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Newly diagnosed and overwhelmed

2 years 10 months ago #54398 by texasbonfire

How are you doing with chemo?

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2 years 10 months ago #54397 by texasbonfire
Hello KathyH514!

I had my radical cystectomy surgery September 11, 2017 - that's 11 weeks ago and I have adjusted quickly with no problems. The surgery was postponed due to Hurricane Harvey. When they performed the surgery, they "injected" long acting pain killer in/around the incision which made recovery possible on just Tylenol for me once discharged from hospital (4 days).I did feel abdominal pain when laughing, coughing or sneezing though. The worst part of recovery was being severely constipated and no appetite first four weeks. If you can't drink Ensure, grab a vitamin and drink a glass of regular milk (or 2%, etc).

The main reasons for my team to discourage the neobladder are: possibility of more complications during and after surgery; women have a higher instance of incontinence than men; the neobladder is made from intestine and will have mucus threads that can block urination; and, a possibility of cancer developing in the urethra (otherwise removed if you get the urostomy bag). Also to consider is that you may not be able to fully empty the neobladder so catheters will be needed. That is not something I wanted to do. Add to all of this, the fact that you have to "potty train" you new plumbing for 9 or more months.

The Indiana pouch requires using a catheter to empty (again not what I want to do), may have more complications than the ileal post-op, leakage, and pouch irrigation due to mucus.

I have a urostomy pouch, but need to try a few types as I had no idea there are so many! I am still getting used to to how much output there is - had no idea I produced so much urine. No one seems to notice the pouch until it gets somewhat full, and even then it just looks like I have something in my pocket. I change the bag twice weekly. I have returned to exercising (moderately) and started training today to hopefully run a 5K in March to celebrate my one year anniversary of starting chemo. That's 16 weeks from now, so wish me luck!

Brief recap - stage IV bladder cancer that was also found in a couple of lymph nodes February 2017. Started chemo March 20, 2017. Had radical cystectomy September 11, 2017. Follow-up with pathology results stated no active cancer found in bladder, but a few cells in a lymph node out of the 24 that were removed. All margins were negative. CT scan at 8 weeks can back good. Monitoring every 3 months with 1st appointment in February 2018.

Sending good vibes, well wishes and big hugs to everyone! Carol

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2 years 10 months ago #54255 by KathyH514
Hello Texasbonfire,
You mentioned that the Indiana pouch was discourage by your treatment team. Could you provide details? Right now trying to decide between indiana pouch or the ileal conduit, a neobladder is not an option. I keep going back and forth between the two. I am a 58 year old female. Thank you for any information you can provide.

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3 years 3 weeks ago #53977 by chaismom
Hi BJ,
I was just cleaning out my spam folder and came across your reply to my original email. I'm pretty sure I never responded.

Thank you for replying with exactly the right advice. Now, almost 2 months later, I have undergone the second resection, which confirmed the diagnosis and added "extensive squamous cell differentiation" to the mix. Based on that info and, after doing a whole lot of research and meeting with several docs, I've decided to go forward with the chemo/ bladder removal choice. Making the decision helped me calm down a bit. I will start chemo next Monday and am a bit anxious about that. I'll do 4 cycles, followed by the surgery 6 weeks later. It's gonna be a long haul, but I'm nothing, if not resilient.

Anyway, thanks again. And my apologies for the delayed response.

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3 years 1 month ago #53904 by texasbonfire
I am a 58 year old, single female and my kids live out of state. I was diagnosed with stage IV February 10, 2017. The cancer had gone to nearby lymph nodes.

I am treated at MD Anderson in Houston (lucky to live here!) Four rounds of Ifosfamide/Gemzar/Doxorubicin (inpatient treatment) followed by two rounds of Gemzar/Cisplatin. Did good on the 1st chemo cocktail, but the second cocktail knocked me pretty good and we stopped after two rounds. My lymph nodes were in complete remission after four rounds and my last cystoscopy made the doctors confident to move on with surgery. I have been working throughout treatment, although sometimes it was from home.

My surgery is August 30. I had a hysterectomy 20 years ago, so that will not be part of this cystectomy. I have done a lot of research and decided to go with the ostomy bag. I am moderately active (swimming, biking, etc) and have found a good number of athletes with bags!

Up to 40% of women have some level on incontinence with the Neobladder. I initially thought I would go that way, but found out about the incontinence rate, using catheters, and being potty trained. There is more, but you get the idea.

The Indiana pouch was discouraged by my treatment team. If you want details on that, let me know.

Oh...during my chemo, I used Zofran for nausea during treatment and it worked. I sometimes would have an unhappy stomach, but never vomited or was miserable. The first shot of Neulasta made me feel like I had been hit by a truck. During the second round of chemo, I was given Claritin, which almost eliminated the pain I had from Neulasta.

Everyone is different, so your experience will be different from mine. Surround yourself with positive and happy things. It can make a difference!

Wishing you the best!!

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3 years 1 month ago #53847 by BJ

Take a deep breath and on your computer go to these sites
Uptodate.com/contents/bladder-cancer-treatment- invasive-cancer
mayoclinic.org bladder cancer
also just type in you questions and things will come up

Good Luck and relax.

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