Saturday, January 22, 2011

The beginning - January 22nd

It’s been 3 days since I found out I have cancer.  Metastatic melanoma (stage IV melanoma) to be exact.  In January of 2007, I had a suspicious mole removed from my leg – the pathology report said melanoma. I had local surgery (a wide resection and a sentinel lymph node biopsy) followed by a clean PET scan.  We thought that was the end of it.  In November 2008, I got an infection in my leg at the surgical site of the first melanoma.  There was a hard ball under my skin and the skin on top was red and hot.  It hurt and I didn’t feel well. I called my surgeon’s office, but they told me that it couldn’t have anything to do with melanoma and to just get it treated by my primary physician.  I took antibiotics and the infection went away. About 4 months later it happened again.  Again I called my surgeon’s office and they told me to get it treated and then come in. When I got to my visit, the surgeon told me there was nothing they could do since I’d already had it treated, so I went home. In November 2009, I got a third infection.  This time I called my medical oncologist (who was following me just as a precaution on the advice of my dermatologist). He forced an appointment for me with my surgeon’s office. This time they decided they would go back in, remove the mass, and determine what it was.  They thought it was probably a stitch left over from the first surgery that was causing the infections. So I had another surgery and they removed the mass. The next day, the surgeon called and told me there was melanoma in the mass.  The following day, I went back in for a second (or really third) surgery where he took a larger area.  The pathology report on the larger area came back clean.  I had had a PET scan before the surgery, which showed activity only in my leg at the same spot as the infection (which turned out to be melanoma).  So they decided not to do another lymph node biopsy.  Those two surgeries were in December 2009.  In January 2010 (the next month), I got pregnant.  We had been trying before the surgeries, so we were delighted.  Of course, that ended any conversations about further treatment – they was nothing I could do until after the baby was born (he was born in October 2010 and he is the most precious, cutest, smartest little baby ever born).

Earlier this month, I had a routine follow-up PET scan since it had been a year since my last surgery. I had an appointment with my oncologist the following week.  The day of my appointment, my plan was to take the baby to daycare for a few hours to get him used to it, because I was supposed to return to work the next week (my maternity leave was ending).  Since the daycare is next to our office (my husband, Jeff, and I work together – that’s where we met), I first took him in to show him off.  When I got there, Jeff told me that my oncologist had called him and told him that he should come to my appointment with me because the PET scan was showing activity. At the appointment, my oncologist – Dr. Paul Thambi, one of the best doctors I have ever had in terms of dealing with patients and showing real caring and concern – told us the scan showed activity in my liver (3 cm), pancreas (2.5 cm), and lymph nodes (just a small amount). He was very honest and told us to expect that it is melanoma, giving us a 90% chance that it was. In preparation of it being melanoma, he proactively set up an appointment for us at NCI for the following week (this past Thursday).  That was Tuesday.  On Friday of that week, I had a liver biopsy. On Monday I had a brain MRI because NCI needed the results for our meeting (the MRI was clear, thank goodness, it has not spread to my brain).  I had a follow-up appointment scheduled with my oncologist for this past Wednesday to learn the results of the biopsy.

The days between the biopsy and finding out the results were utter torture.  One way our lives would remain the same (which is fabulous, we love our life – we have an absolutely perfect little baby, fantastic friends and family, great jobs, we love where we live, I wouldn’t change a thing – I’m happier than I’ve ever been) and the other way everything would change, maybe forever. I spent the entire time convincing myself that the action from the scan was something left over from the pregnancy and birth.  I mean how many PET scans do they see from women who had just given birth.  I decided it couldn’t be very many and that everyone would be so happy when we found out that’s all it was.  I couldn’t believe it could be cancer. I couldn’t have cancer – I have a baby, a newborn baby who needs me.  Finally Wednesday arrived. Dr. Thambi came in the room and we knew right away, the biopsy was positive for melanoma. He was telling us, and I understood what he was saying and I knew what was happening, but part of me just kept thinking, “What? What is he saying to me? I can’t believe what he’s saying to me. This isn’t happening.”  But of course it was happening.
 
