Kicking Cancer

Come with me as I travel to Mayo for my clinical trial. It isn’t easy logistically or emotionally to keep leaving home and spending long days at the hospital waiting to meet doctors and waiting for scan results on MyChart. But I will keep doing it as long as there’s a chance that it keeps my cancer stable. According to a PubMed article about Alisertib (https://pubmed.ncbi.nlm.nih.gov/25728526/) 18% of participants with BC reacted positively and this was back in 2013. Surely the odds are higher now because they have had time to finetune the formulation.

The best case would be NED (No Evidence of Disease) or NEAD (No Evidence of Active Disease) but I will also take a stable, non-growing outcome. If the cancer maintains status quo and isn’t growing then it is considered a successful outcome. However if it shrinks in one area (say, the liver) and grows in another (the bones) then it is considered to be not working and they will take me off it and we move onto the next therapy.

My Cancer Story Part 1

When I was 40 years old and went for my very first mammogram after COVID lockdown restrictions had been lifted, the nervous technician spent a long time manipulating my breasts before sending me to the ultrasound room for a better read since I had dense breast tissue. After what seemed like an eternity on the table waiting for her to return, I was given my breast cancer diagnosis for the very first time. She confidently announced “It’s the C-word!” as soon as she breezed into the room where I had dozed off. I guess there was no need to wait for a biopsy to tell me that the tennis-ball sized lump in my right breast was cancer. The bigger question was why my OB-Gyn had never done a manual breast exam at any of my annual checkups. Or why I had completely ignored the lump that had steadily grown during the previous 5 years from what I had thought was a clogged milk duct to a coin-sized inconvenience to an itchy throbbing mass that was hot to the touch.

Living from scan to scan is exhausting and also, living in limbo is no way to live. If I get two great years on this drug, do I want to spend those years in two-month increments waiting for the next scan results? To me that seems like a tragedy even worse than death. September 2025 has completely revolved around cancer but I am not going to let it rob me of any more time this year. It doesn’t matter how much time I have left. All that matters is how I choose to spend it. I’m not going to let this disease take any more time from me than it already has.

(The doodle below is while talking to my therapist about this today. Her suggestion: buy the ticket even if you have to pay extra to make sure it’s refundable, apply for the job even if you only do it for four months before taking a leave of absence, plan the dinner even if you have to cancel at the last minute because you feel sick. If uncertainty is your new reality, find ways to make it work without missing out.)

Stage 4 needs more. More funding, more research, more drugs. More lines of treatment before chemo or chemo-like drugs have to be used. More understanding of the emotional and psychological impacts of chronic illness. More safeguards against the toxicity of constant scans, radiation, nuclear medicines. More comprehensive data about genetic mutations in different racial groups (especially South Asians who get diagnosed at a later stage than other groups.)

Since I am incapable of understanding anything without diagramming it, this is my Alisertib schedule for the next couple of months. Green designates the days I have to take the medication. The scheduling is intentional and allows my body to get a break in between doses and cycles so my neutrophils can recover and other symptoms are minimized. The purple circles are days I have to be at Mayo for appointments or scans or research visits. And the red planes are travel days.

Every two cycles I will get a complete set of CT/PET scans which is standard protocol to see progress. Since Dr. Goetz promised to “watch me like a hawk” he also promised a tumor marker blood test every cycle. For breast cancer it’s a CA 15-3 test which measures the amount of cancer in the blood. My baseline is 100 and I am excited to see what this will be in October.

Why didn’t Kisqali (with Examestane) work for me as my first line of defense against Stage 4 breast cancer?

When I was initially diagnosed with Stage 2B breast cancer in May of 2021, the CT scan showed nodules in my lungs. Lung nodules are tricky because they could be anything - residual scars from infections, viruses or they could be metastatic cancer cells, which is what they probably were in my case. My oncologists kept a close watch on these lung nodules with bi-annual and then annual CT scans over the last four years. Last year (Jan 2024) they showed slight growth.

Unfortunately my oncologist at the time, Dr. DeFusco (who has since retired) told me not to be concerned. In April 2025 when I repeated the scan and they had grown yet again, she had already retired:

Her replacement Dr. Morganstern, was concerned enough to order a biopsy, the EBUS that revealed I was Stage 4 (a different post on that traumatic day later). But what if I was Stage 4 all along (also known as De Novo Stage 4)? Mrinal thinks this was the case and that the treatment was keeping it at bay, until it stopped working, as all cancer treatment eventually will. The treatment (after the trifecta of surgery, chemo and radiation) I was on after my 2021 diagnosis included Verzenio (abemacilib) and Tamoxifen (endocrine therapy.) This regimen is almost identical to the treatment I was on after my Stage 4 diagnosis of Kisqali (ribociclib) and Examestane (endocrine therapy.) So of course it wouldn’t work because it had already delivered its payload and kept my cancer in check for the last four years. 

Question 1: why did you use Kisqali (ribociclib) as your first line of defense for Stage 4 if you had already used another -ciclib drug Verzenio (abemacicilb) earlier? 

Answer: it’s standard of care to use Verzenio as adjuvant therapy (typically two years) and Kisqali for first line Stage 4 therapy. Nothing in my biopsies indicated I should do differently. 

