What’s new? (Well, I’m new here, for starters.)

[Sea5]

Hi, My dear Dad, age 86, is on Lupron. He took Zytiga, then Xtandi (which the doc just told him to stop bc his PSA went up a bit, and he was having balance issues). New spots (lung, maybe liver) showed up on a recent PET scan. His doc didn’t communicate the severity of this...it was a bit of a shock when another staff member told me yesterday that they had nothing left to offer him. So are there any new treatments? Auto-immunity innovations? Can anyone give me info so I can start googling like crazy? We are in a small town and I fear we did not receive the care we needed in this fairly rural area. Regret, regret. My dad wants to live and I want to support him however I can. Thanks so much for any tips/ideas. Best wishes to all!

[CantChoose]

Welcome! Tough news to hear.

I'm sure they're taking his age into account with regard to chemo, but you should ask about this. If your dad is healthy, it might be a possibility.

There are many things to Google, but hard to say if any are appropriate in your situation:

- Jevtana

- VISION trial/LU177

- Provenge

- BAT

Any chance of a consult with a good MO in a larger city?

[Sea5 in reply to CantChoose]

Thank you! I’ll definitely check out these suggestions! When my dad was first diagnosed we went to Duke. After a bout of pneumonia, my dad’s recovery was quite slow, so we haven’t made that road trip for a while...but I think my dad would be willing to go now. He amazes me with his desire to persevere. ❤️ Even if we got disappointing news at Duke, I think we’d all feel like we got accurate information...That’s better than being unsure of what’s going on.

[gleason9guy]

Welcome! I am in a rural community, as well. So I understand the challenges you face. In my opinion, the folks here are as every bit as necessary as anything that I've experienced in my own treatment program. They're wonderfully supportive, candid, and fully informed. Good luck!

[Sea5 in reply to gleason9guy]

Thank you, my fellow rural dweller! Small towns do have some good trade offs.

[tango65]

There are several other possibilities of treatment. He could get Provenge which may not have significant side effects and offer a survival advantage. If he could tolerate chemo they could treat him with docetaxel chemotherapy.

They could obtain a biopsy from the metastases and get a genetic study of the cancer. If sampling the metastases is impossible they could get a liquid biopsy. There could be mutations in the cancer which could be treated with PARP inhibitors ( olaparib or similar) or with check point inhibitors such as Keytruda or similar.

He could qualify for the Lu 177 PSMA treatments which could not have significant negative side effects. There are clinical trials:

clinicaltrials.gov/ct2/resu...

[Sea5 in reply to tango65]

Thank you tango65! I don’t know if we’re suffering from small-town=small-minded doctor syndrome, but as I’m reading replies like yours, I’m thinking that we should get my dad back to Duke, ASAP. The doc we have seen there is a researcher and attuned to available possibilities. It’s great to hear from this community on what these possibilities are so I can try to educate myself before an appointment!

[tango65 in reply to Sea5]

Best of luck on this journey.

[Hidden]

Was he feeling OK on Zytiga? Do you know why they took him off of Zytiga? You said they took him off Xtandi because his PSA went up a little. That would not be a good reason unless there something else such as radiographic progression, worsening of symptoms, increased pain, etc. Also, do you know what his Alkaline Phosphatase is and if it has been going up?

[Sea5 in reply to Hidden]

Hey gregg57, thanks so much for your reply! My dad did feel well on Zytiga. They took him off of it and changed to Xtandi when they found he needed radiation (sternum and spine). Regarding the recent PSA increase, that spurred them to do scans, and that’s when the PET showed new spots on a lung, and either on or adjacent to his liver. There’s also a worrisome spot in his mouth. Thankfully he has been pain-free for almost all of his journey so far. Alkaline phosphatase is a new term for me, can you explain what sort of marker it is? I'm sifting through all the notes I’ve taken at doc appts....hopefully we can soon be seen at Duke and hopefully i’ll have all my info straight. Dad has told the local doc to share any/all info with me so I should be able to get his AP history and fill in any other gaps.

[Hidden in reply to Sea5]

Alkaline Phosphatase is a marker for bone turnover and increasing/above normal range ALK PHOS is associated with progression of bone metastases. It's usually part of the blood tests that we get on a regular basis.

If he has radiographic progression along with PSA increase, that's a good reason to change treatments. It might make sense to get a biopsy and see what you are dealing with. That might help direct the treatment path. He might have genetic mutations that could benefit from targeted treatments or some neuroendocrine differentiation in the soft tissue mets that could benefit from platinum-based chemotherapy.

Is he fit enough for chemotherapy? I'm asking because that looks to me like the direction they may want to go with his treatments.

[Sea5 in reply to Hidden]

Thank you Gregg57! I’m thrilled and grateful to be learning so much here! I’m taking lots of notes. I would hope that my dad would be okay to have chemo. Years ago he weathered it for non-Hodgkin lymphoma.

Tangent....is Provenge hard on the body? The local oncology office told me it was very taxing. They were opposed to the idea of my dad getting it. (However, I’m currently really doubting the quality of the practice.)

[Hidden in reply to Sea5]

The chemotherapy for prostate cancer is on the more tolerable end of the chemo spectrum. I know firsthand because I went through it myself for 6 cycles. Can't say it was a picnic, but much easier than the flu I just went through. I felt fairly crappy for the first week after infusion, but the second two weeks were pretty much back to normal. I never threw up or lost my appetite.

They can also do the chemo with 1/3 the dose every week. That's something they often do for elderly patients that might not be as fit. It makes it more tolerable and you still get good results. Of course you have to go in 3 times as often which may be a hassle for him living in a more rural area.

[Sea5 in reply to Hidden]

Thank you! This information is a tremendous help!

[Magnus1964]

At your father's age some treatments are not advisable, i.e. surgery etc. Doctors today jump on the latest drugs and forget the older ones. Ask his doctor about casodex. It is one of the older drugs but has fewer side effects.

Stay strong, you are a good medical advocate.

P.S. you might want to try a different search engine than Google for serious research. Try Searx .

[CantChoose in reply to Magnus1964]

Scholar.google.com is the research version of Google. If you're not using it, try it.

[Magnus1964 in reply to CantChoose]

I will give it a try.

[Sea5 in reply to CantChoose]

Thanks for this info!

[Sea5 in reply to Magnus1964]

Thank you Magnus 1964 for the reply and the encouragement! My dad has always been a moderate exerciser (walking, sit-ups and push-ups daily) but yes, at 86 he has slowed down...and I definitely don’t want him to pursue any treatments that might do more harm than good. He’s so willing to keep fighting though! Thank you and CantChoose for the search engine advice!

[Tall_Allen]

Has he had docetaxel yet? It's pretty good at clearing visceral mets. Combine it with Provenge for a synergistic effect.

[Sea5 in reply to Tall_Allen]

Thank you Tall Allen! Definitely making a note to ask about this!

[Sea5 in reply to Tall_Allen]

PS He has not yet had any chemo with the prostate cancer.

[j-o-h-n]

Greeting Sea5, Good for your dad that he still wants to be around. What small town/state are you in? Keep plugging away and post here for good reliable info.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 08/18/2019 10:23 PM DST

[Sea5 in reply to j-o-h-n]

Hi and thanks for the good wishes! I send them right back to you and to everyone who has been so wonderful in communicating support and valuable info today!!!