PSA 700

Happy to hear he is having a good initial PSA response and relief from pain.

Do leave room for some hope. I was in a similar situation 6 years and 2 months ago. I had some really bad lower back pain, a NM Bone Scan that lighted up like a Christmas Tree, and a ridiculously high PSA of 5,006. Initial treatment melted my pain away within a couple of weeks and brought my PSA down to 1.0 in just a few months.

During my journey I have found face-to-face Prostate Cancer Support Groups to be helpful. There has been one that meets in Austin, TX on the 1st Tuesdays at 7:00pm.
http://www.ustoo.org/support-group-near-you/united%20states/texas

I'd like to address one of your initial questions, especially whether to talk about it and how to treat him. The answer on how to treat him is easy, I think. Treat him as normally as possible. Don't treat him like an invalid. How should you talk about it? My suggestion is that you should ask him about it periodically, but not every week. If he has been to the doctor or gotten tests, ask him about it. When I was undergoing treatment, I understood that talking about my disease could be sort of a downer for other people (especially my kids) and I didn't want to burden them. At the same time my children didn't want to pry or make me talk about it if I didn't want to. That can lead to no one talking about it, which isn't good for anyone. Keep in mind that if your father doesn't talk about his cancer, that doesn't mean he isn't interested in talking about it. If he doesn't bring it up, you should occasionally, and you can judge from his response whether he wants to discuss it.

Great news! Thanks for the update. My hope for continued success.

Great to hear that things are looking better. Thanks for checking in and updating

Current update.

My Father went through chemo to try and really get ahold of the cancer. His PSA levels kept dropping to the point two months ago where they leveled off at .99. He went in as scheduled yesterday and got the news that his PSA is 3.99 now.

He has only been on Lupron (Last injection in May) and finished his chemo treatments in June.

We are trying to get back into doctors office now, but course she is not available today or tomorrow on her schedule.

We had assumed it would be up from 2 months ago, but this big of an increase has caused panic. He has felt great physically and working out all the time which has always been a "vice" for him and he wanted to have a sense of control over this.

Can I get some honest feedback about thoughts on this large of an increase this soon where is this in the realm of increases and what would be a next step?

Thanks, Gentlemen

Aus Tex,
Hang in there. Your Father is still doing good. I was wondering which chemo treatment (besides Lupron) that he was on back in May /June?
Wings aka Dan in So Cal

Hello, AusTex ----

Tremendous response to his chemotherapy infusions --- perhaps TAXOTERE, which is typically given every three weeks, as it was in my case.

Some possible topics --- have you discussed medications like XTANDI or ZYTIGA? Write down the names of these two medications, which are commonly available ---- and ask your father's doctor about these.

Many of us here have been helped by XTANDI or ZYTIGA. Certainly worth an inquiry, following your father's chemotherapy infusions.

I will follow your future posts. You and your father have my 100% support!

With my best,
CYCLONE - # Iowa State University

Hey everyone. Thank you so much for the kind words and information. I spent some time with my father this weekend and he is very upbeat and positive which is great.

He meets with his MD Anderson oncologist on Wednesday but so far his local oncologist has suggested checking his PSA level in 3 weeks before making any adjustments.

I will pass along the medications mentioned so far.

Thanks again everyone and best of luck with your journeys as well. Y’all are in my prayers.

MDA is on the list of the trial I found and you could ask their opinion on trial for your Dad. It may be that they feel he will do well on Zytiga or Xtandi so why take the chance on a trial or adding chemo to the regiment now.

Thank you for the replies.

Cyclone you are always so kind and encouraging, which I really appreciate.

My father is physically very strong, the doctor told him at the beginning of this journey that the stronger he could be the more options of what to throw at him so he has really taken that to heart. Because of that I have no doubt he could handle another round of chemo (assuming the side effects were similar to his last experience)

Are there any certain questions we should be thinking about to ask the doctors?

Thank you so much Cyclone for the potential questions it was very helpful. This was the news from the visit of which I know have a few follow up questions I will ask the Dr, but if you have any insight it would be greatly appreciated.

