Part 1: The appointment details

Part 2: The plan

When I read the devastating news of progression, I cried a whole lot. Things were bound to change and I wasn’t happy about it. Could cancer be any more inconvenient or self centered? Didn’t cancer know that my family was living a dream and I didn’t have time or emotional energy to put towards management of this? Cancer is my family’s 5th wheel apparently, uninvited and unnecessary!

What’s the plan though? I am going to be starting a drug called Xeloda (Capecitabine). This is an oral chemo. The last drug I was on wasn’t a chemo, it was targeted therapy, so it worked directly inside the cancer cell itself and stopped a cascade of events from happening, which stopped cell division. Chemo on the other hand kills rapidly dividing cells, it doesn’t discriminate cancer cells from regular cells, which is why it’s not targeted therapy. I’m still doing my own research on the drug, but this chemo offers a better quality of life than IV chemo because of how it works in the cells.

The side effects will be similar to those of my last meds, but will come with a new one called hand foot syndrome, which is like extreme dry skin and sunburn on the palms of hands and feet. There is treatment for hand food syndrome, but getting the Xeloda dosing correct seems to be the best management of this side effect. We shall see. Until then, I need to slather loads of aquaphor on my hands and feet to help ward off this side effect for as long as possible. One silver lining of this chemo is that I won’t be losing my hair. Yay!

This course of treatment looks like two weeks on the oral meds (twice a day) and a week off. Three weeks to a cycle. Now because it’s a new to me medication and we don’t know how I am going to do on it, I’ll have to be back in Boston for a few days every three weeks. That’s a lot. Like twice as much as I was planning on being back for. My first visit back will also include a liver biopsy. This is because my doctor thinks that the cancer must have mutated to become resistant to the CDK4/6 drug I was on and thats why I had become symptomatic so rapidly. She wants to find out what we are dealing with, maybe find the mechanism of resistance or the mutation itself. So this trip back will likely be a long one again because I’ll need to plan for the biopsy and recovery in addition to my normal oncology appointments.

Right now, insurance is being tricky. I have been trying to remain patient with them, but today I’ll be making calls to find out what the hold up is on getting my meds. Being off treatment is scary and I just feel bad. My oncologist said that probably by cycle 2 I will start to feel some relief from my pain which would be awesome. I’d love to quit relying on acetaminophen and ibuprofen around the clock.

Now, Xeloda is a fairly old drug. It’s been on the market for a while and there is a generic available. It was being used often before CDK4/6 inhibitors were released. The success of CDK4/6 inhibitors sort of shadowed the success of Xeloda, so the body of research isn’t as abundant as the body of research for CDK4/6 inhibitors. That being said, many people have had success on Xeloda for months to a couple of years. I have hope that because I responded so well to abemaciclib (a CDK4/6 inhibitor) that I will also have a good response to Xeloda.

This is anecdotal, but most of the time I don’t see second or third and so on treatment lines working for patients longer than their first line. It can happen, but usually that first line of treatment sets the stage for how a patient will do going forward. I am hopeful this will carry me for a little while. I would love to get 12 months out of this drug. And then, when this one runs is course, because it will run its course, I would love to go on another trial if I am eligible. I really do feel like it’s what I can do to give back to the MBC community so that some day we can treat this disease like a chronic illness rather than a terminal disease.

Part 1: The appointment details

Part 2: The plan

Last week was, as my friend put it “a shitty fucking week.” I was back in Boston only one week after my last visit, this time with an arsenal of appointments that were going to give me answers as to why I was experiencing fevers, a cough, and now near constant aches/pains. I was having a scan to look at my bones, a scan to examine my liver, an appointment with an infectious disease doctor, an appointment with a pulmonologist, blood work and more blood work, and a visit with my own oncology team. It was a lot! On top of this, I didn’t have Andrew with me, but I wasn’t alone — friends came from NH and MA to be with me even when I didn’t know I needed someone. That part was so nice. 

Tuesday was my longest day with most of my appointments at the Longwood Dana Farber, but one scan at the Chestnut Hill Dana Farber in the middle of the day. My friend was there though, to drive me back and forth, and all over Boston if I needed it. I started at Longwood, went to Chestnut Hill, and then back again to Longwood. 

