My PSA jumped from 0.3 to 0.5 and the lymph node mets grew about 10% according to the latest CT scan.
I am on a trial with the combo of abiraterone and apalutamide. Previously: RP, radiation x 2, and taxotere chemo. I “progressed” after each of these.
Has anyone on the forum seen things turn around again while staying on the same treatment?
Why wait until the PSA hits 2.0 before moving on to the next protocol?
You had salvage radiation twice?
Yes. Once after the RP and a second time further up after chemo and rising PSA and scans. Second time was at my insistence and really shouldn’t have been done as it was playing “whack a mole.” New lymph node mets appeared shortly thereafter on the CT scan.
I waited until my PSA reached 1.3 before I had a Ga-68 scan which only identified five sacral LN's. A total of eight were consequently removed via robotic surgery which only bought me a little time before my PSA climbed back up to 0.71. That was over three years ago and currently my PSA is 0.003 due to ONLY the application of tE2 gel.
Tall_Allen hit the nail on the head when he questioned the validity of my $75K LN surgery.
I asked about surgery to remove the three metastatic lymph nodes and was told two things by my oncologist: there would be a high likelihood of lymphodema, and because my disease is systemic the treatment should be systemic.
Please tell us more about the tE2 gel.Thank you
Sure! 'Oestrogel' is a brand name of a transdermal estradiol (tE2) clear gel that is produced by Besins in France generally used by postmenopausal females to replace declining E2 levels. Instead of ingesting oral hormone replacement supplements (such as the old DES) which can increase cardio events since they pass through the liver, transdermal hormones are absorbed through the skin and enter the bloodstream directly thus avoiding what is known as 'first-pass hepatic metabolism'.
E2 is present in both women and men (men obviously having much lower levels) and has numerous functions; maintaining bone density being a major factor. Osteoporosis is quite common in postmenopausal women, hence the need for E2 supplements.
Using tE2 as an alternative to traditional LHRHa (luteinizing hormone releasing hormone agonists such as Lupron and Zoladex has been shown to be equally effective without many of the side effects. A previous post of mine titled ‘The Patch Trial’ details the effectiveness of tE2.
In short, the action of tE2 is that where which flooding the bloodstream with E2 sends signals to the hypothalamus/ pituitary glands (negative feedback loop regulation) to tell the testicles to slow down or stop the production of T. Some T is aromatized into E2. This action produces the same results as castration.
I apply an amount of the gel (equal to about three toothbrush doses) to my inner thighs and lower abdomen after awakening and before bedtime.
DES (oral estrogen) was a very effective ADT therapy until it was replaced in 1985 by Leuprolide (Lupron). tE2 is just as effective without the CV risks.
I have been posting my blood test results about every three months and I have also posted some information on tE2 therapy. You might look at my post from about a year ago titled: How many of you have been using tE2 as your only form of ADT?
Thank you
Seems like the gel is helping, where do you get it from?
It is doing a great job of keeping my PSA very, very low. I buy it here in Thailand.
I agree. The LN metastases growing is enough to signal progression. If any are big enough, maybe it can be biopsied. Otherwise discuss Xofigo+Jevtana
Thanks. Biopsy has already been done on one node so I have all the genetic information. Only “P-TEN” loss revealed. I will be discussing J plus X with the oncologist after another blood draw in June.
Here's the trial of Xofigo+Docetaxel:
ejcancer.com/article/S0959-...
Thanks for the link.
I have one last trick before Jevtana. I am only at 500-mg of abiraterone. I can double it and see what happens.
I don’t have any bone metastasis (yet) so probably just Jevtana for me.
In your profile, you wrote that your L5 vertebra lit up on an Axumin scan. Unlike a bone scan or NaF PET, Axumin does not accumulate in areas of new bone formation due to previous bone damage. Does your report say what the SUVmax was? Absent a definitive biopsy, the best way to tell is if it shrinks with ADT.
My second round of radiation resolved that bone met according to a subsequent bone scan. Thanks for your comments.
Resolving a bone met does not mean you have become non-metastatic. You certainly do have metastases in your bones that are too small to show up on imaging. That is exactly the kind of thing Xofigo is best at.
OK, thank you for the clarification. In the trial the men were bone-predominant mCRPCA. I am lymph node predominant with no known visceral mets.
I was given a good reason to wait when I got my test results and saw my Oncologist last week. Yes, the cancer has morphed around abiraterone and apalutamide. It only took 16 months. I have visible mets to the spine and the lymph nodes are growing. If I wait until the cancer progresses further I may be eligible for an immunotherapy-based trial, tailored to my tumor’s genetic markers. The doctor predicts this could take 3-6 months.
Most immunotherapies do not work well for prostate cancer. If you want an immunotherapy trial that involves a combination, consider one of these:
clinicaltrials.gov/ct2/show...
clinicaltrials.gov/ct2/show...
Thanks for the suggestions. My oncologist said he’s seeing a good response from very healthy patients. I hope to be one of them. I’ll see what he offers me at MD Anderson as I’ve placed my trust there.
Probably your trial has specific criteria for declaring a subject as a treatment failure. If you change treatments before the threshold you will be ending participation. Maybe discuss this along with your next options. It would be nice to have your response included in the trial analysis. But of course your first duty is optimizing your own care.
I was given a good reason to wait when I got my test results and saw my Oncologist last week. Yes, the cancer has morphed around abiraterone and apalutamide. It only took 16 months. I have visible mets to the spine and the lymph nodes are growing. If I wait until the cancer progresses further I may be eligible for an immunotherapy-based trial, tailored to my tumor’s genetic markers. The doctor predicts this could take 3-6 months.
Alternative will be docetaxel.
An update: yesterday my urologic oncologist upped my dose of abiraterone to the full 1000 mg/day. I have to watch my blood pressure carefully.
This is on top of the full dose of 240 mg/day of apalutamide in this trial.
Goal is to decrease PSA and lymph nodes on next set of CT scans.
Couldn't wait anymore!
Wait and see where the horse is headed
Why no testosterone monitoring?
Waiting 
waiting but anxious 
