Back to ADT

[PabloK]

My PSA continues to climb - after radiation and two years of lupron/zytiga ending in Jan 21- my PSA is going back up - it was 0.1 in Sept 21 then to 0.2 in March 22, to 0.4 in Sept 22 and now 0.6 in October.

Once i hit 0.4 - went to Mayo to get established with them - because it became evident that it was a matter of time before i needed active treatment and i wanted a team that actually talked with each other.

I have met with the team and had a PSMA/CAT scan in October - it come back clean - i would estimate that my PSA was 0.5 at the time.

I was hoping that a target would have been found so it could be treated directly with radiation. I meet with the urologist next Wednesday to discuss my situation so i was hoping to get some feedback from the group on next steps before the meeting-

i'm thinking that the two possible approaches are to 1) watch PSA and do another PSMA/Cat scan to find the tumor when it passes the detection threshold or 2) start back on ADT (MO said just Lurpon and not zytiga) and start intermittent ADT with periodic PSMA/CAT scans to see if targets appear.

In my heart I know its probably option 2 because of the rate of rise- but its hard to go back to ADT - i did ok on it the first time but it isn't easy - as you well know.

If/when i go back on ADT - is anyone getting insurance to cover the oral ADT - the recent articles on the obscene cost of Lupron were implying that it could be an option.

thanks in advance -

[Tall_Allen]

Here's another option:

prostatecancer.news/2022/09...

I don't know if playing whack-a-mole with metastases has any value, but I know ADT does.

[PabloK in reply to Tall_Allen]

thanks - i'll bring this along to my meeting - sounds very encouraging. I think my MO at Mayo may have mentioned this - but i will certainly bring it up again

[Tall_Allen in reply to PabloK]

I've found that if you want a doctor's reaction, your best bet is to email him the peer-reviewed study before the meeting, so that he has a chance to review it.

[Timfc]

Insurance does cover it, but my copay for Orgovyx is $998 per month. I applied for, and received a grant covering my copay for several months. However, my doctor has now added Apalutamide with a copay of $600 per month, so the grant will be gone at the end of this year. I am applying for another grant. For me, Orgovyx is slightly more pleasant than Eligard was, but Apalutamide has negated that advantage. I will find out in 2 weeks if the Apalutamide has affected my previously good bloodwork.

[PabloK in reply to Timfc]

are you on medicare? do you think that the $2000/year cap that goes into effect next year will cover these drugs??

[Timfc in reply to PabloK]

I am on Medicare with a supplement and part D for drugs. I don't know what the $2000 cap will do. Also, I am in the donut hole now and I don't even understand that.

[Huzzah1 in reply to PabloK]

The $2,000 cap on medications currently does not take effect until 2025

[JamesAtlanta in reply to Timfc]

I’m taking Orgovyx. I am on Medicare and have a supplemental policy with Aetna. My co-pay for Orgovyx is $50/month.

[Hidden in reply to JamesAtlanta]

Also taking Orgovyx but copay is $125. Are you happy with Aetna? Using Cigna at the moment.

[treedown]

I am literally sitting at Quest Labs for the next test to determine if I will be in the same boat. I'll watch your decision so far my MO pushed off my last PSA of .5 as too low to be actionable and pushed off scans as well. This test could set that in motion. If so you made it longer than me off ADT I am just past 1 year.

Ass an add my MO said the expectation was that my PSA would rise after stopping ADT so I have been working under the hope that it could still go down (which it did once already) or plateau and that a rise was not the only scenario. Maybe I am being naive, or hopeful. I wondered if false hope was better than no hope early on and after some research I found it is.

[PabloK in reply to treedown]

just had my meeting with Mayo - my new game plan is to wait until i hit a PSA of 4 and then start intermittent ADT. This is not ruling out another PSMA/CAT scan once it is over 2 with the hope that we can identify the tumor and zap it. I met with the urologist and he thought we might consider a PSMA/MRI - to give better resolution. I'm not sure if insurance would go for that. The uro is a surgeon so it may be something that surgeons are more interested in.

My doubling time is around 5 to 6 months so I really just want to get thru xmas w/o ADT - my daughter is coming home from Copenhagen and wants to go hiking with me so i want to have the strength/endurance to do that.

shalom

[treedown in reply to PabloK]

Thanks so much for replying. I expect to hit 2 at the end of December if all things remain the same (DT is approx 1.3 months). I have been trying to decide if I should wait until the new year to start scans purely for monetary reasons and that would put me closer to 3. I am also hoping IADT will be an option but can't do anything until scans. Of course I can't stop thinking about so I may take the advice of another member and ask for bone and CT now, PET/CT in Jan after my MO visit and these scans come back. A nice long hike sounds like a great idea to clear my head.

