My dad's story...questions

Barb Gemzar and Cisplatin has become kind of the standard means of chemo here in the states to treat bladder cancer. I had it but day 15 it turned out I had an allergic reaction to the Gemzar very strange because up to that I was never had an allergic reaction to anything excepting hitting the lottery I got rashes on my shins and forearms so they put me on the high intensity MVAC chemo www.chemocare.com/bio/list_by_acronym.asp?acronym=MVAC I got the 3 month treatment so that was every other week 2x each week I got and then on that Friday I got a shot of neulasta to keep the WBC count up. www.drugs.com/neulasta.html
Remember Barb some people get the chemo before the surgery so they have no idea of the lymphnodes invovled it's just the chemo they use more today Gemzar and Cisplatin.
So I had no choice and made out fine with the MVAC got tired out more then nauseous but they gave me zofran in the IV for the long day and a zofran tablet for the short day. I had zofran at home my insurance would pay for 6 tablets a month $35 a pill so I used compazine more if I felt nauseous and they worked and were alot cheaper and saved the zofran for those emrgencies.
I was treated at the Univ of Penn so each new week I get my blood work done to make sure my platelets were high enough and then see my Oncologist's nurse who was like one step short of a Dr. and then I see my Oncologist Dr. Vaughn and then the if all was good I get treated for that week and repeat the same the next time I came in. See at Penn I had all my Dr's under one roof my Oncologist/Urologogist, my Surgeon, and also my Oncologist which made things nice.. Good Luck, Joe

Thank you Rick! Oh - I am so on the "court reporter" detail...I got a day planner before dad had his surgery and have been having him record his pain meds every day...so this won't be so much of a change.

Is Gemzar and Cisplatin the usual chemo given after positive node results? Is it usually a 12 week course?

Again - thanks for the tips...this will be very helpful starting next week.
With much gratitude, Barb Heenan

Barb,
I had Chemo after the surgery. I had Gemzar and Cisplatin. The one major problem was getting the right anti nausea drugs. I did not have the right combination from the get go. I would tell them that I threw-up for about four days after the Cisplatin. Nothing new was really done. However on my last treatment (Gemzar only), I had a nurse that sat and read my file while we were waiting for the drugs to arrive. She spotted the problem. In the very first record, the doctor wrote that I needed three anti nausea drugs. They only gave me prescription for two of them. The one they left off (Amend) was a key in the trifecta. She apologized on behalf of the doctor and the other nurses.
My point is that if I had to do it over again (and I do not even want to think about that possibility), I would bring a day planner with hours of the day on it. I would sit with the doctor and nurses and write what needed to be done and when for every single day of the 12 week treatment.
I did record all my treatments and time I took each anti-nausea pill and the results of the side effects and the time of day it occurred. When I went to the Oncologist on the one month post chemo blood work, he didn't even have the correct dates in the computer of my last treatments (I had to bypass a week because of low blood work).

If you can, be the “Court Reporter” for your dad’s chemo plan; that would be a way to minimize confusion and allow you to take control of your treatment. If your dad’s Chemo Facility is anything like it is were I went, the doctors and nurses have an onslaught of patients. Even though I am sure they care for each and every patient, they may miss something that is real important to the individual patient. I saw my oncologist five times during the treatment. Every single time he asked me if I had any problems with my bladder or problems urinating. I had to tell him every time that I had my bladder removed and now had the Ileal Conduit with the outside bag.
Take Care
Rick

Hi Leigh-

Thank you so much for your post. It is so nice to hear from a person that is so similar to my dad's circumstances. You are the first person I have read about that had positive nodes after their r/c - it seems most people have none or just a few nodes test positive. And it is encouraging to hear about your chemo...I look forward to reading all of your posts and hearing your results. Thank you for your kind words and thoughts.

THANK YOU!! Barb

Hello Barb Heenan,

I wanted to wish your dad a speedy recovery from his RC.

Your dad must be super proud of you...what a great supportive daughter you have been.

I too have had 17 positive nodes out of 29 taken out during the RC and I am presently having adjuvant chemo of Gemz and Cispl.

They say that positive nodes statistically give a poorer outlook but many people have gone on to outlive those statistics.

For me personally I needed to have an aggressive approach and chose for chemo even when it was not recommended by my initial Oncologist. This was to give myself the best chance and hopefully destroy any micro metastasis in my body.

As I am sure you have read from the many stories here on this forum, this cancer can run many paths and even BC patients with no positive nodes have had their cancer sadly metastasise.

None of us know what is around the corner but you are doing the best thing to inform yourself with knowledge of this disease and this will give your dad the best possible chance.

I have read many positive stories on this forum and draw my strength from the amazing people guiding and supporting us here.

Take care of yourself also…..

Kind Regards
Leigh

I don't know if there was indication of cancer there, but the tumor was on the bottom of his bladder from 7 o'clock to 11 o'clock - so he felt that there was good possibility that it had went down in to the urethra. Again - back to the pathology reports and hospital records - I will have to read through them and see what they report. I will keep you posted. The doctor did not indicate that it would be that painful, so that is good to keep in mind. My dad does not use the urethra as he has the i/l (outside bag) and the urination comes out of his stoma in his abdomen.
Thank you! Barb Heenan