“What Should I Do about My Neuroendocrine Cancer ”

“What Should I Do about My Neuroendocrine Cancer?” (Amit Gattani) [#54] Brad Power April 19, 2023 “If there is something related to neuroendocrine control, that is what is of most interest.” – Amit Gattani Meeting Summary Some advanced cancer patients find that they don't get durable responses from any treatments, and their condition continues to deteriorate.

They need to identify new treatment options while also dealing with side effects, weakening health, and blows to their resiliency. Things get even more urgent when the tumors start pressing on organs, and the cancer mutates to an even more aggressive form. Consider the case of Amit Gattani.

Amit is a stage 4 (metastatic) prostate cancer patient, who has been battling the disease for over four years. He is 53, and was diagnosed when he was 49. He is on his eighth line of treatment (including an immunotherapy trial) in the four years, and he has not found anything that has substantially reduced his aggressive disease. His PSA is in the 450-500 range.

His metastatic lesions are all in his bones, which are painful and hard to biopsy. Each treatment provides minor control/stabilization for about six months or so, and then he needs to change his treatment.

Recent additional findings include mutation of his cancer from pure adenocarcinoma to 20% neuroendocrine (a very aggressive cancer), and that cancer has also infiltrated the bone marrow, creating even more myelosuppression. Professionally, Amit is a computer engineer with over 25 years in the semiconductor industry – about half in engineering roles and half in business leadership roles.

He has a background in business, strategy, and marketing. He took off work a year ago to focus on his family and health. He has two kids in college, a daughter and a son. His wife is a physician, and many of his friends are medical experts. Amit is looking for a treatment roadmap with the help of this community. He participates in support groups, e.g., PCF on Facebook, and ZeroCancer.

In this session, Amit reviewed his recent experience and looked for feedback on what he should do next.

Amit reviewed his recent experience and looked for feedback on what he should do next. Some things have been changing very rapidly for Amit in recent weeks, and not in a good way: ● He started to feel numbness on the left side of his face, initially in the jaw area and then eventually moving to his left cheek and eye. ● His neurologist suspected compression of the fifth cranial/trigeminal nerve.

(This is the largest of the cranial nerves. Its primary function is to provide sensory innervation to the face.) An MRI confirmed it. The tumor is pushing the dura (the thick membrane that surrounds the brain and spinal cord), creating multiple cranial nerve palsies (complete or partial weakness or paralysis of the areas innervated by the affected nerve).

“What Should I Do about My Neuroendocrine Cancer?” (Amit Gattani) [#54] high dose dexamethasone (a strong corticosteroid) to manage the inflammation and is in active discussion with radiation oncology for a treatment plan. ● He started to have double vision at distance starting mid-April.

● MRI shows early signs of Meningeal Carcinomatosis (compression of meningeal lining between skull and brain), likely due to neuroendocrine cancer growth. ● He got another blood transfusion to help with cell counts (his second transfusion in April). ● He has been off treatment/chemotherapy for five weeks due to low cell counts. He is hoping to get back to treatment this week.

Amit also brought to the session recent results from conversations with his medical advisors: ● Radiation decision ● Meeting with Dr. Rana McKay of UCSD on a consultation, especially related to BAT. ● A consultation with Dr. Emmanuel Antonarakis, also on BAT.

● Review with Ally Perlina of CureMatch on his new CureMatch report (drug combination recommendations targeted at his biomarkers) Patients who are actively engaged in their care are more likely to get better outcomes. They need specific, personalized information about testing and treatment options, which can come from a community of fellow patients and hackathons.

While the group discussion may not come up with any breakthrough ideas, we hope Amit will get more confidence in his strategy and next steps from a conversation with our community.

ty of fellow patients and hackathons. While the group discussion may not come up with any breakthrough ideas, we hope Amit will get more confidence in his strategy and next steps from a conversation with our community. Testing Results The surprising thing is that there's a very low consistency between Guardant and Tempus. That makes this decision-making really challenging.

Amit’s Request Any advice on how to control the rise of his neuroendocrine cancer?

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/Prostate Cancer 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.

“What Should I Do about My Neuroendocrine Cancer?

” (Amit Gattani) [#54] Meeting Notes 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 Prostate Cancer 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. Discussion Outline 1. Introductions. 2. Journey of treatment and recovery. (5:13) 3. The endocrine component of cancer. (9:22) 4. What is the medical panel most worried about? (13:37) 5. Options for treatment.

(21:43) 6. Olaparib vs. Carboplatin. (26:04) 7. Variants of unknown significance and their value. (31:05) 8. What biomarkers do you think would work? (37:41) 9. Computational models of treatment options. (46:06) 10. Androgen deprivation therapies. (48:59) 11. Oral testosterone and PARP inhibitors.

(48:59) 11. Oral testosterone and PARP inhibitors.

(56:40) SUMMARY KEYWORDS data, point, genomics, treatments, radiation, oncologist, missense, therapy, panel, area, chemo, life, unknown significance, target, benefit, endocrine, cdk, disease, roadmap, part SPEAKERS Amit Gattani (70%), Rick Stanton (8%), Sheeno Thyparambil (6%), Brian McCloskey (4%), Russ Holyer (4%), Brad Power (4%), Jeff Krolick (2%), Richard Anders (2%) Brad Power As all of you probably know, we have two types of weekly webinar meetings.

One type is the subject matter experts, like Geete Pedersen, who's on today. She talked about genomic expression. We query them and people get an opportunity to find out what their services are. And often they can get access. The other type of meeting we have is the type we're having today, which is where a patient reviews his case. Mike Yancey, Brian McCloskey, and Rick Stanton have done that.

That gives us an opportunity to get feedback from the community. Often we find that patients have explored some of the same sorts of issues and can share their experience, what they learned, what worked, and what didn't work. Amit will be presenting his case and the questions that he has and then opening it up for comments and sharing experiences.

“What Should I Do about My Neuroendocrine Cancer?” (Amit Gattani) [#54] Amit Gattani 1:12 This is a picture of the redwoods that I took about a year back in California. I thought it appropriate for the title. I'm a visual person. I take a lot of pictures. You guys know me, but I wanted to introduce you to who we are.

“What Should I Do about My Neuroendocrine Cancer?” (Amit Gattani) [#54] This family photo was taken late last year. My wife is a physician. She's a hospitalist at Kaiser here in the Sacramento area, in Granite Bay. My daughter is 21 She's about to graduate in a month from NYU Tisch, in theater and film.

One of my current goals is to be able to travel to her graduation, which, as you will see, is not a trivial thing right now for me. I want to be able to in at least three weeks from now be in New York to see her graduate. My son is a freshman at UCSC.