Jack R
Forum Replies Created
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AASTEAPOTS,
Two answers.
1. Anyone can declare and name a month, a week, or a day for anything.
2. Well-known organizations may need to “change” named months due to new or sudden interest or notoriety.
Then there is advertising: “Tuesday is Red’s Tamale Day”.
Best
Jack
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 -
Clyde,
Your case is different from mine, except for CIS. What gives us comfort is likely different. Ultimately, we have to choose from the options that are available to us. That said; I offer the following thoughts.
No one knows how much treatment is the necessary amount for any individual. Dr. Lamm and the SWOG (SouthWest Oncology Group) produced massive research driven data based on “the Lamm BCG schedule” and a huge study population. Those results, which included the BCG induction and long-term maintenance schedule remain the foundation work for evaluating other options. HOWEVER, the data applies to the large group, and shows good GROUP results with the extended treatment schedule. AGAIN, the question remains, how little BCG treatment is necessary for any given individual ?
Perhaps the “smart” choice is to go with the group treatment plan. BUT, even on this board, you will find individuals treated with shorter or divergent treatments with good results. Researcher Dr. Michael O’Donnell is a BCG supporter, but has looked at some of the assumptions underlying Lamm’s schedule. O;Donnell and Lamm and SWOG are worthwhile search terms for a deep dive into BCG info.
It may be helpful to talk to your doctor about WHY he seems not overly concerned at this point.
Perhaps s/he thinks you are showing a complete response ? Perhaps he is concerned about the side effects of BCG treatment on the bladder ? Perhaps he feels that regular evaluation of the bladder is best until (IF) CIS returns ?
Knowing what the doc would want to do if the CIS returns could be (has been for me) helpful and reassuring. Similar to looking at treatment schedules other than the Lamm/SWOG, which was the treatment I also started on years ago and eventually left.
Let your Doc or care team know you are uncomfortable with the unknown future of treatment. Hopefully, a plan can be made that addresses your concerns. There are always treatment options, and it is our right as patients to be fully involved.
Best
Jack
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 -
Nancy148,
The following link is to an article worth discussing with your care team. Individual circumstances vary, and full medical history needs to be considered.
“Elevated prostate specific antigen serum levels after intravesical instillation of bacillus Calmette-Guerin”
https://pubmed.ncbi.nlm.nih.gov/11025701/#:~:text=Conclusions%3A%20Intravesical%20BCG%20therapy%20is,such%20patients%20and%20PSA%20monitored.
The article includes links to other articles discussing similar investigations. The articles suggest that an increase PSA is a possibility worth considering.
Best,
Jack
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 -
Rich360,
Blood clots are not unexpected after BCG treatment. For many of us our reaction to BCG increases with additional treatments; others report no response increase. Bits of tissue, urothelium , urinary casts and blood clots can all show up in urine – which we tend to pay more attention to after BCG treatment.
It is likely that ‘things that look like blood clots” are blood clots. They can provide a unique sensation as the exit the body.
Large clots, in large quantity can block urine flow, and require prompt treatment. Talk to your doc about when to call the office if you become unable to urinate. Also ask about liquid consumption suggestions after BCG treatment.
Best,
Jack
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 -
Random,
Sounds like a Doc who is on the ball and has found an answer to the ‘incidental finding” of wall thickness. That is the sort of story we like to hear. Good luck with the BPH.
Best
Jack
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 -
Dee,
CT IVP is coding for a CT SCAN to be taken after you receive an IV with contrast material that will help visualize your complete urinary tract from the kidneys on down. IVP = Intravenous Pyelogram. This is a good screening test for a wide range of possible issues.
A CT of the pelvis requires a FULL bladder for best results. If the bladder has not been completely filled, it is called a distended bladder. Not an uncommon happening.
Bladder cancer is the big worry when there is unexplained bleeding, and MUST be followed up, until cancer is ruled out. There are MANY possible caused for gross hematuria – cancer is NOT among the most common causes.
Only you and your doc know you history and risk factors – no one here is going to make a guess as to cause of the bleed.
Your Doc is following standard steps to determine a cause for the bleed. It may take additional tests.