His PSA has now risen to 10.7, but he has no pain related to cancer and has tremendous energy only urinating 0-1 times in the night so overall the Dr said he wasn't concerned about PSA, but that it's time to move to the next step.
Most importantly my father still feels great and has minimal to no known side effects he is speaking of so prayers that continues until we find the next best option to combat the cancer His recommendation is as follows

Step 1 Start Provenge within the next 2-3 weeks. 1 month to be fully implemented and a follow up 1 month after to see if his cancer is responding. The Dr's words were that it usually doesn't work and we move to the next step, but if it does work it is a great option.

Step 2 find a clinical trial if the Dr sees one that he feels good about.

Step 3 Start Zytiga, he thought this would have less side effects and a better quality of life for my father

Step 4 Radium 223

Step 5 Cabazitaxel which he said he wanted to keep in his back pocket.

His Dr. is Sumit Subudhi who specializes in immunotherapy and had trials that tested provenge with nivolumab and ipilimumab to help it work, but it sounds like there are some severe toxicity levels with these drugs and a lot of the participants in the trial had to come off because of it. I asked if these would be introduced as well to help the Provenge and he said no, but thats what he is setting him up for in the future.

I should have also asked if he would have to restart provenge again or if after that's implemented we can introduce the other drugs at a later date, would anyone know that answer?

I know the common second line treatments are xtandi and zytiga, but can these be sequenced one after the other or is it just choose between these 2 and that would rule out the effectiveness of the other drug?

My father has a little tension with the thought of this not working and it being potentailly 11-12 weeks before we see the Dr again and know for sure. The Dr told him that as long as he doesn't have pain he isnt concerned with the rising PSA number and that if he has pain he will schedule him in sooner.

My father had the option to leave MD A and go to a clinical trial that was testing the combination of Zytiga and Cabazitaxel, but that would have gone against the recommendation of MD A so he chose not to do it and he feels confident in that decision, but does anyone have any thoughts on the plan as its laid out? If I can answer any other questions please let me know.

As always I greatly appreciate everyone in this forum and I hope that one day the info I'm putting here can be helpful in the future.

All My Best,

AusTex

AusTex ----

What did the new scans show for your dad?

CYCLONE --- # Iowa State University

I don't understand why a new scan wouldn't be valued, at least for a point of reference.

My Mayo Clinic scans are valued by my local oncologist, and scans my local oncologist request that I undergo, are referenced, shared, and valued by Mayo Clinic.

That's just my personal experience, which I feel is how it should be --- coordinated care.

If THEY don't really feel Provenge has much potential to help, as they seemed to indicate for your dad's case, and your dad's initial PSA was 700, why would Provenge rate as their frontline treatment idea, when they seemed so uncertain that it would even help?

They don't seem very hopeful that PROVENGE will make much of a difference for your dad. Why is that their "Plan A" for your father?

That's just my initial concern.

By contrast, when I started Zytiga, my oncologist ordered a PSA within about 3 weeks, to see if it was making a difference. When I started chemotherapy, PSA was tested before each infusion, to assess efficacy of previous treatments.

My reason for sharing this is that these new treatments were monitored closely --- and efficacy of the treatment was constantly monitored.

I only state this as a something to reflect upon, as a comrade --- since you are seeking thoughts and reflections.

Their Step #2 in the treatment sequence is to look for a clinical trial, anyway --- and your local oncologist is offering that right NOW, with a combination of TWO known cancer fighting agents. Is that worth a second look?

Just some reflective thoughts -- offered out of brotherly concern.

You seem uncertain, perhaps, and so I offer these as discussion points for you and your father.

Humble thoughts -- no medical expertise implied or intended, on my part, whatsoever.

You seem to be "caught" between two very differing medical approaches being offered to you. I wish they had a shared & cohesive "vision" for the next-step treatments ...

I would have felt the new scans your father took this week should have at least warranted their interest, before formulating the treatment plan.

Why else did your dad go through time-consuming and costly scans this week, right before the consultation?

I always discuss the need and relevance of every scan with my doctors, before agreeing to each follow-up scan.

You asked for honest thoughts, and these reflections were mine, after reading your post.

I have followed your posts all along, and want the very best for your father's case.

My very best,
CYCLONE --- # Iowa State University