Scans look great, next step Provenge and holding off on 2nd line hormone therapies

[Lynsi13]

I'm thrilled to share that 4.5 years after my dad's diagnosis and 4 years after completing chemo his scans look better than they did then! He's been on continuous hormone therapy and recently began seeing small increases in PSA (from a low of .07, to .13 three months later and then .23 at the next three month check).

The specialist at the Cleveland clinic said that he's a perfect candidate for provenge immunotherapy. She was very excited as she said she doesn't get to prescribe it very often as most men don't fall within the parameters of qualification.

She said that afterwards she does not want us to jump right in to a second line hormone treatment such as zytiga or xtandi but rather see how long he can benefit from lupron and provenge. Thoughts?

I'm thrilled that his scans look good and that he qualifies for provenge! I'm hoping it will add precious time for researchers to develop more life- extending drugs!

And here's a picture of us post- appointment, celebrating at lunch!

[tallguy2]

Congratulations to your father on his results thus far! I agree with your specialist! I am in the middle of Provenge myself, and it’s because of a low tumor burden and excellent health otherwise that your Dad and I are great candidates. Essentially no side effects, too.

Best wishes!

[Lynsi13 in reply to tallguy2]

Thank you! And that's wonderful that you're able to get Provenge as well. That's very exciting! Wonderful to hear that you're not having any side effects, either. I'm hoping the same for my dad!

[Tall_Allen]

If he has any metastases that can be zapped with SBRT, when he starts Provenge would be a good time to do it. Hopefully, that will promote an "abscopal effect" allowing his T-cells to attack the cancer everywhere.

[Lynsi13 in reply to Tall_Allen]

Thanks Tall_Allen! I looked over the scan results again and this is what it says, "No visceral metastases. Significantly decreased in size of the soft tissue lesion along the superior

aspect of the prostate tethered to the posterior wall of the bladder and

the anterior rectum." So, I'm assuming there wouldn't be anything to radiate? She told us that the scans had improved dramatically since his last scan post chemo in 2015.

[Tall_Allen in reply to Lynsi13]

What you are describing - the lesion growing out of his prostate and attached to the bladder wall and rectum - sounds like stage T4, not a metastasis. If he qualifies for Provenge, he must also have a metastasis detected before chemo.

[Lynsi13 in reply to Tall_Allen]

Yes, he had a single lymph node detected at diagnosis but it was destroyed by chemo and hasn't made a reappearance on scans. To be honest, I struggle with understanding the scans.. it says no visceral metastasis and she said that the lymph node that was affected at diagnosis isn't affected/present now. And she said that the original tumor lesion that was mentioned was significantly reduced.

[Tall_Allen in reply to Lynsi13]

Yes, they can't target anything too small to show up on a scan. If he begins Provenge soon, there may still be enough loose cancer antigens from the chemo floating around.

[Lynsi13 in reply to Tall_Allen]

He completed chemo four years ago this month... think there's a chance it's still in his system? His oncologist made a comment that lead us to believe she thought it was still working but we couldn't imagine that after 4 years it would still be present!

[Tall_Allen in reply to Lynsi13]

The antigens are long gone by now. But the longlasting effects of the chemo has to do with knocking back the most virulent cancer cells (which are preferentially killed by the chemo).

[Lynsi13 in reply to Tall_Allen]

That's amazing. It's hard to imagine that the chemo could have such long lasting effects, but apparently it and the Lupron are still doing something!

[Hidden]

Sounds like me, 4.5 years out from many bone mets, PSA of 850, a ton of lymph node involvement, etc. Did chemo and went undetectable. Last scans showed no soft tissue involvement. Did show one small bone met that i'm getting radiated. Finished Provenge two months ago and breezed through it. The worst part of Provenge for me was sitting in a chair motionless for 2.5 hours. Due to slight rise in PSA, my oncologist just yesterday pulled the trigger on Zytiga.

[Lynsi13 in reply to Hidden]

Really does sound like your situation! My dad's scans only showed a single lymph node when he was diagnosed.. PSA 257. His oncologist keeps telling me to settle down about the incremental increases in PSA, that it is still low and that we don't want to be too eager to pull the trigger on other therapies unless scans and PSA warrant it.

[tom67inMA in reply to Lynsi13]

It's interesting how different oncologists have different approaches. Mine doesn't think much of Provenge, but otherwise is very "trigger happy" and put me right onto Abiraterone after chemo. I'm only a year past diagnosis, but so far can't argue with the results

[Lynsi13 in reply to tom67inMA]

I agree! I'm sure it has to do with the different cases and even the age of the patient. My dad is 78. Many of our treatment options would be a whole different direction if he were a younger man. However, I do understand how it's enough to make you scratch your head. When we first went to the Cleveland Clinic main campus (dad has been seeing an oncologist at a satellite clinic to the Cleveland Clinic) we went under the impression that we were starting Zytiga and Provenge. The main campus oncologist (who specializes in urological cancers) asked us why the heck we were moving on to another therapy so fast when we hadn't had another scan and his PSA was still so low and moving slowly. I was very surprised as I expected the main campus oncologists to work from a more aggressive standpoint than my dad's regular oncologist and here she was suggesting we chill. So, yeah, it's confusing.. I deal with the same thing with my son who has health issues. I've had a NIH ophthalmologist tell me that he has optic nerve atrophy, it was "bad" and that he was going to lose his vision five years ago. We took him to another big name ophthalmologist and he said that was ridiculous, he has optic nerve hypoplasia, has had since birth, and it isn't going to get worse. So far we're not seeing any progression, but going to the best doctors doesn't mean they're necessarily right and definitely doesn't mean that they're going to agree on anything!

[tom67inMA in reply to Lynsi13]

I keep coming to the conclusion that a good doctor and a great response to treatment is better than having a great doctor and a mediocre response.

[tallguy2 in reply to Lynsi13]

I will be anxiously waiting on my scan and bloodwork results mid-November. Just finishing Provenge this week. Thanks to all of these comments I am well-armed with data to perhaps avoid starting second-line therapy too soon.

[j-o-h-n]

Lovely picture..... who paid for lunch?

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 10/16/2019 10:31 PM DST

[Lynsi13 in reply to j-o-h-n]

Thank you! And dad paid... dad always pays. 😊

[j-o-h-n]

What a racket!!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 10/17/2019 4:24 PM DST

[Sunlight12]

Congrats to you both! It's always great to hear such good news

Best wishes that it may keep right on coming!

-Sunlight

[Hidden]

👏🏼👏🏼👏🏼🥳🥳

[Tucaz1]

Congratulations! Would you mind sharing the doctor’s name at Cleveland clinic who put your Dad on Provenge? We’re in such a similar situation and are searching for someone who might help......