New to site, would appreciate any suggestions or comments.

[Chadsdad]

Diagnosed Aug 2016....PSA 22.3....Gleason 4+3=7. RP Sep 2016. 1st PSA was .5. Radiation to prostate bed Jan 2017. 1st PSA after radiation was .7. PSA bounced around from .7 to .9 until July 2018 when it jumped to 2.41. Scan in Aug found 1 lymph node lit up. 25 nodes removed Sep 2018 and only the one came back cancerous. Received 2 PSA results since surgery and both were .7. Having test every 2 months now and waiting until there is a rise to at least 2. First diagnosed at 61.....good health, very active and not one symptom of prostate cancer. What do you think guys?

[Tall_Allen]

Where there are two cancerous lymph nodes detected, there are likely more that are too small to be detected. I think you should talk to a radiation oncologist about treatment of your pelvic lymph nodes.

[Chadsdad in reply to Tall_Allen]

Only the one out of the 25 that was removed was positive. It was the only one the Axumin scan had picked up. They were all from the pelvic area. I’m thinking we should hit this stuff while it’s weak and knock it out. My Oncologist/Urologist wants to wait until PSA reaches a 2 then do another scan. I appreciate your idea.

[Tall_Allen in reply to Chadsdad]

Axumin can't pick up any metastases smaller than about 4 mm. If you wait, you will give it a chance to spread more.

[Chadsdad in reply to Tall_Allen]

Tall......how do you feel about the risk involved in radiation to all pelvic lymph nodes? Have an appointment next Tuesday to discuss treatment with an RO.

[Tall_Allen in reply to Chadsdad]

Side effects were pretty low in RTOG 0534:

pcnrv.blogspot.com/2018/10/...

I've known several guys who had it done - none had lasting side effects.

[Magnus1964]

Didn't any of your doctors suggest ADT, i.e. casodex, Zytiga, Xtandi, after radiation?

[Chadsdad in reply to Magnus1964]

No.....I asked prior to scan that found the 1 lymph node. Urologist said he thought if I started too early, it would shorten the benefit. He wanted to wait until PSA reached 5.

[j-o-h-n]

Greetings you've come to the right place for help. Now here comes my usual questions to new comers. Where are you located? where are you being treated? name(s) of doctors(s)?

Those questions are for us to help you. If you don't want to answer them, no problem! Are you being treated by an Oncologist that specializes in Pca? If not see one.

BTW if don't answer the questions you will have to wrestle our resident alligator. We nick named him "Handbag".

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/15/2019 4:51 PM EST

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

Live in Mobile, Alabama. RP/ Radiation was done in Mobile. Urologist (Coleman) sent me to East Jefferson ( LSU) in New Orleans for the lymph node removal. Doctor there (Delacroix) was an Oncologist/Urologist and does research with prostate cancer. He is the one that wants to scan once PSA reaches 2, Urologist in Mobile was going to wait until it reached 5 before any other treatment. Not crazy about waiting until it gains some steam. Need your guys to give suggestions, ideas and insight, but I’m not gonna wrestle an alligator.

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

Hmm... You asked all the right and pertinent questions. Good Job!

Best,

AJ (from CT)

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

That's cause I was a year younger and a year smarter.....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 02/10/2020 7:55 PM EST

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

Hmm... Didn't notice the date.

I guess I'm a year older and a year dumber!

Best

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

You mean wiser...........

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 02/10/2020 8:03 PM EST

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

Thanks!

[j-o-h-n]

Thanks for the response.

That's okay the alligator only eats Yankees... We have a motto here "HIT IT HARD AND HIT IT FAST". I would select Dr. Delacroix from the two. Can you locate an Oncologist that specializes in Prostate cancer (Pca)? Would be best.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/15/2019 9:56 PM EST

[Chadsdad]

I will find one next week.

[Moespy]

I had RP then a recurrence followed by radiation to the prostate bed and then another recurrence. I am 61 years old and my PSA is 0.4.

