My journey wth metastasized PCa

[Mpmeyers1]

I am starting chemo next week after Zytiga and Xtandi failed to lower my PSA. My physical done last year showed a PSA at 3.1 and 7 months later the PSA was at 39.1 and i was diagnosed with met PCa. I looked back at 5 years of PSA readings, and each time the PSA was increasing. Talking to my internist he said the rate of change of the PSA did not concern him, but as you can see I was on a trajectory that was going to have a reading greater than 4. That reading would have concerned him. To my fellow community members, i am telling everyone I know that they should keep track of the rate of change of the PSA, and maybe, they can nib this damn disease in the bud.

[vandy69]

Good Sunday Morning Mpmeyers1,

Please provide alittle more detail-what was Gleason from biopsy and age. If I understand, within 12 months you have failed both Zytiga and Xtandi?

Any scans, and what were results?

What chemo drugs are being proposed?

I am almost six years into this battle (please see bio for complete treatment history).

From your brief account, I hope that you are being treated by a Med Onc who specializes in PCa. Aggressive cancer requires aggressive treatment and quality of care matters.

Best wishes. Never Give In.

Mark, Atlanta

[Mpmeyers1 in reply to vandy69]

I just had my 80th birthday. CT scan shows spots in pelvic, collarbone, lower spine. No organs at this time. I am under care of medical oncologist now once Zytiga and Xtandi failed and starting taxotere on Tuesday. I live in Dallas, TX so no problem getting in to see a MO. T he one I chose is at UT Southwestern, one of the best teaching hospitals with the latest clinical trials if need be. I was diagnosed with PCa this past February and now it is July and starting chemo

[DenDoc]

I totally agree with Mark. You need to move on from an internist and a urologist to a medical oncologist, preferably one with expertise in urologic cancers. If none in your area, you can go to a specialty center for a second opinion and have that specialist share his views with your local medical oncologist. Not everyone is near a big center of excellence but the need to share expertise is real and non-competitive.

Suggest posting a summary in your profile on this site. The followers here are very knowledgeable if they have the data.

Bob, Denver

[westerville]

I've been on Xtandi for awhile now . My PSA is starting to rise more now . Well now that Dr. Myers retired I have just used my VA oncologist . At least he got me The Xtandi at no cost . He said if he puts me on Zytiga and that fails then it's Taxotere Chemotherapy . So he wants to hold of for as long as we can . My trouble is my PSA has never expressed itself with my diagnosis . I was 1.4 at surgery with a Gleason of 4/5 . Now the last three PSA's have been 0.17 0.28 0.43 December ,March, and June . No one but Dr. Myers understood my PSA and tested for a lot more . The VA oncologist said all those tests are unnecessary . Really don't have the funds to travel to either coast . And Dr. Oliver Sartor isn't taking on new patients . Living in the Midwest isn't good for patients with advance cancer .

[E2-Guy in reply to westerville]

Since your PSA is still relatively low, you might try using tE2 (transdermal estradiol gel). I just started using it according to Richard Wassersug, PhD's suggestion. After nine weeks my PSA declined by 31% even though my T level is still high and my E2 level is very low. I have increased the dosage by about 50% in hopes that my numbers will adjust accordingly. The ONLY side effects that I am experiencing are minimal gynecomastia and nipple sensitivity. Below are my more recent PSA results...I have also posted more detailed info regarding my PCa journey if you're interested. Where in the Midwest are you?

Wishing you the best! Ron

7/18/2017 - 1.30 [pre sacral excision]

9/11/2017 - 0.54 [post sacral excision]

10/11/2017 - 0.57

11/20/2017 - 0.657

12/29/2017 - 0.641

4/1/2018 - 0.71

6/19/2018 - 0.49

[CaregiverWife]

Totally agree with Mark and Bob. I urge you to not wait! Get to a Med Onc who SPECIALIZES in PCa. Our Med Onc who was very nice and we trusted him, did not specialize. By the time we went to one who did, it was too late and he lost the battle two weeks later on 12/6/17. Go now! Prayers for a good outcome for you.

[Mpmeyers1 in reply to CaregiverWife]

So sorry to hear of your loss. As soon as xtandi didn’t work, I contacted a MO and this Tuesday I start chemo with taxotere.

[PLASTICMAN in reply to Mpmeyers1]

Xtandi stopped working for me after 4 months so quit on the 5th and started chemo with Docetaxel (taxotere) and Prednisone (every 21 days) with PSA at 7.05. after 3 sessions. PSA dropped to 6.95 (no decimal point error)....pretty much nothing! Now doing two more sessions with fourth on last june 29 and next one in 28 days (July 27). After that, at the appropriate time, will test for PSA and do a bone scan again to compare with one done in April which showed quite a few dark spots on hip, spine, ribs and so on. Feel weak, fatigue ever-present, pain controlled with Tramadol and Diclofenac (which have their side.effects). Am 78, still quite lucid (I think), drive, work on computer, brain thinks I'm 26 or thereabouts. Don't know what next step will be if chemo doesn't work better than it has up till now. When I asked doc about Zytiga, she said it's pretty much like Xtandi ($7500 a month?).

