God, I cannot even think, it's just like the first day not even a year ago. Just got off the phone with Oncologist. I have what he calls "progression" of my disease with all these news mets.
What now?... They told me it was aggressive when I was first diagnosed but I didn't think it would happen this quickly
I have only been on Zytiga, Prednisone, and Lupron for like 11 months. I can tell there is something in my left lungs midway..
OH GAWD
That sucks. With visceral (lung) mets, docetaxel is usually very effective. Any chance of biopsying any of the mets?
TA they biopsy my sacrum in May of last year, it was prostate cancer
Will, they do more biopsies?.....
There are some rare variants that sometimes respond to Keytruda, PARP inhibitors or carboplatin. If they didn't find those, I think docetaxel alone (or a clinical trial that includes docetaxel) is a good choice.
Allen, when is genetic testing usually done? My husband hasn't had any and I wondered if they wait until the PCa is castrate-resistant. Is so, why is that? My husband received his first Lupron injection two years ago this month and PSA has remained at <.10 for the past 15 months.
There are two kinds of genetic testing - "germline" testing for heritable defects, and "somatic" testing of metastases. Now that germline tests have gotten so inexpensive ($200), if there is any family propensity for cancer, I think it's a good idea. Of course, a $200 saliva test doesn't find the same level of genetic aberrations as a full scale blood test costing 20x as much.
Somatic tests are problematic for two reasons: (1) the genomics of the cancer changes as it "evolves." - the genomics change over time and are different in different metastases; and (2) there are very few therapies (PARP inhibitors, carboplatin, and Keytruda so far) available based on genomic changes, and those aberrations are rare. In the "somatic" category, I would also include immunohistochemical staining. Testing is usually expensive.
Hi Dean,
Sorry you've gotten this news. In the event that you choose Taxotere (Docetaxel), I've re-posted an extensive article about avoiding side effects.
Good luck!
Thank you TNC
TNCanuck, Where is the article you reposted about the Taxotere (Docetaxel), side effects?
Oh Dean...don’t let this sway you. Fight for every possibility that comes forward! My heart raced just now with all the feelings and emotions we had not long ago and I want you to stay strong and positive!!!
🙏
Sheri (cheerleader for you all now)
Thank you so much Sheri.....
This might be a good time to look into some form of more frequent face-to-face cancer patient & caregiver emotional and social support. The fears and emotions that come with changing disease and changing treatments are very real. In my experience, being able to get all that out and to share things in a weekly supportive setting have been very helpful for me, and my wife.
The "Beaches Cancer Support Group" in the Jacksonville area might be something worthwhile for you and your wife to try for a couple of months to see if it might be a good "fit" for you. (Lupron Hugs are likely to be encouraged.)
neflcancerresourceguide.org...
Charles
Charles Thank you I will look into for sure, My wife is in a really bad emotional state right now, scared
Jesus, DeanNelson. I am so sorry that you have to go through this. There are probably no words or statements that can make it better right now. All I can say is that I hope that next line of treatments work for you and you have many more years left to come. I'm just happy that you have a lowing wife and you don't have to face this alone. Thank you for the response before. Please keep us updated if you can.
i will . promise
Just got an email from my VA oncologist, we are testing for Neuroendocrine next week Nalakrats...
which chemo did you take Bill68?
ok...
Wishing for a positive outcome.
John
Thank you John, how are you doing?
Dean,
well...I look and feel great. Last PSA was actually down a little...and my last (very recent about 4 weeks ago) Axumin Pet scan...was very good. Something they thought was showing up in lung was gone...same with something showing up in prostate...both no sign of what was there....I'm doing the BIRM "industrial" strength...LOL. They call concentrated or 7X. A little pain in feet and legs at time, but not so bad and my energy level is actually pretty good again. I do seem like I "like/need" a 1/2 hour nap every afternoon, almost....but other than that...busy and enjoying life!
what your report says is almost like my last pet scan before this one...things looked like they were going "south"...then an abrupt turn around. Blame it on the BIRM/Xtandi/Mushroom pills I'm taking....or just "a miracle"...I'll take any good turn...as I am hoping YOUR negative result turns right around! Keep faith in the fact that Miracles "Can" happen...and from all different directions.
