Advanced Prostate Cancer: Treatment Options for Rising PSA
Featuring: Brad Power, Ian Lewington, Brian McCloskey, David Plunkett, John Sandiford, Amit Gattani, Robert Gurmankin, Jeff Krolick, Dr. Dawn Lemanne
In short
Ian Lewington, a New Zealand man living with advanced metastatic prostate cancer, brought his real treatment questions to a panel of fellow patients and medical experts after his PSA began rising despite hormone therapy. The group explored second-line hormone therapies, Bipolar Androgen Therapy, adaptive therapy, PARP inhibitors, and how to use testing services to build a broader list of options — all in the context of limited access to treatments in New Zealand.
- •A rising PSA while on androgen deprivation therapy may signal the start of castrate resistance — worth raising with your oncologist sooner rather than later to map out next steps before options narrow.
- •Second-line hormone therapies like abiraterone and enzalutamide have worked for other patients in similar situations; ask your doctor whether these fit your current test results and mutation profile.
- •Bipolar Androgen Therapy has helped some patients but caused cancer growth in others — it is worth an honest conversation with your oncologist about your specific tumor burden and bone involvement before pursuing it.
- •Building a list of potential treatment options using testing and matching services, then reviewing that list with your doctor, can open doors to treatments or trials you might not otherwise hear about.
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Meeting Summary
Advanced prostate cancer patient Ian Lewington is facing a number of choices in his treatment strategy, testing and treatment options, and other decisions, such as:
•Treatment options : What treatments should he consider as his PSA (prostate specific antigen, a biomarker of prostate cancer disease activity) is rising, indicating his current androgen deprivation therapy (drugs which reduce the male hormones) is failing, and he’s becoming "castrate resistant" (not responding to androgen deprivation drugs)? Should he add a PARP inhibitor (Poly-ADP Ribose Polymerase, a protein which helps damaged cells to repair themselves. PARP inhibitors stop the PARP from doing its repair work in cancer cells and the cell dies. It is often used in ovarian and breast cancer.)
•Treatment strategy : When should he move to a new therapy? Is his PSA rise from 0.07 in April to 0.26 in November and 0.40 in December an indication that his androgen deprivation therapy is failing? Should he try “adaptive therapy” (flexing the amount of drugs based on PSA response) or “Bipolar Androgen Therapy” (alternating androgen deprivation drugs with testosterone) with the quantity of metastatic lesions he has? How should he sequence or combine treatment options?
•Tests: What tests should he get to inform his treatment strategy and treatment decisions? He got a liquid biopsy recently which showed no special mutations. He just had a second PSMA scan (Prostate-Specific Membrane Antigen, a test which lights up cancer cells) at the end of October which showed no new activity and shrinkage of all tumors vs his scan in September 2022. He has no bone pain or other health issues. His blood is good, and he has no liver or kidney issues.
•Expert inputs: Who should he consult? Should he travel to the Mayo Clinic or other clinic for another opinion? We call this meeting where we focus on one patient a "hackathon", a meeting option which we offer to every patient. A diverse crowd of fellow patients, microbiologists, and medical experts join Ian to help him, his caregivers, and his medical team address the most urgent questions facing them. We will continue the conversation on our online discussion forum. “Testing and Treatment Options for Ian Lewington’ Who is Ian Lewington and what is his medical history? Ian lives in New Zealand. He was diagnosed in June 2021 with advanced stage 4 (metastatic) prostate cancer. His PSA was 542 (very high), with aggressive cancer (Gleason 9 – the Gleason score is based on how much the cancer looks like healthy tissue when viewed under a microscope, with scores from 1-10. Higher Gleason scores from 8 to 10 mean the cancer doesn’t look like healthy tissue.) A PSMA scan in July 2021 confirmed that he had extensive bone metastases but no organ involvement. He started goserelin/Zoladex (a hormone therapy) and had radiation to one tumor on his spine before starting six rounds of docetaxel (a chemotherapy), which finished in December 2021. He then continued with goserelin and bicalutamide/Casodex (a hormone therapy). His PSA continued to decrease through 2022 and into the first part of 2023 getting to a low of 0.07 in April 2023. Since then it has increased steadily to 0.15 in October 2023, to 0.26 in November 2023, and to 0.40 in December 2023. He had a further PSMA scan in September 2022 which showed no new activity and shrinkage of all tumors vs the scan. They don’t know why his PSA is increasing. He is also taking zoledronic acid for osteoporosis per a bone scan in October 2022. What have been the experiences and advice of other advanced prostate cancer patients that might help Ian in his decision-making?
