Proton Therapy

For those following this part of my journey closely, I wanted to offer you an update because things have been RAPIDLY changing, and yet, everything appears to be unfolding just as we thought it would from the get-go. Weirdly, those two things can both be true.

I want to start by saying that I have put a lot of work into getting this particular treatment for myself and this treatment plan into place. Being a self-advocate and expert on my body and my disease takes hours and a lot of focus on details — which is more challenging now that my brain is much more mushy than before. A level of self-assuredness also blossoms from hearing and accepting all the support from my medical team, family, and community. I couldn’t do any of it without all the help I am getting from my community showing up for me and my family. We are turning out to be a really great team. Thank you all for sacrificing with me. Thank you for being tools in my toolbox that I can deploy when we need it most. We feel the love, and I am beyond grateful. I am humbled by your love and generosity many times a day. When you show up for us in the ways you are showing up, it allows me to be a better advocate and a better mom — my two leading roles in this journey. I never want you to think I expect the help or take it for granted. I am honored every time.

Finding the treatment

When Mass General wouldn’t take me on as a patient, I did what Hannah does…I kept pushing. My brain had just been radiated, and I was becoming more symptomatic, not less. I had started to see the information from major research institutions that LMD wasn’t something to wait patiently on. If I was going to seek more treatment beyond chemo and traditional radiation to my spine, I needed to get leg work done, now. My radiation team at Brigham and Women’s could only help so much, so doing the job was on my shoulders.

I have been going around in circles about how to say this, and I am sure I don’t have it perfect yet, but here it goes. Surgeons like to cut; they will inevitably find a surgery they can get behind. Oncologists believe chemotherapy is a tremendous systemic way of treating cancer, and they will find the right cocktail of medications to attack cancer cells. And radiologists like to radiate. But when you have radiologists who aren’t taking you as a patient or say just stay put and don’t seek anything else, it starts to feel like they don’t have hope. They know the dismal statistics, and without saying these words directly, they are saying give in to the reality of this disease and let it run its course. (As an aside, my personal doctors were not hopeless; this was from “outside” the team.) But that’s not what I want to do. I am not ready to give up or sign off. I have two children that need a mom. Other women are dying from this disease, and I don’t want this future for any of them. I want to be part of a revolution that can offer more information about this disease so that someday, there aren’t people losing their moms, sisters, daughters, and friends to this horrible disease. So, with that drive in me, I went searching…

The time that goes into seeking second opinions, new treatments, or clinical trials can be endless. It’s a rabbit hole that I could easily get lost in. My payout is hopefully more time and a good quality of life (QOL) for as long as possible, so it’s pretty hard to stop. However, I set a goal to reach out to five of the top proton centers in the US to start. First, I needed to know if they would even take me on as a patient, then would they expedite my case, and would they work with my insurance? How fast could they upload my files, images, and pathology reports? One door closed with one center that just couldn’t get my images, another door closed when the center said in their history of doing proton therapy, they have never had my insurance approve proton therapy for LMD MBC (say what?!), and the others were slow moving. Procure was the only center that actually panned out, and it was a center that wasn’t on my radar at all but recommended by Memorial Sloan Kettering (MSK) because they could move fast…and they have!

Pew Pew Laser Beams

Last week, I had the simulation and described that experience. The actual radiation differs from the simulation (and traditional radiation) in some ways and is the same in others. The parts that are the same are the basics: I lay on a table half-naked, and these friendly radiation technologists put my face mask on. They take pictures of my body and then adjust whatever part needs alignment based on those images. They leave the room, radiate me, and then I am done.

It sounds simple, but a lot is going on while I am lying on that table. My job is to embrace this mask and lay perfectly still. The mask at Procure doesn’t have any cutouts for my nose, eyes, or mouth, so it’s extra confining. I don’t have claustrophobia, but this is enough to even make me panic. I remind myself multiple times a session, “Don’t fuck this up,” because if I panic, I don’t get treatment, and they cannot give me that dose of radiation again, so I would be S.O.L. As I said, much is riding on getting the treatment and its success. The mental game is a beast.

The room itself where the proton radiation machine is located is HUGE. The device is this giant circular donut space with a table in the middle. Check out this page, which gives you an idea of how this looks for other kinds of proton therapy. My experience is similar but not exact. The video is excellent.

