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Can you tell me about Bladder replacement options

9 years 9 months ago - 9 years 9 months ago #35912 by BillM
Hi again alanjay,

During chemo I ate a lot of small meals throughout the day. The drugs used peak a few days after treatment and I would get a little moody for the day. If I was going out I would take an anti nausea pill so I wouldn't get car sick. And watch out for constipation, be sure to talk to the doctor about that. I did sleep a lot, 12 to 14 hrs some days. Somedays just getting up and getting a snack required a nap! Staying busy made it go by pretty fast though and I feel having had the chemo first made surgery recovery faster.

The surgery was about 7 hours and I was in the hospital for 6 days. It was done the first week of Noveber 2010. Almost three months ago. The day after surgery is the worst day out of the whole experience and my doctor made it a point that I was out of bed to go for a walk on top of everything. After the third day things start going fast as there is a lot to learn from the doctors and nurses. Passing gas will be the biggest goal for the first few days, the bowels waking up. Eating and getting the bowels up to speed will take a little time, the diet I used for chemo worked realy well during that time. I got the neobladder by a slim margin. The neo allows you to go to the bathroom as before once it's trained. The first 6 weeks I had to use adult diapers and pads as I retrained my muscles with kegel exercises. I'm now close to using a pad just at night.

The only problem so far has been a touch of cellulitis and a pulled muscle. Muscle relaxants and a newley retrained urethra and a new bladder just don't mix well.

If you have more questions, don't hesitate to ask.

Bill

5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
7.26.12 Final scans showed no tumor or no...
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9 years 9 months ago #35910 by Gracie
AJ,

I had my surgery more then 2 and a half years ago and have an Indiana Pouch. After the surgery I had chemotherapy. From what I've heard - it may be easier to have the chemo before the surgery. I was still dealing with the after effects of surgery and was quite weakened - I was also still 'training' my new bladder so I had to cath every 2-3 hours around the clock.

For chemo I had the Gemcitabine and Carboplatin. I had the carbo instead of Cisplatin because my kidneys had been compromised in the past. They wanted to play it safe. I would think that you will be getting the Carboplatin as well. The worse part of chemo for me was the fatigue. Its just not describeable. Now I don't know if thats because my infusions were adjuvant and I was already weak.

I also did not respond well to the steroids that they give you for the nausea. I felt like I was on uppers and downers at the same time. Once they cut those down considerably that was more manageable. I also found certain foods not desireable so my eating was sporadic (much to my husband's dismay). I had already lost 25 pounds from the surgery - and lost very little additional with the chemo.

Each one of us is different. Try not to anticipate the worse. Take it one day at a time - remember someone is always willing to extend a hand and a heart on this forum.

Let us know how you are doing.

Best,
Gracie
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9 years 9 months ago #35909 by Cynthia
Alan,

Welcome to our site I am sorry you have to be here but glad you found us.

Here is a link to our page about diversions and treatments for invasive bladder cancer.

http://bladdercancersupport.org/index.php?option=com_content&view=article&id=486

As for chemo I have been to the infusion unit 20 times and I did not lose weight or have my head in a bucket. They used three agents Gemcitabine, Paclitaxel and Cisplatin. With some trial and error I found that for me that taking anti nausea medications before I needed them and not after the nausea began was the trick. And always keep some crackers or the such with you as letting your stomach get empty will bring on nausea as well.

Keep posting we are here and maybe able to help with ideas if you have any side effects. At the very least we have been there and have a willing ear.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
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9 years 9 months ago #35905 by alanjay
Bill,
Thank you for the information. This is similar to what my doctor told me, but it didmake as much sense as your explanation. He got a little to technical and less on the eplanation.
As for the Chemo agent, it is going to be a Platin, but not Cisplatin as I have Kidney problems. From what I had been reading, it tooked like everyone taking Chemo would lose lots of weight and keep their head in a bucket. Glad to hear of this isn't always true. How did your surgery go, what option did you choose and how are you doing with it?
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9 years 9 months ago - 9 years 9 months ago #35904 by BillM
Hello alanjay,

If your starting chemo first you will have plenty of time to talk to your doctor about surgery and the best options for you.

Is the chemo going to be Gemcitabine and Cisplatin? I was told this combination is the most tolerable for most people. It is what I had for neoadjunctive chemo and it was very tolerable. I gained almost 20 pounds and never really got sick.

As far as bladder replacements, you have the neobladder which is the “most normal” as your ureters and urethra are left in place and used, and the Indiana pouch which uses a stoma and catheter to drain when needed. The neobladder allows you to go to the bathroom normally. Both use a section of your intestines for creating the new bladder. The other option used is an ileal conduit. It uses a small section of you intestines and drains into a bag outside of your abdomen.

All three diversions work very well once you get used to the change. The neo is the most challening out of the three because the muscles in the pelvic region need to be retrained to control urine flow and to avoid accidents.

And as always, talk to your doctor and use their feedback on what will work the best for you.

Bill

This link has a lot of information

5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
7.26.12 Final scans showed no tumor or no...
The topic has been locked.
9 years 9 months ago #35901 by alanjay
What can you tell me about what I can expect after my bladdere is removed. What you ad to allow for urination and how you are doing with it. I will have my Bladder removed in April, after 14 weeks of once a week Chemotherapy. I start the Chemo next week. Can you also relate to me on your experiences with chemo. I will be having one of the Platins but not sure which one. I am currently Stage 3 but awaiting results of Pet scan.
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