Roller Coaster: My husband is 7... - Advanced Prostate...

Advanced Prostate Cancer

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Roller Coaster

formula27 profile image
28 Replies

My husband is 75, has been going to see his urologist every 6 months for 15 years

he had put him on Flomax to help his symptoms. In May 2018 his PSA was OK 4.0

6 months later PSA level increased to 10.7 . Beginning of Dec he underwent surgery

to remove bladder stones and the same time TURP was done. After TURP he had difficulty urinating and until today he still has the same problem - self catheterizing daily . End of Dec just before Christmas he was diagnosed with a very aggressive

prostate cancer and was started on ZOLADEX . PCA started to rise in April 2019 was

44.02 PCA in May 31.9 The urologist added Bicalutamide to ZOLADEX but later was taken off because it didn't help. He was diagnosed with stage 4 , spread to the lymph

nodes and the spine .

PSA July 4 /2019 45.0 July 19 66.08 July 25 47.85

In August he continued on ZOLADEX and was put on ZYTIGA with Prednisone

PCA Sept 7/19 49.6 Oct 2/19 47.3 Oct 25/19 62.08 his PSA numbers keeps jumping up and down but never drops very low .

Oncologist wants to squeeze the last drops out of ZYTIGA and switched Prednisone

to Dexamethasone . He is been on ZYTIGA only for 2 months why is not helping ?

It is helping everybody else ! So upsetting !.

He is so uncomfortable , not feeling well, he is just so different I hate to see him like this .

Is their any hope for us ? I don't see the light .

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formula27
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28 Replies
Tall_Allen profile image
Tall_Allen

Chemo may help him feel better afterwards. Maybe take it with Provenge to get the synergy of the two together. Chemo also sometimes helps the second-line hormonals work better - you can discuss re-challenging him with Xtandi afterwards. Try to get a large metastasis biopsied.

formula27 profile image
formula27 in reply to Tall_Allen

Thank you very much for your suggestion

Fairwind profile image
Fairwind

Sometime in Dec 2018 he must have had a prostate biopsy. What were the results of that biopsy ? His Gleason score ? Did he ever have a prostatectomy ? (His prostate gland removed?) Has he investigated any form of radiation treatment ?

formula27 profile image
formula27 in reply to Fairwind

Thank you for asking . Unfortunately, high scores grade .

Gleason score 9 (4+5) Grade group 5

He did not have a prostatectomy

tango65 profile image
tango65

You could discuss a direct biopsy or a liquid biopsy to study the genome of the cancer to determine if there are mutations which could make the cancer sensible to specific medicines such as olaparib or keytruda. With his PSA and the presence of bone metastases the liquid biopsy could have a good yield. They could also obtained circulating tumor cells and determine if the cancer has components of small cell or neuroendocrine cancer.

After failure of drugs such as zytiga or abiraterone, chemo could be a better choice than using drugs such as enzalutamide or apalutamide. The chemo could be docetaxel, but if the cancer has components of small cell or neuroendocrine cancer they could combine docetaxel or cabazitaxel with platinum compounds and or etoposide.

formula27 profile image
formula27 in reply to tango65

Thanks, you are so helpful

tango65 profile image
tango65 in reply to formula27

Best of luck.!

larry_dammit profile image
larry_dammit

I was in the same situation, urologist every 6 months, thought I had kidney stones because of intense pain in my side and lower extremity, messed around with him to long. May of 16 PSA was 4. Aug it was 11. Stage 4 here, oncologist since then. 6 rounds of chemo taxotere with lupron and Xgeva for the bones. PSA 0.05 since. Love my oncologist , my urologist not so much. Good luck with the fight against the monster. 🙏🙏🙏

in reply to larry_dammit

Hi Larry

Who is you MO????

Tom

larry_dammit profile image
larry_dammit in reply to

Hey Tom. My oncologist is located in St. Joseph ,Missouri. He’s a medical oncologist. Name is impossible for me to pronounce. Everyone there just calls him Doctor AJ. Rony Abou-Jawde. Mosaic Hospital group with ties to Mayo

in reply to larry_dammit

Thanks Larry

I am here in Phoenix and a patient with my MO at Mayo clinic. How is your MO affiliated with Mayo.

So happy about your success Please let me know.

Tom

larry_dammit profile image
larry_dammit in reply to

The hospital is a Mayo Clinic Care Network. So in short my Doctor has access to Mayo’s expertise and knowledge. Example. I saw the piece on cancer vaccines, my doctor knew about it and the hospital already has 3-4 people in trials .

in reply to larry_dammit

Ho Larry:

Mayo in Phoenix has 3 - 4 people on it?????

larry_dammit profile image
larry_dammit in reply to

Sorry. Don’t know about Phoenix but St. Joseph, Mo has 3-4 in the trial. Ask your Doctor he will be able to tell you.

in reply to

I don't have an MO yet. I live in Glendale, AZ. Can I ask who your MO is? Does he play by the book or is he open to trying things like the fenbendazole or cholera vaccine I've been hearing about on this site?

in reply to

Hi WSO:

My MO is at the Mayo Clinic. His name is Dr. Brice. I have not yet asked him about the cholera vaccine. I would say he is quite conservative.

What is fenbendazole?

FYI - I am going to get a second opinion at M.D. Anderson here in Gilbert on 11/18. I am meeting a new MO from MSK in New York that just moved to Phoenix. His name is Bryan Wong. He is taking new patients.

Are you on Lupron? What is your history? I have been screwing around with our PC monster since 2002.

Fun and Games,

in reply to

Fenbendazole is a de-wormer drug that has been discussed on this site as having PC benefits. I used this site's search function and here is one link that came up:

healthunlocked.com/prostate...

I was dx'd in 2016 with gleason 8 PC with PSA of only 2.7 at age 66. I received a six month eligard injection shortly after diagnosis. I declined external beam radiation recommendation and chose full gland HIFU ablation instead. My PSA was undetectable for a while but has since crept up to 0.6. I'm prospecting for MO's in case this thing gets bad.

in reply to

WSO

Thanks so much for the info.

I will ask my MO too.

j-o-h-n profile image
j-o-h-n in reply to

His name is Curley....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/07/2019 11:13 PM EST

formula27 profile image
formula27 in reply to larry_dammit

Thank you Larry, good luck to you too .

Peterd110 profile image
Peterd110

When did you switch to dexamethasone?

formula27 profile image
formula27 in reply to Peterd110

2 weeks ago

VictoryPC profile image
VictoryPC

He needs to look into PCSPES like I did. It helped me so much.

formula27 profile image
formula27 in reply to VictoryPC

He can certainly try that . Thank you

j-o-h-n profile image
j-o-h-n

Can you tell us his location, his Gleason score, his treatment center(s), his doctor's name(s).

All info is voluntary but it helps us help you and helps us too. Thank you...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 11/06/2019 6:53 PM EST

Muffin2019 profile image
Muffin2019

I fired my urologist stuck with oncologist, he is great.

formula27 profile image
formula27 in reply to Muffin2019

Do you think, if he had biopsy done by his urologist in May 2018 when his PSA level was only 4.0 would he be in different situation today ?

Muffin2019 profile image
Muffin2019 in reply to formula27

Might be, my urologist saw a cyst in both kidneys and wanted to biopsy or run a camera up there. My oncologist checked it and said it was from getting older, we all have them so leave them alone unless they bother me. I fired the urologist, after the money from tests.he did the biopsy just to confirm that it was stage 4 and found the Gleason score of mostly 9's, it helped the oncologist plan a treatment.

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