Completed first round of 6 BCG installations.

[lefmike]

So now the waiting until the scope begins, life is still somewhat on hold until then.

Most of my instillations went very well, better in some ways than I expected.  YUP, I had the bladder cramps and the flu like symptoms for a day or so,  but no bleeding whatsoever at anytime.  The 5th injection, same symptoms as previous but  I also had a woozy of a headache later in the evening but one Tylenol was all that was needed to take care of that.  I mentioned  to my EURO  that I think the hardest part of this whole experience is the fear, fer of it coming back and fear of losing my bladder.  I’m much better now emotionally than I was 6 weeks ago but those fears are still there.

Those who are just starting this treatment, read what you can on what to expect, I was expecting much worse but ended up being pleased with my side effects….   Best of luck and health to all.

Mike

[marysue]

Hi lefmike:

I’m glad to know that you got through your treatments okay.  I had quite a few side effects but persevered and am glad that I did.  I’m over 9.5 years cancer free.

I had “fun” with headaches, muscle and joint pain, bladder irritation, constipation, irritable bowel, chemo brain and on top of that heavy duty night sweats as the treatments coincided with the onset of menopause and the BCG made them worse. I self treated the bladder pain, muscle and joint pain with Tylenol or Aleve, a hot bath, herbal tea and a lot of extra sleep.  I used this as “me time” and a good excuse to slow down and finally catch up on all the novels I wanted to read and binge watched some favourite TV shows.  The night sweats abated some once treatments were finished.  Acupuncture and yoga helped.

I too, experienced a lot of pre cysto exam anxiety wondering if it would come back.  I still check my urine when I go.  I think it is from habit now more than fear.  I think the fear of recurrence lessened for me once I got past the two year mark.  For me, I think that time frame stuck in my mind because of what my uro said that if you get past the 2 year mark, the chances of recurrences starts to drop.  I was 2 months short of that when I had a recurrence of a single tumor in 2010.  Once I got past 2012 after completing a second round of 6 and 3 rounds of 3 follow up cycles, I felt that I really had a better chance.  As I “graduated” to the next schedule of cysto checks I found that was such a boost psychologically.

I am currently on annual check ups but if I’m clear at my next check in the spring of 2020, I have the choice of cutting loose, or going on 18 month or 2 year check ups.  I will most likely opt for every two years as I want to stay connected to my current uro that I really like.  I do know of people that had recurrences more than 10+ years apart so I’m not taking any chances.  I find that I don’t think about recurrences too much anymore but I still get the heebie jeebies a few days before my cysto exam.

I wish you the best going forward.  (((HUGS)))

 

[Jack Moon]

Well done Mike. Patients vary in side effects, my 1st 6 treatments the side effects were a lot like yours.

Hoping you get the all clear at your next cysto.

All the best,

Jack

[Rick B]

Hi Mike,

Congrats on completing your series of 6 instillations. Like you, I too fear the recurrence of BC. This is something that will be with us always.  I keep reminding myself that BC is a treatable cancer and if caught before invasion the quality of life doesn’t really change other than the follow-up. I am now on annual follow-up and would not change anything in that regard.

The best two words are “all clear” which I wish for you at your next cysto.

Stay positive, stay strong & keep us in the loop.

Rick

[lefmike]

Hi all, it’s been a week since my last instilation. Originality I was feeling the usual side effects, but we drove for close to 8 hours on Monday, (last BCG was Thursday), and since that time I’ve been feeling discomfort and wondered if being sitting and bumping with that drive and driving since. My urine is a little darker yellow but clear.. Just wondering if anyone else had issues a week after their last of 6… Obviously mind starts racing..

 

[Rick B]

Hi Mike,

Your bladder has gone through a lot over the last several weeks (months even) so having some discomfort at this time would not be unusual. The dark yellow may be a result of dehydration so perhaps more water intake daily is in order. You didn’t describe the discomfort you’re experiencing but if it’s severe and worrying you then maybe call to your URO would be appropraite. Your follow-up scope is probably another 4 to 6 weeks away so if you think that’s too long to wait then make the call.

Also, keeping a log of your concerns as well as details/timing of the discomfort you are experiencing would be very helpful in your discussions with your URO.

Wishing you the very best…stay strong, stay positive.

Rick

[lefmike]

Thanks for the info Rick B, much appreciated.  Pain wise it’s more annoyance than true pain.. Just frightening as I went through the 6 installations relatively issue free initially.  My urine was slightly darker, not a dark yellow and I drink over 3 liters of liquids daily.  I was concerned being in a sitting position for hours on end might have injured an already assaulted bladder, but I’m now wondering if it’s bladder and bowels, the irritation is still present just not as much.. On the drive home we’re planning on stopping every hour or so, stretching my legs and back.. Hopefully that takes care of any “driving kind* of irritation.. Staying positive…

Thanks again

[Author]

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