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Showing posts from 2014

Treatment Cycle 6 - Day 1

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Treatment was easy once again today - and now we're done with neoadjuvant chemo!!! Prior to the infusion, we saw Maddie for my checkup. She was very pleased with how my tumor is feeling, very soft with no discernible margins. I asked her if she thought it was still even a tumor or just scar tissue, and she said, "Dead tumor." The only good tumor is a dead tumor! Of course, we won't know for sure that mine is really dead until the pathology report from my surgery is completed, but now both Patients #1 and #2 are confirmed to have "pathologically complete responses" - no cancer. We also saw Dr. Hurvitz and questioned her about MARIANNE. She said that no one knows anything yet because the underlying data wasn't released, only the top line results. Roche had to release the top line results due to an SEC requirement that they disclose information that could affect stock value (which these did) - but the detail wont be announced until a future medi...

Reconstructive Surgeons

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Over the past three months, I've met with three reconstructive surgeons for consultations about my breast reconstruction following mastectomy. All three talked with me about the two reconstruction options: synthetic implants and natural tissue flaps (where your own tissue from the belly, gluts, or back is used to recreate breasts). I decided early on that I wanted implants; flap reconstruction is a better option for women who are overweight, it has a much longer recovery time, and it leaves significant scars at the donor site (plus, to be honest, it kind of gives me the willies just thinking about it). Reconstruction using implants can either be done at the time of the mastectomy, or temporary implants called tissue expanders can be placed at the time of the mastectomy. The expander has a valve that allows it to be gradually filled with saline over a period of two to three months, allowing the surrounding skin to adjust, then, when the desired size is reached, the permanent impla...

Clinical Trial MARIANNE

Clinical Trial MARIANNE has been in the news since pharmaceutical maker Roche announced the preliminary results on December 18.  In MARIANNE, a Phase III study, researchers randomized 1095 women with metastatic HER2-positive breast cancer into three arms: T-DM1 with Perjeta (the same treatment that I'm getting), T-DM1 alone, and Herceptin plus standard chemotherapy drugs (either docetaxel or paclitaxel), which is the current standard of care. The primary endpoints of the study were progession-free survival (PFS) and the incidence of adverse events, while secondary endpoints included overall survival, response rates, and duration of response.  In what came as a surprise to both the medical oncology community and Roche's investors, no significant difference in PFS was found between the three arms. This was counter to both laboratory models and the results of the Phase II trial that preceded MARIANNE, in which TDM-1 had shown more than 50% improvement in PFS over the standard of ...

Treatment Cycle 5 - Day 3

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Five down, one to go!

The Lemon Law

As long as I can remember, I have taken pleasure in my body's abilities, my strength and vigor and health. All of my happiest experiences have had some physical component - walking for miles through the streets of New York and San Francisco and Paris, hiking in Point Reyes National Seashore, climbing a glacier in Patagonia, combing the beaches of California and Hawaii and Vancouver, swimming in oceans all over the world. Though no great athlete and certainly no extreme sportsperson, I have always been able to count on my body to help me do the things I wanted to do. Because of this, one of the more difficult things for me about having cancer is the feeling that my body has failed physically - after so long as my ally, my body is now an impediment. And yet, I have begun to question if my perception of my own physical infallibility was always fundamentally flawed. Prior to having a baby, I would have said that we are born perfect. But anyone who has witnessed birth knows that a ...

Treatment Cycle 4 - Day 12

Yesterday I forgot for a while that I have cancer. We are far from home in Vancouver, and the day was busy with the small tasks and pleasures of baby care (diapers, bottles, songs, naps, burps, toys), as well as a drive through the beautiful city and a visit to the aquarium. It wasn't until dinner that my cancer was mentioned in passing, and for a minute I didn't recognize what it meant. For a minute that word, cancer , floated in the air before my eyes as something completely unrelated to myself. Then it shifted into focus and became my reality once again. The ability to forget is a luxury for someone in cancer treatment - I am extremely lucky that my body is allowing me that luxury. But it also made me think - someday, maybe a year from now, or two or three, there will come a day when I spend more of my day not thinking about cancer than thinking about it. And someday after that, perhaps I will forget for days or weeks or months at a time, and all this will be just a dista...

Treatment Cycle 4 - Day 4

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Treatment on Thursday was easy and uneventful.  The port connection was painless, my labs were good, and the infusions were simple. Four down, two to go! We started the morning with my checkup with Maddie and Dr. Hurvitz, where we found Dr. Hurvitz ecstatic over Patient #1's success. Patient #2 had her surgery on Monday and the pathologist unofficially told Dr. Hurvitz that she too appeared to be cancer-free, although of course they won't know for sure until the full pathology report is done. Dr. Hurvitz referred to this trial as the "happy trial". It will be so wonderful if this treatment becomes the standard of care for all early-stage breast cancer patients soon - I would love to feel like I not only got myself cured, but helped a little bit to make this treatment available to other women too. My questions this time were about about the amount of treatment that I'm getting - how was it decided that six neoadjuvant and twelve adjuvant treatments wer...

