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Update from Warren
Howdy,
just a quick update on me…I had the secound TURBT Monday and all went well. The doctor dug a little deeper this time to try and get margins, because of that he was afraid of me plugging up so he added a catheter this time. I’m still trying to get use to it, sleeping was a little tricky. I didn’t expect it to leak a little when I was laying down. But everything feels much better today, I don’t need to take my pain meds. However, I am taking the spasms meds this time.Any how, I go back next Monday to have it removed and to also get the pathology results. I think today I will pick a urology oncologist to get a 2nd on the slides….any ideas? It would be just a pathology report,not a full on visit. Much cheaper to over night slides than it is for me to fly:)
Take care, Warren. -
43 Replies
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If you find that crystal ball to look into the future with, let me know. LOL
Mark
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
“Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :)
The fishing was good, about three times as much as last year; however, July was pretty bad, I kept going the wrong way and lost out on a lot of fish! As it turns out I should have just come home and did my BCG treatments instead of putting them off till the end of September. Next year I need to work out a better schedule with my doctor so that the BCG is in June (when we are shut down for three weeks) instead of the Cysto….I don’t mind coming home for a day to do the Cysto, but I can’t afford to stop fishing for three weeks for the BCG….or at least that is what I thought, like I said, July was slow enough that I could have done it and not lost anything.
Warren.
Warren,
Glad to hear you found the right stuff to help you out.
Now for the most important question! How was your season? Did you do well?
Mark
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
“Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :)
Hi Warren,
glad things are going good for you, and good info on the pain meds, hopefully your experience on what works and what doesn*t might help someone else who is having the same problems. Good to hear from you,
Diane
Hello Warren… Good to hear from you again. Hope your fishing went well. Glad your BCG treatments are on track and that you are finding ways to reduce the pain for your cystos. Thanks for checking in!
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Hello to everyone,
I got back from fishing a couple weeks ago and just finished my 3rd BCG treatment, now I get another 3-4 month break from them. The news I have to offer is what I have been doing for pain during the catheter insertion…as some may remember, I do have a lot of pain during it so I had been using Tramadol before going in. But it didn’t cut it some of the time so my primary gave me two Percocet 5/325 to try last week…what a difference! I thought the nurse was just starting when infact she was already in the bladder! The doctor’s PA gave me a prescription for 4mg Dilaudid to try today to see if that would be better still, it wasn’t. It was still way better than the Tramadol but not as good as the Percocet.
The reason for trying the different pain meds is to find one for next months Cysto…I really don’t want to go through the hassle of being put out for it. So next month I will be using a couple of Percocets for the Cysto.
Warren.
I understand that you have to make a living. But please make sure that the doc and you are okay with waiting. I feel it should be okay, seeing as how we have to wait three months between checks usually any way.
But I also don’t want to risk losing a friend for a pay check. You know your situation better than I. I will trust your decision and pray for good fishing.
Mark
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
“Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :)
That’s really a question for your doctor. I think he already answered it though by recommending the wait. :)
I agree with him 100% about hopping on a boat after treatment. Sepsis can kill you quickly!
You have to be able to get treatment quickly if you get a severe reaction or sepsis.Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Well yesterday I went in and got my pathology report,(all clear) and talk to them about doing the BCG down in California. That part got shot down, my doctor didn’t like my plan of doing the treatment and then jumping on the boat the next day for a week and trying to work. The idea of maybe getting sick out there and not being able to get to help quickly was a big concern. He said it would be better to hold off until I had a three week window to do the next series. So now instead of July 14th, I am looking at Sept 1st to start…unless the fishing really drops off and I quit earlier.
I am a little nervous about putting it off, what is the opinnion out there about keeping a tight schedule on the BCG and then the Cysto’s. Would a month and a half make a big diff?
I had different docs but at the same practice for my BCG. Explain why and how much it means to your livelihood. It would seem something could be worked out.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
I had the Cystoscopy done at a surgery center here in Bend, it was across the street from the main hospital we have. I think they still would use the surgery center even if they hadn’t put me under…the first Cysto I had was also at a surgery center and I was awake for that one.
The BCG treatments were done in the doctors office by a nurse being supervised by the PA. I’m due for my next round of BCG starting July 12; however, I’m going to see if I can have them move it up to July 9th and move it to Fort Bragg,Ca. I fish commercialy and the big opener of the season is at Fort Bragg on July 11th. It will kill me if I need to tie up the boat and drive all the way home, missing the opener and costing me thousands of dollars.
Has any one else split their BCG between different doctors and different locations? And is there anyone familiar with the doctors in Fort Bragg? I need to talk to my doctor about how he feels about it, I don’t know if it is a big deal or not to them.
Glad all went ok and keeping fingers crossed that the results of the biopsies are also good.I am still doing BCG, but can I ask – did your uro take the bipsies in office, or in hospital? Just trying to get my game plan in place for my own follow ups.
All the best,
Diane
Glad to hear you are doing okay. Best of luck on the water.
Mark
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
“Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :)
Howdy all, went in for my first Cysto after BCG. They put me out because of the whole “I’m a sissy” thing and so they could take some biopsies. Every thing went fine and I should find out next week what the results are.
I asked the doctor about his BCG supply and he said he has plenty, hopefully that will still be the case in four weeks when I start my 2nd round. I don’t remember what kind of BCG he is using, if it is the Canadian kind that shut down or if it is the Trice stuff from Merck.
All right best of luck to everyone…I’m going back to fishing until it’s BCG time. :)
I have two decks overlooking the Willamette River in Portland. Salmon season has been going for a while here. Been too rainy for much luck, but I did see a nice big one being carried through the parking lot next to my place!!
Good Luck, Warren!
SA
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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