Showing posts with label TDM1. Show all posts
Showing posts with label TDM1. Show all posts

Sunday, January 9, 2011

Scan Results

I knew something was wrong when my doctor came in and noticed my haircut. She was thrilled with the cut, but seemed uncomfortable gushing. She wanted to set a tone for the meeting and my smiling face and desire to be young, happy, and looking forward to a new year was something she was about to crush.

"We have good news and bad news."

My stomach sank, not to my toes, but all the way down the nine floors into the hospital lobby. Mamma grabbed my hand and clutched so hard it hurt, but I didn't dare pull away.

My latest scans showed that the tumors in my liver were stable. Not shrinking, but we were given the gift of stable. That was the good news.

The bad news was two-fold. The scans picked up on a new tumor: a dark spot in a lymph node in my abdomen, behind my liver, next to the celiac artery. Also, my tumor markers had increased markedly. Tumor markers, for my readers in the non-cancer world, are substances that cancer cells produce that can be measured in a blood test. When there is an increase in these substances in my blood, it is an indication of increased cancer cells in my body.

This new tumor and my tumor marker levels meant that I had stopped responding to the TDM1. I was removed from the clinical trial. I can no longer receive my precious silver bullet. Somewhere in the distance as I stared blankly out the 9th floor window, I heard a heavy door slamming shut. I could see my "case" being added to the clinical trial outcomes. My seven months before "disease progression," dragging down the drug's success. My performance dragging down every other patients' average.

I pictured somewhere, perhaps in another room in this very hospital, another metastatic patient was hugging her husband with joy, not fear, as she learned that there is a newly open spot on the TDM1 clinical trial. I probably know this patient. A dark part of me was struggling with my burning jealousy.

My doctor paused to let this news sink in before weighing in with her opinion.

"Bridget, we are disappointed. We are very disappointed. I know everyone in this room hoped that you would be on TDM1 longer, but you have to realize that, from a clinical perspective, this trial was a success. You are in a better place vis a vis your liver now than you were in May. Your liver lesions shrunk 22%. This is a success, and tumors in your lymph nodes, while hearing that is certainly scary, those are not vital organs. Better the lymph node than the liver or another vital organ. We are disappointed, but I am not worried about you. OK?"

I know my doctor is right. I find comfort in her words, and I relish her confidence. My doctor has confidence in me and in my chances.

But I also struggle with other facts. With every drug that is taken away, with every drug removed from my "arsenal," I get closer to running out. I am scared. I am angry at myself for not doing better. Was it something I ate? Too much red meat? Too much red wine? Too much stress? Late nights? Not enough exercise?

Over the past few days, as I have digested this news, I have felt like a spurned lover. I am recovering from a horrible break up. I thought TDM1 was "The One." I had visions of babies and suburban homes and years of happiness. When I was sent home on Wednesday without my scheduled infusion, I cried. I felt hit in the gut. I felt like a woman feels when she stares desperately at the phone and begs it to ring. When she picks up to make sure there's a dial tone. When she calls and hangs up without leaving a message and then yells at herself. Why can't I have him? I miss him! He was perfect! It all seemed to be going so well! What happened?

Just like with a bad breakup  I have to learn, "It's not you, it's me." There was nothing I could have done to prevent this. My cancer simply figured out TDM1's weakness too quickly. It found a detour to continue along its path of destruction. My cancer has some sort of as-yet undiscovered personality trait that makes TDM1 less than ideal.

And, just like my single girlfriends everywhere, I have to take a deep breath and say, "On to the next!"

Although I've been on 11 different drugs since 2005, and that might not seem "early" in the cancer journey, my doctor assures me I was actually able to grab a spot on this TDM1 clinical trial a little "earlier" than the other patients. Unlike many members of the trial who had exhausted all other standard therapies, I still have, according to Doc, many standard therapies still available to try. So now, we will try a standard therapy first approved by the FDA in 2007, the targeted therapy Tykerb with the chemotherapy Xeloda. 

In 2007, a clinical trial found that Tykerb plus Xeloda given to HER2+ metastatic patients who had progressed on other treatment regimens, gave patients 27 weeks without disease progression versus 18 weeks for Xeloda alone. While 8 months without another progression is certainly not a cure, some patients on Xeloda and Tykerb did see their cancers disappear and have been on the drug for several years. The 8 months is an average. We are entering an age of individualized treatment for breast cancer, my treatment over the last six years has certainly been individualized, and I am hoping to be one of those 'no evidence of disease' recipients of this drug cocktail. I am hoping that this combo will be "The One" for me.

