Advanced and aggressive Pca

[Weezer513]

I just need to hear some stories from those of you who have advanced pca with high psa. I’ve posted a few times in here about my father but I’ll do a quick update. Stage 4 bone metastasis diagnosed March of 2020. He’s taken casodex, zytiga and now has done about 8-10 rounds of chemo with dox (spelling) psa steadily climbing into the 800’s. Scans last month showed no advancement of tumors but onc sort of admitted to my mother today that it’s not working and options are low. Next treatment they will try the other kind of chemo that available. Kind of at a loss here I feel like everything they have tried hasn’t really worked. Just faltering in hope over here.

[Tall_Allen]

Cabazitaxel and carboplatin together may work when docetaxel doesn't.

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

[dougnola in reply to Tall_Allen]

Hi Weezer. Your father is lucky to have you. I’ll chime in on Tall Allen’s response. I was dx 4 years ago w stage 4 bone mets all over and psa of 458. My doc thought it aggressive enough so did carboplatin at same time as docetaxel w bicalutimide. Once 6 rounds was done, I switched immediately to zytiga, lupron, and prednisone which has kept psa down so far. Our experiences differ of course and I wish you the best with all your options. ✌️ DougNOLA

[tango65]

You could consider to study the genome of the cancer with a liquid biopsy. The cancer may have mutations which could respond to treatment with drugs such as keytruda, olaparib, rucaparib or drugs treating mutations such as PTEN.

Then you could ask for provenge a vaccine that offers a survival advantage and it could be associated with xofigo (radium) to treat the bone metastases.

He could have a PSMA PET/CT (Ga68 or 18F Dcfpyl) and if the cancer express PSMA, he could apply to the clinical trials for Lu 177 PSMA treatment.

[dhccpa in reply to tango65]

How does a liquid biopsy work? I've had a biopsy but seemed to be scan guided. Thanks

[tango65 in reply to dhccpa]

They draw a blood sample and they collect circulating tumor cells, or cell free DNA/RNA and do the study of the genome of the cancer (somatic genome). They do not study the genome of the person (germline genome). Foundation one has one test approved by the FDA:

foundationmedicine.com/test...

There are other companies and tests. Your oncologist should know were to send the blood.

The probability to harvest enough material for the study with a liquid biopsy is high if there are bone metastases and a PSA greater than 10.

If the cancer has mutations, some of them could make the cancer susceptible to treatment with different drugs such as olaparib, rucaparib, keytruda or similar, erlotinib or similar etc. There are some clinical trials for these drugs. Olaparib, rucaparib and Keytruda are FDA approved for specific mutations

accessdata.fda.gov/drugsatf...

fda.gov/drugs/drug-approval...

[dhccpa in reply to tango65]

Thanks. My oncologist seems clueless on genetic testing, and Blue Cross says he'll have to ask for it. Meanwhile, the slides for my biopsy sit at the lab out in Oklahoma. Is that material even needed for germline amd tumor testing? And does it matter if I'm on Lupron and PSA is under 1? PSA entering treatment was 200.

[tango65 in reply to dhccpa]

The germline genome could be studied gathering some saliva or a small amount of blood.

They could study the genome of the original cancer using the material in the original slides.

If you have metastases the genome of the cancer in the mets could be different from the original tumor, but mutations in the original tumor will be present in the metastatic cancer. If the original cancer has a PTEN loss, the metastases could have the same mutation. I believe one should have the genome of the original cancer studied.

If the PSA is low a liquid biopsy will not work and direct biopsy offers more chances to obtain enough material to study the cancer genome . To know the genome of the cancer is useful to plan therapies even when you may not need it right away.

[dhccpa in reply to tango65]

Thanks!

[tango65 in reply to dhccpa]

Best of luck!!!

[13thwarrior]

Weezer, how old is your Father? I spent most of 2020 in experimental cryoablation therapy treatment, using relatively small amts. of chemo inserted (painfully) directly into the prostate and orally thereafter. My PSA shot up to 95 in late 2019 after flatlining for a number of years in the 20s and 30s. By the time I started treatment in June, it was 350. When I left the program on 10/31, it was 780, and I was close to becoming invalid. I went to a treatment ctr in MX (in a wheel chair) that uses heat therapy, hyperbaric and ozone treatment, extensive IV work to rebuild the immune system, and a vaccine made from the patient's blood, which is taken weekly for 12 weeks (I'm on week 6).

