Xeloda, Day One

So I started chemo again today.

The short version is that I'm participating in a clinical trial for people with my particular flavor of breast cancer that is expected to significantly reduce my risk of recurrence. There are two groups in the study: those taking an oral chemo called capecitabine, and those taking an IV chemo called carboplatin. I was randomly assigned to the capecitabine group, and I'll be taking the medication for 18 weeks, with two weeks on and one week off.

For those who want more details, here you go. My oncologist first told me about the trial when I saw him just before my surgery in September. After my pathology report showed that I'd had a partial, but not complete response to the chemo, we decided it would be a good fit for me.

The study is comparing the use of capecitabine with the use of platinum salt drugs (either carboplatin or cisplatin determined by the prescribing oncologist) to reduce the risk of recurrence in people with triple negative breast cancer who received neoadjuvant (before surgery) chemotherapy but still had a tumor of greater than 1cm at the time of surgery. A Japanese and Korean study (known as the CREATE-X study) released early last year found that the use of capecitabine was beneficial in reducing recurrence in women with TNBC by about 15%. Here's the link to the study, if you're interested.

It wasn't too hard a decision to make. Chemo sucks, of course, but that's a huge reduction in risk and I am certainly willing to have another few months feeling crappy in exchange for no Titmonster recurrence. That would be way crappier.


My hospital, GBMC, wasn't one of the trial sites, but Johns Hopkins is, so I contacted the coordinator there and started the process in November. I saw the medical oncologist at Hopkins with whom I'd met for my second opinion, who also thought it would be beneficial for me to participate, and later I met with the coordinator. She determined I qualified, and I signed all the consents and had blood work done. Then, it was a waiting game until I finished radiation and they could randomize me.

In the meantime, I realized that I really didn't want to change providers and hospitals. I liked the people I interacted with at Hopkins, and I have confidence I'd get good care there, but.... it's huge. I had to talk to five different people just to get my parking validated so I could leave. They gave me an orange card that I'd have to swipe whenever I arrived to do anything. Their gowns don't even provide coverage. It just didn't have the same feel...it isn't GBMC.

My radiation oncologist had already encouraged me to ask about GBMC becoming a trial site; he thought they would be amenable to it. So I hemmed and hawed for a few days, and I finally emailed my medical oncologist at GBMC. The next day, someone from the cancer center called to say it was absolutely possible and that they were happy to become a trial site. Yay! At my next appointment with my MO, just before Christmas, I signed the new consents and they were able to send off a tissue sample, another prerequisite for the study.

The tissue typing took about 4 weeks, and I finally got a call last week that they had the results and I could move forward. I had to get blood work done again, as too much time had passed from the first time I had blood work. The clinical trial coordinator asked me to hold off on getting the bloodwork done until the pharmacy had completed its end of the paperwork (I don't know the details) so that I would only have to go once--I'd have to have labs drawn again no more than three days of starting chemo, but if we timed it right, the pre-randomization lab would also count for the pre-chemo labs.  We planned for me to have my blood drawn on Tuesday and today I would attend an oncology teach session and doctor appointment, as well as my infusion, if I ended up in the platinum group. I would know by Wednesday which group I was in, which would give me time to square things up at work and read everything I could find about whichever drug I was assigned to. I intentionally did not read up too much about the medications ahead of time, because I did not want to get my hopes up to be assigned to one group over another and face potential disappointment if I was randomized to the other.

There were some miscommunications and small errors and annoyances that added up to me not being randomized until early this morning, which was frustrating and inconvenient, but not a huge deal in the long run. I'm still glad to be doing it at GBMC.

I'll take the medication twice a day for 14 days, then get a week off to recover; those three weeks comprise a cycle. I'll have six cycles total. So far I feel fine; let's hope that keeps up...

Chemo Care

Since my diagnosis, it feels like nearly every day I'm learning about another person being diagnosed with cancer. I'm sure it's just that my awareness of it has changed, but FFS, I'm so sick of this damned disease. I need it to stop affecting the lives of people I love. 

Anyway, people always want to know what to prepare for after finding out they have cancer, or what they can do when they learn someone else they love has cancer, especially if they're going to have to endure chemo. I always try to respond, but it takes a while, so I decided to just write a post I could direct people to. I can't seem to keep myself focused on the tasks I should be doing today, so it's as good a time as any. 

