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!

The first set back

Since the last update, I have had 2 infusions bringing me to a grand total of 22 so far. Unlike early-stage breast cancer I don’t count down until I am done with treatment, I count up — the higher the number the longer I have been on the treatment line, which means it’s all working!

On Sunday I had my scans. The scanxiety kicked in on Saturday and stuck around until I got the results today.

Let’s get down to business: the cancer is still very small and stable. YAY! That’s always good and welcome news! Seriously, as soon as I hear “your scans look good” I am at ease. But as the title of this post says, I have received news of my first set back. I didn’t get my 23rd infusion today. I am still processing it all.

At my last set of scans, we saw some inflammation in my right lung. This inflammation is called pneumonitis, or in radiology speak it is called ground-glass opacity. The hope was that with time the pneumonitis would shrink or at the very least not grow in size. The scan results I had today showed growth. What does that mean for treatment? For today it means no infusion. I am on two drugs that are shown to have a lung inflammation as a potential risk. We don’t know which one is causing the inflammation, so Dr. Tolaney wants to stop the most likely culprit (pembro) for a period of time. The pneumonitis can be fast-acting and fatal if not addressed appropriately. In fact, one person in my clinical trial has died from pneumonitis recently. My small trial. Yikes! Dr. Tolaney is acting cautiously by suggesting I take a break from the pembro. I trust her judgment. She works with both of my trial drugs regularly and generally has a good intuition about these types of things.

In the meantime, I will still be on abemaciclib twice daily, and I am still in the trial. And in nine weeks we will rescan and see how that ground-glass opacity looks in the images. If there is a reduction of the pneumonitis, then I can resume pembro, maybe. You see, both drugs can cause inflammation on their own, but together they are causing more frequent rates of inflammation over time. So there is a possibility that the two are just not compatible for the long term. This is what clinical trials are for; so that we can learn about these types of interactions.

As of right now, I am asymptomatic, sort of. This just means I am breathing fine! In fact, I went cross-country skiing two weeks ago and felt great! I have a lingering cough from a cold virus I had at the start of the year. The cough could still be a result of the cold, or it could be a side effect of the inflammation. In the next nine weeks, if the cough doesn’t extinguish itself, it’s likely from the inflammation. If the cough persists or gets worse, or if I find myself in a situation where I am having trouble breathing, I will get scanned before the nine-week mark and we will proceed based on what those images show.

I always leave my oncology office with hope and a plan. Even today I left Dana Farber reminding myself that this isn’t terrible because this isn’t a progression of cancer. All in all, I am doing pretty good. Hopeful that we caught the inflammation early enough that I won’t see any more growth and hopeful that I will remain asymptomatic. But as things go, I am reflecting back to my appointment and I can’t help feel the good with the bad. Although my oncologist doesn’t seem alarmed or even worried because we are moving forward with caution, I still feel a bit defeated.

I am so happy that this set back isn’t cancer growing. But I have high hopes for immunotherapy, which is why I want to be on the drug so badly. I think the abemaciclib is likely the drug that is shrinking my tumor sites so much, but I think that if I have a fighting chance of many years without active cancer ahead of me, it will be because of immunotherapy. There is something just magical about the idea that one’s own body could be jump-started to heal itself.

Tonight I am going to give myself permission to be disappointed. And tomorrow I am going to will myself back into a place of hope and healing.

ef02c3cd-0097-4cf5-b054-c3f210a9c3e8 — From infusion #22, three weeks ago

It’s been a long time

Hi friends! It’s been a while since I last posted and I hope you haven’t missed me too much 😉 Since April, not a ton has happened on the cancer front, and with that, I stepped back a bit and just focused on life. So what have I been up to you ask?

We went to the mountains of Maine for April vacation (thank you to friends for letting us borrow your condo). That was a very welcome vacation. Sometimes just a lazy few days away from home is what I need to recharge. No laundry, no major cleaning, no plan…just a few days to sit in front of the fire to read, play games, go bowling, and venture out to grab a bite to eat. It was forced relaxation at it’s finest!

57791598931__18413708-15a1-4e87-94e5-30688490530d — Reading, tea, fire

Both kids started up with spring sports. It has been so fun to see them practice new skills and work on sportsmanship. Four (nope five) out of seven days are sprinkled with sports practices and games. Spring is always a busy time for us, but it is an enjoyable time as we emerge from our winter hibernation to play in the sunshine.

