“Testing and Treatment Options for Ian Lewington’

“Testing and Treatment Options for Ian Lewington’ (Ian Lewington) [#78] Brad Power and Ian Lewington November 29, 2023 “The Standard of Care offers limited options in New Zealand when you start to become hormone resistant, so I’m keen to explore all possible options.” – Ian Lewington “I was in your shoes.

How I approached it was, okay, let's do something that is within the standard of care, … and while doing that, try to identify other targets that you can go after, so you have options. And that becomes powerful because when you have a conversation with your doctor, and you talk about these various targets, and you talk about associated treatments, it can open up new doors for you.

” – Brian McCloskey 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’ (I

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’ (Ian Lewington) [#78] 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.

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’ (Ian Lewington) [#78] 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.

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.

“Testing and Treatment Options for Ian Lewington’ (Ian Lewington) [#78] 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.

ork 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’ (Ian Lewington) [#78] 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 ●Prostate cancer treatment options in New Zealand and the US. 0:00 ○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. ●Second-line hormone therapies for prostate cancer.

6:32 ○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. ●Prostate cancer treatment options and outcomes.

10:31 ○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.

“Testing and Treatment Options for Ian Lewington’ (Ian Lewington) [#78]

ions 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’ (Ian Lewington) [#78] 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 ●Prostate cancer treatment options in New Zealand and the US. 0:00 ○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. ●Second-line hormone therapies for prostate cancer.

6:32 ○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. ●Prostate cancer treatment options and outcomes.

10:31 ○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.

“Testing and Treatment Options for Ian Lewington’ (Ian Lewington) [#78] ○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 cl