My new drug regimen is all pills. I no longer have to visit the infusion room, which is fantastic, but also feels a little funny. I've gone to infusion every three weeks for the past six years. I feel like my nurses should have some sort of going away party. I know every receptionist, nurse, and clinical assistant. I know their kids' names. I know their upcoming wedding dates. Infusion was a social occasion for me, and those nurses answered a lot of my questions and laid to rest a lot of my concerns. They brought me warm blankets and sandwiches and drinks. They took care of me. They were caregivers. Missing infusion also feels a little like a break up. I know that this could be a great thing; it will just take some getting used to.

Instead of monthly infusions, I will be taking 11 pills every day. Talk about picking your poison! I've already started taking the Tykerb and I'm feeling....funny. I have problems with nausea and I just don't feel quite right, but I figure I can handle funny. We shall see what the Xeloda brings.

How am I doing? I am still digesting this news. I am torn. I have dual personalities here. I feel yet again like I am trying desperately to hold onto my life, grasping at straws, and I am concerned about the continued bad news we've been receiving over the past two years, but cancer can wreak havoc on my body, but it cannot take my soul.

If I've learned nothing in this cancer journey, I've learned that every cancer has a personality. My cancer has multiple personalities: when it dies, it dies quickly, but when it grows, it grows just as fast. This beast struck fear in my heart this week. In just nine weeks the news turned from "shrinking, shrinking, shrinking!" to growing. For cancer to turn on a dime, for a whole new tumor to appear in nine weeks....
This beast doesn't just die and stay dead. It has got a hold on my body and it will not go quietly into that dark night.

We have more dancing in the kitchen to do!
Regardless of cancer's intentions, I am adamant that I will continue to live the life I have made for myself. I will witness my best friend walking down the aisle. I will visit the beach with Mamma and Company this summer. I will write a book. Big Man and I are season ticket holders to our local theater and I am seeing every single show and having a pre-theater dinner to boot, even if I do feel a little 'funny.' Big Man and I want to take a trip to Wimbledon some summer soon, he's a tennis player whose never been to London, one of my favorite cities in the world that I can't wait to share with the man I love.

Let me be clear, though. We do not have a bucket list! I don't like the phrase bucket list. I might be aware and prepared for death, but I am certainly not racing toward the finish line while checking things off. Instead, I see the plans I've made as physical evidence of my fight. The battlefield is at the tissue level down in my belly, but I find symbolism from my actions every day.

As I'm swallowing the last five pills of my day, I smile with the realization that this is a physical act. "Take That!" I smile picturing the cancer cells running for the hills as the pill slowly dissolves. Like roaches scattering when you turn on a light. In the same way, if I were to get on a plane for London tomorrow, I would look out the window and say, "Not today, Cancer. Today, I am living!" After getting home from a fantastic party or double date, I think to myself as I kiss Big Man goodnight, "I am alive today."

I feel like, when the end comes, I'll know it. I have seen my grandmothers grow old. Dying from cancer is not like falling over from a heart attack or getting hit by a bus. It is a slow progression like the progression of old age. You slow down. Your plans get a little smaller and closer to home.

Hiking in the White Mountains this summer, crossing the finish line of the 3-Day this fall, planning babies and houses with Big Man at Christmas, yoga classes, dramatic hair cuts, I have very broad and ever broadening horizons. I have big plans.

This cancer might scare me, but I am going to stand my ground.

The Big Man and I went to church together today and left at peace with this news. At peace, but still clinging to one another. We can't seem to hold each other close enough, even while in church. Brushing elbows turns into me slipping my arm through his elbow and Big Man pulling me close. Brushing fingers turns into hand holding. One hand turns to both hands intertwined.

I laid my head on Big Man's shoulder today as Father John talked about the Feast of the Baptism of Our Lord. Father John argued that, while the babies who are welcomed into our church every weekend will certainly not remember their baptism, baptism is the most important sacrament. Symbolically, it is during baptism when God enters our world and makes His mark on our souls. We are His adopted children. He does not give us our eye or hair color, but He has given us all of our best qualities.

