Opinions desired

[spm58]

Hello I’m Scott and I have had prostate advanced stage four for about four years. Started with removal of prostate but it was in my lymph nodes(2). So started Lupron and 36 rounds of radiation. My psa was about a 6.Two year and ago I started a trial. They gave me zytega and apoluetamide. My psa was now zero. I also did immunotherapy as part of trial but really doesn’t help. I feel great except tire easily. Last 7-8 months psa as gone up from zero to .2 to .4 to .8 to 1.6 and now to 6. My cycle was zero but now 3. No bone Mets and organs are all good, but nodes are increasing in size. My MD Anderson dr keeps saying let’s watch. That drives me insane! Any suggestions??

[TEBozo]

Did you do radiation, too?

[spm58 in reply to TEBozo]

Yes37 rounds

[Tall_Allen]

Are you still taking Zytiga and Erleada?

[spm58 in reply to Tall_Allen]

Yes along with 3 monthly injection of lupron

[Tall_Allen in reply to spm58]

I would not give up on those too quickly, but docetaxel would be a good choice.

[Magnus1964]

You could go on xtandi. It works in a different manner than zytiga.

[Hidden]

Hey guy! I’m Scott also , and I have just over five years in with stage #4 .. I was non-op . Did 8 wks imrt and double adt Until orchiectomy 9-17 dropped Lupron . Still on a defunct test Adt drug .. I like that your dr is not an alarmist . This makes me think that there are options for you .? I understand , that watch and wait sucks . Hang in there. Others will chime in with some answers. Scott 🌵

[Hidden]

What meds are you taking now?

[spm58 in reply to Hidden]

3 month lupron injection, apaleutamide, and zytega. Already did radiation and prostate removal

[pcfred]

As they say, "watch", and in the mean time cut waaay down on sugar and make vegetables a daily routine. DO IT!!!

[podsart]

Might ask doc about swapping Apalutamide with daralutamide, which I think has some possibilities of handling some AR mutations

[Rocketman1960]

discuss SBRT with RO for nods. I have eliminated PC in two so far. If the are big enough. Zap them. I also agree with others that Xtandi is an excellent ADT drug.

[RonnyBaby]

It sounds like some BCR - the rising PSA can't be ignored.

I had some positive lymph nodes at Dx, which were radiated (some area treatment) but it appears that there is more to be done - likely (a guess) that the pelvic area is acting up again because there was spread thee in the past AND maybe they were too small to show up on scans (a few years ago).

Unfortunately, for many, the primary treatment failed because they didn't get it all 'out' the first time they tried to manage it.

You may need some long term ADT combo added to your existing fight-back.

Seeking a second opinion might also something you may want to consider - is there a better option for you ?

Keep us posted - wishing you well on your journey.

[spm58 in reply to RonnyBaby]

Well the drugs I’ve been taking are for last three four years. Worked great for awhile.i want him to throw out some new drugs but say they won’t work.

[j-o-h-n]

Pca has driven most of us insane.... so you're in good company... Listen to you Doc... and for God's sake stop doing those Jackson Pollock Jigsaw Puzzles. Laugh at your Pca....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 08/01/2020 12:33 PM DST

[NecessarilySo]

I'm eight years after diagnosed advanced pc. I went through similar rise after each of three Lupron series in 2012, 2014, and 2016. I stopped Lupron for four years from 2016 to this year June 2020. They monitored with scans but couldn't find any metastasis on scans all that time so we let it ride, (cant treat what you can't see) so this year PSA rose to 35. Last scan showed "possible" metastasis in lymph nodes and pelvic area, so we went on Lupron again. My feeling is that PSA is an indication of the amount of cancer in body after radical prostatectomy or radiation therapy and it should be treated by Lupron+ to keep it down, but only when there is no clear indication of symptoms or tumors on scans. Meantime keep low saturated fat diet, as meatless as possible but keep up protein intake with meatless substitutes like impossible burgers or similar and intake lycopenes with V8 or similar. So perhaps under 10 is what one doctor thinks is best, under 30 is what another doctor thinks, and maybe even more for others before Lupron or other hormone blockers, (testosterone reducers), depending on pain and growth. Some get to PSA 3000 or 5000 but they are probably beyond the point of no return. Try to minimize growth with consumption of lycopene-rich foods, and use heating pads on obvious tumors if possible, or hot showers above 106 degrees. Some growths can only be detected by scan. Follow your scans and follow your pains. Treat with Lupron when PSA gets above 10-30 your preference or doc's preference. Magnets worked for me to some extent also.

