Advanced Prostate Cancer
5,739 members5,438 posts

Non Standard of Care Advice!

Hi all, quick recap. Dx with PCa in February, 2017. PSA was 8.9 and G, 8 at time of dx. left seminal vesicle was grossly impacted. Right femur and right pelvis impacted as well as a few suspicious lymph nodes in pelvic region. No evidence of distant mets. Went on Lupron and Casodex end of March 2017, and switched to Lupron and Abiraterone in August, 2017. My PSA and T have been 0 ever since. Based on advice from this board, i opted (found a very good surgeon) who performed a RP end of January 2017. Strange thing is, I feel so much better than I have in years (well before dx). Physically and mentally driven and just an overall feeling of well being. Could be also that my 3 month cycle for my Lupron Injection is now due again! Also, the foundation report indicated that I have both tmprss, and P53 mutations. As my PSA is at 0, and my ultra sensitive PSA test was .006, my surgeon strongly feels iI should at least take a holiday from ADT. My chem onco is on the fence and slightly leaning toward me staying on. Going back just a little, 24 lymph nodes were removed around my pelvic region and all were negative. There was also no evidence if PC in my seminal vesicle. The one interesting aspect, which makes me tremendously glad to have my prostate removed at this stage in the game is that, although my prostate had shrunken to 26 grams (down from 65 grams), there was still cancer in my prostate! I know I am kind of an anomaly and my urologic oncologists (chem and surgeon) dont really have any guidelines since I went non standard of care, so there, in their minds, is nothing to truly to compare my situation with. My question is, what you all think I should do in this case, take a holiday from ADT and watch to see if, and/or how much my PSA goes up, or stay on ADT continuously? I would view this as "holiday." Just wondering if any of you have shared this type of situation and experience? Thanks so so much as always!

17 Replies
oldestnewest

I think you deserve a holiday.

3 likes
Reply

Thanks Tall very much your thoughts on this!

1 like
Reply

You might consider setting in advance what you will use to determine when the holiday ends. There are no rules about it. You can set it such that your testosterone comes back to normal levels; at a specific PSA, say 10; at a certain PSADT; when mets start growing; or combinations of those. Of course, you have to taper off of prednisone. The nice thing about BAT is that the holiday begins immediately.

pcnrv.blogspot.com/2016/09/...

2 likes
Reply

I appreciate the advice on setting a baseline for my T and PC. Although this is uncharted territory, I am really intrigued by the thought. At the same time, I am apprehensive that it may not go down again once it rises since it is now under control. Thank you again!

Reply

You were saying "Right femur and right pelvis impacted". I take it that means you have mets there? If so do you have a feel for how extensive they are? That along with the high Gleason score and mutations would weigh into the decision if I was in the situation.

On the other hand, if you are keeping a close watch on you PSA, how you feel, etc. it's probably O.K. to take a vacation. You can always go back if things change. I would guess that your PSADT will be fairly long anyway which gives you time. How often do you think you will be checking your PSA?

Reply

Thank you Greg. As far as the Mets in my femur and pelvis go, I didn't have a biopsy, but they were suspect and we left it at that. One thing I forgot to mention also, is that my Gleason score, from the biopsy after surgery was noted as a 7. also, I would plan on checking my PSA, probably once a month. It's funny out of all the generations in checking my PSA, I get just a little bit apprehensive, in viewing the results. This was the first time that I felt positive my PSA would be 0! Thanks again for the reply and advice. I very truly appreciate it!

1 like
Reply

It's normal to be apprehensive when having your PSA checked. We all do. That's why we call it the Prostate Specific Anxiety test.

7 likes
Reply

Your last sentence made my night. That was great! I will remember that one! Thank you.

2 likes
Reply

I went 22 months of undetectable PSA blood tests before buying myself a Vacation Ticket. Everyone is different. I have one Doc. who is pretty Liberal--and he wanted me to go 3 years. And my Conservative MO, suggested I stop ADT at 20 months. I went 2 more. So far so good, and still shooting zero's as to PSA blood tests now 100 days on vacation.

What was worrying the Docs and myself was my particular pathology, associated with my Gene Mutations. The pathology is so rare, there is no standard of care--as typical standard of care gets you usually an average of an OS of 18 months. So I made up my standard of care. Praying for wisdom and guidance on HIGH[Adonai]. And I finally said lets pull the Vantas Implant from my arm[My Lupron type Drug], and blow the Casodex, but keep all the background drugs, and Supplemental program the same. So I am my own clinical trial, for one. I know the anxiety of the Blood tests--in my case we monitor PSA,T, and E2, every 28 days---the E2 gives you an idea of potential DHT amounts--if your E2 is down around 20 you cannot have much or any DHT, especially if your T is zero.

I have a 9 month and a 6 month program---but not worth while mentioning until I get out that far--but concerns the use of T. One Doc is on board, one Doc is not--and wants me, at one of those time lines above to visit John Hopkins, with someone within Dr. Demeade's T research group.

I do the 28 day blood tests because of the pathology---we do not want to let the genie out of the bottle, and if out---- not to get far enough out, that it can be captured quickly, and put back in and stoppered.

