joelle kaufman, January 12, 2023 - Caring Bridge Post
Long - but chock full of details.
Big day - yesterday, we met with an incredible UCSF breast oncologist who will lead this effort. Just before meeting her, I had my prescribed PET Scan. That's a new experience - I was actually radioactive for an hour (or "hot," as my good friend Jordan called me) while radioactive sugar coursed through my body so that any cancer metastases would gobble it up and glow. Good news - PET Scan is clear. What a relief. We're dealing with a solid tumor in the right breast that invaded the lymph node right next to the tumor. My sister-in-law educated me that anatomy is likely why that lymph node was invaded - the tumor is very close to all the lymph nodes that serve the breast tissue.
The UCSF breast cancer team had the best response to my questions about the lymph node - it really doesn't matter. What matters is how the cancer responds to the treatment. Based on tumor response, my time in the batter's box would be longer or shorter.
Unlike when my mother and sister were treated, the prevailing protocol now is to do chemo and immunotherapy before surgery so that the medical team can monitor the response of the cancer to the treatment and adapt the regimen based on the response. The goal is a pathological complete response (PCR). That means no evidence of cancer in the post-surgical pathology analysis. Although my tumor is aggressive, that's common with BRCA1 triple-negative tumors. Those tumors also love to gobble up chemotherapy and immunotherapy. So, the medical team is very positive that they can achieve a cure. I'm blown away because the word cure wasn't used when my mother went through this in the 80s. At 37 years of survival, I think she's cured. :-)
The recommendation for me is high-density dosing (every week) of Taxol and Carboplatin for 12 cycles (I think) concurrent with immunotherapy - Pembrolizumab (brand name Keytruda) every three weeks for a year. Then, we'll have an MRI to see how the tumor is responding. Based on the response, the next cycle is 4 cycles of AC - doxorubicin hydrochloride (Adriamycin) and cyclophosphamide. Both my mother and sister were treated with AC (I think). It's pretty brutal. I'm preparing myself mentally for needing AC.
The surgery will be scheduled for 3-4 weeks after the last chemo cycle, pending my body's strength. I'm planning the same procedures that would be done on Tuesday before fate throws a curveball.
UCSF has some technology to help with side effects and other recommendations. Their Mission Bay infusion center has Digicap - basically a head cap you wear that is connected to an oversized air conditioner and keeps your scalp cold to help preserve your hair. Somewhat effective with Taxol and Carbo. Less so with AC. Taxol has neuropathy potential (pins and needles in hands and feet) - but ice mittens and ice socks reduce that risk. So I'll be wrapped in a warm blanket while freezing my head, hands, and feet. Quite a sight, I'm sure. The fatigue will likely be the worst - I'll need to listen well to my body and rest as needed. Oh - nausea - they're going to give me lots and lots of drugs for that - including Cinvanti, which is the same type of drug as Emend, which worked well for Tracey. Mouth sores are another of the common side effects - so apparently, I'll be eating bland, cooked food and using something called magic mouthwash. That is not the THC type (although we'll use that too). Sounds like the first trimester of pregnancy except for the THC, right?
A request - please do NOT send me links or articles about the other side effects (the doctor reviewed all of them, but the probabilities are low) or different regimens. There can only be one team leader, Dr. Jo Chien, not Google. We appreciate the intent of sending such things, but we ask that you let us ask you for research rather than push it on us.
Next steps - I told the doctors I was happy to start today, and they chuckled. There are a few steps before chemo can begin:
Pet scan results (COMPLETE and EXCELLENT)
Pathology slides must be retrieved from Mills Hospital and sent to UCSF; UCSF pathology must review them. This is likely the rate limiter. UCSF has requested them.
Blood tests - counts, and the like - are scheduled for Friday in Redwood City.
Echocardiogram (can be done during the first phase as it is relevant to AC, which has significant cardiac toxicity)
Port procedure
Chemo will start either next week (unlikely) or the following Wednesday (likely) based on the path review.
I'll talk with the oncology nurse today to learn more about the protocol and create a schedule. I will ask people to drive me to and from Mission Bay, hang with me (and switch out the ice packs in the mittens and socks every 20 minutes). We'll need dry ice for the cooler for each of those infusions. They'll be watching my platelets (infusions are possible/probable - please donate blood) and my white cell counts (likely giving me a growth stimulant for that when needed).
The 3-way infusions (when I get all three drugs on the same day) with the Digicap process will likely be about 5 hours. I aim to do them on Wednesdays so I can see my oncologist while I'm there. They'll be shorter when it's just Pembro or Taxol/Carbo.
I'm encouraged to exercise and eat normally. I'll be allowed to travel provided I feel up to it (the trip to Florida in March to see Taylor play baseball is a goal). In working through the likely calendar, the surgery will probably be at the end of May/June. My red and white blood cells can sustain the dense dosing (assuming we do the AC - if not, surgery would be 1-2 months sooner).
It was a lot to absorb. Having Neal and Heather in the room was very comforting. Being allowed to use Otter.ai to record and transcribe the discussion was extremely helpful.
The delays in the Pet Scan procedure and trying to get from Van Ness to Mission Bay at 5pm were stressful. I felt guilty for keeping these world-class doctors waiting despite having no control over the Pet Scan timing. I didn't want the doctors to leave and delay the next pitch. I was not in control at all, and it was frustrating. When we got to UCSF, the lobby was empty. Were the doctors still there (they told me they'd wait, but I was over an hour late!).
One person was doing an admit check-in…and they were waiting for me. Incredible and unexpected. In retrospect, we could have had the meeting at the next clinic, but I think my anxiety might have reached atmospheric escape levels if I had to wait another week. I feel for everyone who experiences delays connecting with their oncologist - and for the oncologists who must deal with hyper-anxious, scared newly diagnosed patients in a rush squeezed into their packed clinic schedules.
My medical team is highly informed, experts in my disease, and confident they can cure it. This is amazing, lucky, and unusual - if a patient doesn't live near a National Cancer Institute, explore a telehealth second opinion from one! Doctors are often happy to collaborate - especially with the recognized leaders in the disease you are trying to obliterate. It's not an insult to get a second opinion and ask for collaboration - this is my curveball, and it's my life.
I'm bummed that my next few months are going to be as a cancer patient, and I hope the side effects aren't too taxing or disruptive. That said, they are temporary (there are a few that aren't, so we'll prevent what we can and pray the rare ones aren't a factor). This means by my birthday in September 2023, this will hopefully all be in the rear-view mirror. Neal and I can celebrate our 25th later (or around April 4 in a low-key way and later in the year in a more significant way).
Thank you as always for your support - your comments, texts, emails, memes, shows, books, and podcast recommendations help. Thank you in advance to those of you who can and will be part of the infusion support team, as you will be invaluable. All of you are precious to us, and your love strengthens me.
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