Dr. Kristi Funk

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On Tuesday, we met with Dr. Kristi Funk, surgical oncologist and founder of Pink Lotus. It was the first time we met her (when we went to Pink Lotus before, right after my diagnosis, she was on vacation, so we met with her colleague Dr. Miller instead). Dr. Funk became a celebrity of sorts two years ago when the New York Times published an op-ed by Angelina Jolie describing her decision to have a prophylactic double mastectomy due to her BRCA-positive status. Dr. Funk was her surgeon (also, earlier, Sheryl Crow's), and she became a household name in the breast cancer community as a surgeon to the stars. Not being a star myself, I probably would not have even considered her except that my OB had mentioned that I might want to look into Pink Lotus, where several of his patients had been treated. Our initial consultation with Dr. Miller was exactly what I needed at the exact time that I needed it - so I continued to be intrigued by Pink Lotus even though I planned to use Dr. Giuliano ...

Patient #1

I just heard from Patient #1 in my trial, who is also in the test arm and who had her surgery, a bilateral mastectomy, last Thursday. She has received her pathology report from the removed tissue: not one single cell of cancer! I have to admit, I'm holding back happy tears as I write this. The efficacy of the drugs is well-documented (for metastatic cancer at least), but there is a big difference between reading the stats in a dry clinical study abstract and hearing from a real live person who you've met and talked to that she is now cancer-free because of these drugs. I knew from the start that there was every reason to believe that they would work - but belief is so different from fact. This is a fact - they worked for her! Here's hoping that they do the same for me.

Surgical Options

Next week we are meeting with Dr. Funk on Tuesday and Dr. Giuliano on Wednesday. At this point, I'm very close to making the decision to have a double mastectomy, but I want to keep an open mind until I have had those two consultations. However, I also want to be able to explain my thinking to both doctors, so I've spent this week trying to clarify my position: 1. Because I am so young, I am concerned that my risk of recurrence is higher than average, based on data such as the following:  - A 2011 study of 1,210 Spanish patients found that non-metastatic breast cancer diagnosed at a young age (≤40 years) is correlated with higher recurrence rates.  - A 2010 Canadian study of nearly 600 younger women with a very early stage of breast cancer found that cancer recurred in the affected breast of 18% of women under 45 by an average of nearly eight years after treatment, compared with 11% of women aged 45 to 50.  - A 2010 Israeli study of breast cancer patients from ...

Treatment Cycle 3 - Day 5

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Treatment last Thursday went well - I used Emla, the numbing cream Maddie prescribed for me, on my port, so this time connecting my line was painless. And the infusions, once again, were very easy. After only three treatments, I already feel like a pro - so by the time I get into my adjuvant treatment, I imagine I'll hardly even notice it's happening. This is such a blessing - if each of these treatments was an ordeal, it would be much harder to face the remaining fifteen. Prior to treatment, I saw Maddie and Dr. Hurvitz for my usual checkup. I got to ask Maddie a number of questions that I've accumulated since my last treatment: Is my treatment chemotherapy or not? This question stemmed from a debate, mostly semantic, that Seth and I had, where he thought it was and I thought it wasn't. The answer is that he was right - technically. Technically, it is chemotherapy, because the definition of chemotherapy is any treatment that causes cell death. Maddie sa...

Treatment Cycle 2 - Day 21

On the eve of my third cycle, I am so pleased to be able to say that Cycle 2 was even easier than Cycle 1. No side effects! Even after returning to work I still am not experiencing any fatigue. And more important than that - I feel really happy. I know it's a strange thing for a cancer patient to say, but life is good. ~ In non-cancer related news, I was notified today that a piece that I wrote was posted on LeanIn.org ( http://leanin.org/stories/ anna-jacobson/ ). I  wrote it about eighteen months ago, on the plane coming home from an excellent Women in Construction conference I attended in New York. I had read Sheryl Sandberg's book, Lean In , on the plane ride out, and between that and the conference, I was all fired up. I dashed off the essay and sent it into the website, soon forgetting all about it - but continuing to think a lot about the issues that I wrote about, which became even more immediate when I got pregnant a few months later. Re-reading my ...

No Genetic Mutations

I received the results of my BreastNext test, the full panel of genetic testing - all negative! This wasn't something I was worried about (I strongly feel that I have to be extremely selective about what I worry about these days), but it's always good to get good news. BreastNext utilizes next generation sequencing to offer a comprehensive testing panel for hereditary breast and/or ovarian cancer. They start by checking for mutations in  BRCA1  and  BRCA2,  which are responsible for 25-50% of hereditary breast cancers. These are the results that I got last month. If the BRCA results are negative, as mine were, they move on to the full  panel, which includes fifteen other identified genes ( ATM, BARD1, BRIP1, CDH1, CHEK2, MRE11A, MUTYH, NBN, NF1, PALB2, PTEN, RAD50, RAD51C, RAD51D  and  TP53) .  According to Ambry Genetics, the maker of the test, studies demonstrate that mutations in the genes on the BreastNext panel can confer an estimat...