•Brian McCloskey had a positive response to apalutamide (effective for 15 months) and abiraterone (effective for 14 months), and recommended it as a second line hormone therapy option for Ian. Through working with various testing and matching service providers, Brian identified about 21 different treatment options, which he reviewed with his doctor. Those treatments are still on the table, and he can keep coming back to them to refine his menu of options. He recommended that Ian also build his list of treatment options from the same service providers.
•Brian also shared the cautionary stories of Bryce Olson and Rick Stanton, who responded to Bipolar Androgen Therapy with growth of their cancer.
•David Plunkett had good results from a combination of abiraterone (hormone therapy) and cabazitaxel (chemotherapy) – low PSA levels and enduring benefit after three years.
•John Sandiford shared his approach to managing his hormone-sensitive prostate cancer with a flexible, non-trial Bipolar Androgen Therapy, alternating high-dose testosterone and darolutamide, keeping track of key markers like testosterone, PSA, and estrogen. This allows him to adapt to his body's needs and maintain quality of life, while exploring further research and treatment options.
•Amit Gattani shared his successful experience with Xtandi/enzalutamide (12 months) and Zytiga/abiraterone (9 months) for his prostate cancer, suggesting these could be good options for Ian based on his low PSA. The strategy he recommended is to aim for long-term PSA stability with these established drugs before exploring targeted therapies in trials, since Ian is healthy and early in treatment. Amit decided not to pursue Bipolar Androgen Therapy due to his concerns about nerve damage. He has a lot of bone metastatic lesions very close to his spine, and their growth causes nerve damage due to “Testing and Treatment Options for Ian Lewington’ spinal compression. If the mets go away, the recovery of the nerves is not guaranteed, and can cause long term effects.
•Robert Gurmankin suggested that if Ian is considering traveling outside New Zealand, Australia would be a good option, as they have some excellent treatment centers and would be more convenient than traveling to the U.S.
•After the meeting, in late November, Ian spoke with Jeff Krolick, an advanced prostate cancer patient, who shared his experiences with adaptive therapy and suggested Ian contact his oncologist Dr. Dawn Lemanne. Ian had a video chat discussion with Dr. Lemanne in which they discussed adaptive therapy and Bipolar Androgen Therapy. What are Ian’s next steps?
•In November 2023 Ian’s oncologist proposed that he start abiraterone/Zytiga (a hormone therapy) 1000mg plus 5mg of prednisone (a steroid) daily while continuing goserelin. He has recently stopped bicalutamide.
•Ian has broached the topic of doing Bipolar Androgen Therapy with his oncologist, which she is considering, but she is concerned that it could cause a worsening of the tumors. As Ian understands it, abiraterone tends to work for about 18-24 months.
•Ian’s oncologist will also be looking at adding a PARP inhibitor (olaparib) if the mutations warrant it, although that's not funded in New Zealand.
