Jack.... thank you very much 1st off. I am reading ur recommended article now. It is good and having been, as U have, reading every tidbit that seemed reliable over 2-1/2 years now I probably am full of knowledge yet confused as how all this applies to my personal case. My blessings go out to you for you are battling a larger war than me by far.... good luck sir. My diagnosis and treating doctor has been local really good Orology clinic but they sent me to an Urology Oncology specialist at UAMS in Little Rock AR which is about 80 miles from me. Being a training school hospital it is of course a huge madhouse with gazillions of patients waiting hours + for appointments yet considered the best in area. He pulled plug on my BCG with admonishment that it wasn't working we should go to Gemzar and if fails after 6 weeks prep for R/C. I'm about 50/50 in my brain/heart ready for this surgery for a part of me KNOWS this where the fat lady will sing anyway..... it's more a reluctance on my part to accept the compartmentalized medical care I've received. This doctor says this another says that and none have a clue my overall health issues.... I been popped into "cookie cutter" style system that 1 size fits all. Guess that is what our new computerized medical system has evolved in to... technologically advanced but left behind the patient concerns and personal care side. Being a 110% Disabled Vietnam Vet I know this feeling all too well from years of dealing with V.A. Health care system.... yet I opt to pay big insurance premiums to obtain civilian care which seems to devolved into same mindset as VA. I am trying to be a reasonable man and accept I am just a number to them and many other patients in same boat as I am yet end of day my survival instinct kicks in and I strive for what it best for me..... therein lies the conundrum …. squeezing that "me-specific" treatment and advice from doctors is like pulling hens teeth. I do another Gemzar tomorrow and will ask my 2-3 questions of the sweet nurse I have yet some them will be above her paygrade. In all honesty my attentive nurses have been so much more helpful then any of my doctors in their 15 minute appointments of which 10 minutes spend starring at computer. They be busy Doctors..... me I'm just the unfortunate patient. Guess I whine a bit here but am frustrated with the sense of complacency I get from med profession. Or maybe my expectations just unrealistic and based on how doctors were 30 years ago. Again, thanks for ur informative and helpful reply and best wishes with your battle here. (I was career Army and tend to look all things as a mission to complete.... this battle now is just that to me.... win or lose give it all I got).
Your comment of being treated like a mushroom got to me. I have heard it too many times, and have fired doctors because of it. At the same time, I have a fine care team (local limited doc, regional health center urologist, and a university oncology group - plus staff) that provides what they can - which is a fairly standard set of treatment plans.
Reading vetted, respected medical articles gave me the tools to discuss possible courses of action with my doctors. Some like informed patients, some hate them. I have been reading non-stop going on 5 years.
Each of us has a unique medical history that needs to be considered. I don't believe that one-size-fits-all. We need the Docs to put the pieces together, AND we patients need to have a better (or GOOD) idea of the range of treatments available. To that end may I suggest the following LONG article about BCG by one of the experts in the research and treatment field.
'Expert consensus document: Consensus statement on best practice management regarding the use of intravesical immunotherapy with BCG for bladder cancer'
From, Nature Reviews Urology volume12, pages 225–235(2015)
Dr. Donald Lamm, covers the range of BCG topics, from when to use, what to expect, and other options after BCG fails.
While there are thousands of articles on BC and BCG, this one offers a decent look at the range of concerns about basic treatment decisions. Things that a treating Doc should be able to discuss with her/his patients.
It is great that BCG has produced so many good results for lots of people here. For some of us, BCG did not do it.
I have only one kidney, following a major injury, and the kidney developed cancer after the bladder cancer. I have great incentive to keep the kidney, less concerned about the bladder, but most Docs want to take both at the same time, which would result in a life on dialysis, which I would like to avoid. Thus I have a great interest in those reasonable treatments that that have a track record after BCG failure.
For me, IF the bladder cancer goes invasive, then the other treatments are off. It is then time to remove the bladder to prevent metastatic spread. Doctors differ on when to go to "the gold standard" - the RC.
I hope this sort of info helps.
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
Yes 1 each intravesical into bladder per week for 6 weeks. My tumors under BCG were getting smaller yet severe effect from BCG after 3rd TURBT. Think doctors opinion is it is returning so fast now (4-6 months) and BCG not been effecting in remission time to just go for Gemzar the R/C. Sure I'd like keep treatments going and keep bladder but end of day my concern is it spreading (not into muscle wall yet which is normal criteria for R/C he said) so R/C best bet to have cancer free.
PS.....have developed dull sometimes sharp pain in left side of back general kidney area that just don't stop since 1st Gemzar on 7/03. Have years of lower spine surgery and just blow any back pain off to that but this in new spot and feels deeper not like muscle spasm. No fevers just real tired. Do have couple cysts and lesions on kidneys in CT scans but been there for years in scans.
Jack thanks for tips. Seems the joint pain and like real bad fatigue did set in seems within hours right about 48 hour mark after 1st Gemzar. Lot of outdoor chores this time of year (own acreage in country) and add heat in Arkansas and taking all I can muster to do even basic things. Concerned about my debilitation level through summer. Think (hope) will make it till fall/winter to do RC but suppose I should face facts here that gonna be a long haul and lot of down time. Is the tired effect accumulative as treatments stack up? Does it get better after few days? Does it just worsen? Do agree on BCG.... 1st go round 2 years ago I got the expected "flue symptoms" for couple days then ok..... 2nd go round 9 months later was about same with fact of ability to hold full 2 hours at clinic much harsher..... 3rd go round month ago I was in severe distress with very high fevers chills and every bone in body screamed for 2-3 days.... doctor pulled plug after 2nd time and started on Gemzar. Man this is a roller coaster ride that is unpredictable and U make point Doctors not very helpful with warnings and advice. Treat me like a mushroom. They put the happy face on like I don't know what I got.. Again, thanks for your response and verified what I was thinking.