It is so nice to hear from all of you that can relate to my story. Thank you so much!
Well, we are currently sitting at the Nebraska Cancer Specialists and dad is receiving Cisplatin as I type. This is his first chemo session. We met with the hematologist (Dr. Luke Nordquist) last Thursday, Feb 28. It was exactly 1 month since dad's cystoprostectomy. Luke was very encouraging about dad's outlook. He took the time to sit with us, draw pictures to explain, answer my questions and he took a genuine concern for us and my dad's well being. Oh how nice it is to find a good doctor. I feel really good about the care that dad will receive here. Luke suggested that dad have a mediport put in, however they were not able to fit him in before his first chemo session - so we are scheduled to have that put in on Thursday, March 6. Do most people have ports put in to alleviate being stuck for each chemo session?
Well - even though we couldn't get in to have the port put in ASAP - dad wanted to start chemo. We are doing the same regime as many others that have responded (thanks Leigh and Rick)- we are Gemzar/Cisplatin - Day 1 Gem/Cis - Day 8 Gem only - Day 15 off. We will do 4 rounds of this. For the anti-nasaeu, they have put dad on Emind for 3 days (day 1, day 2, day 3). Then starting tomorrow we will also start decodren in AM and PM. If needed, he has also prescribed Como - something that dad can take every 6 hrs. Are these the same anti-nauseau meds that others have taken?
The doctors and nurses here at Nebraska Cancer Specialists have been wonderful so far. I will keep you all posted as to how dad is doing. Plus we took a new picture this AM before chemo began - so I will update with a new picture soon. Dad is looking a little better now.
Thank you again to everyone. This is a wonderful website and it has been so great for me personally.
With much gratitude and love for my dad,
"Live a good life...and in the end it is not the years in a life, but the life in the years."
Hi, i just wanted to say hi. I read your post, the picture of you and your dad is very touching-your dad reminds me a little of mine. My dad was diagnosed in October. He started the same way, blood in the urine when he went to the bathroom. He had his tumor removed and was diagnosed with a T1 G2-3 tumor and has been going through BCG treatment. I know you and your dad have been through alot in the last two months, I just wanted to lend my support. I am glad you found this site. There is a great group of people on here and whether I was looking for information or just needed to talk about my fears and concerns I knew I could come here for the support. Please take care.
This is very heavy duty surgery and it pretty much knocks the wind out of your sails...Recovery is very slow and instructions are pretty much to take it easy for at least six weeks after surgery..no lifting over 25lbs and no driving. With so many lymph nodes affected its a good bet that your father will have to undergo chemotherapy. You need a top notch oncologist at this point.
I would not be to concerned about the Bl2 right now as he has some storage in his liver for some time...but you can certainly have it checked.
Your father is going to be weak for some time...it just comes with the surgery. Arrange for a home health nurse to visit ..all of this can be set up with the social worker at the hospital whether he stays there or comes back to Omaha with you. Please take advantage of all the help that the staff can offer you and his insurance will bear.
I wish you a very hopeful outcome........Pat