PSA wall

[Jvaughan0]

PSA disappeared for three years after initial RP and prostate bed radiation. It rose to .4 last year. PSMA images showed two avid lymph nodes in pelvis. Started lupron injections a year ago and completed whole pelvis radiation ending last February. PSA dropped to .17 by April and to .1 in June. It is now September and my PSA is still .1. Have an appointment with my MO in three weeks. Any insights from the group?

[Tall_Allen]

Are you still on ADT? I'm surprised your PSA isn't <0.1.

[Jvaughan0 in reply to Tall_Allen]

Me too. Still on 6-month lupron. My third injection set for first of October.

[Tall_Allen in reply to Jvaughan0]

Maybe discuss adding a 2nd gen hormonal. In a couple of clinical trials, they are adding Erleada or Nubeqa:

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

It may be tricky getting it outside of a clinical trial, but if your oncologist is willing to appeal it to your insurance, he might be able to get it approved.

[Thompsonk]

opinion only, just keep up with psa bloidwork, it has dropped, good, the lupron, if was a six month dose, still doing it's terrible things to your body, so might even expect next psa to drop as well. Of course, must keep eye on nodes,pelvis, troubkesome.

Good Luck, especially with side effects,Lupron, my case, knowing what I know, may not have done it at all.

[john4803 in reply to Thompsonk]

As TA states, consider an addition? My MO has added Apalutamide (Erleada) & Xgeva (for the innumerable lesions of my skeleton). PSA went from 7.3 to 0.2, in 3 mons. Still holding at 0.2 at 4 mons. MO not concerned, unless it starts to rise. He has 20 patients on this combo & they have all remained sensitive & some with PSA <0.1, but not all.

What is your T? Mine was down to 12, a month ago. Will have lab work done next week. Few side effects; "warm flashes" from the Lupron, a "little" loss of appetite from the Erleada, maybe?

I exercise at least 5 days per wk., minimum of 30 min. per ea. & eat a healthy diet (wife a Dietitian).

[Jvaughan0 in reply to john4803]

My PSA has been at .01 for 3 months. Erleada sounds like a good option. I asked my MO about adding Zytiga twice during the past 9 months. He is a top MO at Duke and has told me to wait both times. Not sure if insurance will pay for either drug without his endorsement. He advised me to wait 6 months between PSA tests to avoid undue anxiety. Apparently he does understand the built-in anxiety that goes along with having cancer. Lol. I have been get tested every two months on my own using Labcorp. (Level was .2 in May, .1 in July and .1 in September) Duke does an ultra sensitive test before each visit with the MO. My level was .17 in April. I will be getting another ultra sensitive test at Duke in three weeks prior to my next appointment. I walk each day and cycling a couple of times a week. Would you share diet suggestions?

[john4803 in reply to Jvaughan0]

This is rough, so let me know if you get confused? I am 74, 5'9", 160 lbs., Consume approximately 1800 - 2,000 calories per day. I drink about 64 oz. of Water daily.

Breakfast - 1 English Muffin w/grape jelly & margarine, & 1 cup of coffee w/1tbsp of half & half.

Lunch - 1 meat sandwich (chicken, turkey or ham, 2 slices of whole wheat bread) & 1/2 cup of dry-roasted peanuts. 12oz. of 2% milk. For Dessert, every other day either 9oz. cup of Yogurt (nonfat, plain Greek) or 1 small ice cream cone.

Dinner/Supper - 2 cups of raw veggies (1tbsp. olive oil dressing), 1 cup of fresh fruit, 12oz. of 2% milk, For Dessert, every day 9 oz. cup of Yogurt (nonfat, plain Greek) & 2"x2" pc. of box cake with icing. W/this meal, daily, I rotate through the following addons:

1 can tuna, 1, 2 oz. salmon patty, 2/3rds. cheese ravioli (w/pasta sauce), 1 egg & cheese on English muffin sandwich, 1 slice of pepperoni pizza, small plate of spaghetti (2/3 cup of angel hair pasta, 1 cup of sauce, & 1 oz. of 93% ground beef) & 2 oz. of roasted pork & 1 cup of baked French fries, w/4 tbsp. of ketchup.

Now I am hungry & have to take a food break!

[Jvaughan0 in reply to john4803]

Thanks. I am as well now. 😀

[TEBozo in reply to john4803]

Ditch the fruits and simple sugar?

[farmanerd in reply to Jvaughan0]

From your post, it appears that not only you are comparing PSA tests from different labs, but also that its possible that different assays are being used by each lab. At the end of each lab report, there should be a blurb about how the test compares to a WHO standard test (I've seen +20% and -20% on mine) and also it should indicate the assay used (Beckman, Siemens, Roche, etc.). When I switched hospitals when my BCR happened, I made sure that the new one used the same lab and assay that the prior one did while we were verifying PSA increase -- initially, I had to have a test repeated because they had ordered a different test. As soon as treatment started, we switched to the in-house lab to watch my PSA response to Firmagon . . . thankfully it's back to undetectable after exhibiting a PSADT of 3.5 months.

[farmanerd in reply to farmanerd]

My PSA response to Firmagon:

0.40 PSA on 5/6/22 (test at Labcorp)

Firmagon injection 240mg on 5/10 and switched to in-house lab

0.12 PSA on 6/7 and 80mg Firmagon injection

0.06 PSA on 7/5 and next injection

0.03 PSA on 8/2 and next injection

<0.02 PSA on 8/30 and next injection

[Jvaughan0 in reply to farmanerd]

My thinking was to parallel test to monitor PSA. My MO orders a ultra-sensitive test every six months prior to Lupron injections at Duke, which is nearly three hours from my home. I decided to get a baseline PSA test using a nearby Labcorp site off insurance which cost me less than $18 for the standard test. I don’t expect the test numbers to line up, but they are close enough for me to use local results as an early warning system.

[Jvaughan0 in reply to Thompsonk]

Lupron is a butt kicker for sure. ... my second experience with the drug. Thanks for offering your thoughts.

[oreogon]

My prostate cancer started in 2012, psa went from 0 to 8.8 in 6 months, bio 8 out 10 did radiation then on Lupron, then changed to Eligard. testosterone 0 psa 0, body got used to drug after a while put no Zytiga 2 a day too. everything 0/0 so stopped Eligard all still 0/0 went to 1 Zytiga a day for long time testosterone still 0, psa slowly climbed to 0.56 in 2 years back on 2 Zytiga now will see ? Suggest your order prostate foundation guide 1 800 757 2873 gives so information, wish I had it in 2012 would have helped a lot. short but sweet, keep fighting

[SallyJones]

I had been corrected during previous replies that I don't belong in this dialogue as my husband' s Stage T3b aggressive Prostate Cancer is not metastasized. So to you and anyone else-I received your email thru Heal Unlocked, and just wanted to offer yo my prayers and encouragement to you, instead of ignoring the email. For FYI, as he finished his radiation to the pelvic area about 2-3 months ago, and he is still on scheduled Lupron shots, I cannot contribute anything helpful. His PSA is .01 and aside from hot flashes, he is doing well. God Bless you and hang in there.

[SallyJones]

Thank you very much for ur kind reply.