So, while I am lying super still, I can kind of see a black box above me that is taking the images that will help the technicians and doctors direct my body alignment. I am told there is another black box doing that somewhere else near me, but I cannot see it. The doctors are sent the images in another room and direct the technicians on how to adjust my alignment. Once perfect alignment has been achieved, everyone leaves the room, a doorbell chimes, a hydraulic-like noise shoots off, some little doppler-type poppings sounds happen for a while, another hydraulic sound, and then someone comes in to tell me that the first session is complete. That’s the upper spine, done. I can tell they are scanning something because of some beep near me, and then I am told, “Okay, it’s time to do the second dose,” which is my lower spine. Same thing as before on repeat.

From the time I am on the table to when I am hopping off to get back into my clothes, I am probably in there ten to fifteen minutes. It’s not a long time, but also, it feels like FOREVER. That mask man…it’s a weird one.

So no, it’s not a bunch of spacey laser beams shooting around me. But some pretty freaking radical science that I still don’t fully understand, blasting away cancer cells from my spinal cord.

What’s next

I’ll have a blog update for you soon with the post-radiation plan. The long and short of it is that I was starting to feel like proton therapy was my only hope, and I was beginning to doubt whether it was worth all of the effort. But as of today, I have renewed faith and hope that I made the right choice, and there is a plan to treat the LMD and the body metastases separately and simultaneously, and the new additions to my oncology team believe I have a good chance at gaining some QOL back, and I’ll get additional months with you all and most importantly with my kids ❤

New Jersey: Initial Consult

As I prepared to go down to NJ for the initial consult with ProCure, I kept thinking about how much is riding on this treatment, this center, my insurance, these doctors, and my unwavering support network. I called my sister-in-law (SIL) and asked if she would accompany me to NJ for a night. She didn’t hesitate in saying YES, and I got to work putting together our itinerary. Flying is not in the cards for me right now, so I figured a sisterly train trip was in order (I love traveling by train, btw). It was easy: bus to Boston, train to NJ, Uber to hotel, etc., etc. I had done more complicated international travel back and forth to Denmark just a year ago.

Oh but it couldn’t be that simple, right?

I dropped my son off with Grandma on Tuesday afternoon, and my father-in-law (FIL)/Grandpa took my SIL and me to the bus. Tuesday was hot and humid, so the AC on the bus was lovely.

We were all set once we navigated from the south station bus terminal to the train station, or so we thought. We headed to the train board to see what track we would be leaving from, and we were notified the train was delayed but didn’t give us a time/location for going. Alright, so we decided to wait a bit, grab some lunch, bathroom, you know, practice being patient. A hard-to-hear announcement came on at one point, saying something along the lines that there was a delay for all south bound trains and to check in with the station.

At the ticket counter, we were told that powerlines had fallen on the track in RI and that the earliest the train was expected to leave was 8 p.m. That would put us getting into NJ around 2/3 a.m. Not ideal. So my SIL thought fast…borrow a car (thank you to the couple of people we reached out to who offered a ride/car) or rent a car? We went with the rental. Ultimately, we only needed a one-way ride because a return trip was already booked the next day.

We called my FIL and asked him to figure out the logistics of getting a car from Boston Logan Airport and where the closest drop-off to ProCure would be. Then, my SIL and I hopped on a bus to the airport; halfway there, the bus stopped and told us to get off and transfer to another bus to continue our journey.

Once we arrived at Logan, we waited for ANOTHER bus to the rental car transit area. At the rental car transit area, we made our way to the Budget counter. We were greeted sweetly by a woman who asked if we were in their “Fastbreak” club…” No “… “Oh, this counter is only for Fastbreak customers.” I think she immediately saw the disappointment in my eyes, but in case she didn’t I quickly and kindly said “oh, we didn’t know. Well, let me tell you, we have had a day, and I need to get to NJ as soon as possible because I am going to start a special cancer treatment there. Can you just please help us?” And before I could finish my plead, she was already nodding her head and saying she would help us.

We scored a Nissan Rouge and set off on a bus/train trip gone road trip.

My SIL owned the NJ turnpike, and we arrived in Somerset, NJ, at the stroke of midnight. It was a lot, but we made the best of it and got the job done! She’s the best!