I had the newest and best PSMA Pet Scan (F-18) on a trial at NIH in late December and it lit up one pelvic lymph node. Because of this scan my treatment plan was moved forward.

This week I am starting ADT (casodex and lupron) and will have all my pelvic lymph nodes radiated next month and continue with ADT for 2 years. I believe this a good plan to fight the disease, hitting it directly with radiation and systemically with ADT and I expect nothing less than a durable remission.

I am being treated at Johns Hopkins. Please talk with Dr. Delacroix about this treatment plan for your dad. If you want to try and get the PSMA scan on a trial. Go to clinicaltrials.gov and search for PSMA Scan.

Best wishes,

Jim

[Chadsdad in reply to Moespy]

Thanks Jim, your situation sounds very close to mine. I was actually DX on my 61st Birthday. I appreciate this info and will discuss with Dr. Delacroix on the 10th.

[Chadsdad in reply to Moespy]

Jim, can you give me an update on how your treatment is going?

[PGDuan]

Sorry - definitely a bummer when the RP doesn’t fix the issue. Kind of similar to my case. I was PSA 10.8 GS 4+3 and 0/15 lymph nodes following RP. Post surgery psa was still 4.0. Original scans were clear, but then Axumin identified 2 suspect pelvic lymph nodes. Completed radiation and doing 12-24 months of ADT+Zytiga and hoping for long term remission. PSA is undetectable the last few months.

Suggest talking to a good RO and MO. There is still some chance of cure, and even if not most treatments will knock it down for a very long time. Our approach was to hit it with all guns firing.

After the shock of it all and the initial side effects of surgery, radiation, and ADT+Z, I am actually feeling pretty good these days. Few noticeable side effects now and carrying on about like usual. Of course, hoping all the treatments work in the end.

Good luck - there are many good options. Just stay on top of it.

[Chadsdad in reply to PGDuan]

Thank you for the positive upbeat response.

[geo52]

Hit it hard and fast. Med College of Wisconsin hit my recurrence with ADT + RT to the prostate bed and pelvic lymphs when Psa went 0.06 to 0.27 six months post RP. Gleason 4+3, t3n0m0

[Moespy]

Hi! The adt (Lupron) immediately took my PSA down to undetectable and it remains there today. The 8 weeks of radiation was uneventful with very few if any side effects. The adt gave me some hot flashes but I did get a prescription for venlafaxine and added some black cohosh to it and the hot flashes are very mild now. Other than the mild hot flashes the adt is also uneventful. Had my second 6 month shot of lupron yesterday and we'll have another PSA blood test this Friday.

Meeting with MO next week and will discuss contingency plans if the PSA becomes detectable. Will likely go on apalutamide or abiraterone next if in fact it does come back.

Hope all is well with you!

Jim

[Chadsdad in reply to Moespy]

All is well with me other than a rise in my PSA to 1.8. Dr. Delacroix is wanting to wait until I reach 2 and do another Axumin scan. I spoke to my radiologist about hitting my pelvic lymph nodes and he advised against it. I also asked Delacroix about starting ADT before I reached 2 and his recommendation was to wait. Delacroix’s reputation is that he is one of the top pc doctors. I’m going to wait until I hit the 2 mark and see what the plan forward is. If I’m not satisfied with the plan, I will make changes at that point. I’m glad your doing well.

[Moespy]

Sounds like a good plan. Fight what you can see. Best wishes and I look forward to hearing your of your positive progress.

Jim

[Chadsdad in reply to Moespy]

September jump in PSA to 5.6.......Axumin scan showed 3 lymph nodes with no bone or soft tissue activity. Unfortunately one of the nodes was near the rectum and can’t be reached by operating and since I have had radiation to the prostate bed, I can’t have anymore. I was put on Bicalutamide for 2 weeks and will have Lupron shots Oct 16th. I have asked for the monthly shots to cut down on side effects. It was not the greatest news but it could have been a lot worse. I feel good, good health and gonna let God do the heavy lifting. Keep in touch Jim. Not sure if you ever got my name, it’s Larry Johnson and I’m from Mobile Alabama.