After the appointment, we had to tell our parents. My mom had been staying with us to help with the baby since the previous week when I had the liver biopsy (which was a godsend, we were so thankful for her being there, and I thank her in advance for all the time she will be here in the near future). We called her, told her the news and said we’d be home shortly.  We then called my dad and Jeff’s parents. Hearing that I had cancer was difficult, but having to tell everyone else was even more so. Any pain I feel is because I have cancer; it’s due to me.  But because I have cancer, I am causing pain to others that I love – especially my husband. I am lucky that my baby is way too young to understand and as long as we act “normal” around him, he hopefully won’t be too affected.  I am thankful for that.  I am thankful for so much.

The next day, Thursday, we went to NCI for testing and to meet with the surgical team. I am extremely fortunate that I live only about 15 minutes from NCI. I was able to go immediately unlike some who have to travel, make arrangements, etc. I should also mention that the company we work for, MMG, does patient recruitment for clinical trials and Jeff is the head of our oncology division. Because of our work, we have a firm understanding of clinical trials and the research that NCI is doing (they are one of our clients) and I am so thankful for this knowledge because it allowed us to make a quick and easy decision about our options, without a need to spend time learning about the research and what it means to be involved in a trial.  The trial NCI discussed with us is their TIL cell trial.  It involves cell replacement therapy and they have been doing it for 10 years. The treatment is aggressive and it is harsh, but it is showing promising results with a 50% response rate (meaning people’s tumors either shrink or stop growing 50% of the time, which may not sound that great, but other options are showing 15% response rates, so 50% is huge).  Right now, my understanding of the trial is that it works like this (we meet with them again next week, so I may clarify some of this information after that meeting so stay tuned):  First I go in for liver surgery where they remove the tumor in my liver. They then harvest any white blood cells that are in the tumor (I should back up and say that melanoma is a cancer that your body recognizes as a cancer and tries to fight, so they would expect that my immune system may already being trying to attack the tumors). They replicate these white blood cells by the billions, which takes 4-6 weeks (they do this in their lab while I wait at home).  There is a chance that they won’t be able to grow the new cells.  They said there’s a 20% chance it won’t work.  They should know within 2-3 weeks of starting if the cells are going to grow or not.  Assuming the cells grow successfully, I then go back to the hospital (the Clinical Center at the National Institutes of Health) for about 3 weeks. They first give me high doses of chemotherapy for about a week to kill all of my current white blood cells.  They then give me the new cells, as well as immunotherapy drugs to help them along.  Theoretically the new cells will all be able to recognize melanoma as a foreign substance and will try to attack it.  Since the melanoma has spread to my liver and pancreas, that means it is in my bloodstream.  This treatment attacks the cancer from head to toe, which is the only thing we can do to try to stop it from spreading further.  My understanding is that those 3 weeks are terrible. My body will go through hell.  They said that they keep upping the doses of the drugs until I can’t take it anymore or my kidneys give out, whichever happens first (luckily the side effects are reversible after the treatment ends). It’s an exciting trial and people come from all over the world for the chance to receive this treatment.  We are so fortunate to live so close to such an extraordinary resource – especially with the baby.  Not having to travel with the baby is huge, I am so thankful. Anyway, after our meeting, they said they would all be meeting as a team the next day and would make the decision at that time if I am eligible for the trial.  I left them with a picture of me and my baby.  I asked the doctor, Dr. Schaub, to show it to the other doctors at the meeting.  I wanted them to know what I’d be fighting for.  I wanted them to know that I didn’t care how terrible the treatment would make me feel in the short term – I will do whatever it takes for long-term results.  Dr. Schaub told us that he would call us after the meeting on Friday and tell us their decision.  We also met with Dr. Phan on Thursday, who is also part of the surgical branch at NCI.