First, I’ll talk about what to bring to chemo. I had a designated bag for my chemo, a Life Is Good tote bag. Later on, I switched it out to the one that came in a care package from Lisa’s Army. Either way, I kept this bag packed with most of the things I wanted to take with me to make it easier to get ready. I’ll list what I brought, with a couple of additions or changes I’d make if I had to do it again.

In My Chemo Bag:

Water bottle--plastic, and a good one. It was always my goal to drink at least twice the amount of fluid I was going to have infused while I was there. When I was on A-C, which turned my pee red/pink, it was my goal to have my pee back to normal by the first time I had to pee after getting home. Then I felt like I was drinking enough. I still haven't found a favorite water bottle. I loved my stainless steel water bottles, but I had to stop using them after a while because everything was starting to taste metallic anyway, and the water bottles made it worse. Oh, and I love lemon in my water, so the bottle I use most often has a little strainer thingie at the bottom where you can put fruit or such in the water. I’m open to recommendations for a new water bottle.

Chapstick--I didn't have this problem, but lots of people get really chapped lips during treatment. Besides, it never hurts to have an extra tube around.

Good hand sanitizer--I got some in a care package that was amazing, but I can't remember the brand. If I can find it, I'll update. The thing is, we have to use hand sanitizer constantly, because GERMS!, but that stuff is so drying and painful. The one I'm thinking of was more like a lotion, and it didn't make my hands burn. I loved it.

Aquaphor--I didn't have this in my bag, just regular lotion, but I use it all the time now and highly recommend it. I started using it when I was going through radiation, and I still use it nightly. It heals my bleedy, cracked knuckles almost overnight.

Game, card or other--my favorite is Phase 10, and I played it during nearly every infusion. It takes a while to play the full game, which is nice because you have to sit there for quite a while. Also Mad Libs.

Fun socks--if you know me, you know I love socks. My sister gave me a pair of socks that became my chemo socks, because, well, duh. Consider ones that have non-slip soles (or include some puffy paint to make them non-slip) so that if you want to walk around or get a snack, you don't have to put on your shoes again (because who wants to wear shoes?). On that note...

Slip-on shoes--the first thing I did after sitting down in the infusion chair was take off my shoes. I eventually learned to bring flip flops to wear when I needed to go pee (remember, I was pregnant, so that was about every seven minutes).

Computer--I'd usually bring my iPad or my laptop with me. I often never even pulled it out, but it was nice to have if I wanted it.

Phone charger—this became a staple after I had to borrow one from a nurse one day.

Snacks--my infusion center had a stocked kitchenette for patients' use, and a volunteer brought around sandwiches at lunchtime. I don't know if all centers do this though, so maybe bring some snacks. My favorite were Fiber One bars, because they are tasty and help keep things moving, which many people find necessary during chemo.

Hard Candy--When I was on Cytoxan, my sinuses burned like mad during the infusion. I figured out that sucking on a hard candy helped immensely, so I went through a lot of Life Savers and Lemon Balls. Peppermint also helps with nausea.

Tums—the indigestion was probably from pregnancy, but I’d still bring them.

Blanket--it can get cold in the infusion rooms, and having pints of fluid pumped into you doesn't help. Besides, it's comforting to wrap up in a blanket. Bonus if it's handmade (one of the awesome secretaries at my school made mine!) and/or super soft.

Fingerless gloves or mitts--again with the cold. Fingerless gives you more freedom.

Coloring book & crayons/colored pencils/markers--it's meditative and fun. You can get something that fits the person's personality...like the Princess Bride coloring book, or a Dr. Seuss one, or a Harry Potter one, or one filled with curse words (maybe I have all of these) (I totally have all of these).

Crafty supplies--I'm a knitter, so my yarn and needles came with me until my hands got too cranky (combination of carpal tunnel syndrome and neuropathy).

Earbuds--I don't think I ever turned on the TV at my infusion station, but if I was on my own, I liked to listen to audiobooks or watch Netflix on my computer. There were headphones at the station, but eww.

When people find out someone they care about has cancer, they want to do something for them. Cards, texts, emails, Facebook messages: all are nice. Please don’t expect an immediate response (or any response at all). It doesn’t mean we didn’t receive it or don’t appreciate it. It means we’re dealing with so very much, and it’s overwhelming. We may also receive half a dozen messages every day, and it’s exhausting to keep up with.

