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6-WEEK TREATMENT: First Installment – looking good
I received the first of my 6-week BCG treatment yesterday. Other than the pain of having the catheter pressing into my bladder the wrong direction (and they ask you to just relax), things went fine. I took the advice I picked up from the site (no water/food for a few hours before, lots of water following, lay on stomach and back to swish things around, etc.) which I am sure helped.
It was not until later in the evening that I began to feel ill. It was like having a mild fever, but without the fever (I checked several times). My eyes felt dry (burned a bit), and I felt on the verge of developing a headache. This continued until morning, and stayed pretty much the same until late-morning. Then the pressure behind my eyes intensified, and it was difficult for me to concentrate (again, similar to a fever, but no fever).
After sleeping restlessly for a couple hours, getting up to void and drink water periodically, I finally got up. I felt less sick, but still not much better. It wasn’t until late in the evening that I began to feel better. I now feel like I did early yesterday evening (like I am just getting over a fever).
I posted this to keep folks up-to-date, to help others set expectations, and for my own record (I’m expecting the results from future “installments” to be more intense and last longer). I can’t tell you how much I appreciated the postings of others concerning their experience; I feel that reading your posts better prepared me for this experience.
Craig Stockton15 Replies-
I am so thankful to have found this forum! A couple hours after, I experianced severe fatigue and then somewhat of a headache and some eye symptoms that I can’t really describe..but, “dry eye” could be it!!..I feel so much better knowing that I am not alone in this..thanks to those responsible for this site and to those willing to share their experiances to benifit others! Healing thoughts to all, gina
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Thank you all for the encouragement.
I just finished my fourth instillment, and again had minor side effects (a headache that was intense for a bit, but was gone after a good nap). I am in the home-stretch of my initial round, and am looking forward to a full week of work without interruption or working from home.
Glad to have you all with me; sorry it has been several days between posts.
Craig Stockton
I had my first round of BCG treatment (6 weeks) in 2000. I did not have another recurrence until 2007. I did not have any side effects at all from the BCG. I have not read that lack of symptoms/side effects may indicate ineffectiveness. At any rate, it wasn’t true in my case.
Connie
Craig you are correct as being grateful for minimal symptoms. I have read many stories on this web site where people who have had minimal side effects have had positive results as to reocurrences. I just think the treatment effects everyone differently.
Joe
Guess I should have added this reply much earlier; better late than never. ;)
Last week’s instillment went very smoothly, with virtually no side effects other than a feverish feeling on the night of the treatment. Based on all I have read on the Web Cafe, and in the medical documents, I expected my second and third instillments to result in more intense symptoms. I have heard that a lack of symptoms may indicate ineffectiveness of the treatment, but I am assuming that I am receiving full doses (I plan to check on that tomorrow), so I guess I should just be thankful for low-grade symptoms.
Then again, there has been a lot of prayer on my behalf — better to have FAITH than FRET.
Craig Stockton
Just had my 5th initial BCG treatment yesterday with the only side effect being an increase in frequency. So far they have not been a problem.
Joe
Craig,
I have had a 6 week treatment and 2 maintenance doses (3 months apart). I didn’t have any symptoms until the 5th and 6th instillations. The maintenance doses had a lot more side-effects – spasms, fever, chills, aching, sloughing off of tissue. Just got back from meeting with Dr. Lamm in Phoenix for a second opinion on my treatment (my doctor’s advice to do this). Seems that if the side-effects become too great that cutting the dose or reducing the time in the bladder is reasonable. Just be sure to share all your experiences with your doctor, and seek a second opinion if you are uncomfortable. I believe that the number of different experiences with BCG is as great as the number of people receiving the treatment – Good luck with your future doses.
Ross
Ross M
TaG1 March 06
Recurrence Jan 07
BCG Maintenance after 6 week treatment
Craig,
I haven’t been online for awhile, but saw some of your postings.
I’ve been thru 18 BCG’s from feb 2005 to march 2006. without reoccurance.
Some of my experiences I have had:
When the fever and ill feelings are beyond 1 day my dose was reduced to 1/2 which the doctor says gives the same treatment. That did reduce the ill effects much. Also everyones reaction may not be the same.
Much water after treatments is required for days after..
One last tip when BCG is in the bladder for 1-2 hours the rolling and swishing while laying down also get the top of the bladder. One patient went home after BCG was instilled and sat in the recliner and over time tumors started in the top of the bladder which did not get the full treatment.
You may already know much of this…above all hope and think positive…
DonLATE UPDATE:
I should have added this on Saturday. Late Friday night (1am Saturday morning) I passed a total of four blood clots during two separate urinations. This was actually encouraging, after my urologist indicated that the hope was for some level of symptoms to be experienced, and after reading the posting of Dr. Lamm’s work on BCG treatment (http://blcwebcafe.org/protocol.asp).
Thanks all for your encouragement, and for relating to my experience. As has been said many times before, it is nice to know that I am NOT going through this alone.
Craig Stockton
I will have my sixth Installment of BCG tommorrow, no fever side effects to report. (as far as side effects go, I think the more I read about them, the more I have them). I have had major burning when I pee after every installment the last has been the worse the first 2 nights after #5, I got up every hour to go. I have had a headache for the last 3 days. I cant say it is due to the treatments as I am prone them anyway.
I Started Detrol last week and I think it may be helping.There seems to be a lot of people from the Seattle area being newly diagnosed with Bladder cancer? Must be the Rain…
From the eastside (Sammamish). Eric
Imndnile no more.
DX: TIS (CIS): Carcinoma in situ (non-invasive flat high-grade (G3) cancer)
12/13/07
Hi
My partner Steve, had a fever the first time, was fine 2nd, 3rd, 4th and 5th and then developed awful eye problems and joint aches after the 6th. These symptoms were so pronounced that we were not sure whether BCG could continue. He has developed a dry eye condition but his joint problems seem to have resolved. Since then he has received maintenance treatment 3, 2 then 3. These last three have caused frequent voiding – every two hours at night – but he is, we hope, still clear 16 months after a original diagnosis of T1 G3 plus CIS. He tolerates it in good spirits as he knows ‘there is always someone worse off than yourself’. This site has been fantastic for me. Steve doesn’t come online – it’s not his thing – but I report all sorts of things back and he takes it on board.
Ceri
GP aware of haematura in Jan 06
Diagnosed BC Nov 06
T1G3 with CIS
Age 46, Smoked since 15, gave up at diagnosis
Hi Craig
I finished my 6th BCG treatment about a week ago. I did struggle with some flu like symptoms but the thing that bothered me the most was bladder spasms. After my 2nd instillment the PA gave me detrol to help control them. In my case cutting down on caffine also helped.
At any rate I made it through with no major problems and I’m sure you will as well.
Best wishes
Gcurt
Dx: CIS 12/07Happiness is not a station you arrive at, but a manner of traveling.
M. Runbeck
I have 3 treatments so far with no side effects. We will see how the next three go.
My tumor was 4 cm by 3 cm low grade, non invasive.
Joe
My first treatment is scheduled for April 2. Thanks for doing this now so that I can know what to expect!!
Sara
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
hello Craig,
Glad to read your BCG account, hope you are feeling better. Best wishes.
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