Try to relax, and be patient. The time and tests are worthwhile. *IF* cancer turns out to be the cause, early detection leads to a great increase in successful treatment. There are lots and lots of successful stories to read on this site.
Welcome to the group.
Best,
Jack
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 -
Random,
While there are variations, a generally accepted standard for wall thickness is “3 to 5 mm FOR A FULLY DISTENDED BLADDER”. When the bladder is not fully distended (incompletely distended) (not fully stretched) reviewer judgement becomes involved.The good news is that no other suspicions were raised by the US exam, and you report no symptoms.
Many of us arrived on this forum due to “incidental findings” from a non-bladder study. For most, follow up tests give an all clear. For others, the early catch was (later) most welcomed.
Caught early, BC is highly treatable. It is well worth the effort required to settle the “thickness” question.
Best,
Jack
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 -
Byron
Google and take a look at:
Coloplast External Male Catheter 35MM LG Freedom (COL 8400)Freedom Cath catheter is a self-adhering, one piece latex catheter for secure everyday use. Combines a comfortable latex sheath with a wide, watertight adhesive seal. Reservoir bulb prevents backflow of urine. Self Adhering.Size: Large, 35 mmUoM: eaItem #: COL 8400Let us know what your Uro team has to offer.
Best,
Jack
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 -
Byron, Perhaps there is a difference in degree of continence causing our different experiences..
At zero continence the flow is near continuous at very low volume.
With some degree of continence (out of my experience here) perhaps the intermittent high volume expelled overruns the drain tubing ability to keep pressures down and creates a leak.Thinking out loud here. In house plumbing, a surge tank (water-hammer absorber) would be installed to prevent problems from a liquid surge. Seems like a similar issue with a ‘raised leg’ – an increase in pressure in the tubing that can cause a leak.
My tubing has an anti-backflow valve; never had a problem with it.
My thought turned to a Jackson-Pratt drain, (drain with light suction) as used in general surgery, and the Net found some urinary usage. Talk to your doc about this and see if there is anything useful in this line of thinking.
https://pubmed.ncbi.nlm.nih.gov/11257691/
Intravesical Jackson-Pratt drain for urinary diversion after augmentation cystoplastyI hope you find a workable remedy.Best
Jack
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 -
Byron,
Yes indeed a problem. A dry night is wonderful. Hopefully some of this is useful for you.
My survival guide ‘Pee while you sleep”.Replace the catheter with a sheath – UTIs gone. (almost)
Throw away the mattress that is “soft” or has springs.
Plywood on top of bed frame, thick enough it does not sag.
Top with 2 or 3 or 4 inch high density foam that supports your weigh and pads the bones.
NO night bag – if you roll the wrong way, there will be a puddle and an empty bag at the side of the bed.
Leg bag at night, inside shorts with a ‘secret’ inside pocket for the bag – always in the right spot.
Only need to get up every 600 cc or 1000 cc (600 cc bag seems much lighter) Twice a night tops.
Works for me – I do set an alarm to make sure I awake in time..
Best
Jack
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 -
Perry3754,
RA can be a tough choice to make – as evidenced by the disagreement of the doctors. It winds up to be your choice, based on your situation and gut feelings alone.
I am approaching year 7 of recurrent CIS. I was first advised to have a RC five years ago. Subsequent opinions have been more yes than no for the RC. The “standard of care” favors the RC for CIS. Always left unanswered is the question; will the CIS become invasive?
I am a lousy candidate for major surgery. I am old and multiple prior surgeries pieced me back together following a massive traumatic injury. I factor my condition into my decision to hold off on an RC. I have been told I am playing with fire; I accept the risk of not accepting an RC when suggested.
But I don’t completely rule out a RC. What I do want is to be followed closely enough that IF AND WHEN CIS makes a move, it will be detected early enough to allow the RC. I have not yet found a doctor who is confident that CIS can be monitored that closely. Most doctors are uncomfortable with my stance – I always have to explain that I fully accept the results of my decision. If I was 40 years younger, in excellent shape and not a surgery risk, my attitude would be different.
Medical insurance coverage, need to be employed (I am retired) and all manner of living situation are decision factors. You mention having 2 weeks to make a decision, I have no time limit for my decision.
