Hi Kitts: I am 72 year old and had 6 BCG and 6 Chemos and what you have been told is exactly how it will be --- yes I had one BCG that I could not hold very long --- but I stayed at clinic and did all the rotating there and then tried to hold it for as long as I could after leaving. I am hoping all will go will for your Mom. Take Care, Herb†
Age 72 had radical 9/11/10 have conduit everything is fine, grateful to be a cancer survivor. Lost Dad and Brother to Cancer both in their 50's.
thank you for your response, and after reading more on this forum I am definitely going to be asking a few more questions and clarifying some things before we go forward with this ... the information on possible infections for the patient has been invaluable, and I will follow up on that with the primary
I did ask the urologist about any risks associated with possible unknown prior occult TB infections, as this was something that came up in a very bad way for another family member a few years ago (hospitalisations unrelated to cancer) - dr said he was unaware of any ...
thanks again so much for the response, I will keep researching and asking questions, this now doesn't seem quite as cut and dried/walk in the park as the dr first presented it ...
thanks so much for your response, this is exactly the sort of information I was hoping to find ... I really had no idea if the prolonged retention was difficult for people but it seemed to me it might be ... a close by hotel (I think there are a couple of nice ones not too far away) might be the solution, as I was trying also to reckon out how my mom might turn herself every 15 mins in the backseat, since she has lumbar stenosis (forgot to list that one) and is not too nimble when reclining
if it weren't serious it might be comical, really, your father's oldsmobile as a travelling clinic, lol
and, duh, yes I should call my own doc on my susceptibility, can't think why that hadn't occurred to me, lol
thanks also for your good wishes, I will certainly post updates as we go along,
With your concerns, it wouldn't hurt to ask if your mother could remain at the doctor's office until her first voiding after the BCG installation. The protocol is exactly what I have experienced. There have been times when I could not hold it the entire 2 hours, so that is a legitimate concern. Best wishes to you and your mother.
Oh Kitts, you do have a lot on your plate. I will try to answer a few of your questions and I am sure others will also.
First, the protocol that is being used for your mother is very typical. I, for one, have "BEEN THERE, DONE THAT." An hour drive home may be a problem...they like for the patient to hold the solution in the bladder for as close to two hours as possible, but some find this a bit difficult. If your mom's bladder habits are pretty normal now, it may be OK. I would just be prepared for leaks! You might want to consider a close-by hotel for the day.
As for your immune issues, that depends on what they are. The best place to ask about that would be your own doctor. He would know your susceptibility and could advise you.
Best wishes to you, and I am so glad your mom has you.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
first, thank you all so much for being here, we are really newbies on this, and find ourselves flailing around a bit looking for information
if my questions have been asked and answered here before, please just point me to the relevant thread, thanks in advance
apologies upfront for presenting a lot of info and a lot of questions a bit breathlessly, I am sorry for that, it's becos I am feeling a bit overwhelmed as the sole support and assistance in this, and want to be sure I do the best for my mom that I can
the bladder cancer: my mom, 87 yrs young, just underwent a TU resection, the mass was a T1, high grade, with no muscle involvement (gross haematuria w/out pain or difficulty urinating was the initial symptom)
she is going to be starting the 6 week BCG therapy next week, if her ct scan tomorrow goes as expected wrt to lymph nodes, kidneys, etc (no further invasion expected)
other possibly relevant medical info on her; in addition to the bladder cancer, my mom has hypertension (controlled with medication), is taking meds for hypothyroidism, is on oxygen with the underlying pulmonary issues not yet fully determined/diagnosed, and recently had a stubborn hyperkalemic episode with elevated creatinine that required hopsitalisation to resolve
my questions concern the typical, expected setting and management of the BCG therapy sessions - the plan, as we understand it, is for the instillations to take place at the dr's office, but that she will then be sent home to retain the solution as long as she can up to 2 hours (rotating her position at 15 minute intervals), then expel, taking precautions to add bleach to the urinary void before flushing the toilet, guard against splashing/spotting of the urine, and to sterilise the bathroom after voiding of the urine w/ solution is complete
does anyone here with experience know if this is the normal protocol? how challenging is the process to someone older and less able/mobile?
the follow-on questions here have been left as messages with a nurse navigator and some other support personnel in the dr's office and hospital system, but as yet have not heard back, so thought I would try here - if these are beyond the scope of the forum, that's okay, will keep trying with local sources, but thought I would at least put them out here and see what others' experiences might have been
I see that in some countries (other than the usa), patient instructions indicate that the patient remains in the clinical setting until after the initial void of live solution, since it is considered a biohazard (my sister underwent breast cancer treatment in germany and had follow up care in france) - we have nearly an hour's (sometimes an hour or more w/ traffic) ride home from the dr's office, is there a chance my mom will be unable to wait to get home for the initial void?
also, since I will be the person assisting my mother, and I have several chronic auto-immune diseases that render my immune system somewhat compromised, should I be taking extra precautions? should I not be the primary assisting person? should we look at enlisting some other/additional help?
I hope this isn't too much of a niagara of info and questions for my initial post, as I say I am really a newbie with this and probably ditzing out more than a little trying to keep my full set of plates spinning -
thanks everyone for any help and information !!!
also, very best to everyone here, will keep you all in our prayers and thanks again for being here,