Meals are always good. Meals are always good. Meals are always good. Meals are always good, especially if they are ones that can be frozen and thawed on those evenings when cooking is just not going to happen. I liked a mix of comfort foods and healthy meals—one of the things driven into our heads is how powerful our food is in helping keep us strong. No worries if you’re not a cook--gift cards for local restaurants are also really helpful, especially on those long days when there isn’t time to even prepare a frozen meal. Many days, I had no desire to leave the house, but other days I was antsy to get out. Again, variety is nice. I loved having meals in the freezer for days I didn't want to go anywhere, but I also loved the ease of being able to eat in a restaurant or order something to go. If you're not the cooking type or aren't local, look into Magic Kitchen or other companies that ship meals.

In a Chemo Care Package:

Any items from the above list, plus: 
                                                                                        

Head scarves or hats--I eventually went topless (heh) everywhere but at work (if I lose my hair the second time around, I'm not going to even wear something at work unless it's for warmth), but I needed hats and scarves when it was cold out. If you're making or buying hats, use the softest material you can find. Bald heads can be rather tender. I liked variety, but I didn't want to shell out a bunch of money for scarves. Check your dollar stores and other places for head coverings. I really liked the bandanna style that were pre-tied or had elastic to hold it on my head. It was super convenient. Also try to make sure it's easy to wash--they can get pretty smelly pretty quickly. 

Scarf--regular ol' neck scarf now. I went from long, warm hair to none at all, and my neck and ears were FROZEN. A nice soft scarf helps.

Port Pillow--I still use mine, and my port is gone! It's a little pillow that keeps the seatbelt from pressing directly on the port. It is super helpful.

Ginger Candy--I prefer candied ginger, but there are all kinds of ginger candies out there. It helps with nausea.

Queasy Pops--I never had a lot of nausea, but I received some of these in a care package. I hear it helps.

Fun books--it's nice to have light-hearted things to read. Books that can be read together are fun to take to chemo.

Gift cards for iTunes or such--for whatever flavor electronic device the person has.

Biotene Mouthwash--mouth sores and dry mouth are common.

Soft pillowcase--I slept with a cap on my head until my scalp tenderness faded (it also kept me warmer, and I was always cold), but a fleece or satin pillowcase could do the same.

Yoga/lounge pants--bonus points if they can be worn in public without looking like they're pajama pants. Ain't nobody want to sit in a chemo chair in uncomfortable clothes. 

Tea--especially ones that help with nausea (ginger, peppermint), insomnia (Sleepytime). I tried to stay away from caffeine.

Stuffed Leukocyte--a friend sent me one in a care package in case my blood counts got too low. She sits on my dresser and I love her. See next item.

Silly things--that fit the person's personality and will make them smile.

House cleaning service--we had a cleaning provided by my infusion center, and we used it right after Finn was born. It was so nice to come home to a clean house that we didn't have to do.

I’m probably forgetting some things…feel free to add to the lists!

Radiation and more

I finished radiation! December 22, 2016 was my last radiation treatment, and Finn helped me ring the bell again (he also wanted to eat it).

It was an extra special Christmas present to have radiation treatment completed and have that chapter of my life over with. It was the last step in the traditional treatment for my particular flavor of cancer, and that is a damn good feeling.

Alas, it will not be the final step in my treatment. I have decided to participate in a clinical trial for triple negative breast cancer. This trial involves chemo again, but I don't yet know which one I'll have. I'll be randomly assigned to one of two groups within the next week or so. One group receives an oral chemotherapy drug called Xeloda (capecitabine) and the other receives one of the platinum salt drugs, either carboplatin or cisplatin. My oncologist tells me that both drugs will be easier to tolerate than what I've had before, and I should keep my hair this time around. I'll note that I'm not particularly concerned about my hair; I just mention it because it's the first thing many people ask. While I like my new curls, and it's nice (and warmer!) to have hair again, I kind of liked the super low maintenance and ease of being bald.

We had an excellent Christmas. We had Mass at our house Christmas Eve, and Santa visited us later that night. We went to Kevin's parents' house for Christmas Day, and then we packed up the car and headed out of town towards NC. We stopped at a hotel after about three hours and drove the rest of the way to Oak Island, where we spent several days with my whole family. It was the first time we met my brother's son Kellan, who is 12 days younger than Finn, and the first time we've all been together since March and since Finn and Kellan were born. We then drove to Charlotte for a couple more days, and Finn cut his first tooth on the drive there. He was a little screamy until it broke through, and then he was fine. While in Charlotte, we also got to see my best friend for her daughter's 3rd birthday party.

We returned to Maryland the night before I had to return to work, but Kevin was able to take another day off, so he and Finn spent the day together.

I'm keeping my fingers crossed for lots of snow in the new year.