Bladder Cancer/Small cell bladder cancer

Posted by David O'Sullivan @daithio, May 4, 2017

Anyone here been diagnosed with small cell bladder cancer. I had a cystectomy in later February (at a non-Mayo hospital) and was told that all visible cancer had been removed. Today at a 2nd opinion session at the Mayo I learned that the original diagnosis missed the fact that I have small cell bladder cancer. I’m in shock that the original pathology work missed this. I will be starting chemo ASAP. I know the outlook is not good and I’m looking for some positive threads to hold onto. Thanks

Liked by sandieboyer

@samasama

Hi from Germany
My Partner was diagnosed with Small cell bladder cancer in Sep 18.
The Tumor was 6 cm, spreaded in the marc of the bones of pelvis, spine.
He started with Cisplatin/ Etoposid.
After 3 cycles of chemotherapy the PET CT showed NO metabolism 🙂
No tumor, no metastasis!,
Yesterday the 6 th cycle of chemotherapy started.
He will have another one end of January.
He didn‘t had a cystectomy because of the metastasis in the marc of the bones.
End of January we have an appointment in a clinic for ion beam therapy.
What else can we do to prevent a rezidive?
@sandielegal : How are you?

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38 Months Clear…. and Happily Healing! I Listen to body more (maybe too much) eating better, laughing more. Praying for you!

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@tattrigoo

My 73-year-old father was diagnosed with muscle invasive small cell cancer of the bladder in October 2018. He went through a few rounds of immunotherapy treatments before undergoing a radical cystectomy a few weeks ago and so far is adjusting well to the stoma. Followed up with the oncologist and was told nine lymph nodes were removed and one showed evidence of small cell carcinoma. He is now scheduled to go through five treatments of Cisplatin/Etoposid. Has anyone else been diagnosed with this type of bladder cancer and or does anyone have any experience with this type of chemotherapy agents (what to expect, etc.)

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Good Morning@tattrigo,
my partner had his 6 th cycle of Cisplatin/ Etoposid on Wednesday/ Thursday/Friday.
At the beginning of each cycle he starts with a medicine against nausea.
The name is Akynzeo, its very good.
The first day, the Cisplatin- day is pretty long, up to 6 hours, because of the additional NACL ( to take care of the kidneys)
He should drink a lot, thats very important
.He has side effects like a moderate Nausea, sometimes headache, muscle pain, but its tolerable.
I‘m also in the german bladder forum, there are also some small cell bladder Patients.
Two had to stop the chemotherapy, one woman said, it was like hell, but its 6 years ago
I think its very invidual.
Is his cancer local or did it spread?
Good look for your father 🙏🏼🤞🏼

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Dear Sandielegal, thank you for answering and so glad to hear, that you are so well💕
Did you have a radical cystectomy?
And had your cancer spread when they diagnosed it?
I know that this is a big problem!:-((
I wish you the best 🙏🏼

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@samasama

Hi from Germany
My Partner was diagnosed with Small cell bladder cancer in Sep 18.
The Tumor was 6 cm, spreaded in the marc of the bones of pelvis, spine.
He started with Cisplatin/ Etoposid.
After 3 cycles of chemotherapy the PET CT showed NO metabolism 🙂
No tumor, no metastasis!,
Yesterday the 6 th cycle of chemotherapy started.
He will have another one end of January.
He didn‘t had a cystectomy because of the metastasis in the marc of the bones.
End of January we have an appointment in a clinic for ion beam therapy.
What else can we do to prevent a rezidive?
@sandielegal : How are you?

Jump to this post

I am feeling amazing 38 months clear! See The Urologist and Oncologist now every 6 months

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@samasama

Dear Sandielegal, thank you for answering and so glad to hear, that you are so well💕
Did you have a radical cystectomy?
And had your cancer spread when they diagnosed it?
I know that this is a big problem!:-((
I wish you the best 🙏🏼

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Thank You ❤️ My small cell carcinoma was found very early (due to blood in my urine) Told by my urologist that it was T3 and that a radical cystectomy would be scheduled next …. Met with my Oncologist Radiologist (he had just transferred from Mayo to Roger Maris)
Both my Oncologists agreed on treatment plan much like for small cell Lung Cancer. Chemo and radiation and by the Grace of God my bladder has been saved and is checked regularly and working wonderfully

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@colleenyoung

Hi @tattrigoo, welcome to Connect. You'll notice that I moved your message to this existing discussion about Small Cell Carcinoma of the Bladder (SCCB). I did this so you can easily meet others talking about small cell bladder cancer, like @samasama @jimmy2248 @sandielegal and @whitneyvet. Click VIEW & REPLY to scroll through past comments.

@samasama's partner recently had chemo – Cisplatin/Etoposid and @jimmy2248 underwent the same regimen a little while ago, so hopefully they can answer questions and share their experiences with you. @sandielegal what treatments did you have?

@tattrigoo, how did you father tolerate the immunotherapy? Was it Keytruda?