Enjoy your time with your daughter.

[tango65]

If I were in your situation I would wait until the PSA is around 1 and repeat the PSMA PET/CT. I f there were metastases, I would try to get Lu 177 PSMA treatment in a clinical trial in the USA or abroad if finacially possible.

This is not the standard of care, but when the Lu 177 PSMA treatment stops working , the cancer will still be castration sensitive and it could easily be controlled with ADT plus any of the new anti androgens/chemo or it could be rechallenged with other Lu 177 PSMA treatments.

When people in the Aggarwal's study had a PSA progression, the cancer had already become castration resistant which is the lethal form of PC.

[NecessarilySo]

Been there, done that, (RT, stage 4, vacation). I took a four-year vacation from Lupron 2016-2020 during which my PSA rose to 35 and scans began to show possibilities of mets as well as some definite mets. I resumed Lupron with Xtandi and my PSA dropped (thud) to <0.1. Without treatment, PSA will follow a formula so you can project it to some extent. But your doubling time was six months for a year and seems to have recently accelerated to two months or less, (indicating more than one met site?) Best to keep an eye on PSA, monthly if possible. What I'm trying to say is that we should not feel urgency in treatment if the only problem is PSA .5 after RT. Let it double a few times and then whack it with Lupron. I'm not a doctor and I suppose few doctors would say that, but I'm just giving you my personal take. As for Lupron cost, for me it's covered by insurance. I tried Orgavyx pills for a couple of months (also free) and Xtandi for awhile but stopped them due to my hypertension/heart/epilepsy concerns which take front seat So I'm on quarterly Lupron. My Gleason was 7 so that might be significantly different from your 9. I treat possible mets with my own heat therapy and eat lots of lycopenes, daily. So, in my case my PC seems under control and I worry about other things.

[reconjj in reply to NecessarilySo]

Hello , can you share with us your Heat Therapy ? Thanks

[NecessarilySo in reply to reconjj]

I have been using heat on my sore spots for several years now/ I had rad therapy in 2008, and my prostate cancer went metastatic in 2012. I have had many sore spots on my back and neck, also skull metastases, which I have used heat to control and eliminate since about 2016. I use several methods. I used very hot showers on some. I simply stand under a shower turned up to about 110 degrees F, and I lately count out 100 seconds. I got rid of the skull mets in 2017 using about 120 degrees for 30 seconds. I got rid of a few neck lymph nodes more recently with 120 degrees for about 60 seconds. Other back lymph nodes I used a 2.5 pound steel weight which I heated by putting in a saucepan with water, bringing to a boil, then allowing to cool to the 140 degree range, then putting it on the floor and lying on it placed on sore spots, with cloth buffers, tryng to avoid scalding as it slowly cools down to 110-120 range. I am down to only two sore spots, which I treat about once a month, (when they cause pain), with the shower method. One is in my spine between shoulder blades, and the other is on a left rib. The deeper into bones, it seems, the longer it takes to get rid of, but they are slowly reducing. Occasionally I have heated the weight in sunshine. Importantly, I use thermometers to determine temperature, Over the years I have developed a feel for what 110 degrees F is like in the shower. Shower is the most convenient. I also use a portable sauna, using 30 minutes at 130 degrees, but lately I stopped doing that. Localizing the heat seems to be the most successful. I am always careful not to scald or burn myself. Shower temperature Is controlled by the valve of course, and also at the water heater setting below normal. Full on shower temperature is about 120 F. I back it off to about 110. Also, electric heating pads work well. They need cloth buffer, and can get up to 150, so be carefull with that. I do not have pelvic mets but I suppose hot tub 110 F would work on them.

As for lycopenes I try to drink 1/4 cup of V8 juice low sodium each morning and I eat some lycopene rich foods frequently, like catsup, barbecue sauce, taco sauce, thousand island dressing, pasta sauce, etc, and I mix lycopene powder from 20 mg tablets once or twice a day. My mets are gradually subsiding but have not gone away completely. Yet.

P.S. All cancer cells die at 106 degrees F. 106 at surface will not be as hot below skin. I describe 110 degrees as very uncomfortable, 120 degrees as barely doable, and over that doable for short periods, but maybe scalding (skin turns red for awhile).

[CAMPSOUPS in reply to NecessarilySo]

What year were your scans that showed skull and other bone mets?

