need some insight into a treatment pl... - Advanced Prostate...

Advanced Prostate Cancer

21,055 members26,260 posts

need some insight into a treatment plan by two separate oncologists

Costarica1961 profile image
7 Replies

Looking for the forums insight. Diagnosed with pc on 16th of June 2016 4+5 9 Gleason. My psa was 12.3 I am now 57. The urologist gave me a couple years. I chose a radical robotic prostectomy. Aug 31st. My Gleason was downgraded to a 7 Gleason 4+3 My psa rose from 0.01 to 0.37 8n several months I was on lupron throughout, up until surgery, doctor recommends salvage radiation as she indicated prior may be necessary. 37 sessions completed direct to prostate bed. My psa dropped to undetectable again, only to jump in 3 months to 0.9. Went back on lupron, from a three month break. Finally I found a oncologist in my area, previously by Skype quarterly. Primarily with a wait and see approach. The current oncologist has a more proactive approach, by putting on zytiga with pres ,despite no evidence of Mets. Two screenings since surgery. Side effects on zytiga have been rough. But psa dropped again. To undetectable the Skype oncologist disagrees with in my area oncologist on treatment approach. He still believes in the wait and see approach more from a, he states you have no mets,and your psa is still low, why take a later treatment off the table now and endure the side effects. Am I on a sensible path. The side effects are manageable although weight gain fatigue and nausea.not as bad after two months on. Psa is still undtectable. Still on quarterly Lupton. Am I taking future treatment off the table. With zytiga. With no Mets or is it smart by keeping Mets away. Dealing with the side effects thanks in advance.

Written by
Costarica1961 profile image
Costarica1961
To view profiles and participate in discussions please or .
Read more about...
7 Replies
pjoshea13 profile image
pjoshea13

Hi Costarica,

My inclination since diagnosis has be to delay treatments that are merely palliative & have a relatively short mean-time-to-failure.

But you are on Lupron, which essentially targets the androgen receptor [AR]. One escape path for the cancer is to adapt to using adrenal hormones. Zytiga blocks that, so you might get more milage out of Lupron & Zytiga together, rather than sequentially.

I would also think of throwing in a lipophilic statin, to make it harder for PCa to make androgens from cholesterol. & also Avodart, to prevent backdoor generation of DHT.

Best, -Patrick

Costarica1961 profile image
Costarica1961 in reply to pjoshea13

I will suggest both to my oncologist. Thank you

Tall_Allen profile image
Tall_Allen

You undoubtedly do have mets, they are just to small to see because your hormone therapy has been so effective at shrinking them. We have just seen two trials (for apaalutamide and for Xtandi) where men with rising PSA who were not DETECTABLY metastatic had improved progression-free survival by using the advanced hormonals - there's no reason to believe that Zytiga would not confer a similar benefit.

I do not believe in your oncologist's premise that one "uses up" the therapies by using them earlier. In fact, when used earlier they have greater survival benefit than when used later; Reducing the cancer load has a greater impact than the selective evolutionary pressure. Plus, there will always be new therapies when you are ready for them.

MichaelDD profile image
MichaelDD

Costarica …. This look familiar? We are almost identical in our path. I have yet to start on

any hormonal therapy . I was in a massive car accident in my late 30’s. Had 5 spinal fusions to

get me back on my feet. Did well. As life goes 3 days before my 50th I was diagnosed with Stage 2 breast cancer. I had a radical mastectomy – 4 months of chemo then 5 years of Tamoxifen. I had NO indicators (other than huge fatigue) of PC. Fatigue is even worse now. Because of bone aches from what is arthritis (they think) my Oncologist is holding back on HT. My meeting was with him this early week (July 9th). He doesn’t want pain from the therapy to make me feel worse than I am. Numbness and bone ache is big for me with no HT. He told me the same thing Tall Allen said “not detectably metastatic” – but its “there”. My doubling is just shy of 4 months , but the low PSA is the twist. I will be on HT most likely by end of the year. Told that 5 is his max. He is conferring with UCSF oncologists also. Asked for and sent to insurance Axumin scan request. Waiting now for approval now.

Diagnosed March 2016 (age 62) Gleason 4+4 (8)

Bone scan April 2017 – negative

June 2016 RP Davinci robotic removal

August 2016 first PSA test after RP 0.024

October 2016 PSA test 0.042

October 2016 to December 2016 39 sessions of radiation.

January 2017 PSA after radiation 0.080

(Told I have “Persistent PSA”)

February 2017 PSA test 0.092

May 2017 PSA test 0.191

July 2017 PSA test 0.230

Bone scan September 2017 – negative

October 2017 PSA test 0.320

January 2018 PSA test 0.600

Bone Scan January 2018- negative

April 2018 PSA test 0.720

July 2018 PSA test 1.35

July 2018 (currently awaiting approval) ordered Axumin scan.

Hoping all the best for you.... I will be watching for your progress.

Michael

Costarica1961 profile image
Costarica1961 in reply to MichaelDD

Thank you Michael, our numbers are similar and sequence of pc. Although you were more detailed, I I summarized mine. Thank you look forward to hearing your progress.

I wish you the best. First, I will tell you that my treatment 14 years ago is not the normal standard of care available to most with this dreaded disease. I can only offer several suggestions. First, research micro-metastates and then enter into a discuss about your possibility of have micro-metastates. During the discussion ask, if it is possible that I have it, how do you kill it before they colonize and grow?

Second, also enter a discussion around, is it not better to attack the cancer while my body is strong and the tumor burden minimal or save up for a rainy day.

Third, do not fear chemotherapy and recognize that all chemotherapy drugs are equal.

Fourth, search Gourd Dancer in this group or Google to see the results of my trial.

I advocate aggressive treatment and make no apologies for my stance. The decision is yours and your Medical Oncologist. Hopefully he is a researcher/professor and on top of his game. A real expert on Prostate Cancer. Me, at 57, I just could not accept pallative treatment hoping for quality longevity. Fourteen years ago a man with metastatic prostate cancer according to most at 2-4 years, maybe five. Today, great strides have been made and the could be easily be double. Triple or quadruple in some cases.

I am not a supplement taking or alternative medicine adherent. Yet, ...

Gourd Dancer

Dostoevsky profile image
Dostoevsky

Yes sir ... following a very similar regime, but no surgery. Metastatic satellites would make it a mute-point. Zitiga daily @1000 mgs ... 10 of prednisone for 2 1/2 flights around our sun. Stay close to these boys here. Best blessings tj

You may also like...

Oligometastatic PCa - My New Treatment Plan

and been on Lupron since diagnosis in May 2015 at age 53. PSA dropped to undetectable for a year...

I need oncologist in Chattanooga.

2016. Gleason 8/9. Luckily still not castrate resistant. Took ADT vacation in 2018. PSA...

Treatment Plan- I Need Your Ideas...

also gets a Zoladex injection every three months. His PSA dropped from 24 to 0.0876 in the......

Hoping for some reassurance and insight

pelvis and a pelvic thyroid, gleason score 4+5=9 and PSA 68. His first PSA check was in December...

Urologist or Oncologist for 2nd opinion and treatment

several suspicious areas. He was supposed to get an MRI to confirm the suspicious bone areas, but...