[sadsister in reply to CaregiverWife]

I'm so sorry for your loss. I tried to get my 49-year old brother to see one that specializes in PC. He liked and trusted this oncologist because he had him 30 years ago for Hodgkins. He died June 19, 2018 just 4 1/2 months after being diagnosed. I'm not blaming the doc though because it was advanced and Adenocarcinoma but I still wonder about a few things. I miss my brother so much! I hope you are doing okay.

[CaregiverWife in reply to sadsister]

I’m so sorry your brother lost his fight also - and so young. I too have “what if” moments but I try to keep busy so my mind doesn’t wander to what could have been. Wishing you peace and comfort as you grieve for your brother.

[sadsister in reply to CaregiverWife]

Thank you. 😊

[E2-Guy]

Some urologists are now becoming concerned when patients' PSAs reach 2.5, especially where family PCa history is significant. My family's history is terrible and my brother had his RP when his PSA was 2.2. Unfortunately I waited until mine was 5.3 before I had a biopsy and my surgeon surmised that I had PCa for AT LEAST FIVE YEARS.

[tallguy2 in reply to E2-Guy]

I agree 100% with you. We followed protocol and waited until my PSA was 4.0, did the biopsy, and "wham," Gleason was 9 and after RP PC was already outside the prostate. Serious research is needed to intercept PC before it extends beyond the prostate!

[j-o-h-n]

"i am telling everyone I know that they should keep track of the rate of change of the PSA, and maybe, they can nib this damn disease in the bud."

Good Advice to all men... I give them the same advice (GMTA). I also tell them to be concerned if PSA spikes between test (and to keep a hard copy of each test).

Good Luck and Good Health.

j-o-h-n Sunday 07/08/2018 2:10 PM

[Stegosaurus37]

I had the opposite. Went into taxotere right after it was determined that lupron had failed and I was ADT resistant. Did six infusions of taxotere which drove the PSA way down. Now I'm on Xtandi and it's pushed it down further. I'm curious why they did it the reverse from what I got.

[Mpmeyers1 in reply to Stegosaurus37]

I am told that there is a gene, AR-V7 that If positive Zytiga and Xtandi would not work. I was not, however, tested for this gene but this comes from 2 doctors at MD Anderson Hospital in Houston.

[Mpmeyers1 in reply to Stegosaurus37]

Steg, the suggested therapy was the drug Zytiga. I had this confirmed with the head of urology at UT Southwestern. At his suggestion, he said i should meet with an MO and the MO agreed that chemo was not the choice therapy at this time. After Zytiga and Xtandi failed to lower the PSA, the urologist stepped aside and said it is time for chemo. I am still getting a Lupron shot once every 3 months plus Xgeva from urologist. First session with taxotere after 2 days, i am not having any side affects. PSA will be checked in 3 weeks.

[Hidden]

My PSA was a modest 2.7 but a DRE indicated a tumor and off I went for a biopsy. Gleason 8. PSA is one thing, but the dreaded DRE is another diagnostic tool that some men, and even doctors, shy away from for understandable, if misguided, reasons.

[E2-Guy in reply to Hidden]

I never thought that the DRE was a 'big deal'; however, some guys do fine it somewhat uncomfortable. The one that brings back memories was a PCa screening in Dallas that was executed by two females, an older nurse and her very young, attractive trainee. Obviously they both did the 'number' on me and spent time discussing what they were feeling while they were in there! So happy that I don't have a prostate anymore!

[Hidden]

Based on my brother's experience, I hope you are in good health to handle the chemo, and your cancer is not so aggressive, that you become too weak to handle it.

Similarly, his PSA was less than 2.0 in Sept 2019. During the pandemic he was unable to do his usual physical a year later- Sept 2020. Five months later in April 2021 his PSA was 40. Indeed it seems that PSA can rise rapidly , if unchecked.

I would further venture to say that anyone with a PSA over 4 and history of it rising gradually should be testing it every 6 months; especially if there is a history of PCa. It is a chance to take early action, as PCa metastasizes so quickly; and in your case the usual drugs are proving ineffective.

This is such a wretched disease that when it proves to be very aggressive, the earlier you start chemo the better chance you may have to extend life. One would just have to convince the doctor that the periodic increases need immediate action.

I hope more studies are done on cases like this.