Recent T1 MO

2nd instillation of round 3 was alot better than 2 weeks ago. had a shorter fever on instillation, then a little blood for a few hours on instillation day. On to the 3rd!

Joe, just checking in. I hope you are doing well.

Joe, in our exchanges to date, I felt your strength of character. I know you are disappointed, but stay strong. I think your quarter to quarter viewpoint is healthy.

On the lighter side, I thought you were possibly a Texan, but it appears you may live in Michigan. So, a fan of Michigan State or Michigan? I am a Kentucky fan, a tad disappointed with the year. But, next year, another pool of “one and done.”

Unfortunately at my last cyctoscopy i had more cancer removed- at different sites. it was small low grade stuff- but bummed me out (mid march)

I had my initial tumor removed in Michigan, but then started going to MD Anderson in Houston for my 8 week cyctoscopy and then my quarterly cystoscopies. Getting my bcg done at UofMich.

Right now i am taking it quarter by quarter. if i dont string some clean cyctoscopies soon, i understand my treatment strategy may change.

Keep us posted with your progress- it helps us all when people share.

Joe, I simply can't thank you enough for sharing your experiences and I have high confidence you will be successful with the BCG treatments. I will assume you are on the standard 36 month treatment schedule? If you are completing round three, you are well past the most difficult period and from here out, you should get some time relief between treatments. I have read when there are increased side effects, that the BCG dose may be reduced, but I am not a qualified physician. In addition, I have read that administration of oral quinolones can reduce toxicity from BCG therapy as well. I will keep you in my prayers and wish for a highly successful completion of the program. Best regards.

my side effects(not everyone experience the same):

Round 1 (6 weeks)
No symptoms first 3 weeks, wondered if i was getting a placebo. Next 3 weeks i staeted to experience fatigue, feeling really run down, so i laid low on treatment day and the day after.

Round 2 (3 weeks)
week 1: mild fever, 101 until 10pm. really tired.
week 2: no fever, but 4 hrs after instillation ( when they put bcg into bladder) i started urininaring a little blood. not much, but urine was pink, lasted about 2 hrs. really tired for a few days.
week 3: no fever, but blood in urine again, lasted about 4 hrs. called in to asvise of blood. they said its a common side effect, and if it got worse- to recall.

Round 2 comments: fatigue started quicker, they told me there is a cumulative effect, and side effects could intensify as time goes on. The blood freaked me out as last time i had blood in urine was juat before they found the tumor. i also lost my appetite and lost 15 pounds during this round.

Round 3 (3 weeks)
Week 1: Oh boy - they were right about the cummulative effect, 101 fever about 6 hrs after installation, and lasted through the night. if fever would have risen higher or lasted longer, i would have called in. no blood.

And i await week 2.

Other side effects i experienced: after holding bcg in for 2 hrs. i was surprised first urination wasnt much. i now staet drinking water at 1hr 50 min, and drink four 16oz bottles of water while i am resting on the sofa. (preplan some movies or binge watch a tv series). i find that once i start urinating, for the first 2 days, i do not have the bladder capacity i used to. it comes back after a few days.

After 1st urination, i sometimes experienced a mild burn. nothing major, again a typ symptom.

These were “my” symptoms to date. Yours surely will be different. they will go over all of that before you start treatments.

hope this helps. BCG treatments is the typical starting treatment protocol for non muscle invasive bladder cancer. my urologist called it “the gold standard” in a medical article.

Good Luck my friend!