[timotur in reply to Chadsdad]

I’m doing monthly Lupron too, it’s a PITA, but seems to reduce the SE’s.

[Moespy in reply to Chadsdad]

Hi Larry, my full name I Jim McCormack and I from the DC suburbs in Maryland.

I assume the other 2 lymph nodes affected are not in the pelvic area? I had radiation to the bed and then again to the Pelvic Region to hit my affected lymph node.

Hoping for undetectable on your next PSA and that the Lupron controls it for a long time. Then depending on result of future scans you might move to Docetaxel, Abiraterone, Enzalutamide or a combination. Then many options after that so no need at all to start thinking about bad things at this time .

Important, if you haven't already done so, discuss with your MO getting your online genome testing from Color. Also discuss getting a biopsy of one of the lymph nodes tissue so you can have that also checked for genetics. This data will help with your future treatment choices.

Regarding Lupron.... I receive the 6 month shot which I am told is the same for side effects as the monthly. Fewer shots, fewer appointments with less anxiety. If you have side effects (other than libido and ED issues, which are a given) they're are many ways to combat them.and I have a friend with PCA who has very mild side effects so hopefully you will be the same. 4-6 weeks after the first shot is when they show up.

Look forward to comparing our progress for many years to come.

Best, Jim

[Chadsdad in reply to Moespy]

Will keep you updated as I progress thru this new adventure. I’m planning to be here for another 20 years at the least. Glad to have you along to bounce ideas around.

[Chadsdad in reply to Moespy]

Jim, started Bicalutamide about 6 weeks ago. Had my PSA checked last week and got results today......from 5.66 to 1.22 with just the Bicalutamide, my tetesterone was 600. When I was at the urologist office last week, I had my first shot of Eligard and started Erleada. Eligard shot was a piece of cake, the Erleada is 4 pills every day. So far no side effects from any of the treatments. Hope your doing well.

[Moespy in reply to Chadsdad]

Hi Larry, Great news! Eligard will lower it further, so all good news. Side effects start approximately 6-8 weeks after starting Eligard. I am taking 75 mg of Venlaflaxine and OTC Black Cohosh (540 mg) to ease the hot flashes, which works for me. Loss of libido is really strange; just no thought of sex at all. But this will hopefully return at some point when I stop Eligard in 16 months.

Blood in urine this week and just made appointment with my Urologist at JHU to get it checked out. RO says it may be from my prostate bed radiation in 2015. Hoping this will not be a big deal and we can get it resolved. I really like having all of my doctors under one roof at Hopkins; all 3 are on the same page and accountable.

Looking forward to hearing further good news from you!

Best,

Jim

[Chadsdad in reply to Moespy]

Jim, hope all is well with you and you’ve had a Merry Christmas. You were right about the Eligard and the hot flushes. They are not terrible. I can tell my testosterone is being lowered because of lack of energy, however, restless leg syndrome is my biggest problem. I’m trying some over the counter stuff and waiting to see if any of it’s gonna work. With all this being said, I can stand it all for another 20 years or so. Anyway that’s my update and am wishing You and Your family a Happy New Year.

[Boywonder56 in reply to Chadsdad]

Just reading this and notice ...the combo ..and the "lack of side effects"........how u doing now....ive been on same since dx....and it sux but dx stg 4 w mets ...and psa .05...up from nadir ....007..it has taken a toll...put on 32 lbs....no sex..etc..