God gave me the Big Man
My strength and fortitude, my gift of gab. Big Man's ability to make me laugh when I feel instead like crying, Big Man's kind eyes and even kinder heart.  Those are the gifts we symbolically received at our baptisms. Those very qualities that get us through cancer and help us to actually grow with it. We don't remember baptism, but our souls remember.

God didn't give me cancer, but He gave me the tools I need to beat it and to carry on.

So, here we go, carrying on!

Monday, September 13, 2010

Fresh Fall Start

Here in Boston, the weather has gotten suddenly chilly and the days are getting noticeably shorter. For the Big Man, a high school English teacher, summer is officially over. It is a start to a whole new year. In our household, Labor Day weekend seems like a much more noteworthy holiday than even the hoopla of New Year's Eve.

In my metastatic breast cancer world though, I follow a different calendar. I start a new "year" every three months. Believe it or not, my past three month "year" has already come to a close! It's been only four blog posts, one fast summer, and two glorious holiday weekends since my last set of scans. In June, I celebrated my first real out and out victory in my fight against cancer. For years the words "no change" or "stable" were actually good terms. I hadn't realized what limbo I was living. For five long years, the cancer never actually shrunk. It either grew or it stayed the same. The status quo was a victory. I was simply keeping the beast at bay, I had never before sent it running for the hills.

Then my little silver bullet came along. In June, for the first time, with the help of this TDM1-GDC clinical trial I started winning!

But last week, I was facing a new question, a new challenge. If you remember, when I first started the clinical trial I was taking both TDM1 and oral chemo pills called GDC. That combination almost killed me. My platelet count fell to dangerous levels. I was breaking out with "spontaneous bruising", which might sound tame in medical terms, but was in reality the scariest thing I've ever been through. I also couldn't get out of bed because every step, every breath, every movement hurt from the inside out. So I threw in the towel and I was devastated. But when I got the good June scan results, my devastation turned to hope.

Last week, as I went in for scans and results, I was again filled with dread. I faced a new question: without the GDC pills, would the cancer shrink? Would TDM1 alone be enough to keep this cancer running for dear life (I think that phrase takes on a new, opposite meaning in this case, don't you??!)

Well, my friends, the verdict is in:

 I am kicking cancer's ass!

In the past three months, the TDM1 has shrunk the original tumor in my liver visibly. I quote from the Radiology Report:

"There is an ill-defined mass in segment 6 of the liver which is slightly decreased compared to prior examination and measures 1.4 X 1.1 cm. "

But here's the best part...drumroll please....the scan doesn't even mention the second, smaller, newer liver "lesion" that showed up in April and started this whole clinical trial drama!

That vile, nasty, evil thing that sent me to the hospital for a biopsy that hurt like hell, it just disappeared so quickly and so quietly. That liver lesion arrived with so much pain and hoopla, and then it disappeared without even a peep! Take THAT cancer!

The TDM1 is working. I love my little silver bullet.


Me heading off to pre-school,
I guess at that age you didn't need a backpack?
I don't know what I love more,
my pig tales or my blue big girl shorts! 
This September is truly a fresh start for me as well as for my husband. This morning, I drove past an elementary school on my way to Starbucks. I saw and heard dozens of adorable children with shiny new backpacks, new haircuts, vivid white polo shirts, and smiles of pure joy race to visit with classmates.

As I drove past, I felt a kinship with those elementary schoolers, not because I was reliving my own childhood, but more because I share in their joy. This week, every phone conversation I have, every time I see a friend, every morning when I see the Big Man, I am filled with unbridled joy and the excited flip flop in my tummy that comes with new beginnings.

Today is a shiny, new backpack kind of day! Who knows what sort of terrible challenges lie ahead for the rest of this year, but today as I embark on a new chapter, I am fresh, well rested, healthy and new. My liver is shiny and clean and the world is my oyster.


I hope that all of you can take a bit of my energy today and face this new week with some ounce of unbridled joy and optimism. To see that sort of unconditional trust, hope, and love in an adult is an unusual gift. I think if we faced each morning like a child the world would be a better place, and our day to day lives would feel just a little less painful.