Nalakrats

2 likes
Reply

My oncologist at MD Anderson says I am on Lupron for the rest of my life, no matter what. I've had no hot flashes. My PSA is currently .04, and has never been higher than 7. My Gleason is 9. I am now through the first of three infusions with Provenge. So far, no side effects at all. I had my prostate taken out 2-1/2 years ago. I have an enlarged and growing lymph node in my pelvic area, but so far no metastasis to my bones or any organs. I'm surprised to hear several of you talking about a vacation from Lupron. Do some oncologists recommend that? By the way, this is a GREAT site! Thanks to all of you for your positive attitudes and for sharing your own experiences!

1 like
Reply

I have run into the same conundrum, I was DX 4 years ago, G9, stage 4 multiple bone and lymph mets. Have been on triple ADT - Lupron, Xtandi, Avodart. Had prostate and several nodes radiated or "debulked" early on, chemo per CHAARTED after that. Axumin scans have been clear, PSA <.006. Dr Myers had me staying the course, he had pretty strict guidelines for complete remission. Other oncos lean the same way - saying if it works why mess with it? SEs can be pretty rough after a while though, and I've been given the option to stop, but I have a fear that if I've beaten this thing into dormancy why take my foot off its throat? I'm afraid if I do that it will come back worse then ever - as Dr. Sartor puts it "we'd have a tiger by the tail". For me, I'm gonna stay the course for now.

One more cast...

Ed

2 likes
Reply

Stickingaround, you write non-standard care..... is it non-standard, in your mind, because you elected not to have chemotherapy and now are thinking about an ADT holiday?

Please have a discussion with your Medical Oncologist on micro-metastases. What do I mean with this term? Minute metastatic cells traveling in your vascular and lymphatic system that will eventually find a home and multiple. Since you are Stage 4 with metastatic lesions on the bone and maybe elsewhere, - of course, you really don't know unless you have a biopsy which runs the risks of metastatic cells escaping - there is only one way known to kill these little bastards.........

I admit that I am biased and advocate for very aggressive treatment of advanced prostate cancer.

I did not make a career in the medical field, however, I did read everything which was available when my Primary Treatment, in less than a year, failed.

Fourteen years years ago I was non-standard and also most fortunate to hook up with a Research Medical Oncologist and Professor and underwent a chemotherapy - hormone therapy trial. The hypothesis for the trial was, since intervention with chemotherapy has recently shown positive results in the treatment of metastatic prostate cancer, then in this setting, would it not be better to bear treatment earlier rather, while the body is strong and the tumor burden minimal, than later when the body is weakened and the tumor burden has increased.

Me? Eight years ago, I was able to stop all medication for prostate cancer and took my last Lupron injection (after six years); and my PSA remains undetectable.

I wish the best in finding the right treatment for you in stopping metastatic prostate cancer.

Gourd Dancer

2 likes
Reply

Who and where was this Oncologist located? Is he still treating patients with this combo?

1 like
Reply

He is currently not in Clinic due to a health issue; however, he is still teaching and doing research. There is a fill in. Same staff. Worth a call.

memorialhermann.org/doctors...

GD

Reply

Hi Gourd, thanks again for the detailed advice, your thoughts and your story. I guess the reason I am considering this non standard is that the standard of care, according to my chemical onco is to treat with ADT until that stops working. i was able to have the RP, when at first it was inoperable due to the size and spread (according to two surgeons at two different facilities). I ended up sticking with ADT, have a meeting with a radiologist next week and am working to get on chemo!

Thank you again!

Reply

Keep at it. What most call Non-standard to me is normal. Dr. a has treated over 600 the same way, you might enter into a discussion of micro-metastases with him and see what he thinks. You can research it, but a good layman' defination is the unseen mutated cells traveling in the vascular and lymphatic systems looking for a place to land and grow. Thereby spreading a PCa to distant locations. And, ADT is not going to kill them. Second, the possibility of an Androgen-dependent and Androgen-independent clone co-existing so that when ADT fails, the clone is ready to go as a micro-metastatic disease. And they way to kill these little buggers is through chemo while the body is strong and the tumor burden minimal. Of course, this is the basic hypothesis of my research mo. Like I said, many don't but the premise, but it is the reason that I jumped on chemo as soon as mets appeared and roughly seven weeks after my first Lupron injection. I know I am an exception to the rule, but very few have had chem that early. The name of the study, "Trial of Chemotherapy plus Hormonal Therapy as Initial Treatment for Unresesectable Metastatic Adenocarcinoma of the Prostate". First investigators were Drs. Robert J Amato and Habi Henary; The Methodist Hospital Research Institute/Genitourinary Program, Houston, Texas. SubSequent updates and additional investigators added.

Good. Maybe your guy won't throw you out the door, and read and ask the investigations. Warning. I had a staff Medical Oncologist at a local hospital during a knee replacement in 2008 tell me that it would never work. I was four post treatment at the time.

Good Luck,

GD

Reply

Thank you Gourd. I love the process and your hypothesis only makes sense. My surgeon is pretty agressive and my MO is completely open to different ideas. i am absolutely going in the chemo direction. I am in a lot better shape physically now than i was 14 months ago at dx. Thanks for the insight, guidance and inspiration!

Reply

You may also like...