The specialists I met with had looked at my chart and notes and had spoken to my oncologist before I arrived. After talking to me, the infectious disease doctors decided to rule out any type of tick related illness. Living in New England definitely comes with its share of terrible tick related illnesses that go beyond Lyme disease. Turns out, I don’t have any infectious diseases. Great, thats a lot of things ruled out. The pulmonologist ran through a lot of questions and took me for a walk with an oximeter. He agreed with the what we saw last time I was there, I have strong lungs. But one thing that came up was my heart rate — literally. My resting heart rate was 133. That’s really high. And when I was walking it was in the 150’s. I was getting winded, but not short of breath. I was coughing from time to time, but it didn’t seem to have anything to do with my lungs. The pulmonologist said he wanted to rule out at PE, or a blood clot, before I flew again. The likelihood of a PE was low, but they are very dangerous. Okay, that’s good too, more information.

The scans I had on Tuesday were going to hold my answers though, I knew that. So of course when the radiologist report was released to my patient portal, before I saw my oncologist, I read them. I can’t wait, I’m way too impatient. And I was right, the bone scan showed old bone lesions that were active and a handful of new lesions in my skull, scapulas, hips, and femurs. And that freckle, only a week before that was on my liver and was undetermined by CT to be metastatic or not? Yeah, that turned out to be a lot of liver lesions, ill-defined and spread throughout both lobes. BOOM! Progression. I was shook. 

As much as I knew this would be coming someday, I wasn’t really thinking someday would be now. My last scans before I left for Denmark looked great, so how could this all happen so fast? Those fevers started at the beginning of July, but to have that much progression while on treatment seems crazy! My oncologist thinks the liver lesions were brewing for a while and that the CT never picked them up. My previous bloodwork didn’t indicate anything really wrong either because the medication I was on causes slightly elevated liver enzyme levels, which I had had for a few months. And if you remember my tumor markers were increasing for a while too, but if we can’t see something, then we can’t treat something we cannot see. So, as much as there were some signs that something was happening in my body, nothing was an obvious “clean up on isle 9” situation, it was definitely a watch and wait, like a sitting duck. 

Again, friends showed up for me when I didn’t know I wanted or needed them– with welcome distractions of good food, comic relief, a listening ear, and thoughtful conversations. I am okay with being alone and I hate being a burden on anyone, so it’s hard for me to say “Yes” when I am offered help. But my friend’s persistence paid off 🙂

On Thursday I went in for my oncology appointment. Dr. Tolaney said first thing “Lindsay (my NP) and I discussed and we think you have probably looked at your scan results already.” Yes, they know me, they know I’m not passive when it comes to this stuff. So instead of delivering the news of progression to me, she jumped right into a treatment plan. I stopped her a little while into the conversation and asked her to go over the scans because although I knew I had progression, I wanted to have my hand held and for her to slow down. This was happening really fast!

She slowed down, answered my questions, but ultimately it came down to this: something happened quickly in my body and we need to get the cancer under control as soon as possible. The treatment she advised me to start will get me back on to treatment ASAP and it will allow me to be in Denmark most of the time. I am off my trial and back into the standard of care model, for now. 

There’s a lot of minutia that I won’t go into here, but I am still waiting on those meds. I hated leaving Dana Farber without them. Insurance is being its own beast and now that I am off trial they will have to start paying for things like medications, scans, bloodwork, and biopsies. As much as I hate the cancer battle metaphor, I believe that dealing with insurance is a battle and really becomes a part time job. So, as I am writing this I am still off treatment and I am still experiencing fevers, a cough, and pain. Things are in the works to hopefully change that very soon.

Remember that racing resting heart rate? On Friday morning, I had another CT to rule out the PE, all good there. I can fly again. But it turns out I was anemic. Racing heart, major fatigue, and dizziness with physical exertion, but breathing just fine? Those are all symptoms of anemia, and not the kind where I can just eat more meat or legumes. Dr. Tolaney thinks the cancer may be active in the bone marrow itself which is making it so that I’m not producing enough red blood cells on my own. After my Friday morning CT, I got to have two units of blood transfused. That was WILD and also the benefits have been so amazing. 

Our apartment in Denmark is 72 stairs up, without a lift. Before the blood transfusion I was taking breaks to get up the stairs and by the time I got to the top by pulse was HIGH and felt like I was going to pass out. After the blood transfusion I can take the stairs now without much issue at all. It feels SO good! I have no clue how long the effects will last, but as hesitant as I was to get a blood transfusion, I am no more! Give me all the blood!

There were so many emotions, ups and downs last week. It will take me a while to recover from it all. But one thing I know for sure, I had so much support last week. How can I ever express my gratitude for all of those folks and organizations that stepped up to help me, even when I didn’t know I would need it? Thank you for holding me and riding this wave with me. I appreciate you more than words can express.