Chemo failed- Anyone with experience ... - Advanced Prostate...

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Chemo failed- Anyone with experience on Cabozantinib and Opdivo?

Daddysdaughter profile image
34 Replies

My father 78 years young diagnosed in 2014, Radical prostatectomy 2014, Radiation x18 treatment 2014-14, Lupron 2014-present. Tried bicludamide- to many side effects. With Lupron PSA undetectable 2015-December 2016. Jan 2017 PSA 0.09 and doubling time 1 month. Mayo Clinic scans Jan 2017 small “glowing” pelvic node. Scan 2017, August 2017 PSA 3.5 Mayo C-11 scan -many lymph node metastasis from pelvic to infraclavicular areas. Option to begin chemo or Xtandi. September 2017 Xtandi started. PSA continued to rise. After three months of trial he failed on Xtandi we went for a rescan at Mayo clinic. This scan showed lymph node progression. There was also questionable neuroendocrine prostate cancer disease. January 2018 PSA 14.5 and jevtana and carboplatin every 21 days. PSA begin to increase by 1 to 2 points every three weeks. Current PSA 21.8. CT scan done showing minimal progression of lymph node disease but metastasis to spine and pelvic bone. Total of four rounds of chemo done with Jevtana and carboplatin. Gardent 360 blood test and biopsy completed three weeks ago. We are now awaiting the results and stains of the biopsy. My father’s medical oncologist Based on his pathology reports and genetic mutations will decide if my father will go on with Keytruda or will qualify and get excepted to the trial use of Optiva and Cabozantinib. Anyone have any experience with these medications and prostate cancer resistant to all of the treatments thus far?

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Daddysdaughter
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34 Replies
Tonyland profile image
Tonyland

Hi there,

Is this an immunotherapy trial? I think this is the one my dad's doc tried to enroll him in.

Daddysdaughter profile image
Daddysdaughter in reply to Tonyland

Yes

Tonyland profile image
Tonyland in reply to Daddysdaughter

Ok. Yes. His oncologist has some good reviews from it from those in his trial. My dad has an autoimmune issue that would not make him a good candidate.

From what I was told there are a few side effects with skin rash being one of them.

Daddysdaughter profile image
Daddysdaughter in reply to Tonyland

We are also Waiting for pathology report to figure it out but meanwhile I’m asking around to see if anyone has been in the trial or experienced these treatments. It’s so frightening just waiting with no treatment..

Tonyland profile image
Tonyland in reply to Daddysdaughter

Tell me about it. It's extremely hard waiting for approvals, test results, stopping drugs, etc.

I even find myself wanting to continue drugs that don't work, until we are on the next thing.

Daddysdaughter profile image
Daddysdaughter in reply to Tonyland

That’s what we wanted to do but we had to stop chemo just in case he is able to get on the study

in reply to Daddysdaughter

Hope you get in and that it works. Can not give up , We can’t give up now.

in reply to Tonyland

Ha ha ha.. what a saga... the next thing!!

Daddysdaughter profile image
Daddysdaughter in reply to Tonyland

Unfortunately we were unable to get him on the trial because they stopped enrolling for prostate.

Tonyland profile image
Tonyland in reply to Daddysdaughter

Oh no. It filled fast here in Chicago as well. The one spot that would have been for my dad only became available because someone did not qualify and neither did my dad in his case.

On to Keytruda?

Daddysdaughter profile image
Daddysdaughter in reply to Tonyland

Yes, I’m bummed!! So what is your father doing instead.

Tonyland profile image
Tonyland in reply to Daddysdaughter

We start Docataxel on Thursday. We're going with 60 mg, every four weeks.

I understand how you feel because I'm actually bummed about that.

Tonyland profile image
Tonyland in reply to Tonyland

We're doing this as a requirement for a parp trial.

Daddysdaughter profile image
Daddysdaughter in reply to Tonyland

We are still waiting for pathology results to see if he is MSI high. But this lull in waiting time is worrisome.

Tonyland profile image
Tonyland in reply to Daddysdaughter

Very much so. I have lost weight, smoking like a chimney, and lost hours of sleep.

Daddysdaughter profile image
Daddysdaughter in reply to Tonyland

I don’t let me father worry- i worry about it! There’s nothing that can be done.. patience is everything. Wishing you the best, go out and enjoy the day as much as possible . Hugs to you!

Tonyland profile image
Tonyland in reply to Daddysdaughter

Hugs to you too. Keep your head up and many prayers.

Daddy’s daughter, good to hear from you. I wish things had gone better. Must be disheartening and fearful. You have witnessed the treatments and the side effects of APC. It’s a cruel beast when it’s running amuck in us. I pray for your dad to get a break in the storm . God bless your Father and daddy’s daughter too. Keep yourself strong. Peace in your heart..

Daddysdaughter profile image
Daddysdaughter in reply to

Thank you 😊

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

My experience with Keytruda is for my Lung Melanoma, and it's working. On Friday I asked my oncologist if it's helping with my (or others) PCa, he said the verdict is still out on that.

Good Luck and Good Health.

j-o-h-n Tuesday 04/10/2018 7:54 AM EDT

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

I know that it may or may not help. We will have to try if that’s the only option left! Thank you John!

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

John,

After looking at your pic I think the Keytruda had side effects

Gus

i3.mirror.co.uk/incoming/ar...

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

THANKS Gus, that's why they call me BUBBLEWRAP.

Good Luck and Good Health.

j-o-h-n Friday (the thirteenth) 04/13/2018 8:10 PM EDT

Daddysdaughter profile image
Daddysdaughter in reply to gusgold

I had to say that was a pretty awful pic!! Lol

gusgold profile image
gusgold

DD,

In Jan 2017 when Mayo scan detected 1 glowing node why didn't they go after it

Gus

Daddysdaughter profile image
Daddysdaughter in reply to gusgold

His PSA was only 1.6 and they couldn’t determine if it was infection or metastatic “glow”. But After his PSA rose to 3.5 then the C– 11 PET show metastasis to lymph nodes from pelvic region up to supraclavicular.Their first recommendation at that time was chemo or Xtandi. My father had chosen to try the Xtandi route but failed. Rescan at the end of 2017 showed more affected nodes.

gusgold profile image
gusgold in reply to Daddysdaughter

DD,

was the scan done at Mayo...usually they do a needle biopsy to determine if the node is PCa

Gus

Daddysdaughter profile image
Daddysdaughter in reply to gusgold

They didn’t offer at that time

Suziq150 profile image
Suziq150

Where is the trial

Daddysdaughter profile image
Daddysdaughter in reply to Suziq150

clinicaltrials.gov/ct2/show...

Daddysdaughter profile image
Daddysdaughter in reply to Suziq150

City of hope

Daddysdaughter profile image
Daddysdaughter in reply to Suziq150

jitc.biomedcentral.com/arti...

Ldb01 profile image
Ldb01

Is there somewhere in USA where they do the gene testing ? It is not common here in South Africa and I know of someone who was tested in Belgium ?

scarlino profile image
scarlino

I have not had Optiva but I did experience Cabo in a clinical trial a few years back. It was a very hard drug for me: mouth sores, fatigue. I think I made it 3 months before It was stopped. Perhaps they have refined dosage now.

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