1. < Prostate Cancer

Prostate Cancer- getting help-questions answered

Posted by cony2 @cony2, Aug 16, 2022

Approximately 20 years ago a Urologist after listening to my symptoms and without doing procto or anything said I had prostate cancer and would schedule me for surgery next week-- my response was lets talk and chose to go on the blue pill and wait.
Since then after biannual tests and blood count going from 4 to 7 now 14, suggests getting a bone marrow test to see if any cancer cells show up.
My question is: should I consult a cancer specialist now???

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

cilong | @cilong | Sep 3, 2022
In reply to @colleenyoung "@cilong, having a seizure after 40 years of being seizure-free must've been frightening for both you..." + (show)
@colleenyoung

@cilong, having a seizure after 40 years of being seizure-free must've been frightening for both you and your husband. You are obviously no stranger to navigating chronic conditions and I encourage you to continue to do your own research. Patients and family caregivers are equal partners in their care (and they've got skin in the game so to speak.)

Did your husband's care team stop abirateron until they figure out what is going on? What other treatment options, if any, did they offer? Has he had the MRI and EEG to further investigate the cause of the seizure?

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Colleen, thank you for reaching out to me. My husband fired his oncologist and is still looking for a new one. We met remotely with a new one last week. I wasn’t impressed when she asked me how I knew he had a seizure. I’ve never seen a gran mal seizure before, and I thought he was dieing.
I want to find something definitive to give to the doctors that states “yes, abiraterone can cause seizures.” They seem to discount it when I say I found it on the Mayo Clinic website.
My husband stopped the abiraterone. His previous oncologist didn’t like that we did our research and asked lots of questions. We try hard to research the legitimate sources. The new oncologist said that now that he is on a seizure prevention drug, he should have no problem taking it. Should is not an acceptable response at this point. She also said that if he didn’t go back on Abiraterone his only choice was chemotherapy.
He is working with a neurologist and having new scans done for both the brain and the cancer (ordered by the new oncologist). We are waiting for the new scans to be completed before making any new decisions on doctors. He had the original oncologist for several years, so it’s not like we jump around from one doctor to another.
At this point I just want a doctor to acknowledge a seizure could have been caused by the treatment.

REPLY
budisnothome | @budisnothome | Sep 4, 2022
In reply to @muradangie "@dd2312 & @colleenyoung, I do not see any Mayo Clinic virtual prostate support groups being offered..." + (show)
@muradangie

@dd2312 & @colleenyoung, I do not see any Mayo Clinic virtual prostate support groups being offered at any of the other Mayo Clinic sites.

If you are in Rochester, our in-person support group is actually resuming in Rochester on the second Wednesday of each month. It resumes on Wednesday, September 14th @ 12pm CDT in the Baldwin First Floor Conference Room, Room 1-507, Baldwin Building. Also, there is a group called Us TOO! (www.ustoo.org) that provides prostate cancer education and support. If you click on the "Get Support" at the top of the page you will find online support groups and mentoring. I hope this helps.

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Colleen. I had a couple of requests for zoom on this. I emailed Dick to see if could do zoom. Wonderful group and happy to be back together.

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bettwils16 | @bettwils16 | Sep 5, 2022
In reply to @melcanada "My radiation oncologist dr Julia Silerenko saved my life" + (show)
@melcanada

My radiation oncologist dr Julia Silerenko saved my life

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Hi, where is she located?

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budisnothome | @budisnothome | Sep 8, 2022
In reply to @colleenyoung "DD, I don't see a Zoom support group specifically for prostate cancer listed in the Events...." + (show)
@colleenyoung

DD, I don't see a Zoom support group specifically for prostate cancer listed in the Events. Many inperson support groups at Mayo moved to Zoom over the past couple of years. @muradangie might know more.

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Welcome back to the Prostate Cancer Support Group on September 14!

Our meeting will have two parts. First, we are fortunate to have Dr. Ayse Tuba Kendi back with us to provide an update on Nuclear Medicine imaging for prostate cancer at 12:00 - 12:50 pm. Second, from ~1:00 pm to 1:30 pm Bob Gielow, a member of our group who has considerable experience in counseling, will lead us in a sharing session.

Please join us in our regular meeting room, Baldwin 1-507. If you are unable to attend in person, you can connect via Zoom to participate. Just click on the link below to join the meeting.

Speaker: Ayse Tuba Kendi, M.D.

Professor in Radiology, Director of Nuclear Medicine Therapies

Mayo Clinic Rochester, Minnesota

Topic: Update on PET imaging in Prostate Cancer

Objectives: Principle of PET imaging, PSMA PET/CT, Concept of Theranostics/Radioligand therapy, Other Prostate PET/CT agents

Meeting location: Baldwin 1-507 (Remember to wear a mask)

Part 2: Sharing Session led by Bob Gielow

Zoom Connection:

Click on the following link to join the meeting via Zoom:

Join Zoom Meeting
https://mc-meet.zoom.us/j/95269813655?pwd=eWM3SjlRaXc4VXNaSkRXTEFQZTNvQT09
Meeting ID: 952 6981 3655

Passcode: 371662

REPLY
2 replies
comrade | @comrade | Sep 8, 2022
In reply to @budisnothome "Welcome back to the Prostate Cancer Support Group on September 14! Our meeting will have two..." + (show)
@budisnothome

Welcome back to the Prostate Cancer Support Group on September 14!