When I returned to the States after a 3-week stint, my PSA had dropped by 50%. It has continued to drop, in part by taking a (partial) testosterone-blocking pill, and with the daily application of Infrared heat therapy. Cancer cells die above 99 degrees F. (Forgot to mention that I had a heart attack a few weeks before going to MX (3 stints). As of this week, my PSA is 45, most of the debilitating pain in my hip/waist/R leg chest has dissipated, and I'm able to walk well and start, with the help of PT, rebuilding the 25# of muscle mass I lost this year due to the above and to no gym or martial arts training for 9 months due to COVID restrictions on gym access.

I am 73. At this point my alternative treatment, plus SOME traditional treatment is saving my life. Dizziness, etc. is mostly due to the heart meds I have to take. Before this year I was taking zero meds for anything. MX is not cheap and you'll get no help from stateside med policies. My stay there cost me $30,000. I am not wealthy, but when you carefully research something that may save your life, it's possible to find the money. I had already spent 10 large ones traveling for the experimental treatment. Tell your father that stratospheric PSA is not necessarily a death sentence. I'm not breaking out the champagne yet, but so far I'm on the road back. At this point, I'd say that a 95% PSA reduction is something to be optimistic about. Do not give up!

My user name is 13th Warrior and I have not posted here for several years. Most people reading this will think I am nuts because I don't sign up for every 10 syllable med that's recommended and go through endless rounds of radiation, etc. In fact, a UK poster called me a lot worse, telling me I should follow without question, whatever I was told to do. So how is that working out long term for most men with PCA? Maybe even you? Well, to each his own.

So far, I'm still standing with the other 300 Spartans at Thermopylae and the Persians (metaphorically speaking for PCa killer cells) are now taking casualties big time. I think Infrared heat is playing a critical role in killing them and lowering my PSA. Even if they eventually get me, they will have paid a huge price doing so, and I will be doing things on my own terms, not blindly following someone who wants to treat me until I die of the treatment - which was what was going on in spite of the well-meaning professionals who were doing their best with what had apparently helped others. What I've learned about PCa is that no one size fits all, and no one cares as much about your health and living as YOU do. So if you want to avoid a one-way trip down the Allopathic Tunnel, either become an advocate for yourself and/or get someone to advocate for you.

A lot of health care specialists are true "professionals" but their paradigm filters out quite a bit that's never covered in med school, so you may have to be resolute to get their attention, if not their respect. They will tell you that everything you've read here about me is just "anecdotal". Well, too bad. And by the way, you are not "dying". You are either alive or dead. And when you decide you're dead...then you are.

[Pcabc in reply to 13thwarrior]

Warrior, how do you use/apply the infrared heat? Is this something you can do in your own home?

[13thwarrior in reply to Pcabc]

Pcabc, If I could afford it/have space, I would probably have own an infrared cell. But what I DO have and am fine with now is an infrared blanket. After a lot of research, I chose the Bio Mat brand. I have a Mini7000 (torso length) and a 22 inch strap, which I can place anywhere on my body while at work to target a specific area (e.g. IT band insertion R leg). Long term, the jury is still out. I don't want to see a reversal of these numbers either. I'm not naive enough to think I can get rid of all of it, but at the same time, I believe it's possible to nail it to the wall, and not have what's left of my life destroyed by immune system cripplers like high potency drugs and radiation - which often create NEW kinds of cancer. I also feel that within a few years, CRISPr, stem cell removal/reinsertion, etc. have the potential to change this game so profoundly that full-body radiation/chemo/hormone therapy/ surgery will be looked upon as barbaric treatments. If you really want a wake-up call, go back and see what the entire edifice of hormone therapy treatment of the efficacy of destroying a man's ability to produce testosterone is based upon. Hint: the initial patient had four legs and barked.

My game plan is to get things to the point that what's left of the PCa is contained/encapsulated so that it can do minimal damage to me. Autopsies of Japanese centenarians after WW II showed that they all had multiple cancer nodes, but they were all encapsulated and were minimally affected. So that's my goal. We shall see...