I hope this helps. You have two opinions from which to choose. You know your situation and medical history. Have ALL of your questions been answered by the doctors ? Will you have options open later if you decline now ? What are the longer range plans of care, from the two doctors?
I wish there was an easy answer. I would share it if I had one. I am comfortable with my RC delaying decision, and I do find that comforting. It is a constant chore to keep repeating the same tests on a very frequent basis. Bottom line, it is your choice.
Best
Jack
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 -
Moses19,
COLONOSCOPY is an examination of the bowels via the rectum and bears little to no relationship to the bladder cancer drug BCG.
CYSTOSCOPY is the examination of the bladder via the urethra; it is the primary method of monitoring the bladder during treatment for cancer. BCG is used to treat bladder cancer.
Best
Jack
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 -
Paraman,
All 33 of my BCG treatments, the last in 2018, were covered under original medicare, paid for by medicare, with the regular 20% paid by my secondary.
Obviously, you were given an Advance Beneficiary Notice (ABN) by your treater stating that medicare MAY not cover BCG. If a billing department is not sure, they may issue an ABN to protect themselves, just in case.
An inexperienced biller with outdated materials may have missed a change in procedure codes effective July 1, 2019. The following article from Medicare (CMS) may help when you have a conversation with the caregivers billing staff.
https://www.cms.gov/medicare-coverage-database/view/article.aspx?articleId=56754
Text
“Due to the current shortage of Bacillus Calmette-Guérin (BCG) for intravesical instillation it may be necessary to maintain ongoing treatment for bladder cancer with this product at less than the Food and Drug Administration (FDA) label dose of 81 mg (1 vial) per instillation. In response to this situation, Centers for Medicare and Medicaid Services (CMS) has created a new HCPCS code by which to report BCG which will allow for reporting of doses less than 1 vial per instillation. HCPCS code J9030 BCG live intravesical instillation, 1 mg becomes effective 7/1/2019 and replaces HCPCS code J9031 BCG intravesical per instillation. HCPCS code J9031 BCG intravesical per instillation will no longer be payable by Medicare as of 7/1/2019. HCPCS code J9030 should be reported with the number of units corresponding to the units being equal to the number of milligrams actually instilled per treatment, as the unit equals 1 mg for the new code.”Read the full article. REMEMBER, billing and coding changes happen frequently. Try to work WITH the biller, avoid all disagreement and arguement. Tell the biller that a friend has had original medicare pay all but the medicare copay/deductible/share of cost – see if you can get this cleared up quickly.
Good luck !
Best
Jack
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 -
Sarag,
Much depends upon the meaning of the term “vaccine”.
First, to eliminate a possible misunderstanding of term: “BCG remains the most important vaccine for tuberculosis…”, Donald Lamm, et al, This refers to BCG being introduced into the upper arm. https://pubmed.ncbi.nlm.nih.gov/34417051/
For noninvasive bladder cancer, intravesical (inside the bladder) BCG immunotherepy is a widely used and highly successful treatment.
I have had multiple rounds of intravesical BCG, and have read a couple of discussions considering applying BCG as used for TB vaccination, but I have neither read not had it suggested that BCG vaccination was generally beneficial.
I have accepted and would recommend intravesical BCG.
I would want to review the literature for “BCG vaccination ” and “Bladder cancer” very thoroughly and have such a recomendation fully explained to me.
We all face choices and unknowns on our cancer journey. Choices are as unique as our own situation.
Best,
Jack
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 -
Jnani,
>> “I wonder if we have here some solid knowledge on effective such formulas for bladder cancer?”
>> “Topic History of: Knowledge on effectiveness of Chinese traditional / herbal formulas?”You question and topic are of interest and importance. We can all agree that it is vital to have the best, effective, available and acceptable treatments and medications possible.
When the conversation includes consideration of health care practices beyond (so called) “Western Healthcare”, difficulties frequently arise because of language barriers, unfamiliar history and (lack of) perceived benefit.
May I recommend the following article, a review of the basis and value provided by the variety of different health systems – developed and practiced by generations worldwide.
https://www.hhrjournal.org/2013/10/traditionalalternative-medicines-and-the-right-to-health-key-elements-for-a-convention-on-global-health/
Best,Jack
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