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Small cell bladder cancer

1 month 3 weeks ago #55195 by Whitneyvet
Thanks, Jack R. Very helpful. I'll watch the dosage levels and frequencies carefully. Hate to give up both my bladder and my hearing!

Whtineyvet

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1 month 3 weeks ago #55182 by Jack R
Whitneyvet,

Comment is to hearing loss only, as my Dx does not include small cell.
In the second 3 week cycle of Cisplatin + Gemzar my hearing loss went from my stable for years of 'moderately severe", suddenly, to "severe". My ENT tells me to give it a little time before deciding this is a new normal.

Do be sure to keep the chemo team advised of ALL changes as you notice them. Meds, including Cisplatin, can be adjusted to as needed to get you through the full course of treatment. I would not have made it through without a couple of breaks in chemo and dose adjustments. Fatigue slapped me silly.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
2 Years and 24 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
4/18 begin Chemo , round 2

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1 month 3 weeks ago #55180 by Whitneyvet
Hello to all. It’s time for me to join this great support network. Thank you for the time you spend sharing your thoughts, experiences, and encouragement. I am a 77-year old healthy (until now), physically-active (hence the “whiteneyvet” handle as in Mount Whitney) male, who was diagnosed this week w/ SCBC after a recent TURBT and biopsy. First pathologist (and urologist) missed the neuroendocrine carcinoma due to lack of staining. (Good to get those second opinions, even among pathologists.) Doing baseline PET/CT/MRI next week. Chemo (Etoposide and Cisplatin) also begins next week. Looking to do 4-6 x 21 day cycles before radical cystectomy. I already suffer “profound” hearing loss. Any experience out there w/ hearing loss as a side effect of Cisplatin? Permanent? Total deafness?

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3 months 3 weeks ago #54831 by Lwsb
Thank you jmhess. It is very good to hear how you are doing. Laura

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3 months 3 weeks ago #54830 by JohnDee
Hello, JM Hess, and thanks - your comments about life after bladder removal, with a pouch, are particularly helpful. John

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3 months 3 weeks ago #54827 by jmhess50
I am 67 years old and had not missed one day of work for illness in 44 years. I was shocked to be diagnosed with SCBC on March 2015, and was subsequently treated with Etopiside and Cisplatin. The tumor was embedded in the muscle walls of my bladder. My surgeon at Foxchase Cancer Center in Philadelphia recommended removal of my bladder and an ileal stoma was created. The operation was performed to remove my bladder on August 2015 and I am still cancer-free! Some things I learned through this experience..... I searched the world on the internet to find a study or doctor that would say that small cell bladder cancer has anything but a poor prognosis and I didn't find it. (don't even bother looking...it's not good!) It was emotionally traumatic to have to accept the fact that I was stuck with a urostomy pouch for the rest of my life. All I needed to do was open my eyes and look around to realize that I was the fortunate one because it saved my life! I was a walking dead person for the 1st two years after the diagnosis because I figured I wouldn't make it. In 15 days, it will be 3 years and I plan to live a long time...life is good. I have been blessed with good support from family, friends, and work. I am still working 40 hours a week, I once worked 50-60 hours a week. There is hope for you and you have your whole life ahead of you. If you have a doctor you trust, listen to them, if not? Find another doctor!
I just came back from another mission trip to El Salvador and have continued to travel. Having a pouch is not that big of a deal. Enjoy your life once you get through this mess!

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