"The Reset" (Marissa — Part 2)

RANDI:00:01

Welcome back to Changed By Cancer. I'm your host, Dr. Randi Paynter. Last week, we heard Part One of Marissa's story. After more than a decade of navigating progressive Multiple Sclerosis that eventually required full-time wheelchair reliance, Marissa received a stage III breast cancer diagnosis. Today, in Part Two, we explore what happened when Marissa began cytotoxic chemotherapy. Instead of debilitating her further, the treatments designed to destroy her cancer began systematically halting her autoimmune disease, leading to an extraordinary physical recovery.

First, a quick reminder. I am a cancer epidemiologist, but I am not your doctor or clinician. The conversations we have here are about personal experiences and systemic issues in healthcare. They're not medical advice. Please consult your own medical team for any health-related decisions.

Here is Part Two of Marissa's story.

One thing that I know but we haven't mentioned yet for the interview is that your husband is a physician, so you have kind of like an inside medical edge, but that inside medical edge hasn't really afforded you access other than being able to afford treatments. But it doesn't afford you any other kind of access in terms of getting the drugs or the treatments that you need.

MARISSA:01:47

No, you are just — You're on your own. I mean, if the neurologist is not able to give her, give their patient the medication that they want, how is the patient supposed to be able to get it? It is amazing that you could even buy a medication out of pocket and not take it if it's an infusion. That was a really interesting thing to learn. That you can buy the bag of medication and it's not going to do you any good.

RANDI:02:40

It really sheds some light about the forces behind the system in this country and what really moves it.

MARISSA:02:48

And I think when you're talking about specialty medications, that's — you really are at the mercy of the drug manufacturer and the insurance. It just isn't the same market. It's a totally different world. If you look online at the prices of the medications that treat multiple sclerosis, you'll be amazed to see that they go up in price consistently year after year after year. I think it's the only case of medication doing that.

RANDI:03:38

You're a trained pharmacist. You live in this medical world. Your husband's a physician. You're fluent in all of this stuff, yet it's still challenging to remember the details. What if you're a person that doesn't have that health literacy? What if you're having to deal with these insurance companies after coming home from working three jobs?

MARISSA:04:03

They are thrown to the wolves and then some. Like, they are just completely overlooked. I can't even imagine. Yeah, coming from about as privileged as you can as far as money, connections, and we're struggling. I don't know what, I can't imagine what people are doing. I mean, the saving grace that I can think of, at least in my experience, some of these drug manufacturers really do go and help patients.

RANDI:04:54

So let's talk about your breast cancer care team. When you first got your diagnosis, how did you go about finding an oncologist and a care team, and what did that look like?

MARISSA:05:07

When I first got my diagnosis, I was really feeling regret about not valuing my life. And I apologized to my nurse practitioner about it. Like, "I'm so sorry I was so down on things." When I saw my the breast surgeon she worked with, I was still kind of in a down state of mind. And when I talked to him and he told me that we had a plan and that we would do chemotherapy and have surgery And I remember asking him, "Should we even bother? Is it worth it to do these things for me? I mean, look at me. Like, why would we even want to bother?" And I remember him being a little angry with me for saying that. And then I was starting to feel bad about having such a negative attitude about my life, and I was starting to realize that my life was truly precious, and I didn't even know it until it was too late.

The breast surgeon that I met with the first time gave me a list of oncologists that he recommended, and I scheduled an appointment with one of the oncologists, and at that point he left. He was done. I had one visit with him and he was starting in a new practice elsewhere, which was really crazy. But I went to my oncologist, and my first visit with her, I didn't know if I was stage III or stage IV. My oncologist was really, really worried about treating me, because I was weak from multiple sclerosis and in a wheelchair, and she was terrified about what the chemo was going to do to me because I was already in such a sick state. So she was treating me the way she would give care to her elderly patients, like a gentler trajectory. So the breast cancer that I had was estrogen receptor-positive, so the standard treatment for that is what's called ACT therapy, Adriamycin, Cytoxan, and then Taxotere or Taxol, one of the two Ts. So her plan was to give me each chemo on their own every two weeks, as opposed to Adriamycin and Cytoxan together every three. So she was planning a gentler course. And she would always consult with my neurologist before ever giving me any treatments, so they worked together. And, my neurologist happens to be married to an oncologist who treats breast cancer, so she would bounce ideas off of him as well.