I want to say one last final thought about my second liver spot. That evil creature kept my entire family and all of you, my blog friends, awake at night with fear, but we must also remember, it also united us all in prayer and in hope, and, now, our prayers have been answered. That's the beauty of life, the same thing that hurts us more deeply than we can imagine, also opens us up to more joy than could have been enjoyed before. A rollercoaster is only as thrilling as its scariest hills and loops.

Thank you all for helping me and encouraging me along this journey. I cherish all of your comments and support more than you can ever know. I deeply believe I wouldn't have made it to this moment without you.

Friday, July 9, 2010

Enjoy the View

Another weekend is upon us. I don't know how time has flown by so quickly!

My Fourth of July holiday was fabulous; everything we expected it to be and more. The Mount Washington Resort is spectacular, although I think if we went back we would choose not to go on the Fourth of July. It was slightly too busy on the Fourth. The Resort had arranged for some reenactments of the Revolutionary War and the Gettysburg address. Driving up to the resort, we thought our car was getting hit by a bevy of errant golf balls from the nearby course, it wasn't until we turned a corner that we saw men in uniform and on horseback setting off fake cannon fire that we realized the banging sounds we heard were the blanks from the cannon! My little Jetta made it back from New Hampshire unscathed. While sitting on rocking chairs with a cup of coffee looking out at Mount Washington, you truly think that you could be the only person on the planet. Seeing children in the other room sitting on Abraham Lincoln's lap taking pictures takes away a bit of the wonder of the mountains.  But other than the reenactments, the trip was perfect!

We could have stayed there forever. Every morning coffee and juice was delivered to our door so we could stay in bed as long as possible. The food was out of this world and the service was impeccable. No fewer than four people helped us out of the car and with our luggage. Our waitress was adorable and attentive and we had the same waitress and busboy the whole weekend. We spent a day at the spa, sitting together in robes with tea, and saunas, and whirlpools, getting a massage and a facial. We wandered the grounds together hand in hand. It was exactly what we needed.

It is actually not until those moments of total and complete relaxation that the enormity of our situation can be truly understood. When we are in the moment and in a doctor's office or waiting room, we are just trying to make it through the day. The stress we carry day in and day out can be so overwhelming that it is actually incapacitating. The stress actually takes away our ability to look at our situation as a whole. I believe that at those most crucial moments, like scan times, if we were to take a step back and truly comprehend the amount of stress on our shoulders, we would crumble.

It wasn't until we had been at the resort for two days, after the massage, when my husband and I were sitting quietly holding hands and staring at the majestic Appalachians that it washed over us. We looked at each other and had a new found respect for our relationship. We had made it. We made it through another trial, another roadblock, another test, and we have come out the other end and still found each other. We have found this magical place.

But we didn't just sit around and get pampered. We also explored the mountains. At a friend's suggestion (Thank you, Molly!) we took an afternoon hike up Mount Willard. Big Man was adorable. He stopped after crossing any rock or little dribble of water or slight incline and offered me his hand. He looked afraid that I would break. I just plunged forward, head down, eyes wide open, and focused on putting one foot in front of the other. Although we ended up at 2,800 feet when we reached the summit, the hike was only a mile and a half each way, but it was quite steep. That said, when we reached the summit, the view was absolutely breathtaking!

I was suddenly giddy! Can you believe it, people? This time last month I couldn't get out of bed. Just two weeks ago, my platelet count was at 15,000 and I needed blood transfusions. I couldn't walk from my bed to the kitchen for a glass of water let alone hike up a mountain!  I wanted to do it again. I wanted to do Mount Washington! I could totally do an eight hour hike up to the top of Mount Washington, so what that its the highest peak in New England. I'm totally healthy! When we got to the bottom, I was talking about hiking the whole Appalachian Trail!

Big Man laughed, shook his head, kissed my forehead, grabbed my hand and said, "Let's go put you to bed!"

Big Man knows me too well. He knows this journey too well. I fell asleep in the middle of fireworks.
 I could barely move the next day. I may be handling it well, but the silver bullet is still chemotherapy. But one day, one day, that silly little Appalachian Trail won't know what hit it! I'm scheduled to go in for my next TDM1 infusion on July 21st, but today, we are triumphant! Today our heads are clear and we can climb any mountain. It's amazing what summer vacations can do.

Happy Friday, everyone! Get out there and climb your own personal mountains this weekend.