The Gleason 9 and 10 Crew - Welcome and how ya doin'? (Part 4, continued thread)

Good to know, Scott! Some day I may need to know but we have to weigh the costs, timing, etc., I guess?

Hope your psa continues downward! I hope the longer we can stay alive, the closer we will be to a cure? Or as my wife says, who much smarter than me, "hope to die with cancer but not due to cancer!"

Well, we think the Cyberknife treatment went well but in the interim, my T jumped 35% (244 to 331) & my PSA went from 0.4 to 7.3. Had the more precise PET Scan & I now have numerous mets. in the spine, ribs & pelvic region. Also, have a pretty large one on T-4, which is higher than Cyberknifed T-11. So obviously I am no more Oligometastatic. Meeting with the RO, in 1 week, to see what to do with the T-4?

MO put me on Lupron + Apalutamide for 30 days, with the intent to stay on forever, possibly? I went 1.5 yrs. after Lupron, but that has now changed, especially with the higher T. My copay will be $3,000 per month, on Apalutamide.

Wondering if should just go with Lupron, since I think the PC still responds to T, until it doesn't work, w/o the Apalutamide? Any thoughts would be appreciated!

John - tough hand you have been dealt. Assuming you are on Medicare with a drug plan, you will reach catastrophic levels after a couple of months then pay 5% copay on all your meds. The annual total works out to $10-12K which still sucks but not $36K.

Talk with your oncologist and they may be able to help with assistance programs. You can also try Jansen through their website info:
https://www.janssencarepath.com/patient/erleada/cost-support?source=janssenprescriptionassistance

Also ask your oncologist about alternatives if you can’t cover the cost. There are some older generics that are inexpensive.

Thanks, Duck2. I am getting the first month free and that is it. My Doc. is approaching Janssen for any discounts.

What are your stats., how long have you been on it, SE's, if you don't mind?

Add me to the 4+5 Gleason 9 group. Thanks everyone for sharing experiences.....support groups MATTER!

Post Edited (WayneTX) : 4/27/2022 11:36:54 AM (GMT-6)

Here is my RO: Dr. Bedwinek - https://www.ssmhealth.com/find-a-doctor/doctor-details/john-m-bedwinek-md?utm_id=sys-listings-1&linksource=sys_listing_links-gmb_listing&y_source=1_MjMyNTg4NTEtNzE1LWxvY2F0aW9uLndlYnNpdGU%3D#read-more

and my MO: Dr. Beattie - https://www.ssmhealth.com/find-a-doctor/doctor-details/james-v-beattie-do?utm_id=sys-listings-1&linksource=sys_listing_links-gmb_listing&y_source=1_MjMyNTg1NDYtNzE1LWxvY2F0aW9uLndlYnNpdGU%3D#read-more

I see both Doctors at the SSM Lake St. Louis Facility, on I70, a few miles East of I64/40..
I live in Troy, MO., so it is convenient for me.

Wayne - it does not matter after radiation therapy since the prostate was not removed. The general radiation treatment failure criteria is +2.0 above the lowest value monitored so hundredths have little diagnostic value other than to worry you. There is probably more variance between than the two different testing labs than anything to do with the lower limits. Almost any test will give you the data needed to know if you have a problem after primary radiation treatment. No worries until it’s time.

john4803 said...
Thanks, Duck2. I am getting the first month free and that is it. My Doc. is approaching Janssen for any discounts.

What are your stats., how long have you been on it, SE's, if you don't mind?

I am not on the medication, I was illustrating the cost with the lost price D plan out there.

John,
That's a great drop. The meds are working and I think you can expect them to keep working for a long time.

Not sure whether to ask for feedback here or post a new thread - but I'll start here. I'm moving to Medicare July 1 (retiring July 8). Decided to go with an Advantage PPO plan (I'm in San Diego area so I'm comfortable with Advantage plans having good networks).

I did use UCSD for all my treatments -- at the current time I am only seeing my medical oncologist once a year and doing six month PSA testing. I've been going to Scripps Clinic for all non cancer care the last twenty or more years. I did decide to go to UCSD in 2018 when diagnosed because of viewed (rightly or wrongly) as the better cancer center in this area.

Scripps is now affiliated as an MD Anderson satellite, and I'm trying to decide if switching to a Scripps MO would be foolish.

I chose a well regarded Medicare Advantage PPO that has Scripps as in network and UCSD as out-of-network. Thinking I might switch to Scripps this year, in December 2021 I had an ultrasensitive PSA done a week apart at both UCSD and Scripps so that if there were significant lab differences in test results, I'd find out then. UCSD reported 0.14 and Scripps reported 0.13.

Switching to Scripps will be less $ being in-network vs out-of-network - but is going to be more of a pain choosing a new MO. I like my UCSD MO, but with my high deductible plan last year (which I've used chosen the last eight years while maxing out HSA contributions), it somehow chafes me a bit when every six month visit in 2019 was about $600 for the doctor "how's it going" visit, the PSA test, and the ridiculous facility fee for the impressive medical campus.

So any feedback on switching UCSD to Scripps/MD Anderson?

P.S> And still feeling blessed to be doing what I consider to be very well - though I'd be happy if the small PSA rise would level off soon (UCSD MO said not to be concerned at this point, though when I asked at last visit if there was a number where there would be more concern, really didn't get any answer other than we will just test at 6 months for now).

CAdogs - New post will get you some answers on Medicare. Most will recommend original Medicare + Supplement vs. Advantage plans if you have cancer or other serious med conditions.

Husband, age 50, just diagnosed Gleason 10, looking for input. PSA 146 at diagnosis 7/2022 (was a 2 when last tested 30 months before). 14 of 14 cores positive, most with 100% and all grade 5. Tumor is “alarmingly large” they said and affixed to the rectum and pelvic floor. PSMA pet shows spread to pelvic lymph node, seminal vesicles, extensive spread to nearby tissues and perineal invasion. No bone Mets seen. Stage is T4bN1M0. We were at Duke first and they started him on Orgoyvx, Zytiga/prednisone and plan to do external beam radiation if tumor shrinks from the meds. They say surgery isn’t an option.

Got second opinion at Mayo. They say his case is very high risk (according to NCCN guidelines it is) and because of spread to lymph node and seminal vesicles he needs to do chemo with the orgoyvx and Zytiga and then high dose brachytherapy and external beam radiation (and perhaps surgery). Problem with that plan is they said we have to find an oncologist locally to administer the chemo. We asked Duke and John’s Hopkins and they both say no because “he isn’t technically even low volume and chemo has only been shown to give benefit in high volume patients”. But when we ask for the prognosis with their plan (Duke and Hopkins) it’s not great. I’m fact it’s a really bad gut punch.

If not for the physical we wouldn’t know my high endurance athlete of a husband was even sick. But we are extremely concerned about how this went from a 2 to a 146 so quickly, the extremely large tumor size, the spread, and also the Gleason 10 very high risk case. Struggling to find someone to do the chemo and “triple therapy” and overall feeling pretty defeated after we were told yesterday that the 5 year survival rates “are what they are” and the Hopkins doctor said his plan still has a 40% chance of failure.

Looking for input and also to hear some success stories of Gleason 10 fighters. Thanks