At that time, I wasn't driving. I couldn't drive anymore. I had no use of my legs, and I had a lovely woman that my friend connected me with who was my driver, and and she was amazing. And, I really appreciated all that she did for me, picking me up, taking me to chemo, driving me back. It was a real help. And, at that time, my daughter — my youngest — took a bus to school, and my big dream was to be able to one day drive to the back gate of my community and pick my daughter up on days when there was rain. That's what I was dreaming of one day.

Anyhow, I went through the course of chemo. I started off with Adriamycin. Actually, it's — they don't use that brand name anymore, so it's just the generic doxorubicin. And that's the medication that they call the “Red Devil” because it's bright red, and it has really strong side effects. There's some cardiac toxicity with it, and it's not an easy drug to take. And for me, the experience was not bad, because the more I got it, the better my MS symptoms would get. So yes, I lost all my hair, but I felt good, because the absence of symptoms is a relief, and seeing improvements in my movement was an amazing thing to go through. So to me, the chemo was a healing experience. I felt good from it. And I think that was a first for my oncologist.

RANDI:12:08

Is that an off-label use for the doxorubicin and cyclophosphamide for MS?

MARISSA:12:15

My breast surgeon told me that she had a patient with Crohn's and that the chemo put it in remission. So it wasn't something she hadn't heard of. And after I got through all of this, I looked up different articles, and there is a case study of patients that had multiple sclerosis who were then treated for certain cancers, including breast cancer, and the chemotherapy halted everyone's multiple sclerosis progression. It is in the literature that doxorubicin and cyclophosphamide have been used for aggressive forms of multiple sclerosis. I think that I remember my breast surgeon asking my oncologist when I was done with the chemo, "Maybe she needs to stay on the chemo indefinitely." And I remember pointing out to her that the way chemotherapy works for autoimmune is that it's a reset. So, for example, the Mavenclad that I took is a new category of treatment for multiple sclerosis. So, most of the treatment for multiple sclerosis is known as a DMT, or disease-modifying therapy. These are things that halt the immune system from attacking. The new category is called IRT, immune reconstitution therapy. So Mavenclad is one of those. Stem cell transplant is another form of that, and it's thought of as a battery pull. It basically — you wipe out the immune system, and then you start it over from scratch, and now you're producing blood cells — white blood cells that don't attack. And that's really the thought behind a stem cell transplant or the immune reconstitution therapy. So I was — I tried to explain that to my breast surgeon, like, "I don't think I have to keep taking it. I think my immune system is good now. You fixed it." So, I don't know that they... It's all speculation. You know, I would say to my surgeon, "Why aren't you telling people about my story?" Or, "Why aren't you... why aren't people researching this?" And her explanation was like, "You're just one person. We don't know that much about you. You're not a clean slate. We don't really know what's going on with you, so we can't really use this information." And that's that. That's her point. And, and she's right. There has to be some protocol for scientific research. It can't be a word-of-mouth thing. It can't be a single case study. But, as you've said to me, maybe it's the spark that would make someone think to delve into scientific research in that direction.

'22, yeah. My last course I think was the end of '22. Then I had a mastectomy in '23. Oh, before I had the mastectomy, I finished the doxorubicin and the cyclophosphamide, but I hadn't tried the T part of the ACT therapy. It's Taxotere or Taxol were the two choices, and my oncologist said after the mastectomy they would look at my lymph nodes, and if my lymph nodes were all clear after the chemo, I was done with chemo. So I had the mastectomy, and they did the biopsy right there. And when I got through it, I found out I did have lymph node involvement in the first two of the chain of lymph nodes so that they wanted me to continue with one more course of chemo. And I remember crying because I was like, "Oh, I failed. I failed." And my oncologist said to me, "Okay, maybe you didn't hit a home run, but you got to third base, and that's really good." That was her making me feel better about it. So I had been hopeful. The tumors shrank pretty rapidly from the chemo, actually. So everyone was pretty hopeful, but I did have two lymph nodes that were still involved. So I was going to try that third chemo in the ACT regimen. So my oncologist and my neurologist kind of bounced ideas off of each other, and they decided I would go on Taxotere, docetaxel, because it's less neurotoxic. It has a lower, occurrence of neuropathies compared to the paclitaxel, Taxol. The only problem with the Taxotere is that, well, I mean, it can still cause neuropathy, but the other concern is that it can cause permanent baldness. So for me, I was like, "Oh, geez, I, you know, I just lost all my hair. It's starting to grow back. I really don't want to lose all my hair — and even permanently."

