My husband has advanced, Stage IV castration resistant prostate cancer. When he was diagnosed in May 2022 his PSA was 4700, he has widespread bone metastases. He stopped responding to Docetaxel, Pluvicto and is now not responding to Cabazitaxel, his PSA is now over 700. He is feeling good, no pain so we continue to be surprised and disappointed that he's not responding to treatment. Of course we know we have to figure something out, this PSA can not just continue to rise. We are looking into a couple of clinical trials, one in particular that has our attention is Actinium. His oncologist mentioned a stronger chemotherapy if his PSA continued to go up. I know there are many people in this group dealing with this and I just wanted to see if there is anything, anyone else is doing and having results, any clinical trials that are proving successful? I just want to make sure we aren't leaving any stone unturned. My husband is only 55 years old and we are not throwing in the towel, that is for sure.
need some guidance, feeling desperate.. - Advanced Prostate...
need some guidance, feeling desperate..
I suggest this trial: ascopubs.org/doi/abs/10.120...
I think a biopsy of his metastases (histology, IHC, and genomics) may point you in a useful direction.
Wow I thought my 1700 PSA was high! (Neither here nor there now, but I'm curious as to how your husband was diagnosed.) I see in your husband's bio Zytiga (aka Abiraterone - I'm taking this). Was he then on Triplet Therapy for a while (chemo, ADT, ARPI)? All three of your drugs at the same time? Or sequential?
For the record I'm just somebody with stage 4 high volume metastatic prostate cancer. What I've learned is very specific. But as for "leaving no stone unturned" may I ask if your husband has explored the world of exercise?
This isn't a paternalistic pat on the head "exercise is good for you" question. You may have already turned up in your research that there was growing good quality evidence and theory that a program of exercise can actually contribute to fighting back against cancer. (It's hard to figure out what kind of exercise - apparently both aerobic and resistance exercises are good - and volume and intensity may also be good - as I have learned it's also possible to over exercise!)
Lots of people aren't able to exercise but since your husband is still apparently up and about maybe this is something to consider?
Hi John, my husband started having symptoms almost 5 months prior to being diagnosed. He was having pain and weight loss and sadly it took that long before a doc finally decided to check his PSA. He started out on Zytiga and Lupron initially, no chemo. He responded very well initially, PSA dropped down significantly, single digits. He then started having issues with the Zytiga, his liver numbers were not good. He was switched to Erleada. His psa started creeping back up and that’s when he started docetaxel and he still continues with the Lupron. As far as exercise, he was engaging in some light exercise in the beginning and still does some sporadically. He is pretty active and is an avid golfer, weather permitting.
Hi Kiki. Thanks for sharing the background. The whole PSA testing saying is a scandal and I wrote a big post about it when I was first diagnosed. But I guess it's water under the bridge now - except like your husband an increasing number of people are diagnosed after metastasis. As for exercise again I see a lot of other people have been encouraging your husband to pursue exercise. Bravo if he can.
I am taking 2800 mg of curcumin daily for liver detox and a multitude of other things. Psa of 5664 May 22. 1.26 now. Above are my liver numbers. I take Lupron and zytiga along with prednisone. In the spirit of honesty I have to add that I take low dose zytiga with food.
That is interesting. Did you have issues with your liver numbers and that’s why you started taking the curcumin? The Zytiga was working for him initially.
No, I’ve been taking curcumin for several years. I also take celecoxib. The two together work together to fight inflammation and prostate cancer. Curcumin has also been found to be beneficial to patients on chemo.
He has to do exercise that makes his muscles quiver, and aerobics/cardio that make him breath hard. Golf sans a cart helps some. Aerobics are better. Resistance exercise is mandatory.
Sorry to read this...I was dx'd at 53. IMO the younger the dx the more devastating it is, particularly advanced stage like your husband.As suggested, a biopsy to learn more about the specifics of your husband's cancer is the next step.
You could look into estrogen patches to suppress the pc Trials showed it works but was never rolled out
You could also look into phytoestrogens Aguaje is a strong phytoestrogen grown in Peru or there is wild yam
Beware of the new ADT drugs that block estrogen as well as testosterone
Aguaje ! Thanks a lot, I am taking Vitex (herb ) took the peanuts out of my M&M's, , but will look into this for sure. side note I am taking Pao Pereira, Puyang for my PC along with many other things. Studies suggest cytotoxic to cancer cells. Not a doctor but just a poke and hope guy,
Which ADT drugs also block estrogen?
All ADT drugs block estrogen (by blocking testosterone in a man you are blocking the estrogen he makes from that testosterone )
But they brought out new drugs that also block any testosterone made from DHEA made by adrenal glands thereby blocking this small amount of estrogen - on the premise this small amount of estrogen was feeding castrate resistant pc it has had disastrous results
Thank you Lizzo30. I guess that’s what I thought. so Zytiga blocks the adrenal gland testosterone so it also blocks estrogen. My husband is on Zytiga. Would it be a good idea to get estrogen patch? Or something else ? I know he would rather not add any drugs but I am concerned about bone loss.
Your husband needs to get a DEXA scan stat. Bone loss rates on ADT are such that you can do all the non-medication stuff you want and it won't be sufficient. His MO will know. I'm on prolia in addition to every non-med measure I can think of.
ncbi.nlm.nih.gov/pmc/articl....
Thank you. He had a Dexamethasone in December. Showed osteopenia had worsened from the one he had before treatment. But I guess not bad enough for them to put him on prolia. But we are looking long term and want to avoid any bone loss.
Rereading this I see spellcheck changed DEXA scan to dexamethasone. I also wanted to get ideas about vitamin K2. I have been taking drops with D3 and K2 for my immune system,but I see that K1 and K2 help with bone calcification. The Caltrate that my husband takes doesn’t have any K vitamins,,maybe we should add that. Forgive me for questioning everything. He is doing so well on the current regimen and PSA continues to drop slowly, that we are afraid (superstitious?) to make changes.
Hi Bspouse I can't give you medical advice but I do think phytoestrogens are good for prostate cancer at all stages and even for prevention of pcAsk your husbands healthcare team about estrogen patches failing that look into phytoestrogens I am giving my husband aguaje it's what I use for menopause
I had asked about estrogen patches and the MO said not necessary. But he has been on lupron and Zytiga for over 2 years now and doing well. But I am concerned about his bones. His mother and sister both had osteoporosis so he may be predisposed to that. Thank you, I will look into aguaje. What about soy? Doesn’t that mimic estrogen?
Since he has multiple bone metastases a trial with Ac 225 could be considered. This are some of the trials with Ac 225 which are actively recruiting
There is far to much pressure put on people to have Chemotherapy these drugs kill the immune system leaving you wide open to high psa readings go against the grain
& buy Dr Mercolas Black Fermented Garlic capsules it contains twelves times the active Acillin levels of ordinary garlic this active ingredient kills 14 types of cancer & builds up the immune system to fight infections etc you can get them at good health stores or Amazon
Yes I have stage four castration resistant bone Mets
Stop or slow down sugars drink plenty of water eat lots of veggies and go swimming and other cardio
look for ARX 517, AMG 509, EPI-7386 trials, I am on mobile at the moment, but if you check my posts you may find something interesting
ok add these to the group:
annalsofoncology.org/articl...
withpower.com/trial/phase-1... (maybe a bit too early)
This one is EPI-7386 + enza:
There really is an answer for you situation. Read my bio because I had my life saved and have lived 8 years longer than they gave me but I can't say it on here sadly.
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