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Newly Diagnosed, New To The Forum
Posted byAtlanta51 on April 17, 2018 at 6:04 pm
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Start of DiscussionNow0 of 0 repliesJune 2018
New member of the group. 66 year-old, causasian male, recent diagnosis of T1 MO, two tumors removed, high grade papillary urothelial carcinoma, invasive into lamina propria, but muscularis propria not involved (i.e., nonmuscle-invasive) and biopsy of areas adjacent to tumors did not identify carcinoma,. To date, one TURBT, another pending soon and scheduled meetings with an oconologist and urologist with advanced urologic oncology at Winship Cancer Institute, bot well recognized in the Atlanta community.
I am hopeful I am a candidate for BCG and nervously awaiting recommendations and a treatment plan.
Atlanta51 replied 5 years, 3 months ago4 Members·16 Replies
16 Replies
sara-anne
Member
April 18, 2018 at 1:04 am
Glad to welcome you, and sorry that you are here!
You are at a good center for treatment….they should really know what the are about at Emory.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderatorglad you found this place- many people here with alot of practical knowledge. You will have questions, none are stupid. i am a 63yo white male. I had a golf ball sized tumor removed on June 2017 lamnia propria invasion, no muscle invasion, had a second turbt in August,they cleaned up the original site and found sine small stuff thar was missed at another site. i just started my 3rd round of bcg.
the good news is you started the healing process. feel free to ask any quesrions of me or others here that are ahead of you…. i am not a medical professional, but will tell you anything about my experience if it helps.
Atlanta51
Member
April 18, 2018 at 6:51 am
Thank you.
Atlanta51
Member
April 18, 2018 at 6:55 am
Joe, thank you. If you are comfortable sharing, I would like to more about the effects of your BCG treatment (side effects, suggestions, etc.).
JoeSmo55
Member
April 18, 2018 at 12:35 pm
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!
Atlanta51
Member
April 18, 2018 at 6:13 pm
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.
JoeSmo55
Member
April 18, 2018 at 8:30 pm
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.
Atlanta51
Member
April 19, 2018 at 1:16 am
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.”
Atlanta51
Member
April 25, 2018 at 12:15 pm
Joe, just checking in. I hope you are doing well.
JoeSmo55
Member
April 25, 2018 at 2:17 pm
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!
Atlanta51
Member
April 26, 2018 at 11:38 pm
Joe, good news; fingers crossed for you.
Atlanta51
Member
May 23, 2018 at 12:12 am
Joe, just checking in. How are you?
JoeSmo55
Member
May 29, 2018 at 5:23 pm
all is well now- this is the time i like… after bcg and before next cystoscopy. we t down to StPete for a few weeks, now enjoying michigan pooltyme with this 90+ degree weather. next cyctoscopy toward end of July.
How are things with you? did you start bcg yet?
Atlanta51
Member
May 30, 2018 at 12:10 am
Joe, second TURBT with mitomycin on May 14. Doctor suggested this TURBT would be easier than the first, but he was wrong. Suffered from dull pain in the pelvic area which has been slow to heal. Second TURBT found another small lesion (peanut size) which was removed (low grade papillary carcinoma), but no invasion into the lamina propria. The Doctor felt fairly confident it was missed with the first TURBT. Best news was that the prior tumor sites (two) uninvolved by carcinoma. So, start BCG in two weeks. Not looking forward to it, but “I am where I am.” Your help on side effects have been very helpful. Hope you are well.
Alan
Member
May 30, 2018 at 12:41 am
Atlanta,
You said, not looking forward to it, but “I am where I am.” You have simply gotten to the “other” side of beating this and took the words out of my mouth when people ask how to deal with any disease. It has happened and all we can do is go forward. You are inspirational. One day at a time. I trust this next round will be the end of this.
Thanks for your message.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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