Big hugs,
John
Thanks, it nice to hear you have some good stuff going on for you now...I will keep the faith...and I will keep you updated.
Sorry about your news. My husband is on docetaxel and adt. Minimal side effects. Hoping for the best. Keep in mind there are many treatment options.
I feel for your wife, I’ve been a wreck and we’re only 4 mos into this. Sending good vibes
Thanks!!
Dean, your wife might be interested in the caregiver group on here.
Hey Dean, right with you buddy.
When I was diagnosed 5 years ago they indicated a small amount of Ductal. No one has taken much notice if that but each of my treatments has lasted for a short time then failed. I am currently on Zoladex and Zytiga (only for 6 months) and my last PSA test showed a 50% increase over 2 months so I think we can conclude that treatment is also failing.
Seeing my Onco tomorrow and expecting him to suggest Chemo.
I can’t offer you any magic bullet, but take whatever treatment can be provided and expect it to be good for you. I wish you ( and me) all the best.
Chas
Thank you!!!
So Sorry to hear that news
Think about next step
He will have one
My husband diagnosed 13 months ago
Extensive Mets and lymph
Already hormone resistant PSA rising Mild pain in different areas
We see Dr next week
Hope is good
Dean,
Since you have good insurance, maybe you should consider going to Mayo (the one up north), or MD Anderson in Houston, or some other cancer center of excellence. You could get more opinions and options.
I have VA insurance now, I was/am a patient of Dr. Corn at MD Anderson in Houston Texas.
He is an amazing doctor. I am lucky that he agreed to communicate with the VA Oncologist. I have been unable to travel back to MD Anderson because of the cost and Dr. Corn said I am just palliative care at this time, I just didn't realize it would happen so dam fast
Looks like a few of us in a similar boat. I was diagnosed also 11 months ago. Lupron, Zytiga, and then Docetaxel for 6 sessions. PSA kept rising during chemo and now 5 weeks out is 2.19. Going into a trial with combo of cabazitaxel and xtandi at SCCA in Seattle.
Hang tough, brother!
I will hang tough ...thanks Brother
Thanks...
Nal, how do you test for Neuroendocrine PCa?
Hey Dean.... It ain't over until the fat lady sings.... and I don't see any around. I'll mention my stage IV lung Melanoma again (and again). I'm fighting it with Keytruda and it's working. Since you're going to the VA means you served our country. I did too but didn't get any medals but I'll give you one big medal 🌟. You'll be fine with all the new meds coming out and you'll beat the shit out of your C. Tell the boss not to worry and to take care of herself. You'll be around for a very very long time.
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 03/07/2019 5:32 PM EST
Well do j-o-h-n !!! thanks for the medals 🥇
I agree with tall_allen and others. Hit it with chemotherapy. I got the same type of call that you did. Fight this !
Hi Dean, stay strong . I went somewhat through somewhat the reverse of you, having survived III A/B lung cancer 7 years ago ( against approx 1 in 8 odds for 5 year survival ), and am now undergoing IMRT and Firmagon hormone treatment for prostate cancer. They hit my lung cancer hard with everything they had at that time ( maximum radiation, 2+ years chemo starting with taxodere and cystoplatin/carboplatin , and ending the last year and a half of chemo with Avastin, Alimta and Neulasta, and they surgically removed the top lobe of my right lung). And ........they were successful as I am still vertical and appreciating my life! As you know better than most, Cancer is hard and you need to hit it hard with whatever is the best treatment plan given your situation. Please ensure your medical oncologist is the best you can get, and work closely with him in your treatment. It has been my experience that the best Doctors want your input! It's not always easy to do, but a positive, forward looking attitude is essential. Never give up and Never give in! All Best Wishes, judg69
Thank you Judg69!!
Rib Mets suspected
Father diagnosed stage 4 June 2019, mets to pelvic bone, liver and lungs
Stage 4 confirmed today- bone mets in spine, ribs and hip area
Lower PSA but rib mets pain
Mets to bones, liver, lungs and lymph nodes upon diagnosis 