Our meeting will have two parts. First, we are fortunate to have Dr. Ayse Tuba Kendi back with us to provide an update on Nuclear Medicine imaging for prostate cancer at 12:00 - 12:50 pm. Second, from ~1:00 pm to 1:30 pm Bob Gielow, a member of our group who has considerable experience in counseling, will lead us in a sharing session.

Please join us in our regular meeting room, Baldwin 1-507. If you are unable to attend in person, you can connect via Zoom to participate. Just click on the link below to join the meeting.

Speaker: Ayse Tuba Kendi, M.D.

Professor in Radiology, Director of Nuclear Medicine Therapies

Mayo Clinic Rochester, Minnesota

Topic: Update on PET imaging in Prostate Cancer

Objectives: Principle of PET imaging, PSMA PET/CT, Concept of Theranostics/Radioligand therapy, Other Prostate PET/CT agents

Meeting location: Baldwin 1-507 (Remember to wear a mask)

Part 2: Sharing Session led by Bob Gielow

Zoom Connection:

Click on the following link to join the meeting via Zoom:

Join Zoom Meeting
https://mc-meet.zoom.us/j/95269813655?pwd=eWM3SjlRaXc4VXNaSkRXTEFQZTNvQT09
Meeting ID: 952 6981 3655

Passcode: 371662

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Will join via zoom

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 8, 2022
In reply to @budisnothome "Welcome back to the Prostate Cancer Support Group on September 14! Our meeting will have two..." + (show)
@budisnothome

Welcome back to the Prostate Cancer Support Group on September 14!

Our meeting will have two parts. First, we are fortunate to have Dr. Ayse Tuba Kendi back with us to provide an update on Nuclear Medicine imaging for prostate cancer at 12:00 - 12:50 pm. Second, from ~1:00 pm to 1:30 pm Bob Gielow, a member of our group who has considerable experience in counseling, will lead us in a sharing session.

Please join us in our regular meeting room, Baldwin 1-507. If you are unable to attend in person, you can connect via Zoom to participate. Just click on the link below to join the meeting.

Speaker: Ayse Tuba Kendi, M.D.

Professor in Radiology, Director of Nuclear Medicine Therapies

Mayo Clinic Rochester, Minnesota

Topic: Update on PET imaging in Prostate Cancer

Objectives: Principle of PET imaging, PSMA PET/CT, Concept of Theranostics/Radioligand therapy, Other Prostate PET/CT agents

Meeting location: Baldwin 1-507 (Remember to wear a mask)

Part 2: Sharing Session led by Bob Gielow

Zoom Connection:

Click on the following link to join the meeting via Zoom:

Join Zoom Meeting
https://mc-meet.zoom.us/j/95269813655?pwd=eWM3SjlRaXc4VXNaSkRXTEFQZTNvQT09
Meeting ID: 952 6981 3655

Passcode: 371662

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Bud, this is fabulous news! Thank you for advocating to include people via Zoom as well as those who are on campus at Mayo Clinic, Rochester.
I will add this recurring support group to the Events calendar.

REPLY
dd2312 | @dd2312 | Sep 9, 2022

So glad to hear about the meeting on 9/14 as I will still be at Mayo for radiation therapy and will join in person.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 12, 2022

@budisnothome, thank you for coordinating with Dr. Vetter and myself to get word out about the Mayo Rochester / Zoom hybrid Prostate Cancer Support Group. It is now posted in the Events calendar here:
- All Events: https://connect.mayoclinic.org/events/
- Sept 2022 Meeting https://connect.mayoclinic.org/event/prostate-cancer-support-group/

@dd2312 @comrade

REPLY
rxharleydude | @rxharleydude | Sep 15, 2022
In reply to @cilong "My husband’s oncologist prescribed Abirateron (Zytiga) treatment assuring us there was no risk of seizure side..." + (show)
@cilong

My husband’s oncologist prescribed Abirateron (Zytiga) treatment assuring us there was no risk of seizure side effects. Three to four weeks into treatment, husband had a gran mail seizure and was transported to ER. Thankful he was home and not driving, etc. Three of his doctors (oncologist, pcp, and now neurologist) still say this is not a side effect. They don’t like it when we do our own research, My husband has been seizure free for over forty years. He will be having an MRI and EEG just to be sure something else isn’t going on, but it seems the Abiraterone was the culprit. Any thoughts? Thank you.

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I’ve been taking low-dose (250mg/day with a light breakfast )abiraterone for over two years and never experienced any seizure side effects. However, I did experience a moderately increased blood pressure and an increase in blood lipids due to the abiraterone.

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