Thanks Wendy I have been fighting, and trying my best but I would be a liar if I were to say I never worry. That is so nice to hear about that woman you know makes my battle and fighting feel a whole lot better. And I am sure your friend is very happy also. I am so very pleased I chose Penn as I told you I really trust Dr. Wein and his team and all the folks there are so super nice to me. Thank you so much for this info it was much appreciated and I wish you and your family the best. Thanks, Joe
I wanted to tell you about a woman I've known for 8 years now, she was/is also a patient of Malkowich and Weiss, your team at UPenn, she had a T4 tumor and lymph nodes involved. She got MVAC and an ileal conduit, and is still cancer free. Many people who have pre-op chemo end up having cancer free cystectomy-specimens.
I'm glad you only have 5 more weeks, you're almost there, or halfway there and are holding up very well under the circumstances. We know how hard it is.
Well Dixie I am very glad to hear all has been going well with you its been awhile.. Nothing is guaranteed with this disease as I had never been allergic to any drugs and then to be allergic to a chemo drug. I had 2 rounds and day 15 I had the reaction ( bummer ). So the only good thing to come of that since I was going to get the Cisplatin and then week 4 off they counted it as a cycle. Then they switched me to the High Intenstity MVAC http://www.chemocare.com/bio/list_by_acronym.asp?acronym=MVAC. The plan is this Week 1
Wednesday- Methtexate Thursday-Vis-Adria-Cis Friday- Neulasta Shot http://www.drugs.com/neulasta.html. Week 2 off. Week 3 repeat Week 1. I will be getting 2 cycles of this chemo plan. This week will be my third treatment and next week off then repeat. I am positive when the chemo treatmnet is over there will definitely be more tests to come to check on the results of the chemo. But that is still a ways off as of yet I have 5 more weeks of chemo left. Because this was the purpose of the pre-op chemo. No matter how much of a fighter I am and trying to focus positive I would be a liar if I said I am not worrying. And you be right the time between the chemo and the surgery would definitely be playing on my mind. But from being dx 1/6 I have come down a long road and getting closer to the final stage of what has to be done and that is the surgery. I know this is an intense surgery and hoping the neobladder is still a go which it should be and keep on fighting, praying, and try to stay focused as positive as I can.
These last two months have seem liked eternity with all the tests and then worrying about the results which I was lucky so far. Then the chemo and the setback for a week with the allergic reaction and then the batlle continues and Dr. Vaughn reloads with a new plan which he said is equally as good as the Gemzar-Cisplatin. So after being dx on 1/6 I have come along way and with each sunrise I look at it like this it is one more day trying to battle off this beast. I am very pleased so far with Dr. Wein and his team at the Univ of Penna. As I feel they have covered all the bases so far and I am very content to be in the hands of their care. I will update as I get more info on what will be taking place here. Thanks, Joe
Uro/Oncologist Head of Team
Specialist in Bladder Reconstrution
I had a invasive tumor also but mine went through the wall of my bladder. I had chemo before surgery too. What they did when I was half way through my rounds of chemo was a MRI of my pelvis and abdomen to see if my tumor was shrinking with that type of chemo. I had to do MRI's because I am allergic to the CAT Scan dye. I think they did the MRI's after 1 1/2 rounds which equals once a week on Fridays for three weeks and then one week off. Then for two more weeks on Fridays with a total of 5 treatments with Gemzar and Cisplatin. My tumor had responded it was 4cm when starting I think the first MRI showed it shrunk not even 1cm which I thought was not that good but it was. After I finished up my chemo which I took for 3 months I did another MRI which showed it was smaller then 2cm(thank God). There was a little mix up with my Dr. at Sloan Kettering who was prescribing the chemo cocktail and my local oncologist who was administering it to me. He was suppose to give me the chemo for 1 more month so by the time I had a appiontment with my Dr. at Sloan a whole month had past. So I had to do chemo for 1 more month. He was hoping since I responded to the chemo so well that the tumor would disappear completely. I was not so lucky. It had disappeared inside my bladder but was still outside going into my ueturus.
They gave me some time to get strong before my operation. Also, they let me pick the date. But they said I should try to do the operation within 1-3 months after chemo. I was really scared to have the operation, I almost decided not to do it. I really didn't want to lose my bladder and there was no guarantees that I was going to get my neobladder until they went in and biopsied my urethra to make sure that there was no cancer on it. I would not know until after I came out of surgery. If they found any I would of had to had a stoma where I would have to cath myself every four hours. I know there were no guarantees that the neobladder was going to work 100% either but I wanted to try it. My logic was I would have a 70-80% of not cathing myself with a neobladder vs. a 100% chance of cathing with a stoma. My oncologist said I had to have the operation and my surgeon said if I wanted to I could just watch the tumor but he would recommend me to have it taken out. My question was could it of been scare tissue left from the tumor which could of been but highly unlikely. Thank God I decided to have the surgery because it was still the cancer. I think the time between chemo and the surgery was one of the worst time through this whole journey emotionally,dealing with I really had to lose my bladder if I really wanted to live and what kind of urinary diversion was I going to come out with.
I did go to therapy which helped me cope with it. My therapist was a breast cancer survivor which was good because she knew all the fears i was feeling. I also did a lot of praying and a lot of other people did also. It was weird but I developed this peace or calmness in my heart a few weeks before surgery and I was ready.
I hoped this helped you out.
Karen yes Gemzar is a funky drug but I will never know about the blood transfusions cause it turned out I had an allergic reaction day 15 of the chemo so they changed my chemo plan to MVAC. And Wendy so far so good with the veins. The nurse there Andrea I'll tell you she is really good she has never missed once putting heplock in. And if all goes well this is my final week recieving the MVAC and exactly where I go from there I am not sure yet, I will be asking some more questions this week to get an idea. And having an invassive tumor I have tried my best to educate myself the best I can, and every Dr. up at Penna. I am always asking questions about this or that cause I really want to understand everything they are telling me. Best Wishes, Joe
You're right that ports can bring infection, but i have known many people who've had chemo and wished they had ports because their veins get wrecked. I also know many women with breast cancer who get long term chemo and have ports, no problems.
Just a thought, and it's not for everyone. And don't worry about not understanding some terminology! You are new at this game, but learning fast Joe.
take good care,