•Ian will have a video chat with his oncologist, Dr. Dawn Lemanne, and Dr. Bob Gatenby (an expert in using adaptive therapy in prostate cancer at Moffitt Cancer Center) to work out a proposed treatment plan that could include adaptive therapy and/or Bipolar Androgen Therapy. The information and opinions expressed on this website or platform, or during discussions and presentations (both verbal and written) are not intended as health care recommendations or medical advice by Cancer Patient Lab, its principals, presenters, participants, or representatives for any medical treatment, product, or course of action. You should always consult a doctor about your specific situation before pursuing any health care program, treatment, product or other course of action that might affect your health. “Testing and Treatment Options for Ian Lewington’ Meeting Notes SUMMARY KEYWORDS psa, treatments, options, therapy, testosterone, cancer, months, mets, bone, trials, mutations, docetaxel, identify, hormone therapy, new zealand, doctor, oncologist, drugs, talk, radiation SPEAKERS Brian McCloskey (47%), Ian Lewington (16%), John Sandiford (16%), Amit Gattani (12%), David Plunkett (6%), Robert Gurmankin (2%) OUTLINE 1.Prostate cancer treatment options in New Zealand and the US. (0:00) 2.Second-line hormone therapies for prostate cancer. (6:32) 3.Prostate cancer treatment options and outcomes. (10:31) 4.Prostate cancer treatment options and side effects. (15:59) 5.Personalized cancer treatment options. (20:22) 6.Cancer treatment options and personalized medicine. (24:11) 7.Prostate cancer treatment options and monitoring. (29:24) 8.Cancer treatment options and management strategies. (35:26) 9.Cancer treatment options and side effects. (40:51) SUMMARY
•Ian Lewington shares his cancer treatment journey and seeks advice from the community.
•Ian seeks advice on potential treatment options for metastatic prostate cancer, including PARP inhibitors, despite high cost in New Zealand.
•Ian seeks advice on treatment options for metastatic prostate cancer, including Lutetium actinium therapy and bipolar androgen therapy.
•Brian McCloskey discusses his prostate cancer journey, including surgery, radiation, and hormone therapy, with a focus on apalutamide's effectiveness for 15 months.
•Brian McCloskey found Abiraterone effective for 14 months, and recommends it as a second line hormone therapy option.
•David Plunkett had good results with Cabazitaxel and Abiraterone, with low PSA levels and enduring benefit after 3 years.
•David Plunkett initially started with Lupron and docetaxel, which brought his PSA down into single digits but then rose after completion.
•Robert Gurmankin discussed his experiences with Abiraterone for prostate cancer, with mixed results.
•Prostate cancer treatment options and side effects. 15:59 “Testing and Treatment Options for Ian Lewington’
•Amit Gattani discusses his experience with various treatments for prostate cancer, including docetaxel, Lupron, and Zytiga.
•Amit Gattani suggests maintaining low PSA for a year and a half to increase chances of success in clinical trials.
•Brian McCloskey shares his experience with bipolar androgen therapy and treatment options for cancer patients.
•Brian McCloskey discusses using combinatorial approaches to identify potential cancer treatments with US-based firms, with quick turnaround times for recommendations.
•John Sandiford discusses his experience with cancer and how he approached treatment by identifying a bridge strategy, such as standard of care option, while also exploring new targets and treatments through genomic information.
•John Sandiford highlights the importance of having a conversation with one's doctor about various targets and treatments, and how this can open up new doors for cancer patients.
•Brian McCloskey and John Sandiford discuss bipolar androgen therapy for prostate cancer, with Brian mentioning a third of patients responding well, a third experiencing little progression, and a third seeing their cancer take off.
•John Sandiford is using Russ Hollyer's protocol and mentions Paul Van Camp as a good source for BAT therapy, with Paul having bought a J591 radio ligand therapy in Australia.
•John Sandiford is hormone sensitive and wants to delay the progression of his cancer while maintaining a better quality of life.
•Sandiford is using a non-trial approach involving testosterone propionate and darolutamide, with flexible dosing and monitoring to manage side effects and PSA levels.
•John Sandiford discusses his experience with prostate cancer, including his decision to delay hormone therapy to focus on other treatments.
•Sandiford mentions consulting with a radiologist and undergoing radiation therapy, but notes that Ian is still experiencing pain and is considering other options.
•Brian McCloskey discusses adaptive therapy with Bob Gattenby, using Abiraterone as a treatment agent, and monitoring PSA levels to determine when to switch.
•Ian Lewington shares his oncologist's receptiveness to the idea and provides information from the group, hoping to extend quality of life with new treatments on the horizon.
•Ian Lewington shares their experience with using cypionate and propionate for prostate cancer treatment, with mixed results.
•Ian Lewington suggests that propionate may be a better option than cypionate due to its shorter half-life and easier management.
