1. < Bladder Cancer

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

Interested in more discussions like this? Go to the Bladder Cancer Support Group.

tattrigoo | @tattrigoo | Jan 21, 2019
In reply to @colleenyoung "Hi @tattrigoo, welcome to Connect. You'll notice that I moved your message to this existing discussion..." + (show)
@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?

Jump to this post

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

REPLY
tattrigoo | @tattrigoo | Jan 21, 2019
In reply to @samasama "Good Morning@tattrigo, my partner had his 6 th cycle of Cisplatin/ Etoposid on Wednesday/ Thursday/Friday. At..." + (show)
@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 🙏🏼🤞🏼

Jump to this post

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

REPLY
samasama | @samasama | Jan 22, 2019

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 🙏🏼🙏🏼🙏🏼

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 11, 2019
In reply to @samasama "Hi, I think it’s better for an older person to stay in the clinic for Cisplatin..." + (show)
@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 🙏🏼🙏🏼🙏🏼

Jump to this post

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

REPLY
samasama | @samasama | Feb 12, 2019

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

REPLY
tattrigoo | @tattrigoo | Feb 14, 2019
In reply to @samasama "Hi, I think it’s better for an older person to stay in the clinic for Cisplatin..." + (show)
@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 🙏🏼🙏🏼🙏🏼

Jump to this post

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

REPLY
1 reply
samasama | @samasama | Feb 15, 2019
In reply to @tattrigoo "The immunotherapy he did was part of a clinical trial, Durvalumab and Tremelimumab. He is starting..." + (show)
@tattrigoo

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

Jump to this post

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

REPLY
jimmy2248 | @jimmy2248 | Mar 22, 2019
In reply to @samasama "Hi Jimmy, thank you for answering. I also heard about Keytruda as a second line therapy...." + (show)
@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.

Jump to this post

@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?

REPLY
1 reply
samasama | @samasama | Mar 22, 2019
In reply to @jimmy2248 "@samasama scan on 03/20/2019 shows spot (9mm) on left adrenal glan. Biopsy next week. My mets...." + (show)
@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?

Jump to this post

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?

REPLY
1 reply
jimmy2248 | @jimmy2248 | Apr 7, 2019
In reply to @samasama "Hi Jimmy, good to hear that there is no growth in lung and liver! Hope radiation..." + (show)
@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?

Jump to this post

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

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.