Question 2: is it true that as you get further along your treatments will last shorter amounts of time? If your first line only lasted two months what does it mean for the next line? 

Answer: False. You have to look for the right treatment. your fourth or fifth line could be the one that you are on for 5 or 15 years. 

Question 3: If your lung nodules were growing in May of 2024 why didn’t you do anything about it then? 

Answer: this is the million dollar question. They were still micronodules and too small to biopsy. And my oncologist at the time, Dr. DeFusco, erred on the conservative side. Hindsight is always 20-20 though and we probably should have done a PET scan or a liquid biopsy but she wasn't on board:

Cycle 1, Day 3. Back in the clinical trial research room with my bed and warm blanket. I had my pre-dose blood test and EKG and am waiting three hours for my post-dose blood test and EKG. Then I run to the airport to catch my flight back to NYC (shout out to my travel agent Manav who is always on standby fine-tuning my flights at the last minute.) So excited to spend the weekend at home with all my loved ones before I have to come back again next Monday. And the Monday after that.

I have officially been screened and approved for the Alisertib Phase 2 clinical trial for HR-positive, HER2-negative metastatic cancer patients at Mayo clinic and I start my first cycle next week, on September 9th, 2025 (Day 1).

My neutrophils almost didn't cooperate and meet the screening critera until a few days ago. It has been three weeks off Kisqali and my white blood cell counts are still low - proof of what a toxic drug it was.

The first cycle of the clinical trial is going to be very demanding and I will be spending Day 1, 3, 8, 15 (not listed, for Fluvestrant) and 18 in Mayo which means Mon - Thur next week, Mon the week after and Mon - Thu the following week. Then I get a week break and then Cycle 2 starts. It was almost enough to deter me from pursuing this treatment but then I remind myself that the alternative Dr. Robson (MSK) offered was Enhertu/chemo and I want to avoid that as long as I possibly can.

The reason why I am a good candidate for this trial is because even though my cancer is strongly hormone positive, it appears that hormonal therapy isn't working anymore, given the recent progression in the liver and lungs from my August scans. Since 2021 when I was first diagnosed with Stage 2B, I have had: Lupron (monthly injections to stop my ovaries from making estrogen,) Tamoxifen & Aromatase Inhibitors (blocks estrogen from binding onto cancer cells); and since May when I was diagnosed with Stage 4, I have had a bilateral oopherectomy (removal of both ovaries laparoscopically) and been on Examestane (blocks estrogen being produced by the aromatase enzyme). There is not one ounce of estrogen left in my body for the cancer to feed on and yet it keeps growing - the only possible reason we figure is because it has become resistant to endocrine (hormonal) therapy. Alisertib may help resensitize these cancer cells:

“No,” I say, remembering the ordeal that was the month of May 2025, and tell him I have been here a dozen times.

I was really really reluctant to come back to Mayo for treatment, but my cancer has left me no other choice. Two months on Kisqali proved that not only did that drug not work but my cancer has been aggressively progressing in my liver and my lungs while on it. Now my liquid biopsy results are telling me that 37% of my blood is made up of cancer cells (called the Tumor Fraction), up from 11% in May. And still there are no actionable mutations. There is nothing for science to target to control the cancer. Even Dr. Goetz, the breast cancer oncologist at Mayo and the expert in his field, is perplexed by the behavior of my rogue cells: it is not showing any endocrine mutations yet endocrine therapy is not working. He wants me to take part in a clinical trial that combines a drug called Alisertib, with Fluvestrant. He has seen some success. Mrinal tells me his friend Paarul has two progression-free years on Alisertib. If it works for me I can have two nearly symptom free years before moving onto the next course of treatment.

Dr. Robson, my oncologist at Mayo wanted me to go straight to chemo when he saw my scans two months into Kisqali. He suggested Enhertu which is actually an antibody conjugate, not chemo proper, though it has several similar symptoms. I am HER-2 ultra low so it would only have about a 30% chance of working but it was the safest bet in his opinion, to get the cancer under control. His team was surprised that the only symptom I had was fatigue. “No nausea, cough? No pain?” they kept asking me. My blood work does not look like the blood of someone with rapid cancer progression. All my markers are good and I am healthy enough to undergo chemo, in fact now is a good time since recovery is easier for a healthy person.

I was sitting with Nurse Amy and getting fitted for a cold cap when Mrinal called to tell me about the Alisertib clinical trial at Mayo. I swerved so fast for the exit sign, I practically threw the cold cap back in Amy’s face. Anything but chemo. I’ve heard that tune before and I don’t like it.

So here I am, in the uber heading back to Rochester. No Priya or Genie this time. Putting all my hopes into this drug which has as good a chance of working as anything else. Feeling a bit like an ant that’s fallen into a deep crevice and is trying to find its way out. The odds don’t seem to be in my favor but my willpower doesn’t care. My brain and body don’t seem to have gotten the memo that they are in trouble. My relentless refusal to accept what I don’t want to hear seems to be working in my favor. I’m not sure if it’s optimism or just a stubborn will to keep living, my way.