Roller Coaster

[formula27]

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 .

[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 in reply to Tall_Allen]

Thank you very much for your suggestion

[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 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]

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 in reply to tango65]

Thanks, you are so helpful

[tango65 in reply to formula27]

Best of luck.!

[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. 🙏🙏🙏

[Hidden in reply to larry_dammit]

Hi Larry

Who is you MO????

Tom

[larry_dammit in reply to Hidden]

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

[Hidden 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 in reply to Hidden]

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 .

[Hidden in reply to larry_dammit]

Ho Larry:

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

[larry_dammit in reply to Hidden]

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.

[Hidden in reply to Hidden]

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?

[Hidden in reply to Hidden]

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,

[Hidden in reply to Hidden]

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.

[Hidden in reply to Hidden]

WSO

Thanks so much for the info.

I will ask my MO too.

[j-o-h-n in reply to Hidden]

His name is Curley....

Good Luck, Good Health and Good Humor.

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

[formula27 in reply to larry_dammit]

Thank you Larry, good luck to you too .

[Peterd110]

When did you switch to dexamethasone?

[formula27 in reply to Peterd110]

2 weeks ago

[VictoryPC]

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

[formula27 in reply to VictoryPC]

He can certainly try that . Thank you

[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]

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

[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 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.