[NecessarilySo in reply to CAMPSOUPS]

Skull mets showed in 2016 with a PT scan with fusion. They went away after shower treatment and upon bone metastasis xray showed nothing. Some skull lymph nodes caused headaches which I eliminated with hot showers in 2020. Bone mets included tailbone in 2012 which went away with Lupron and intense lycopenes within a month. Rib met in 2016 was missed by radiologist but I saw it myself on scan, and nevertheless it is now much reduced, almost unnoticeable today. RO asked for a scan-directed needle biopsy on the rib met but that never happened because it was not visible or noticed by radiologist. Radiologists do great work but sometimes it is like finding a needle in a haystack. Lately I have focused heat treatment (hot showers and heating pad) on it and it is barely detectable but I have had it for six years. I tried magnets for awhile and they worked partially, dividing it into two parts, but not completely, in 2020. Magnets are tricky therapy I would not recommend.

[CAMPSOUPS in reply to NecessarilySo]

Any medical treatment you had is that which diminished mets. Imagination is dangerous especially when spread among cancer victims.

There is no such thing as a skull lymph node by the way.

[NecessarilySo in reply to CAMPSOUPS]

I had Lupron intermittently 2012 until 2016, then continuous since 2020. Sore spots came and went between doctor visits. Pain only occurred if I avoided lycopenes. So the doc always asked " Feeling any pain?" I usually answered "No." (except the rib lesion in 2016. There was a sore spot behind my left ear in 2020 that would cease after hot showers, but it returned several times, now no longer exists. Might have been a skull lesion or met. Couldn't sleep due to the headaches so I heat-treated them as soon as they came. Hot showers stopped the headaches and touch-pains immediately, usually for a week or more.

kenhub.com/en/library/anato...

head lymph nodes behind ear

[Shamrock46]

My husband and I are both on Medicare with BCBS supplement and Humana for Rx. We have never had to pay anything for Lupron.

[MateoBeach]

Pablo, if you have a really hard time with ADT side effects (as I have) another option would be bicalutamide 50 mg with dutasteride 1.0 mg instead of Lupron or similar. With that you still have testosterone, actually high, but receptors are blocked and dutasteride prevents conversion to DHT. Net effect is similar for controlling PC growth with much better side effect profile. Eventually it will fail and PSA will rise again, but likely will still be hormone sensitive and amenable to further options. Personally I got 4.5 good years with this combo.

Another question: when you had your original IMRT to the prostate did they also treat the full pelvic lymph node fields? That is now the best SOC for SRT. Perhaps talk with your original RO about that. Agree it would be good to repeat PSMA scan when PSA gets a bit higher to see if you can determine where remaining cancer is hiding. Don’t give up on an aggressive approach to finding and treating it. ( And external heat is not going to do it. Stick with the science). Paul (aka Pablito)

[PabloK in reply to MateoBeach]

Pablito - good advice - i was just OK with Lupron but i'll bring up your approach when i meet with the MO - it really sounds like a reasonable alternative.

My IMRT was to the full pelvic bed - my new RO is looking into whether they increased the dosage to the impacted lymph nodes - or just a blanket on all.

unfortunately i don't have a choice on the external heat treatment - i live in phoenix so every time i jump into my car in the summer, i get the 150 treatment.

thanks

[Don_1213]

Whats your testosterone level? As my Med-Onc says "PSA is useless without a T readout.."

If your T has climbed to something higher than 400 or so a PSA level of 0.6 might not be considered abnormal. And you should read up on "PSA Bounce" after radiation/ADT. About 30% of men with the treatment you had experienced it, and you're right about on schedule for it.

The word is - Don't Panic! (Hitchhiker's Guide to the Universe).

The fact that the PSMA-PET scan showed nothing may well mean - there's nothing to show.

If it was me (and I had a similar treatment and a similar disease) I would watch the PSA for at least one more month, perhaps two months. If it doubles every time - then it would be time to get another PSMA-PET scan - something would be showing if there is anything to show. If it stops rising - I'd be sitting tight on it, but try to push for monthly PSA/T reads. Once it reaches 2 you are looking at a recurrence, so the trick will be to track it down. It's much more likely the PSMA-PET scan will show something at >1.

Meanwhile - your T level is? You mentioned in your bio you know it was coming back... how far has it come back is the question.

[PabloK in reply to Don_1213]

Don - my testosterone is around 250 - just enough to start the hair growing on my back again. I have pushed for monthly PSA and i'm glad i did - my original uro was happy with once every 6 mo - so i twisted his arm to get monthly PSA/T. Now i'm at mayo and need to get that set up again.

I like your approach - and i am guilty of a bit of panic every time i get new "news" - that's the great thing about this forum - i can get advice from the veterans .

thanks

[NRH_Beach]

i’m in a similar place. I can’t seem to get more than 120 days of ADT vacation. I know my BRCA2 gene mutation is a factor.

i have the PMSA CAT scan tomorrow and discuss options on Weds. Even though Zytiga has not failed me, I am eager to look at Parp inhibitors or other options. I’d like to kook at options while I am q a reasonably fit 60 y.o