Hello. New Stage 4 Prostate Cancer Patient

rodney59

Hi, new to the forum and new to having stage 4 cancer.

I'm 64 and had my prostate removed in May due to early detection. Went this past week to a radiologist thinking I would start a radiation regiment to remove the remaining cancer. Instead was told I the cancer reached the bone and I am in stage 4.

I was in shock and just starting to process this. I have a great support network (wife and sister-in-law researching and two daughters determined to improve my diet). I am fortunate to have been in good health before this and have no symptoms or discomfort.

I plan to be positive and live my life as planned until the disease prevents it.

Any words of wisdom from fellow travelers and friends?

Clevelandguy

Hi,

Sorry to hear about your unfortunate situation. I am sure your doctors will be talking to you about some form of radiation (Cyberknife or Proton) for spot treatments+ ADT. There is also a new drug out on the market I see advertised on TV that can help with advanced cancers. Wish I could remember the name, I don’t think it’s a form of kemo but some other kind of drug. Good luck on your treatment path, keep a positive attitude, find the cancer and zap that bad boy.

Dave 3+4

Rob.Ski

Had a friend in similar situation, he did chemo, think on ADT now. Had Cyberknife for spots on bones. Initial doc wasnt recommending radiation, not sure why. He changed docs and they had different opinion on it. Definitely do research and get 2nd opinions.

Rob

Old Salt

https://csn.cancer.org/discussion/327089/hello-new-stage-4-prostate-cancer-patient

I know one shouldn't look back, but is there an explanation for your urologist not realizing the cancer had metastasized? In other words, what were your PSA data prior to surgery and what tests were conducted to see if the cancer had metastasized?

More in general, I highly recommend that you consult with a medical oncologist ASAP. Preferably one who is familiar with prostate cancer. Hopefully you can find one at a major medical center such as one of these:

NCI-Designated Cancer Centers - NCI

Rialbo

Just diagnosed with Stage 4 metastatic prostate cancer also in spine and lung. No symptoms other than severe pain in a shoulder which 4 visits to ER only gave clues when I forced an MRI taken of neck, shoulder and finally full spine. That revealed "suggested" presence of activity in left spinal region and oncologist was recommended.

Further xrays, blood and PSA (87) and finally a PET scan revealed the full extent.

Began Firmagon injection monthly with daily Erleada pill which showed PSA quickly at 1.7 and lots of the expected side effects.

Began neck radiation 10 treatments with shoulder pain gone and just finished 5 radiation sessions of lower back to relieve pain there as PET and MRI then showed.

Just changed from Firmagon to Relugolix (Orgovyx) 120mg tablet along with the Apalutamide (Erleada) 240mg tablet daily and am concerned with spacing the times of the daily dosings apart by 6 hours min. as have been suggested on web sites and printed material that Relugolix interferes with the Aptalumatide.

Oncologist indicated not a problem but Erleada printed insert indicates not to take concurrently. Would appreciate a definite explanation of this co-application, please.

rodney59

https://csn.cancer.org/discussion/comment/1709193#Comment_1709193

Thanks, Rob.

I am getting a second opinion from Mayo clinic.

Rialbo

https://csn.cancer.org/discussion/comment/1709278#Comment_1709278

Just a followup now on Orgovyx pill daily replacing Firmagon monthly infusion. Taking it morning and moved Erleada pill to 6 or 7hrs later. Orgovyx well tolerated during daytime activities, still with side effect fatigue, hot flashes the most prevalent.

The Erleada in afternoon late is better tolerated in separation and PSA and Testosterone have dropped to very low levels. Oncologist is pleased as am I.

Going swing dancing again tonight :-) per my credo ... It's not about waiting for a storm to pass, but learning to dance in the rain !

rodney59

https://csn.cancer.org/discussion/comment/1709440#Comment_1709440

Love " It's not about waiting for a storm to pass, but learning to dance in the rain !" I will take that to heart.

rodney59

Starting my first treatment today. Lupron plus Xgeva.

Will be adding another cancer drug on my next visit.

Little light headed but otherwise fine.

centralPA

No wisdom to add, I’m on AS (active surveillance) myself. Just wanted to say you’ve been heard, and I’m rooting for you, @rodney59 and @Rialbo !

Old Salt

Best wishes to both of you!