RANDI:20:20

What Marissa observed during her chemotherapy regimen aligns with a major paradigm shift in autoimmune neurology, known as immune reconstitution therapy, or IRT. Traditional MS treatments are disease-modifying therapies, or DMTs, that continuously suppress specific parts of the immune system day after day. In contrast, pulse chemotherapies like cyclophosphamide, cladribine, or high-dose conditioning before stem cell transplants act as a biological ‘hard reboot.’ These cytotoxic agents transiently deplete mature autoreactive T- and B-lymphocytes, the exact immune cells mistakenly attacking the central nervous system's myelin sheath. As the bone marrow regenerates a new lymphocyte population, the immune system is essentially re-educated, leading to long-term disease remission without ongoing daily immunosuppression. While cytotoxic chemotherapy carries significant systemic risks, Marissa's experience vividly illustrates the deep biological overlap between oncology and autoimmune immunology.

MARISSA:21:46

I decided to try cold capping, and I did not know how complicated a process it is.

RANDI:21:59

Can you walk us through that? Because that's not something that we've gone into in any depth on this podcast before.

MARISSA:22:07

When I was looking into cold capping, the first thing I needed to do was find a nurse or family member who would be willing to be there with me to change the cap every, I think maybe, 15 minutes. I'm not sure. You have to — It's a whole big process where you change the cap and you need people to help you. And you also have to buy maybe 15 — no 50 — pounds of dry ice. You have to have a resource that can provide you with dry ice. It's a very heavy amount, so you have to make sure that you have a company that can get you dry ice. It's a whole big procedure. At that time, I couldn't find any nurses that were available anyway. I was calling to find people, and I could not get anyone. And I did leave a message with one company called Arctic Cold Caps and they called me back, and the gentleman that was working there told me that he had a new device that was a portable cold cap machine that did not use dry ice. It was like a very powerful air conditioning system, but it got your scalp to a freezing level, and you took it with you. Part of the problem with the cold capping is that you have periods where you have to take the cap off and change it, or driving from the place — driving from the oncology office to home — there's a period where you're not keeping your scalp frozen. There — it's not as effective. This thing, you leave it on your head. You can take the device in the car with you. It can temporarily use batteries. You can charge it back in the wall. It's extremely convenient, very easy to use. It was not a cheap thing, but if they are able to get this to centers where they can share, where people can borrow it, and then the next patient gets it, you could really get the cost down to what you'd be paying for other cold capping. It doesn't have to be such an expensive thing. The more that people are using these, the better the prices will get. If it becomes mainstream, it's not going to have to be an expensive thing. There are cancer centers that have these machines in their center. You just have to use it in the center. But if one place could rent one of these machines and people could borrow it, you only need it for those few hours that you're going through chemo. And then — I think it's like a six hours you need it — they could totally share it with people. It could be something that people share. It wouldn't have to be so expensive. It really honestly works. It sounds like, how could it be? But it freezes your scalp, and the blood vessels that go to your hair are shut down and no chemo gets through. And it saved my hair.

RANDI:26:47

Because that's a really high social and emotional cost of chemotherapy and breast cancer and other types of cancer, but especially for breast cancer.

MARISSA:27:00

I have the ATM mutation. I forgot to talk about that. Okay. When I was first diagnosed, one of the first things that my nurse practitioner did was get a genetic profile of me. And it turned out that I have a genetic mutation that makes me more susceptible to getting breast cancer. It increases my odds... Okay, this is complicated. I'm going to need you to explain the statistical part of it better. But on the sheet of paper I was handed, it said anywhere from twenty-five to fifty percent increased chance of getting breast cancer if you have this mutation. In a way, it was reassuring to hear that because it kind of took it off me that somehow — I don't know — I had something to do with getting it.

RANDI:28:15

During her diagnostic workup, Marissa tested positive for a mutation in the ATM gene. The ATM gene provides instructions for making a protein that assists in repairing damaged DNA. While mutations in genes like BRCA1 or BRCA2 are considered high penetrance, an ATM mutation is classified as a moderate penetrance hereditary risk factor. In the general population, a woman's baseline lifetime risk of developing breast cancer is about one in eight, or roughly twelve percent. Carrying an ATM gene mutation approximately doubles that baseline risk to one in four, or about twenty to thirty percent. Furthermore, because the ATM protein is involved in broad cellular repair, mutations in this gene are also associated with a modest increase in pancreatic cancer risk, making genetic counseling and elevated high-risk screening protocols essential for carriers and their families.