While NCI is an incredible resource and the world pioneer of cancer research, they are also, of course, biased to their research (which they should be, that’s not a negative). Because things were moving so quickly, we wanted to get another opinion about treatment.  There are about 3 options for me and the key is getting them in the right order.  We have to make sure that we try them in an order that doesn’t exclude any of them later. Luckily (another thing to be thankful for), my step-father has a good friend who is a melanoma expert from University of Pennsylvania. He has been terrific in talking us through our options and advising on questions to ask and things to look for. He also got us an appointment with Dr. Lynn Schuchter at UPenn.  Yesterday (Friday) we went to Philly for the day to meet with her (I should mention that we live in the DC area – Takoma Park, MD to be exact – so Philly is only about a 1.5 hour train ride for us – again, we are thankful).  She told us about BRAF-specific therapy (BRAF is a mutation that you do or do not have in your melanoma tumor, we are in the process of having my original tumor tested to see if it’s there or not). This treatment has much fewer side effects than the TIL cell treatment.  It’s a pill and is easy on your body. It is showing good success of about a 75% response rate and slows progression for an average of 11 months.  If my tumor status comes back positive for BRAF, I would be eligible for this treatment (which is also currently in clinical trial form). After talking with her in-depth about the pros and cons of doing one treatment before the other, we agreed that it would be acceptable to try the TIL therapy first and the BRAF (if I’m eligible) second.  While the TIL treatment will be much harder to go through, I decided that I wanted to go through the most aggressive treatment first.  Right now I don’t have any symptoms from the cancer.  I am otherwise healthy and strong and realistically this is the strongest I am going to be.  I want to make sure that I go through the harsh treatment now, while my body can handle it the best.  I am worried that if I try something else first and it doesn’t work, and I end up doing the TIL treatment anyway, by that time I won’t be as strong – the cancer will be worse, I will be feeling worse, and I may not be able to tolerate the treatment as well.  I am also afraid that, in that scenario where I try something else and it doesn’t work, I will feel like I wasted that time and I am afraid that there is not time for wasting.

Friday late afternoon, Dr. Schaub called and told us I was accept to the TIL trial and they wanted to begin next week.  SO EXCITED!!!!  We only found out 3 days ago that I have cancer and we already met with the top experts, had a plan for treatment that we were happy with and felt good about, and were getting started so quickly.  I am so thankful that this all feel into place as quickly and as easily as it did.  I am tempted to take that as a sign that the universe is working in my favor and isn’t going to let me down. 

So that’s the story so far, those are the details and the background. I decided to write this blog to document my experience on the TIL trial. We all know that medical research exists, but there is a vast misunderstanding about clinical trials. They get a bad rap.  They are portrayed as using people like guinea pigs.  But that isn’t true.  Medical research is vital to the advancement of disease treatment. Every single drug or therapy or treatment that is currently available, had to first go through clinical trials before being approved for use in the general public.  My hope is that anyone reading this will get a personal, up close look into my experience in a clinical trial at NCI.  Because of this trial, I am confident that I will see my son grow up.  And even more importantly, I am confident that my son will have a mother. I have a 14-week old baby and I have cancer. He only exists because I willed him into being.  I decided I wanted to bring a human into this world and so I did.  In doing that, I made an implicit promise to this little one that I would give him the best I possibly could.  That I would be there for him always. That I would teach him and guide him.  That I would comfort him when he’s sad or sick, and delight with him when he’s joyful.  To fulfill my promise to him, I have to be here.  I am not scared.  I am not sad.  I am prepared to go through hell.  I will fight this and I will win.  I don’t have any other choice.  Every morning it feels like I am waking up into a nightmare, but I open my eyes, look at my wonderful, supportive, absolutely amazing husband beside me, see our perfect little boy, feel the overwhelming love of my family and friends, and I greet the day with a smile.  I am so thankful for everyone in my life.  My family and friends are the most amazing people I know.  I feel like an impenetrable force field of love has been created around me. This force field will protect me.

I love you, Jeff.  You are the most amazing man I have ever known.  Your strength and support have amazed me and I know that you will carry me through this until we come out together on the other side.  I couldn’t do it without you.  Thank you in advance for everything you are going to have to go through for me. I promise to take care of you until we are old and gray.

I love you, mom and dad and Linda and Bill.  I love you, Diane and Don. I am sorry for putting you through this, but don’t be afraid for me.  I am strong.  I will win.

I love you, all of my family and friends. The amount of support you have shown already is amazing.  I am so lucky to have such wonderful people in my life. Each and every one of you is incredible and I am so thankful for you.

I plan to update this blog daily.  We will see what happens together.  My journey is just beginning and while I’m not sure what’s going to happen along the way, I am positive of the final outcome.