The appointment

We arrived at ProCure early and sat patiently in the large and open waiting area, where there were many healthy-looking fiddle-leaf fig trees. If you know me, I love a good indoor plant. There were a few other patients and staff, too, but we were so spread out that no one was close to one another. That didn’t stop one previous patient turned “educator” from sharing his stories with whom he was talking directly, but also with the ENTIRE center. I learned about prostate and anal cancer radiation treatments that day. HAHA!

My SIL joined me back in the appointment when it was my time. First, we met with a person from financials. She reviewed their billing policy and how it will all work with insurance. Then, it was time for my SIL to return the rental car, so I remained at the appointment while she departed. I met next with the radiologist, Dr. Chon, and a nurse.

We reviewed my medical history and discussed my current side effects/symptoms, what to expect on treatment days, post-treatment side effects, and how he was eager to get this started ASAP. Dr. Chon is one of the kindest humans I have ever had the pleasure of meeting. I hope that genuine heart of gold translates to really great radiation work!

Next up, we did the “simulation.” This entailed getting into a robe, socks, and a gown, and then I headed to a room with a CT machine. I had two radiation technologists working with me, and they really liked my choice of Elton John Radio to listen to while we simulated. 🙂 They first had me lay down in the same position I would be in for radiation and then customized a headrest and a full face mask (just like whole brain radiation). Once that was curing on my head, they set up my body for alignment. Nearly naked from the waist up, they adjusted my body based on where the overhead lasers were on my body. When I was where I needed to be, they did a couple of CT pictures to ensure the outside body matched up with the inside body in terms of alignment. Once that all looked good, they gave me three new radiation tattoos — one on each hip and one right below my belly button.

Then that was it! I changed my clothes, headed to the lobby, and joined my SIL for the journey home. We Ubered to the train station (which I am REALLY grateful we didn’t end up there at 2/3 AM the night before, eek!) and smoothly sailed all the way home.

Just at the sketchy train station being cute!

LMD and Treatment Changes

Thank you to everyone for reaching out and checking in with me, Andrew, other family members, and the close friends who have been on-call for us these last few weeks. It’s been a hectic, busy, and an overwhelming time — especially the last week or so.

During the first two weeks post-radiation, I was able to recuperate with a relative lack of chaos. Still, even in the somewhat stable days, many moving parts were being coordinated and researched. I was doing that with a brain that still isn’t cognitively 100% and all of the other side effects I wrote about in the last post.

But I have made progress, logistics are falling into place now, and a plan is coming together that makes sense and gives me some hope. Let’s get into it! The good, the bad, and the ugly…except not in that order.

The Ugly — When I was first told about Leptomeningeal Disease (LMD), I didn’t fully comprehend what was being thrown my way. It was entirely out of left field, and I have learned throughout August that LMD is rare — only 3-5% of all breast cancers metastasize this way, and in my subtype of breast cancer (hormone positive, HER2-), this is even rarer. We are dealing with a unicorn here, not in a good way. LMD is extremely serious and dangerous. The rapid response to getting my treatment started was appropriate for a reason. My personal LMD is also acting exceptionally aggressively, and we don’t know why. If we can’t get control of this disease quickly, this is the worst-case scenario. We have now jumped the queue on other treatment options that work well in other parts of the body to mainly focus on the LMD because I am symptomatic, and it’s spreading.

The Bad — it’s spreading. Yeah, after whole-brain radiation and a dose of Doxil, I continued to have symptoms. My feet continue to experience numbness and tingling, which isn’t resolving. I bought myself a pair of “stability-sneakers” to walk more efficiently and comfortably. At least they aren’t wicked ugly! haha! I also continue to feel off balance and have weakness in my legs and arms. My doctors have said these symptoms are the cancer taking root in my spinal cord, not the effects of the steroids or treatment. The steroids cause my jitters and cloudy mind, but anything else is really cancer itself. The scan I had two Fridays ago confirmed that the LMD was more visible and that the cancer now has left lesions on the cord itself. Not good.

Getting a lumbar puncture so that we can learn if the cancer has mutated or changed in some way. Trying to figure out why it’s so aggressive.

The Good — Now, here is where the plan and the hope come in. When considering treatments when first given the LMD diagnosis, two types of radiation were presented to me. Traditional X-ray or photon radiation to the whole-brain or proton radiation therapy. Conventional whole-brain radiation has been the standard of care for a long time and is a good option when you want to treat the whole brain because the radiation beams will not hit any other organs and will only impact the brain. Cool cool, that makes sense. But when we are talking about radiating the spinal cord, if traditional radiation is used, it goes beyond the cord, and the beams will hit the heart, lungs, digestive organs, bladder, etc. Some severe side effects come along with that, which is why traditional radiation to the spine isn’t preferred.

