“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.
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). He started 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.
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?
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