[Chadsdad in reply to Boywonder56]

I gained 4#s in the 3 months, all in my stomach. My mustache seems to be disappearing but my hair feels like it’s getting thicker. The hot flushes are just a nuisance. I’m pushing myself a little due to the loss of energy, however, I’m 64 years old and it’s possible that’s part of the problem. The one thing I’ve learned is everybody is different when it comes to how they handle treatment and which one works for some and not others. Each morning I wake up and thank God for giving me another day.

[Boywonder56 in reply to Chadsdad]

And you can quit using deoderant...i do out of habit and sense of normalcy...but no mo b.o......hows the memory doing... ?

[Chadsdad in reply to Boywonder56]

Wife says sometimes I seam to take a little longer with a response, like I’m struggling to come up with the right words. Doesn’t happen often, but she has noticed.

[Boywonder56 in reply to Chadsdad]

Exactly... after 3 years I'll just stop in the middle of a sentence and forget what I'm talking about everybody tried to tell me I was just getting old but I'm only 63 in my mind was great before this crap I play Scrabble and stuff like that try to keep fresh

[Moespy]

Hi Larry,

Hurt my back 4 weeks ago and haven't been able to do my regular activities (stretches, bike, walking, golf) and have noticed a marked reduction in energy levels. Can't wait to get back to daily movement and hopefully regain my new normal energy levels.

I have never experienced RLS but if the OTC meds don't work looks like there are some good choices your doc can prescribe for relief.

The "can stand it for another 20 years or so" did not get by me and I couldn't agree more!

Happy New Year my friend and keep the good news coming!!

Jim

[Chadsdad in reply to Moespy]

Hello Jim, just got my lab results back today. After a 3 month shot of Eligard and 3 months of Erleada, I’m the proud owner of a .02 PSA and a Testosterone level of 2.46. Very satisfied even though I’m on the S2 P HF sleep schedule. That’s sleep 2 hours......get up and pee....have a hot flush, then go back to sleep. Hope your doing well my friend. Larry

[Moespy in reply to Chadsdad]

Congrats on the PSA drop! I have the sleep thing down pat. Wife doesn't sleep with me so I keep a 40 oz cup on the night stand and use it 3-4 times a night without getting up and I have a remote control ceiling fan that I crank on and off as needed for the flushes. Coming up on a year with Lupron and the new thing is having major head rushes when walking up the stairs. It is a devil of a drug but beats the alternative I bet. Great to hear you are doing well. Jim

[Chadsdad in reply to Moespy]

Jim, update on my latest lab results, PSA 0.010.......Testosterone..

0.0396 (think that’s almost a girl) LOL. Hot flushes still an inconvenience, sleep pattern the same, sleeping about 2 hrs, pee, have a hot flush and go back to sleep. Hope you are doing well also my friend. Larry

[Moespy in reply to Chadsdad]

Hi Larry,

I sleep about 3 hours, pee and have a hot flush but that is better than 1 year ago so it will likely get better for you also. PSA reading is Awesome!! I have lost all underarm, arm, chest and leg hair. I also just had a kidney stone removed so I am bleeding on my incontinence pad. I am further along as a girl than you!! HaHa! If you don't subscribe already please check out Prostate Cancer News. Article there today on Erleada and how it "significantly" extends survival. You are in great shape and between God, Pharmaceuticals and some exercise you are going to be around for a long time!

Best Wishes, Jim

[Chadsdad in reply to Moespy]

Jim, hope this post finds you well. Just received my lab results and had a slight rise in Testosterone to 13.36 (still in girl range thou) however my PSA was 0.00. Not gonna complain about that. I just finished 3 months of megestrol for hot flushes, did not help at all. So I’m gonna keep on with what I’m doing. Larry

[Moespy in reply to Chadsdad]

Hi Larry, You are doing great! I just received my last 6 month Lupron shot, hopefully forever. The PSA Tests will now become very nerve racking waiting for the results. Hot flashes are no fun as are loss of muscle, being brain damaged, having a hairless body and needing exercise daily to retain any energy! Good news is my golf game is improving.

Very happy to see how well you are doing!

Jim