Proton therapy, on the other hand, has this unique ability to stop radiating at the tissue that you want it to treat, avoiding other things like those organs we want to protect. It’s very promising. Proton therapy also has a better efficacy with LMD, potentially extending my life by months, not weeks, and offering a better quality of life. So why didn’t I do proton therapy to start with? It’s not as widely available, it takes longer to map/simulate, and insurance always denies it before approving it, so that process takes TIME. I didn’t have time on my side when I was given the news. Remember, I said that if left untreated, LMD can be deadly within weeks.

There are not a lot of proton centers around the USA. There is one at Mass General (MGH) in Boston, but they refused to take me on as a patient because they don’t like to split up brain and cord treatment, and their list of waiting patients is quite long. So, I started digging elsewhere. I found that there are less than 40 centers in the country that can do proton therapy, and since this is me, I wanted to look at the best ones first. My radiation oncologist said if I could find a place to take me on as a patient, he would support it, but if I couldn’t, we couldn’t wait much longer, and my only option would be doing traditional radiation to the spine next week.

I have reached out to four centers, and eventually, one in New Jersey worked quickly and said YES to taking me on as a patient. The center is called ProCure and is in Somerset, NJ. They are given a lot of overflow patients from Memorial Sloan Kettering (which, like MGH, has a long wait list). They have been great about working with my insurance and expediting my case. The whole process has been overwhelming yet smooth with them, making me feel like my efforts are moving me in the right direction. This puzzle piece is coming together.

Right now, the radiation plan is that I will go down to NJ this coming week with my sister-in-law on Tuesday/Wednesday via train (I still can’t fly as my seizure risk is still thought to be elevated). This initial appointment will be for mapping/planning/radiation simulation. After the doctors collect all the information they need, they can do all of the calculations and get me started on 10 daily treatments beginning Monday or Tuesday of the following week. I will need to set up shop in NJ for 5 days at a time, and I’ll come home the weekend in between.

It’s a huge sacrifice for my family to support me in this, and I am so grateful for their willingness to see the hope this treatment offers, too. Andrew will remain in NH with the kids. My in-laws and close friends have been pitching in with childcare, rides, and support. We added dates to the meal train to help Andrew, too. One of my sisters and one of my brothers will split their time in NJ with me, so I have accompaniment. My mom is coming to NH to help out as well. I cannot express enough how much this all means to me. This isn’t for the faint of heart. In addition to my own Cancerland stuff, we still have a very active and full life, including my son starting a new school this fall, his 9th birthday, fall sports, music, and other activities. It’s A LOT, A LOT – ALOT.

Dr. Tolaney and me before the Jimmy Fund Telethon interview we did last Wednesday

At the game after the Jimmy Fund Telethon interview. What a fun way to say goodbye to summer!

Radiation is targeted, though; we must treat my body systemically, too. Doxil was clearly not working because the LMD grew, and according to my CT scan done last Thursday, the lesions on my liver, that were improving on Taxol, also started to grow again. Out with Doxil and in with something new.

My oncologist wanted to start me on a new chemo before radiation. Still, timing is tricky because I needed about a week of “wash-out” between chemo and radiation so that I wasn’t miserable with side effects. I was scheduled to get Sacituzumab (AKA Saci or Trodelvy) this Thursday, but I got a call yesterday saying they could fit me in today (Sunday) for a treatment. I jumped at the opportunity and received my first dose of Saci.

The chemo itself is a cousin of Enhertu (was on from January 2023 to May 2023), but it has shown to be a very effective drug at crossing the blood-brain barrier and hitting really aggressive breast cancer. It’s a heavy hitter though, and requires many pre-meds. I expect to have side effects around day 3-4 and last a few days. I am told I can expect nausea, maybe vomiting, diarrhea, fatigue, hair won’t be coming back on this one, low white blood counts, etc. You know, all of the things we think of come along with traditional IV chemotherapy.

If you’re still here reading this, I appreciate it. I will always try to text or message you back if you reach out; it might take a day or two. Please continue to send those prayers and good vibes my way. I am not asking for a miracle, just manageable side effects and a little more time with my loved ones.

Sending you all a big Hannah Hug tonight!