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Desparate for some input

1 year 7 months ago #53283 by cltyxx
Hi Gil80,

Reading your posts tonight, you are in good hands and you have great spirits as well.

Good luck in your treatment and be sure to share the good news!

CLTYXX

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1 year 7 months ago #53281 by Gil80
Well today is Friday and glad this week is over, Met with Medical Urologist Monday and in addition to PSA and blood work which is normal my urinalysis showed microscopic blood and +
sent for C&S results neg for bacteria results today.. So wife (nurse) says they need to do Cytology on urine.
Had PET SCan today long process. So testing complete and Monday at 10 am appointment with Medical Oncologist at MDA Phoenix get result and make decision on one of 2 options I am down to Chemo with Immunotherapy drug or just the Immunotherapy drug TECENTRIQ /atezolizumab This drug was just released Apr 17, 2017 - FDA Grants Genentech's Tecentriq (Atezolizumab) Accelerated Approval as Initial Treatment for Certain People with Advanced Bladder Cancer.

Anyone trying it yet?

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1 year 7 months ago #53171 by Gil80
Last Monday I had TUR and was in hospital over night. Came out of recovery with a catheter and unbelievable pain that I soon learned were bladder spasms. Discharged Tuesday afternoon and nothing relieved the spasms and even oncologist felt bad. They were like end stage labor pains. Spasm would lat minutes (felt like hr) then total relief and 10 minutes and back again. Things got some what better when I got home and my wife took over (she' and RN of 55 yrs) but the real relief came Thursday when I returned to oncologist And cath removed and I had to stay there (MD Anderson Phx) for 3 hrs till I was voiding enough. I did and it was bloody urine. Got home and had few days with my wife taking control of telling me what to do and when (which is a reversal of roles for us) I am not a pill taker and on 2 prescription meds a day and about 11 supplements she given me for year.
So this morning I am off to have CT scan on lungs--had CT of abd and pelvis before surgery
An tomorrow I meet with doctor to review all results. Not looking forward to that but wife been making me read everything and pushing me not to go into meeting with no knowledge at all. I know she right when it comes to medical and health issues she has always managed and advised entire family. She should have been a Nurse Practitioner.
She say the pic of my bladder and has told me "the bladder need to come out--the tumor is BIG' And to be prepared for what oncologist has to say tomorrow. Also she said the option she thinks I can handle is the ileal conduit. So anyone had one and what's recovery like and were was it done? I am up voiding at night every hr--per wife she said tumor is so large little room for urine.

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1 year 7 months ago #53165 by Hannah01
Hi Gil,

Sorry to hear about you. In case of chemo you have knockout like situation for couple of days. Hoping things will change positively for you.
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1 year 7 months ago #53127 by Sean T
I can only offer you my good wishes. I'm still fairly new to all this and I haven't had to make the decision you are facing.

08/16/16 - TURBT - 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 rounds total - last March, 2018). As of latest cysto, Sept. 12, 2018 - cancer free!
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1 year 8 months ago #53109 by Alan
Gil,

Welcome just sorry you have to be here. You are asking all the right questions and I add the MD Anderson group is exceptional. You should be in good hands. With a "large tumor to big for the cystoscope" you are thinking right that the bladder is likely to have to go BUT, I have learned too many times..........one day at a time. Let's wait and see what the TURB and pathology say!

This is treatable and beatable. Ask away any time any subject!

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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