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First BCG Treatment
Hello My name is Laurel, I am a 57 year old woman who was diagnosed with high grade T1 Bladder Cancer on May 29, 2014. I am going for my first BCG treatment on the 20th of August. I was hoping someone would be kind enough to let me know what their first treatment was like and what side effects they had. I do realize everyone’s experience is different but I would like to get an idea of what to expect because I am nervous and a bit scared.
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15 Replies
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Laurel, there is indeed a shortage of BCG. There is quite a discussion of the causes and expected timetable in a Forum thread under the category “non-invasive.”
You will want to do the BCG series as soon as it becomes available. I suspect that you doctor didn’t want you to panic! :laugh:
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Hi Everyone:
Well, I had my first BCG treatment yesterday and it went very well. The only side effect I had was I was awakened early this morning with a need to throw up, which I did and I have been very tired all day.
When I went to the infusion center I was informed that I was receiving the last BCG treatment on hand in the hospital and I would not be able to receive the rest of my regiment until late November or early December due to the fact that the manufacture was having difficult keeping up production. The nurses at the infusion center told me to inform my doctor the next day.
I called my doctor this morning as instructed, he did not feel it was a big deal. He informed me that he would just check me in 3 months as planned and that I should just go on as if I did not have cancer because he had removed the cancer and the BCG was just to help my immune system to prevent it from reoccurring.
The doctor scares the crap out of ME that I have to have A SERIES OF 6 BCG treatments because I HAVE such high grade cancer. THEN WHEN THERE ISN’T ANY MEDICATION AVAILABLE, IT’S NOT A BIG DEAL THAT I CAN’T GET IT BECAUSE HE REMOVED ALL MY CANCER AND THIS TREATMENT WAS JUST PRECAUTIONARY.
AAAAAAAHHHHHHHHH!!!!!!!!!!
I just had to vent a little. Either I need this medication or I don’t there is no in between.
HAS ANYONE ELSE RUN INTO NO BCG AVAILABILITY???????
Laurel
Laurel,
Thank you for your kind words. When I first read some of your posts it was almost me to a tee! My doctor was also very concerned as well and has called me. Even though I am scared I felt better knowing that my Dr and his staff are so very caring. I also was instructed to do the very same. Someone from the site also suggested to wear white clothing so that you can just toss them in the washer and bleach them after your 6 hours. Also if you are not already taking meds for spasms or pain talk to your Dr. About having some on hand prior to treatment. My 1st treatment was a breeze compared to the last 2. But I am 3 down now!! Yea!!
Feel fee to ask me any questions you have! Keep reading on the site. There is a lot of helpful information shared here.I wish you all the best and good luck with you treatments and keep me posted!!
Carol58
Hi Carol58:
Thank you for the welcome. Sounds like you were diagnosis and your treatment has been fairly in track with mine. I am sorry to hear you are having a hard time with the BCG treatments. I hope that they lower the dose and you have better luck.
My first treatment is next Thursday and I am very nervous but I will survive. I have been reading on the internet that I should have bleach for the toilet for the first day and that I should have sanitary wipes to use after each time I urinate. Is this what you were instructed to do?
Have a wonderful weekend and It is nice to meet you as well.
Laurel
Hello Alan,
Thank you I appreciate your kindness.Sorry to hear you have to have surgery. My tumor was approximately 5.08 cm and flat. I also had the mytomycin wash right after removal.
Best wishes on your surgery!
Carol 58
Carole
I am scheduled for surgery on Sept 17th my question to u is what was the size of the tumor u had and I am so sorry you are having a hard time with the bcg.
Thank you
Alan
Hi Laurel and welcome!
I too was recently diagnosed with stage 1 Grade 3 with a large tumor. Actually it was April 26th. Turb on May 2nd. Then another turb on June 6th. Postponed my bcg until the end of July due to the issues with my bladder. Today I had my 3rd treatment and I am sorry to say that they do get worse. But as many state here if it gets to be to intolerable they can lower the dose. There are a lot of great people on here to answer any of your questions and give lots of support.
Nice to meet you,
Good luck with your treatments!Carol58
Stage 1 gr 3 BC
2 turbs
3 bcg treatments
Hi Sara:
Thank you for your message.
I think my doctor is scared for me.
My doctor went out of his way to priorities my surgeries and he calls me regularly to see how I am. I know he was surprised how large the tumor was when he went in the first time because he keeps remarking to me about it to this day. So I know you are right it is serious even though there are days it is hard to believe I am even sick, then there are days I am so tired I definitely know something is wrong.
Have a wonderful day,
Laurel
Laurel, I think that the reason that your doctor is being so serious about this is that it IS serious. High grade can get out of hand quickly if not treated. So he adds a bit of “scare” to ensure that you follow the protocols. You ARE on the right track, and as you can see, there are a lot of us who have been where you are and are still here!!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Diane:
It is encouraging that you had the same diagnosis as me in 2006 and it’s 8 years later. The way my doctor talks to me he makes it sound like I might not be here in 5 years.
Laurel
Hi Diane:
Thank you for the response. I hope you feel better today. I must say that having people who are going through the same thing to talk to helps a great deal.
Thanks again and have a wonderful day
Laurel
Hi Laurel and welcome too. I had same diagnosis as you in 2006, and have also had BCG , just had a maintenance treatment yesterday, and spent the afternoon drinking loads of water and not venturing very far from the bathroom, today still feel a bit fluey, but over the worst of it. It is not the pleasantest treatment but much better than some that other cancer sufferers have to put up with.
Hope all goes well for you,
Diane
Thank you for making me feel welcome and answering my question. I will look at the forums and see what I can find. This has happened so fast I still feel like I have been caught up in a tornado and I haven’t landed yet.
Laurel
Hi Laurel!
CindyB just published her experiences with her first BCG on page 5 of the thread just below this on the Forum (topic “just curious if this could mean more.”) It is an excellent summary!From my own experience, the first treatment is not bad at all. After the two hours “holding time” are over, I felt crampish and had to go very often. Had a bit of blood show up also. And the next day I was a bit fatigued. Over the next 5 treatments the symptoms intensified. I did go through the maintenance regimen also (once a week for three weeks every three months.) The longer you go the more pronounced the side effects are (and this shows that it is WORKING!) If they become bothersome, the dosage can be reduced to as much as 10%. By the end I was at 1/3.
It is very do-able, and well worth the effort.
Good luck to you!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Hello Laurel… I just wanted to say welcome to our forum and that I am glad you found us as you start your BCG treatments. I can’t answer your question because BCG was not part of my treatment plan, but I can definitely relate to the being scared part. I think everyone here has felt the same when first hearing those words from the doctor.
There are members here who have very similar diagnoses as yours and have been through the BCG regimen. I’m sure some of them will reply to you, and there are some current BCG threads going on right now as well. If you see a post by another member that interests you, please feel free to join in the thread as well.
Again, welcome. I’m sorry you had to seek us out because of a bc diagnosis, but I think you will find kind people with very helpful information here.
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TNSign In to reply.