13 comments:

  1. Jamie,
    You don't know me but I follow Clayton Morris on Twitter & he just
    Comented that a childhood friend and new mom just found out she
    Had cancer. He gave your blog address & asked for prayer for
    You. Our family will be praying for you. We will be thinking about
    You & checking in on your blog.
    Debra - Choctaw, Ok

    ReplyDelete
  2. Jamie,

    Ditto Okie Preachers Wife. I too found your blog because I follow Clayton Morris on Twitter. You have an amazing attitude and a very realistic knowledge of what you are facing. You will be in my prayers. While I may not be able to comment on your blog when you post, I will read your posts every time I see it pop up.

    Godspeed,
    Lillian - http://lillian-davis.blogspot.com/

    ReplyDelete
  3. Jamie, I have nothing to sell you, no books, no snake oil, but I do have years of knowledge and research to share.
    Blessed are those who have faith and have not seen.
    Have faith.
    I'll furnish the how, you furnish the faith.
    barbielee @ gmail.com
    slide it back together for a working link

    ReplyDelete
  4. When you beat the cancer back, when your son is, say, 20, and when this blog is turned into a true, tough, and inspiring book, I want you to autograph my copy.

    ReplyDelete
  5. Jamie - Renee sent your blog along and I just wanted to let you know you and your family will be in my thoughts and prayers. Your strength and determination are insipiring!

    Becka Goldberg

    ReplyDelete
  6. Truly inspirational Jamie! Fight the good fight with all you've got girl...I believe in you.

    ReplyDelete
  7. Jamie - My dad and Donnie are cousins and I feel very close to Donnie and DIane. I have only met Jeff once but we plan on coming to DC in April when Donnie and Diane are in town for the Sox game to meet you and Kai. I'm so sorry you are going through this but you sound like an incredibly strong person and found your blog inspirational. You are in my thoughts and prayers.

    ReplyDelete
  8. Jamie - Even though we have not met you YET, we will. Jeff and Kai are so lucky to have you - you are indeed an extraordinary woman. You thank everyone else but we thank you - for the strength you show. We have no doubt that you will beet this thing.
    Ruthie & Ken

    ReplyDelete
  9. Jamie ~ You are the most amazing woman I think I have ever known... and that includes my Grandma! (and I know you know how incredible Grandmothers are :-) Your excitement is awe-inspiring. I can not begin to put into words how every ounce of my being is sending positive vibes to you, your medical team, and your family. Kai is a very lucky little boy to have you as his Mommy. There is nothing like your child to motivate you to do things even you never imagined you could do! I look forward to positive updates on your blog. Love and hugs, Judy

    ReplyDelete
  10. Jamie-
    You are an incredible woman. Kai is so lucky to have such an awesome Mommy. You will beat this, I know you will Your force field will be here to protect you.
    Love you,
    -Donna

    ReplyDelete
  11. Jamie: You're an inspiration to many, but there will be days that try to rattle you. Keep your network of friends and the keepers of faith in your life close by. Please count me among them - Ernie [6 years cancer free]

    "...Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.” - Joshua 1:9

    ReplyDelete
  12. Jamie,
    Sorry to hear about your confrontation with the beast, Melanoma. As a stage IV Survivor, I can tell you that you must gather a team of experts to help you climb Mt. Everest.

    If you are Braf positive, contact Dr. Flaherty in Boston. He is conducting a trial with BRAF + MEK inhibitors. They are seeing great responses.

    Back at NCI, The TIL therapy see a 72% response rate. I don't know what the Complete response rate is , but I believe I heard it to be around 36 %.

    If you need someone to talk to email at dbreitfe@rochester.rr.com

    Or go online and see my Blog Melanoma Missionary

    Melanoma_Missionary


    Melanoma and the Magic Bullet


    Kind Regards

    Jimmy B

    ReplyDelete
  13. No, no, goddamnit, no. Telling your loved ones did not cause them pain. The freaking cancer caused them pain. Do not ever fall victim to cancer's lies that telling others hurts them. Excuse me for anthropomorphizing a disease, but it's like rape or domestic abuse. Silence just further enables the evil.

    If we cry, we cry for you, not for anything you have done. The worst hell would be knowing we could have been here for you but we weren't.

    Love

    Jan's friend Kitty

    ReplyDelete