I went to a breast cancer camp a couple of weekends ago. I went with three of my best NH cancer buddies. We road tripped down to the Poconos on a Friday and home again on Sunday. It was a quick trip, but we talked about everything under the sun, listened to a bunch of true crime podcasts, and danced our butts off at a radical flower power party on Saturday night.

In cancerland things have been going pretty well. Today I got my 10th (TENTH!!!) infusion of pembrolizumab, and I am starting my 10th cycle of abemaciclib and anastrozole. I have been on (this) my first line of treatment now for seven months. That feels really amazing and exciting to say out loud. The great news is that with every scan there is less and less tumor to measure.

This last Sunday I had scans, and per the usual, I was an anxious mess. When I started this chapter of my story, I put this arbitrary timeline on my experience that I wanted to reach one year on this line of treatment (I mean I want much longer, but not a minute shorter). So with each cycle, I am crossing fingers, toes, legs, positive vibing as best as I can, and praying that I won’t hear the word ‘progression’ from my oncology team. This week I got good results again: a teeny tiny bit more shrinkage! YESSSSSS!! **Insert major sigh of relief**

There continues to be sclerosis in my bones. Which if you remember, with all things considered, since things are shrinking elsewhere we are assuming sclerosis means healing. Sometimes healing can be painful; sometimes, it feels like nothing. I have been experiencing pretty awful lower back pain for a week or so in my left iliac crest, and this is one place that my CT shows increased sclerosis. My NP spoke with the radiologist, and they said, for now, they are ruling the pain as sclerosis due to healing. If the pain doesn’t clear up or it gets worse in the next few weeks, I will need to go back in for more imaging, but for now, we celebrate what is likely healing.

At each appointment, we go through my side effects of the medication. As always, gastrointestinal issues still plague me. Cycle eight was actually really well tolerated, and I felt decent for that cycle, but quickly that changed with cycle nine. Without going into significant detail, let’s just say I was in the bathroom a lot. My team monitors my output very closely, and if things get too severe, I have to take a dose reduction of my abemaciclib. Today my NP and research nurse (under the guidance of my oncologist) decided that instead of dose reducing (which I REALLY don’t want to do), they want me to take a half dose of Imodium, every other or every day. I hate taking Imodium, but if that means being able to remain on the highest dose of abema, I’ll do it. **Grumble grumble**

That’s about it for now folks! Andrew and I are taking a short trip to NYC this weekend and leaving the kids behind with my mother in law ❤ And then at the end of June all four of us will be departing on a trip for the PNW to visit family.

Wishing you all the very best final weeks of Spring!

What is my treatment?

This first part has a lot of sciencey lingo. I have tried to make it digestible, but if I have failed, read towards the bottom, there is a more synthesized version of my treatment plan.

Before the beginning: When I was initially diagnosed, I was under the impression that I would be doing hormone therapy alongside a drug classed as a CDK4/6 inhibitor. That is the standard of care for hormone-receptive MBC patients right now, as the first line of treatment.

In September I was given Zometa, which is a bone strengthening drug. I was also given my first injection of Lupron. Lupron is an ovarian suppression (OS) drug that shuts down ovarian function. This shuts down the largest producer of estrogen in my body, essentially cutting off my cancer’s food source in a significant way. Doing OS also puts my body into menopause. Menopause at age 34 comes with a lot of side effects and worries. More on this in a later post.

The beginning: Last week when I came in to get my second Lupron injection and to start on the other medications I was told that I was eligible for a clinical trial. A spot just opened up. I will post a full link to the clinical trial on the documents page for those that want to read it. Essentially the trial is adding an immunotherapy drug to the standard of care I was already planning on doing.

Immunotherapy has a lot of promise. I was very excited that this was an option for me. It’s a drug that allows my own immune system to fight the cancer cells.

The treatment plan right now: Currently I am on track to have immunotherapy every three weeks, Lurpon every month, Zometa every three months, and daily I will be taking an aromatase inhibitor (AI) and the CDK4/6 inhibitor.

If that felt like I was speaking a foreign language, let me make it a little easier to understand. The OS and the AI make it so there is less food produced and available for my cancer. Those take away a lot of the food supply. The CDK4/6 inhibitor works as a sort of breaking mechanism, slowing down the cancer cells rate of growth. And the immunotherapy works at activating my immune system and allowing my own body to fight the cancer cells. We are attacking this cancer from all different angles.

When cancer comes back so quickly and aggressively, it’s necessary to attack it from different pathways. And that is what is happening with these therapies. I will be on this clinical trial for as long as it is working for me. I am hopeful that in 6 weeks when I have scans, that I will see no progression of the disease in my body.