the HAL ("blue light") cystoscopy. bladdercancersupport.org/su/forum/31-articles-of-interest/34080-hal-blue-light-cystoscopy-results
I've never had it, and don't think it's yet available in the city where I live.

Just my opinion, but I don't think you need to quit all sugar and alcohol--just be moderate. It might also help to drink more water, if you aren't in the habit of doing so. and certainly if you are a smoker, you should try to quit as smoking is a major bladder cancer risk factor. (I'd also try to stay away from places where a lot of people are smoking.)

Bust of luck to you!

Ann

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.

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12 years 3 months ago #40546 by dieseldoc
Replied by dieseldoc on topic Second BCG Yesterday!!
You really need to depend on your doctors, they are not there for their health they are their for yours! I don't mean that in a sarcastic way. If you are going to Florida, make sure you hand carry your records and lab slides and reports with you. You don't have to stop drinking, just cut back to 1 or 2 drinks when you go out.




Have a good Cristmas, and have fun in Florida.

T1,NO,MO battling bladder cancer since 2005

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12 years 3 months ago #40545 by Joey
Replied by Joey on topic Second BCG Yesterday!!
Mary I just finished my 27th BCG treatment yesterday. My first 6 were much milder than the continued maintenance treatements. Each one has been different and I have had all side effects at one time on another.

Joey

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12 years 3 months ago #40544 by bigmar12
Second BCG Yesterday!! was created by bigmar12
Just to update all of you I had my second BCG yesterday and as usual, had medium amts of white cells and little blood in urine. Was afraid I would be given the second dose, but talked them into it. I have a few concerns, one being that I constantly seem to have this uti, and am wondering what I am doing wrong. Have done some extensive reading and probably have been eating tooooooo much chocolate, have had a hard time forcing myself to go to the gym, and too many Blue Lights with friends. I need to take better charge of my life and am not doing a good job of that. My second concern is that I am experiencing no side effects with the BCG, was hoping that I would wake up this morning and feel like crap! No, I feel fine! I keep reading that no side effects, the BCG is not doing its job. I hope to be able to get the last 4 treatments in Syracuse, NY before the end of January, I have a cruise to leave on Feb. 2nd and can't disappoint my best friend. With past frustrations with my dr office I have scheduled an appointment with the Moffitt Center in Tampa, for the 21st February and will remain in FL for the rest of the winter. When I posted I have Stage 2, I misspoke, I have non invasive bladder cancer, the first tumor removed was a grade 2, not stage 2. My boyfriend lives in Ohio and is insistent that he saw a new procedure on TV about a scope put into the bladder that lights up the bladder and shows the cancer that can't be seen with the cystascope. He wants me to call today to see if I could get into the Cleveland Clinic to have that done before I leave for the Cruise. I want to get these BCG treatments under my belt and see if this procedure is done at the Moffitt.
So many questions????? Does anyone know the answer to this and what the name of this procedure is??? Should I quit all sugar and alcohol intake to ensure I am in the best health? Should I be concerned about the lack of side effects???? Is it ever going to be possible to just plan things in my life like I used to and go with the flow, or should I keep my butt in one spot and get the best treatment from one facility and be done with it? Do I sound like the whiner you don't want to hear from? Sorry if that is the case. I look forward to hearing from anyone that would like to help me with these decisions, since obviously I am not doing very well at making these decisions for my self. My boyfriend says I am hard headed and I guess I agree, never really had to depend on anyone in a long time and not really like the fact that I need to start. Hope you all have wonderful Holidays and a Healthy New Year.
Mary

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