While I have not had to have a cystectomy, MD Anderson is THE place for us in Texas and know many with bladder cancer that have used them. I live in New Braunfels and they are my backup should I need it. There are many hotels that are close and the also is the JC Rotary House run by Marriot that is on campus: http://www.mdanderson.org/patient-and-cancer-information/guide-to-md-anderson/services-and-amenities/rotary-house-international/index.html
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
I was in hospital 5 days and made a return admission when I had a fluid build up that had to be drained from my abdominal cavity for a few more days. When the lymph nodes were removed (and I had extra taken as part of a study) my body fluid production went a tad crazy. This is not normal, but then I have never been called normal...... I was on light real food on day 3 but had little interest until late day on day 4. It has taken me a few weeks to get the appetite back, but I needed to lose a bit of weight anyway. It is surprising how quickly the bowel heals and is ready to go back to doing its job. Surprised the heck out of me.
It is great that after chemo you could do yard work. That means you have the fight in you for the rest of it. I see Dr. Pohar on the 28th and hopefully can get release back to work on the 5th of May, likely part time for a few weeks and then back at it full time.
One thing I learned through this process from chemo to recovery, stay hydrated bigtime. They told me to drink 8-12 oz per hour while awake and for a few days I didn't and I sure felt it. Hydration makes the recovery a lot easier.
Take care Greg and God Bless.
How long was your hospital stay ? Cutting some intestines loose usually calls for a NG tube to keep GI tract empty until bowels sounds start up again etc.
I had gemzar on april 7, then cisplatin on the next day. I was almost comatose from Thursday night till sat. nite, then had the dry heaves for 12 hrs. Finally could eat and drink a little by sunday morning.
Hard on the kidneys, let myself get dehydrated, so skipped the next week of gemzar. I did have my second dose of gemzar yesterday (third week of chemo). Feel good today, even mowed a little or the backyard this morning.
I'll keep in touch, thanx again,
5 years 1 month ago - 5 years 1 month ago#48691by Don
I found the chemo the hardest part of this process. I could only do 2 rounds of the four that were planned due to developing an allergy to Gemzar. I had by Neo done at The James Cancer Center at Ohio State University. I hear however from friends in Texas that MD Anderson is a great facility as well,and they have lots of experience with the NEO Bladder procedure. It is not a real common procedure and there are not a lot of Doctors capable of doing the procedure. We have a niece who is a urology nurse in Gainsville FLA and she had never heard of the procedure and that is her area of "excellence". Here is my personal email. If you need an ear I am here brother. It sounds like a scary procedure, but if you do as they instruct,the healing happens on a timeline that they have experience with.
Will it be like factory equipment, no, but things are just done a tad differently and it is manageable. It beats an external bag or the worst..... I have four kids and four grand kids that I want to be around a long time to enjoy. Neo Bladder my doctor told me is the only cure.
Don, I am sorry that we must delete your personal email address. For your protection and due to legal privacy issues we are required to do this.
thanx for the info Don..... if possible, neo sounds like the way to go. I live in Austin, my urologist doesn't do the neo, but he said he would refer me to MD Anderson, in Houston where they do it everyday.... First chemo was hard on my kidneys, so I had to skip a week, second round today. I'll be having chemo for 4 months total, then the surgery...... thanx again...... Greg
5 years 1 month ago - 5 years 1 month ago#48689by Don
I had a NEO Bladder "installed" a month ago. I am not sorry that I did. Has it been easy, no I'll say challenging for the first week. Retraining something that for 60 years worked just fine has been challenging but every day it gets better. The doctor told me in 6-8 weeks if I do my exercises, the new bladder will work just fine. This procedure gives me freedom to do as I wish with no fear of the cancer returning.
If had to make the choice over again I would go with the NEO Bladder. You get longer life and quality of life together. My wife and I look forward to many years of doing what we want, bike riding, hiking, swimming, boating and being with family and friends. I good support group is important because there will be monements that are frustrating (but later are actually funny). Keep the faith Greg and you will get through it and have a new lease on life, cancer free!