Looking for some guidance on where to go from here as is it appears I'm on my way to castrate resistance. Diagnosed in March 2019 with T4N0M1b HSPC. Started Lupron then, added Zytiga/Prednisone in May 2019. Due to also having progressive MS we opted for the Zytiga approach as opposed to docetaxel. My existing neuropathy was concerning and I didn't want to possibly add to it with the docataxel treatment. Original PSA of 368, ALP 575. By December of 2019 my PSA had fallen to 5.15 and ALP to 130. I saw continued reduction of both until the past 2 months when PSA went from 2.74(June) to 3.06(July)to 4.75(August)to 5.85(October) to 10.35(November). ALP has remained in the 100 to 130 range throughout this time. Obviously something is up and with the PSADT of less than 9 months I am assuming I have become castrate resistant.
My first thought is to try the switch from Prednisone to Dexamethasone in an attempt to get some more mileage out of the Zytiga. I'm sure my MO will want to repeat scans to verify any radiologic progression, but in the meantime I thought that trying the Dexamethasone would be worth a shot until we at least get confirmation of progression. The big question is what to do next should my suspicions be confirmed? The literature points back to docetaxel, but my MS is still the sticking point there. I can barely feel my feet on some days and I currently using a rollator for ambulation due to my unsteadiness and clumsy feet. I am concerned that if the docetaxel worsens my neuropathy I will lose what ambulation I currently possess. Is carbazitaxel ever approved without prior docetaxel use? It supposedly has less of the neuropathy side effects. Provenge is another option. Xofigo also, although my pain level is minimal. I've done genetic testing and no genetic issues were detected.
I see my MO on the 23rd and want to be prepared with all the knowledge I can bring to the table. Any ideas or suggestions will be greatly appreciated.
Written by
Kentucky1
To view profiles and participate in discussions please or .
If your MO can make a case that docetaxel is contraindicated because of your MS, your insurance may agree to approve Jevtana. When Zytiga+dexamethasone is over, consider Xofigo+Provenge.
Some blood draws are for germline tests, but there is also circulating tumor cell DNA test they can do. Anyway, it showed nothing useful? That's usually the case. Sometimes an analysis of an actual tumor can provide more info, not necessarily genetic.
If any are big enough and accessible, why not? While genetics gets a lot of media attention, I think a good IHC analysis can sometimes provide actionable clues. They can stain for expression of PSA, PSMA, AR, MSH2, and PD-L1. If they will pay for a somatic genomic test too, so much the better.
After dexamethasone failure you could consider the clinical trials for modified niclosamide which could make the cancer respond again to abiraterone (zytiga). Modified niclosamide is absorbed by the gut meanwhile regular niclosamide is not absorbed in enough quantity to have an effect in the cancer, The trials are done at UC Davis:
The other option, which is outside the SOC is to apply for treatment with Lu 177 PSMA, if there were mets which could be seen in a Ga 68 PSMA PET/CT or a 18F DCFPyl Pet/CT.
There are clinical trials for these studies and treatments, and the Ga 68 PSMA is approved by the FDA at UCLA and UCSF.
Lu 177 PSMA treatment is a systemic treatment, it will treat the cancer anywhere and in some people it had made the cancer susceptible to enza or abi again.
You could consider to get these studies and treatments in Europe, Australia or India if financially possible.
There is also the possibility of trying BAT (bipolar androgen therapy) which could also re-sensitize the cancer to enza or abi.
Your oncologist could do the same protocol if he/she is interested.
If there is progression of the cancer during zytiga treatment, the cancer is castration resistant and you could request treatment with Provenge which is the only vaccine with a survival advantage and it may be more effective when use earlier in the treatment.
If there are bone mets it could be combine with Xofigo.
If there are metastases which could be biopsied you could request a biopsy and a genetic study of the genome of the cancer or a liquid biopsy. There are specific mutations which could be treated with drugs such as olaparib, rucaparib and or keytruda or similar.
Yes lots of ideas here to follow the Dexamethasone switch. I just want to point out that if you are on Medicare then I would take immediate advantage by declaring castrate resistance so you can get Provenge covered now as it works better sooner rather than later. Xofigo enhances it also if you have bone mets. Then pursue other strategies to deal with the CR. Perhaps reduced dose Jevtana could be discussed?
Seeing as you have asked for any ideas or suggestions perhaps you might also 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:
I know that article is about pancreatic cancer and not prostate cancer, but if there's something that "might" be able to help with that dreadful disease then it just might be worth trying for prostate cancer too.
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 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.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.