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Post Surgery and Awaiting Chemotherapy

Bill Baker
Posts: 23
Joined: Oct 2011

Hello Everyone:

So I had my surgery on November 28th and d/c on December 6th. Open abdominal surgery-8.5 hours. I had transitional cell carcinoma of the right ureter and right kidney. Due to my Lynch Syndrome (Muir Torre Syndrome)and the subsequent potential risk to the other kidney, the surgeon hoped to save the kidney. After repeated biopsies during surgery with no clear margin could be made the decision was made to remove them both. Unfortunately, the tumor growth in the ureter has made it necessary to receive chemotherapy.

I have two questions:

1. does anyone here have any experience with the Chemo drugs Gemcitabine and Cisplatin? I would be interested in any thoughts/suggestions. I begin on January 6th.

2. also, does anyone have any recommended abdominal exercises? I have a 15 inch midline incision and will need to strengthen when able.

Thanks to all and my thoughts are with all of you!

Bill

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi Bill,
So sorry to hear the bad news. I wish you the best.
If you use the search function at the top right hand corner of this page and then click on "View all Message Posts", I think you should find a lot of discussion about the two chemo drugs.
http://www.cancercompass.com/message-board/cancers/kidney-cancer/1,0,119,8.htm
Regards,
Mike

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Mike, am I imagining it or has your appearance changed? You're looking a bit green lately!

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi Tex,
That's Cosmo. What a great bird. I can't believe how tame he is. I can walk around the house holding him inside my closed hand. I got him a few months after my surgery. He's doing a great job of keeping me happy and calm. I thought of getting a dog, probably a better choice than a bird for an animal companion, but scooping poop every day isn't my idea of relaxing.
Mike

foxhd's picture
foxhd
Posts: 1901
Joined: Oct 2011

I guess now we are in my territory. I am not familiar with your drugs. I am familiar with rehab exercise... NO abdominal exercise is indicated. Heal first. Then maybe after 4-6 weeks you can begin to go through the motions. Use your Doctors advice re: when you can begin to push yourself. You will find in previous threads that this is the consistent theme. This is not like getting a filling. Can't wait a few hours and go back to what you were doing. Many of us are fitness enthusiasts and have had to change our priorities. Just get better first Bill.

Bill Baker
Posts: 23
Joined: Oct 2011

Thanks Foxhd, that was my intention. Need to heal first. My wife helped to ground me this weekend to realistically rethink which cycling events to participate in. I guess I just want to feel better now!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Bill,

I can't help with your questions, looks like Mike and fox have you covered, but I wanted to let you know that you remain in my thoughts and prayers.

Hang in there,

Gary

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

More good vibes coming your way Bill, from the other side of the Atlantic. As Gary says, Mike and fox have put you on track and I see from a CSN General search that the two drugs you mention are often given together. I hope they're just what you need. One thing's as clear as day - you're a man made of the right stuff and you deserve the best of luck.

T.

Sm4pack's picture
Sm4pack
Posts: 40
Joined: Dec 2011

Bill-
Just want to know that I am thinking of you. It must be nice to know that the surgery is over and you can get on to the recovering part of things. My surgery is scheduled for the 9th. I really can't wait for it, even though the recovery will be less than enjoyable. Anyway, I hope 2012 treats you well. I'll be following your progress.

Scott

Bill Baker
Posts: 23
Joined: Oct 2011

Thanks Scott, Mike, Tex and Gary:

My biggest issue has been fatigue. I lost some blood during the surgery, received two units four days later but d/c from hospital still a bit low. I also lost twenty pounds (I developed an ileus post surgery and ended up being NPO for eight days). I am now eating better, taking naps but four weeks on still freaking exhausted. It is becoming frustrating.

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

Needing to nap a lot is pretty normal for 4 weeks post-op. Sorry about the ureter involvement.

I'm a biker too and hate to miss even one day off my bike. In fact, I just got in from a ride a few minutes ago, after being in an MRI all day. Helps to remind me I'm alive. I know Lance rode right after surgery, but his wasn't abdominal surgery! Big difference.

But as fox mentioned, don't push it too soon, or you'll just push yourself into a hernia. They're harder to fix than cancer!

Pain meds also decrease your appetite, so weight usually comes back on several weeks after surgery.

foxhd's picture
foxhd
Posts: 1901
Joined: Oct 2011

Such a common theme for those of us after nephrectomy. Not everyone who goes through this, is on this board. But WE are because this is the kidney SURVIVORS network. We have high expectations. Anything less than 100% seems like failure. What many of us have had a hard time with is down time. Not used to our routines being limited. A change of perspective helps. This is one hell of a workout, and we need to rest. Our drive will move us all along when appropriate. A few weeks here or there won't matter over several months. Patience my friends.

Bill Baker
Posts: 23
Joined: Oct 2011

Thx FX. I needed to hear that this is common for our diagnosis. I feel better sending my out of state visiting brother, his family and my daughter out without me for the day!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Fox, that's so brilliantly well expressed it ought to be made into a poster and displayed for the benefit of all of us who go through this process.

T.

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

and welcome. Others have given you good advice regarding exercise so I won't go there too.

You say that you have transitional cell carcinoma of the rt. ureter and rt. kidney. Did the TCC metastasize to the kidney? Or do you also have RCC? I ask because Gemcitabine and Cisplatin are generally not used for primary RCC but are used for bladder/biliary cancers. You might want to check out some of the other discussion boards and do a search for these chemo agents.

Let us know how you do.

Bill Baker
Posts: 23
Joined: Oct 2011

Ibinmsp- you are indeed correct. I contacted American Cancer Society and they suggested the kidney discussion board. I had TCC of the upper right ureter which had extended through the wall of the ureter and into the renal pelvis. I will look at the other sites as well. Thanks. Bill

Bill Baker
Posts: 23
Joined: Oct 2011

Ibinmsp- you are indeed correct. I contacted American Cancer Society and they suggested the kidney discussion board. I had TCC of the upper right ureter which had extended through the wall of the ureter and into the renal pelvis. I will look at the other sites as well. Thanks. Bill

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