MARISSA:29:26

I got a unilateral mastectomy. On my — it was the breast with cancer, the left breast. Getting that mastectomy was really scary. My breast surgeon was really concerned about me losing use of my arms, and she was as careful as she could be. I was still in the wheelchair, and I think it took about four weeks. It took a really long time for me to stop having, to stop draining. But once I was fully recovered, that was it. My arms were fine, and my oncologist and breast surgeon highly recommended to not do any kind of reconstructive surgeries, that as few surgeries as I could do were better because of the risk to use of my arm and also because of the risk of going under anesthesia with a neurological condition, it's already risky. So, but absolutely, yeah. So it actually was a pretty fast recovery since I didn't have to go back into surgery anymore. I think April through up to June, I got, I think, radiation three times a week, and it wasn't too bad. I didn't get too fatigued. After the mastectomy, there was still evidence of cancer in my lymph nodes, so my oncologist wanted me to do one more course of chemo — the Taxotere — and I took one course. It was supposed to be four infusions. After the first infusion, it was like someone put the MS on fire. It was like bacon grease on a fire that I could not get out of bed. It was totally debilitating. It made the MS get very, very active and to the point that my oncologist and my neurologist and me were okay with stopping after that one dose, that it was worth that risk because I did the full course of the first two chemos, and we were worried about what the long-term risk for me with multiple sclerosis would be.

RANDI:32:44

And so with that single Taxotere treatment, how long did that have you feeling poorly? And then did that set you back on a progressively downward path? Or can you talk to us about how the path of your multiple sclerosis went and how has the breast cancer been going since that point?

MARISSA:33:05

It took me a couple of weeks to get back to where I was and before I got the Taxotere. And since that point, it's been a really, really slow but positive trajectory, a really long, slow healing. I've been going to physical therapy four days a week. And when I started going to physical therapy, it was Thanksgiving of '24. On my report, they were noting I could not sit up without something behind my back. Like I could not sit up on my bed unless I had something behind me. And I went from that to I was taking steps just holding on to my physical therapist's hand. So the physical therapists have said to me — with progressive MS that holding steady is progress for a progressive disease, that they never see people making gains. It's a very unusual thing for them to witness. So it's been a long and slow but positive recovery. And yet the multiple sclerosis is halted and I'm making gains. I was talking about this today with a couple of my friends who have MS, and I think that the whole time the MS was progressing, I exercised as much as I could, and it was such a frustrating thing to have the multiple sclerosis progress despite trying every day to exercise. I think that if I hadn't had the chemo, I would not be making progress like I am. But I also think if I never bothered with physical therapy and doing more, I don't think I'd be where I am either. I think it's the combination of the two that have made the difference. But, I'm making really positive gains and now, yeah, being able to walk without a walker has been really amazing. We have a step up to my front door. It's like a two-step step up. I haven't been able to answer the front door in years. Anytime someone would come to the front door, I'd have to roll in my wheelchair down to the garage and let them in through the garage. A couple days ago, I just walked up the steps, got the door open. So these are like really big changes. It took persistence. It wasn't like overnight. It wasn't like I had the chemo and boom, I'm cured. It was a long, slow recovery.

RANDI:37:06

And what did that mobility shift mean for your daily independence?

MARISSA:37:12

After the chemo, I went back to my adaptive driving classes. I was close to getting an adaptive driving permit, and then when I got the cancer diagnosis, everything halted. And at the time that I was learning how to use hand controls, we were sure I was going to need a wheelchair van and a motorized wheelchair to be able to get on and off the van. And that's where we were. So after this treatment, and I went back to my adaptive driving instructor, she could not believe the changes in me. I went from having vertigo and not being able to get in and out of the car to learn how to drive to having no problems. And I had made so much progress that we decided I didn't need to use a wheelchair van. I just got a... Yeah, I got a Subaru that's low to the ground that I can step in and out of. And rather than a wheelchair van and a ramp, we got a device that fits on the roof of my car that puts my wheelchair up on the roof so it saves my back. It's called a chair topper. I got my license or my permit really quickly after all the chemo when I went back. And I'm driving now. And I just drove to Orlando and back independently.