[Zetabow]

I started out 26 months ago with extensive Mets and a PSA of 1386. Chemo and ADT got it down to 0.28 for 11 months, PSA jumped to 300 in Sept/Oct, Zytiga brought it down to 88 but didn't last very long and was 110 in Dec, I will see Oncologist in a couple of weeks to see if PSA is still climbing.

It's been a tough up/down rollercoaster ride with constant pain. I haven't given up hope yet (you just can't), my Doctors are doing their best, my Wife and children give me the reason and drive to keep fighting.

Best thing you can do for your Dad is be positive and lots of Love, I think it helps the patient to keep positive, even when the outlook doesn't look great.

[13thwarrior in reply to Zetabow]

Zetabow, You are absolutely correct!

[j-o-h-n in reply to 13thwarrior]

(copy) To Weezer513

I too am waiting for THE response. "How old is your father?" Thank you...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 01/03/2021 11:13 PM EST

[Shooter1 in reply to Zetabow]

Why do you have to see your onc to see if PSA is climbing?? Mine just orders monthly blood tests and I have a draw locally in the morning and results are on Patient Portal in the afternoon.

[Zetabow in reply to Shooter1]

Because he wants to discuss the next course of action, he already suspects the Zytiga isn't working and this next PSA test will confirm it.

We don't have out of control Covid problems so I feel comfortable visiting the Hospital (163 Covid deaths in whole country).

Take Care

[Pcabc]

Weezer, I don’t know about hope but I am in the same position with my father down to the time period. He is in his 80’s and very fragile so our medication options are very limited as many meds make him ill. Nubeqa caused severe worsening of dementia (he became delirious on Nub) and his liver enzymes went through the roof. Currently on lupron, and just started zytiga and prednisone (half dose of each) 2 weeks ago. Cancer has meta stored everywhere and psa went from 7 to 47 in 3 months and then jumped to 127 in just 3 weeks. Covid is really messing up treatment as well as we are waiting on some treatment options such as some plasma vaccine option until he can get a Covid vaccination.

[HB1966]

Hi,I startet 5 years ago with a PSA of 950.

ADT, 6x Chemo, ZYTIGA, XTANDI, XOFIGO and XGEVA. And 2x radiation to the hip.

In may I startet with a trial (MAK683 / NCT02900651). My actual PSA was 86 in november. Since I am in this study I have a stabile disease. That mean mets have not increased in size. No idea how long this will last... Next option will be CABAZITAXEL

A positive attitude is helpful in any case.

Best wishes Theo

[elvismlv123]

Have you tried alternative medicine?There are herbals that can help in many cases. I dont want to give false hope but I know Prostasol and PCSpes and Essiac have a track record not to laugh at. They have bno harmful side effects. Also consider very low DES and also Estradiol patches.

[elvismlv123]

I will pray for you.....

[Weezer513]

Thank you all for your input. It is a lot to digest

[j-o-h-n]

I too am waiting for your response. "How old is your father?" Thank you...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 01/03/2021 11:10 PM EST

[Hidden]

Hi Weezer513

If you run out of other options then you might wish to consider some complementary supplements that are relatively inexpensive and non toxic.

If you click on my avatar picture you’ll be able to read my bio and some posts I started.

You might also be interested in this PUB MED case report. It's about a terminal pancreatic cancer patient who had to stop his chemo due to treatment intolerance and started taking two supplements instead.

Unresectable Pancreatic Adenocarcinoma: Eight Years Later:

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

I know that article is about pancreatic cancer and not prostate cancer, but if there's anything that "might" be able to help with that truly dreadful disease then it just might be worth trying for advanced prostate cancer too. (I did).

One of the supplements that patient took was Essiac which is an old herbal remedy that's been around for almost a hundred years.

I'm the first to admit that there's no peer reviewed scientific evidence to show that Essiac is effective, but I've been taking Essiac together with CBD oil for almost 4 years and am very happy with my results so far.

When I stopped ADT in early 2017 due to severe side effects my oncologist predicted my PSA would keep rising and my mets would continue to spread.

Almost 4 years later my PSA is almost the same as when I was diagnosed December 2016 and my 2020 PSMA PET CT scan was better than my December 2016 PSMA PET CT scan.

Here's a link to the post I started on this forum about my own cancer journey.

healthunlocked.com/advanced....

Best wishes to everyone

Dave