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It was not Keytruda. I can’t recall the name of the drugs but he was part of a clinical trial at M.D. Anderson. Tolerated the immunotherapy pretty well. He’s not had a pet scan so I don’t know if the cancer has spread. He scheduled for that after the first chemo treatment

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@samasama

Good Morning@tattrigo,
my partner had his 6 th cycle of Cisplatin/ Etoposid on Wednesday/ Thursday/Friday.
At the beginning of each cycle he starts with a medicine against nausea.
The name is Akynzeo, its very good.
The first day, the Cisplatin- day is pretty long, up to 6 hours, because of the additional NACL ( to take care of the kidneys)
He should drink a lot, thats very important
.He has side effects like a moderate Nausea, sometimes headache, muscle pain, but its tolerable.
I‘m also in the german bladder forum, there are also some small cell bladder Patients.
Two had to stop the chemotherapy, one woman said, it was like hell, but its 6 years ago
I think its very invidual.
Is his cancer local or did it spread?
Good look for your father 🙏🏼🤞🏼

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Thank you. We do not know if it has spread he has not had a pet scan yet, is scheduled for that after the first chemo treatment. Thank you for sharing your partners experience. Was the chemo give an inpatient? I was told my dad will be in the hospital for five days getting the chemo

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Hi, I think it’s better for an older person to stay in the clinic for Cisplatin and to have a port.
My partner has no problems with his venes, but many people in the German bladder Forum told about problems without a port.
It’s VERY important to drink a lot during the Cisplatin chemo, otherwise he will have kidney problems.
Then they have to change or stop the chemotherapy.
In the hospital they are able to infund water directly in the blood ( sorry for my English 😬)
Could you maybe find out the name of the immun therapy?
I wish you the best for the therapy 🙏🏼🙏🏼🙏🏼

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@samasama

Hi, I think it’s better for an older person to stay in the clinic for Cisplatin and to have a port.
My partner has no problems with his venes, but many people in the German bladder Forum told about problems without a port.
It’s VERY important to drink a lot during the Cisplatin chemo, otherwise he will have kidney problems.
Then they have to change or stop the chemotherapy.
In the hospital they are able to infund water directly in the blood ( sorry for my English 😬)
Could you maybe find out the name of the immun therapy?
I wish you the best for the therapy 🙏🏼🙏🏼🙏🏼

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Wie geht's @samasama? How are you and your partner doing?

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Dear Colleen, thank you for answering.
Two weeks ago he had his last application of Cistern and Etoposid.
Everyone recommended to do a Pet CT scan every 8-12 weeks.
We are ok…a bit scary, but full of hope💕
In case of a rezidiv, the plan is to apply Topotecan or Pembrolizumab
But 🍀🍀🍀🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼
we hope

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@samasama

Hi, I think it’s better for an older person to stay in the clinic for Cisplatin and to have a port.
My partner has no problems with his venes, but many people in the German bladder Forum told about problems without a port.
It’s VERY important to drink a lot during the Cisplatin chemo, otherwise he will have kidney problems.
Then they have to change or stop the chemotherapy.
In the hospital they are able to infund water directly in the blood ( sorry for my English 😬)
Could you maybe find out the name of the immun therapy?
I wish you the best for the therapy 🙏🏼🙏🏼🙏🏼

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The immunotherapy he did was part of a clinical trial, Durvalumab and Tremelimumab. He is starting His first chemomtreatment tonight.

Liked by sandieboyer

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@tattrigoo

The immunotherapy he did was part of a clinical trial, Durvalumab and Tremelimumab. He is starting His first chemomtreatment tonight.

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Ah, ok.
I only know Pembrolizumab ( Keytruda in the U.S.)
Wish you the best🍀

Liked by sandieboyer

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@samasama

Hi Jimmy, thank you for answering.
I also heard about Keytruda as a second line therapy.
I wish you the best for your scan🙏🏼
Let us know about the result.

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@samasama scan on 03/20/2019 shows spot (9mm) on left adrenal glan. Biopsy next week. My mets. In lungs and liver show NO new growth. Possible radiation for the spot on adrenal. I have Faith. I am Very active with Yin yoga i do at home off internet u tube. I am active and eating well . Where are you with experience?

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@jimmy2248

@samasama scan on 03/20/2019 shows spot (9mm) on left adrenal glan. Biopsy next week. My mets. In lungs and liver show NO new growth. Possible radiation for the spot on adrenal. I have Faith. I am Very active with Yin yoga i do at home off internet u tube. I am active and eating well . Where are you with experience?

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Hi
Jimmy, good to hear that there is no growth in lung and liver!
Hope radiation will help🍀
My partners last scan was on 3/10/2019
Everything was ok 👌🏼 😍
Are you doing Tumor marcers like Chromogranin A, NSE and Cyfra 21?

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@samasama

Hi
Jimmy, good to hear that there is no growth in lung and liver!
Hope radiation will help🍀
My partners last scan was on 3/10/2019
Everything was ok 👌🏼 😍
Are you doing Tumor marcers like Chromogranin A, NSE and Cyfra 21?

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@samasama
Getting ready for "cyber knife radiation. For left adranal. Getting two doses. How's your partner doing. ?

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