I had a shocking amount of turnover in my breast cancer team, starting with the first breast — The first physician that I consulted about having breast cancer, who was a breast surgeon, left his practice after my first meeting with him. He was done. And that was kind of disconcerting, and it left me up in the air with trying to find a new breast surgeon. He did set me up with another oncologist. Sorry, he did set me up with an oncologist, and she was a very good oncologist. I credit her with saving my life. She was no nonsense. A lot of people maybe felt like she was too abrasive, but I thought she was great. I liked that she was no nonsense and just cut to the chase and did what she had to do. But she left her practice. It shut down maybe a month or two after I was done with my treatment. And also, I did find a breast surgeon through my oncologist, and she was amazing, a really good surgeon. She's the person that set me up with Signatera, which is a test to see if there are any markers of breast cancer in your bloodstream. And so it's a very reassuring thing to have the test come back negative. If it does come back positive, they don't know what they'll do about it, so that's the negative part of it. But I'm really glad that she set me up with that, because my oncologist did not want me to do it at all for the very reason I told you, which was, "What do you do if it comes back positive?" But my breast surgeon did set me up with that Signatera. And after my oncologist left, I started up with a new oncologist who was the husband of my neurologist. So now I'm with him, and he's great, and he is on board with me being on Signatera. And one of the things that was — became complicated for me was, now that I couldn't contact my oncologist anymore, I had no idea who put the port in me. Oh, before I started chemo, I had to have a procedure where a port was put into my artery so that I could save my veins from chemo infusions and that the chemo could be put directly into my artery. And I've had this port in my body for four years now. My oncologist at the time didn't like the idea of me taking it out because she had a superstition that, like, if you forget an umbrella, that's the day it's going to rain. That's how she felt about port removal. She was like, "You never know when you're going to use it." But I've had it for four years now. My new oncologist set up an appointment for me to get my port removed. The problem for me was I had no idea who the surgeon was that did it. He had no idea. It was nowhere in his records. And my oncologist was long gone. So it took some backtracking to figure out when I had the port placement and who did it. And eventually we figured it out. But that is a downside to losing all of your staff. There are things that you need to know that you can't look up anymore when they are all gone.

RANDI:44:22

That really underscores the importance of being your own medical archivist. Rachel, who was another guest on our show, mentioned this topic in her book, The No Bull Guide to Dealing with Cancer, that keeping and consolidating your own medical records is essential because care teams change, practices close, and you have to be the keeper of your own clinical history.

MARISSA:44:51

It's a great idea. When I got that port placement, I had no idea what a port was. I didn't—It was one big, like, just rush. And I never in a million years thought my oncologist would be leaving. And now that I know, you are so right, or Rachel is so right. Document everything because you never know who's going to have to leave and what's going to happen to your records. It is a really, really important thing and really good piece of advice.

I think if there's anything I could say that I learned from this story, it's sometimes what seems like the worst thing that could ever happen might be the best thing that could ever happen. You don't know ‘til you take another step forward and see. And chemotherapy is medicine that can heal you, even if it's very, very difficult to take. And then, the last thing. I was talking to you about this because I'm not quite there anymore, but after I went through the chemo, I was in a state of just nonstop gratitude. And I think that was the most powerful part of my experience was to finally be thankful and appreciative of the things that I had. This experience opened up my eyes to see all of the things that I had that I never acknowledged in the first place. And it's really easy to tell people you need to be grateful, because what does that mean? You can't make yourself grateful. It's something that you just hopefully can feel. And when I was finally in that state of gratitude, life was wonderful. Like, it was a totally different experience to go through life appreciating and being grateful for everything I had. The very opposite of, "Wow, my life sucks and I hate it." Because I was there, too.

RANDI:48:09

Marissa's story is a profound reminder that human health rarely fits neatly into medical silos. From navigating complex comorbidities and insurance barriers to experiencing the unexpected healing power of cytotoxic medicine, her journey highlights the immense resilience required to advocate for oneself when the system falls short. While Marissa's initial treatment unlocked incredible mobility gains, like so many navigating breast cancer, ongoing surveillance remains an unfolding scan-to-scan journey.

You can find show notes and links to resources for today's episodes and for all episodes at ChangedByCancer.com. The best way that you can support this work is to subscribe on YouTube, and that will also help to make sure that you're current on all new episodes. Thank you so much for watching and listening, and I'll catch you on the next episode.