Update and surprise

5 years 5 months ago #56050 by Jack R
Replied by Jack R on topic Update and surprise
Dave,

Sorry to hear of the new development.

The thinking about my chemo & concurrent BCG was a bit different. Not sure if it truly relates, but will offer a question or two to ask the docs.

A year ago, it was BCG maintenance time when cancer was found, at CT, in my kidney (I only have one - the other was lost in an accident). I was told that chemo with only one (cancerous)) kidney would be rough, if at all possible. I elected to go the chemo route - Five 3 week cycles of Cisplatin and Gemzar - AND the three week BCG maintenance at the same time.

Chemo involved a long list of "other" drugs, all intended to combat chemo side effects - constipation, diarrhea, mouth sores, nausea, etc. Additionally there were pre and post chemo IVs to prepare and flush the kidney.

The oncologist disagreed with the urologist's recommendation to eliminate all steroids. They were explained to be used as part of the drug program to prevent nausea. Steroids were both daily tablets and at each IV. The urologist felt that the immune suppression from the steroids was counter productive to BCG treatments; the oncologist disagreed and suggested not combining BCG with chemo. I chose to do both without the steroids.

It was really a choice between the opinion of the urologist I know and like, and a new, first time oncologist I did not know.

The BCG experience was no different than all the prior BCG treatments.

The kidney cancer no longer shows on scans. Chemo doses had to be reduced a couple of times, and week long breaks were added to get me through. It was worth it all to keep the kidney and avoid the dialysis that would be required if I lost the kidney. The bladder T0 CIS seemed to be gone, but promptly returned. I did not feel that I lost anything by not taking steroids. Maybe it increased the nausea and vomiting, hard to tell.

All that to say, see what your urologist thinks of having BCG and steroids at the same time. Then ask the oncologist what the steroids (prednisolone) adds to the R-CHOP if it is an issue. My immune system took a major hit during chemo, like most people, it is a standard side effect - weekly blood draws watch for it. The best decision I made was to have a port installed to save my veins. Utter fatigue was the worst side effect. Things continue to move in the right direction.

Best to you on the new journey. Hang in there,
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
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5 years 5 months ago #56049 by dtat60
Update and surprise was created by dtat60
I thought I would update everyone with my present situation.

I've had good luck for the last 1.5 years with BCG treatments. I'm scheduled to have my #19-#21 in February......however, I had a nasty surprise in September. Around March it felt like I had a little pressure behind my right eye. I also have glaucoma so I went to my ophthalmologist to have my IOP checked. My pressure was fine as well as optic nerve. A few days later began to notice that my right nostril was a little stopped up. As it got worse I used Afrin and it cleared up. Your not supposed to use Afrin over three days or risk rebound congestion so I switched to Nasacort (steroid). That worked for a few days but then seemed to be less effective. So I started just using saline spray.

I had a upcoming appointment with my Urologist the next week because my yearly PSA test showed it had doubled to 5.09. Doc gave me a DRE and said I had some enlargement but didn't seem to have a problem. He gave me prescription for Bactrim for 30 days. Possibly the last BCG maintenance or just the frequent catheter was the culprit. That dropped my PSA to normal levels.

I rationalized that since I was taking the antibiotic for such a long period that I would wait and see if my nasal congestion cleared up - it didn't. My R eye looked like it was kind of bulging. So the last week I made a appointment with ENT physician. He said it looked like I had a large polyp blocking any airflow, took a biopsy and I would need a image guided CT scan to examine and prepare for surgery. Got that. Path came back ***surprise - B cell non-hodgkin's lymphoma***. I'm having R-CHOP Chemo and all that entails. I had my first treatment today (6 hrs).

My Oncologist said he would be hesitant for me to have my scheduled BCG in Feb. while on the chemo because my immune system would be very weak and susceptible to infection.

I haven't contacted my Urologist yet but was wondering if anyone had a similar situation as far as delaying the BCG maintenance. Also my PET scan show "Circumferential wall thickening of incompletely distended urinary bladder without focal lesions." ?? Significant???

Peace and Love,

Dave

08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG

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