•Amit Gattani shares his experience with radiation treatment for brain metastases, highlighting the potential risks of nerve compression and the importance of careful consultation with doctors.
•Brian McCloskey warns of potential cancer flare-ups from testosterone therapy, citing personal experience with liver mets. “Testing and Treatment Options for Ian Lewington’
•Brian McCloskey and John Sandiford discuss the potential benefits of Abiraterone for bone metastases, with Brian suggesting it may be a safer option than traditional treatments.
•John Sandiford mentions purchasing drugs from a steroid.click , and Brian provides a link for further information.
•Brian McCloskey provides a treatment spreadsheet to help the speaker identify different options for their cancer treatment.
•Ian Lewington is waiting for genomic testing results to further evaluate treatment options. “Testing and Treatment Options for Ian Lewington’
Full transcript
Brian McCloskey Welcome to the Cancer Patient Lab. Today we have a special guest, Ian Lewington, who has been a member of the Cancer Patient Lab for quite a while and has helped us out with managing our finances. We're thankful for that. But Ian is here today to talk a little bit about his journey, his treatment options, and tests he's had, and really to get advice.
This is what we would consider a “hackathon”, where we're using the crowd, the community in this case, to help Ian find options that may not have been on the table prior to this call. Ian Lewington 1:42 The overall rationale for this is that I've learned a lot from the group and being in New Zealand, the only approved metastatic prostate cancer drugs are Goserelin and Abiraterone.
We don't have any access to the likes of the newer drugs without being self-funded. I'm keen to get a view on potentially whether I should seek some further expert advice in the States. I've had a recent meeting with my oncologist so I'll just recap on all of that. Really quickly online my history. I was diagnosed at Novo stage for advanced metastatic prostate cancer in June of 2021, psa of 542, extensive bone Mets.
No organ involvement, Gleason nine, so aggressive. Started Goserelin and then six rounds of docetaxel, which got the PSA down and then added by bicalutamide in December of 2021. And my PSA kept coming down until about March this year. And at that point, it started to rise, albeit slowly initially up to 0. 26.
The oncologist's view is that I am developing hormone resistance and her recommendation is I move to Abiraterone and prednisone as a next stage treatment and potentially with a PARP inhibitor Olaparib, but the only issue with that is that it's not funded in New Zealand. So that will cost me about $60,000 US a year, which is pretty horrendous.
I've just had a liquid biopsy done which has gone up to Cigna, Singapore, to test for new mutations to decide whether or not it's worth adding in that PARP inhibitor. My initial biopsy showed that I had p10 p53 mutations and a couple of other mutations as a lot of people do. There are options here I have also consulted about having lutetium actinium treatment.
I'm quite keen on looking at bipolar androgen therapy given that my last PSA scan, which was about a month ago showed that bone mets were quite small with low SUV expression, around two, with nothing significant showing up, and they've all shrunk from the year before.
So the PSA rise is separate from the existing mets it would appear, and perhaps is just an indication that there's some circulating tumor cells or something that's starting to trigger a PSA rise. It's the oncologist's desire to introduce abiraterone and prednisone into the mix. But what I'm keen to discuss with the group is how that might be approached in the US. What are the options that I might consider? I can travel.
I'm still quite fit, I don't have any bone pain. There's a lot of discussion about the Mayo or Moffitt centers and other centers of excellence “Testing and Treatment Options for Ian Lewington’ and just how I might pursue treatment options given that I'm still at the initial start of what could be quite an accelerated period given the Gleason score I have. Brian McCloskey 6:32 I can maybe start us off here. I was diagnosed in 2016.
And I also had a Gleason nine, so aggressive cancer. My mets are, well, they started out being primarily our own tissue based, now there are bone mets, but they're localized. But in any event, my first treatments were surgery, radiation. Then I went to apalutamide, which is a second line hormone therapy. So, that would put that in the same category as out a rat around apalutamide. By the way, it also goes by the name of Erleada.
I believe apalutamide was very effective for me for a while. Maybe I got at least 15 months or so of benefit from that where my PSA remained pretty low. So when I say low, like below three, and then I went on a holiday. When I talked about a second line hormone therapy.
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