[Hidden in reply to NecessarilySo]

“cant treat what you can't see”...... is this you writing or did a medical oncologist actually tell you that? You might research micro-metastasis and combating with systemic treatment.......

GD

[NecessarilySo in reply to Hidden]

So, a couple of times I had pain spots that I told the doc's about. They scheduled scans. Scans were negative, didn't show anything, probably just too small to detect with scans. So they could not biopsy or treat in any way, without knowing "where". The idea was to do a biopsy if they saw something. Agreed, lately scan techniques have improved. Latest scans with auxium were a bit more definitive but leave something to be desired. For four years I had an oncologist/ hematologist who seemed to act similarly, i.e. he hesitated to apply hormone therapy without anything showing on scans. Meanwhile PSA rose to 35, he was not very concerned without scan evidence. Changed to another onc/hem which brought more scans and PSA tests and hormone therapy based on the latest scans which are kind of questionable in my opinion. I feel lymph nodes on right neck, radiologist said nothing there but on left neck. I don't feel anything on left neck. Radiologist suggested "possible" metastasis in a few places with tiny activity on scans, but it seems questionable as I don't feel at those points. So in general, the doc's I have seem to need a picture of something before taking any kind of medical action. I tend to agree. My self treatment with heat and magnets seem to have some effect in reducing tumor sizes and pain spots. What they see is all too vague for them to act, so the words "cant treat what you can't see" is my summary of what I experienced from several doctors.

[Patrick-Turner]

I had primary initial Pca treatment in 2010, Psa 6, Inoperable Gleason 9, age 62, so I began 2 years ADT and had 70Grey EBRT at 8 mths into ADT. At 2 years I quit ADT and Psa zoomed up from 0.08nadir to 8, so was forced back to ADT. Psa went to nadir of 0.2, but rose again to 6 in 2016, so I had salvation IMRT to PG, 31Grey, and some RT to the first 2 lymph node mets found in my first PsMa Ga68 PET-CT scan.

Apalutamide, with trade name Earleada is another hormone manipulating drug to suppress Psa growth rather than actually kill may Pca cells. When Psa goes low while on all HT drugs a man can think he's beaten the Pca, but no, Pca just asleep, and while it is asleep it mutates to defeat the drug to keep it sleeping, and it wakes up, and becomes a threat as Psa rises.

I went through this with ADT, then ADT+Cosadex, ADT + Zytiga. ADT + chemo didn't work at all and Psa went from 12 to 50 after 4 chemo shots so I went to Lu177, which seems to have killed the many mets I had in lymph nodes and bones.

But 4 shots didn't kill all bone mets, so Psa began rising again, and Xtandi may have helped action of Lu177, but it also didn't keep Psa low. I had a nice last year though, but now I am back to get more Lu177, with Xtandi still going because its supposed to make my PsMa expression greater, and boost action of Lu177. I have also been on PsMa boosting Veyonda for 2 days before Lu177 and 8 days after Lu177 shot.

Psa was 30 before beginning this round of Lu177. Now I have to wait and see what happens to Psa. If it is not rising or now going down it means Lu177 is working at killing Pca cells.

I have appointment with geneticist on 18th July to see if I am Brca1+2 positive and maybe be OK to have Olaparib PARP inhibitor.

So enough action is being taken against my Pca and without me being advised to just sit and watch myself being ignored by medical system, and thus have my life shortened for no good reason.

I'll cycle 60km this afternoon, 73yo. I feel well. I know things could be worse.

Patrick Turner.

[spm58 in reply to Patrick-Turner]

Thanks Patrick I like that you’re a fighter. God Bless!

[Hidden]

Hi Scott, you asked "Any suggestions??"

Would you ever consider nutraceutical supplements?

There's no scientific evidence that they are effective, but many people think they have helped.

I suspect the patient in this documented case report might think they helped too.

He had inoperable pancreatic cancer which is usually considered the worst cancer anyone can get.

ncbi.nlm.nih.gov/pmc/articl...

Dave