Newly Diagnosed Metastatic Prostate Cancer

[Evans71720]

62 years old diagnosed with Stage 4 metastasized to both hips, spine, and ribs. I have yet to find out if lymph nodes are involved. Gleason score was a 9-10 and PSA level was at 113. Great health and working hard, then worsening back pain, and suddenly you receive the diagnosis. Received my first ADT therapy shot last week with Lupron. I have read many articles suggesting I should be considering chemo or radiation therapy simultaneous with the hormone therapy. Any advice on others who didn't receive diagnosis until the later stage with metastasis. What were your options or most successful treatments?

[Tall_Allen]

Here's a discussion of your options:

pcnrv.blogspot.com/2017/06/...

[tango65]

You could discuss with your doctor ADT plus Zytiga or ADT plus chemo. There is not difference in survival with one or other therapy.

ncbi.nlm.nih.gov/pubmed/295...

In general MOs prefer to do chemo if there are many metastases.

Radiotherapy to the prostate seems to help in patients with few metastases (<5).

urotoday.com/conference-hig...

[Schwah in reply to tango65]

I did all three. And radiation. Hit it hard and early. Both drs I’ve spoken to at prostate oncology specialists (Scholz and Turner ) believe in it and have gotten great results. Of course no study on all 3 at the same time but these guys were doing early Zytega / lupron and early taxotere / lupron long before studies proved how much it helped . I got a second opinion at ucla and they said “ makes sense it would work and hope to see a study soon” but we can’t advisd to do all 3 until proven in a clinical study. I chose to do all 3 now. But that’s me. I’m no dr but it made sense since most clinical studies have been showing early use of the tools in the box work better than later. They didn’t solve HIV until a “cocktail “ of drugs worked.

Schwah.

[tango65 in reply to Schwah]

I would have done the same. There are not data to support it, but with stage IV cancer, there is nothing to lose being aggressive with therapies know to be useful to control the cancer.

[strummer]

My husband is in same boat. He had symptoms but no one mentioned cancer. Due to urinary issues he was being followed by 2 urologist. Neither did PSA.

Had MRI last month for low back pain and found out it’s Stage IV Mets to several bones. Gleason 9, PSA 607 now. What an awful shock.

Had ADT and bone meds on Friday. He will start chemo this week along with ADT- Firmagon monthly. He is 66 , strong, healthy so we want to hit it hard now. He Chose chemo to attack everywhere. Being aggressive while he is still in good health so to speak. Best of luck

[pakb in reply to strummer]

Strummer- Almost exact same for my husband but he is 49. Diagnosed 16 mos ago. Discovered during TURP for urinary issues. Didn't do PSA until 2 weeks after they put him on casodex. When PSA was finally done it was 677. GL 9. Mets to local lymph nodes, spine, hips... we have done lupron throughout, started taxotere a month after diagnosis got PSA to 25 and now prednisone + Zytiga with PSA down to 9.3. Newest scans show all Mets less bright and shrinking. Wish PSA was lower but it is moving in good direction.

[strummer in reply to pakb]

glad to hear your husband is responding to treatment. mine had his first chemo yesterday and so far is good. he will continue to get monthly zometa for the bones. he has numerous mets. just hoping he responds well to treatment. frustrates me that PSA's are not encouraged regardless of their false positives. I feel had he had them it would have never gotten this far.

[pakb in reply to strummer]

Strummer- They are supposed to take symptoms in to consideration with when they decide to take PSA. And over 50 I thought was when they are supposed to do baseline? My husband's father has pca and my husband had two years if prostate issues with self catherizing etc...so sounds like both of our husbands urologists were negligent. I'm going to be thinking about you and hoping your husband has great responses to treatment. Lots of great advice on this forum about getting through chemo. ❤

[strummer in reply to pakb]

thank you! I agree re; urologists. my husband had several symptoms too. Now focused on getting things under control!

[Evans71720 in reply to pakb]

The PSA reaction might be great news from what I’ve read. Don’t have copy of the article but I was reading studies where reading PSA Nadir prior to 7 months from initial ADT therapy showed much poorer outcomes for patients. Sudden drops in PSA generally lead to much quicker hormone resistant advances with the cancer.

Best wishes you guys are in my prayers!

[pakb in reply to Evans71720]

I had read a few of those early on in our journey. Thank you for reminding me- I need to look them up. I'm hoping that's the case.

[Tub111]

Hubby is same age and nearly the same diagnosis but does have involvement in pelvic lymph nodes.

(Profile has his history)

He did double dose Firmagon, started Zytiga w/prednisone 4 days later and then switched to Lupron depot 3 month injection. I think with where we are now we would have asked for radiation at least in the beginning.

No easy answers as it is your body, your choices.

Just never second guess them...

Sheri ( wife, caregiver, cheerleader)

[j-o-h-n]

Greeting.... You've come to the right place... Would you be kind enough to tell us where your located and where your being treated (Drs. names if you wish - no secrets here).

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 12/13/2018 7:58 PM EST

[Evans71720 in reply to j-o-h-n]

In arkansas.....being treated thus far in Pine Bluff with urologist David Jacks. I have yet to get or select an oncologist or expand my medical team at this time. Another appt with urologist next week, then go from there

[NurseRatched in reply to Evans71720]

Just my two cents, but I’d make an appointment at MD Anderson and head there ASAP.

[Evans71720 in reply to NurseRatched]

To my knowledge I need a referral to be able to schedule an appt with them right? Not to mention the whole insurance jargis

[NurseRatched in reply to Evans71720]

Don’t know the answer but I suggest researching that. If so, then the urologist should hop on it for you - y’all need to be there.

[j-o-h-n in reply to Evans71720]

Thank you for the information.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 12/16/2018 12:19 PM EST

[jfoesq]

I would suggest you look into POSSIBLY having your prostate removed along with possible removal of some lymph nodes. That’s the way my doc treated me 7 years ago for my metastatic PC. It was unheard of back then to remove the prostate and I can’t state definitively that it helped, but I do believe more docs are recommending it. There are potential serious consequences to consider with surgical removal of the prostate (incontinence, erectile disfunction....) but I was fortunate and only suffered mild incontinence for about 1-2 weeks. My erections are smaller and not as hard, but I believe that is as a result of my ADT and not the surgery.

[Alice85]

My story.39 treatments with chemo-Bad idea. I did not ask what the side effects are.

Well, it caused heavy scar tissue on my bladder. This caused my bladder not to retain as much urine. Catheters worked for a year when they became painful. A Super Pubic Tube inserted into my bladder, a tube goes into a Night bag and a Leg bag during the day..

Even my Urologist does not like chemo. He was not around d when all this started.

I take Lupron shots every 6 months. I am a 4 Stage Prostate Cancer , that spread to my lungs.

I have been taken ONE 250 mg Zytiga and , Two 5 mg Prednisone for 6 weeks.

It did not help. My PSA is 0.22 and my CT scan showed that the cancer has spread.

I am on 4 Tabs of Zytiga on a empty stomach, wait an hour for breakfast. No Grape fruit or Orange juice.

An hour later 1 tab of Prednisone and another at dinner.

Anther blood test and a CT scan coming up in May.

I study every chemical now to understand the chemistry of all these chemicals.

More info later.