Treatment Cycle 2 - Day 11

I'm going back to work tomorrow. It's almost incomprehensible, how different my world is now from when I left work six months ago. Then, and for the prior fourteen years, my sense of self was rooted deeply in my professional life. But all that changed when I became a mother, and it changed again when I became a cancer patient. My highest priorities now are taking care of Ike and taking care of my health - so we'll see where that leaves my work. I hope to be able to give it the same focus and attention that I used to for the thirty-two hours a week that I'm doing it, but it can no longer be the all-absorbing passion that it had been in the past. It feels bittersweet that my maternity leave is ending, but the truth is that it actually ended, for all intents and purposes, when I got my diagnosis. Even though I still wasn't working, dealing with my disease became like a job - and the slow, gentle days of nursing and napping and playing with Ike were no more. I reall...

Treatment Cycle 2 - Day 5

When we met with her last Thursday, Dr. Hurvitz was extremely excited about how much my tumor has shrunk. Even though she had said that it would start shrinking right away, she was as pleased as I was that it actually did, and I think she was surprised by how much. I keep having the urge to ask her what's typical or what's to be expected, and I have to remind myself that there  is  no "typical" or "expected" for this treatment with my type of cancer - it's a trial. What I experience will become someone else's "typical" if the treatment is successful and becomes the standard of care. Prior to the invention of Herceptin (trastuzumab) in the 1990s, HER2-positive breast cancer was the worst kind you could get - the most aggressive, the most likely to metasticize, the most deadly. When news spread in 1994 that Genentech had found a drug that could not only treat it, but in many cases could cure it, patients literally stormed the gates. Inspi...

Treatment Cycle 2 - Day 1

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Today's treatment went much like the first - we met with Dr. Hurvitz for a quick checkup and exam, then went upstairs for my infusion. Unfortunately, this time when the nurse connected the line to my port it was extremely painful - it felt like she was stabbing me in the chest, which I guess is actually what she was doing. I didn't expect it to hurt, though, since last time I didn't feel a thing. They're going to prescribe a numbing cream that I can apply ahead of time for my next treatment, so hopefully I don't have to feel that again. The infusions themselves were completely painless and easy - 30 minutes of Perjeta and 30 minutes of Kadcyla, with 30 minutes observation after each. We were done by 1:30 and went home to rest. ~ While Seth was out getting us lunch, a friend from my support group stopped by to chat. She had a double mastectomy in June and is starting her last cycle of chemotherapy next week. I can't even imagine what it would fee...

Treatment Cycle 1 - Day 21

Today is the last day of my first cycle of treatment. I have been absolutely flattened by a nasty cold since last Monday, but controlling for that, I think this cycle has been blessedly easy. All told, I've had a few moments of nausea (five, to be exact) but no vomiting, a bit of mild digestive trouble (also five times), and some skin issues (although that could also be a product of hormonal changes from stopping breastfeeding). And I haven't noticed any changes at all in my energy, sleep, appetite, or mood. Heading into Cycle 2, I'm crossing my fingers that this continues to be the extent of my side effects. I had another biopsy today - and it showed that the drugs are working! At my last biopsy, on September 11, my tumor measured 7 cm x 4 cm. This time, it was 3 cm x 1.3 cm - a huge reduction, especially for only one cycle of chemo. We were told that this is what would happen, but even so, it feels magical.

UCLA Center for East-West Medicine

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Acupuncture is a central part of traditional Chinese medicine (TCM). In this ancient system of medicine, it is believed that vital energy, called qi, flows through twenty pathways, or meridians, which are connected by acupuncture points. If qi is blocked, the body can't function at its peak, so the goal of acupuncture is to open certain points on these pathways and release blocked qi.  A lot of research is being done on how acupuncture can help relieve some of the symptoms of cancer and side effects of cancer treatment. Acupuncture has been shown to help relieve fatigue, hot flashes, nausea, vomiting, and pain. Some examples: The most thorough study of acupuncture in breast cancer patients was published in Journal of the American Medical Association in 2000. In the study, 104 women undergoing high-dose chemotherapy were given traditional anti-nausea medication. In addition to taking the medication, the women were randomly chosen to receive 5 days of acupuncture, or no acu...

The Everlasting Why

The five stages of grief are well-known, but the emotional stages of serious illness are not as well-defined. For me, shock was the first, and then activity - quickly mobilizing to take action to fight my cancer in as many ways as possible - was the second. But now that the shock has passed and there is nothing else to be done until my next treatment, I am entering a new stage - asking why. I don't mean "Why me?", maudlin self-pity. But on an intellectual level, I want to know why this happened. Certain genes control when our cells grow, divide into new cells, and die. Genes that speed up cell division are called oncogenes, while others that slow down cell division, or cause cells to die at the right time, are called tumor suppressor genes. Mutations in DNA that turn on oncogenes or turn off tumor suppressor genes can cause a normal breast cell to become cancerous. That cell divides and becomes two, then four, then eight, then sixteen, and so on until millions of can...

More Good Press for Perjeta

Roche Breast Cancer Drug Appears to Greatly Extend Patients’ Lives A drug used to treat advanced breast cancer has had what appears to be unprecedented success in prolonging lives in a clinical trial, researchers reported on Sunday. Patients who received the drug — Perjeta, from the Swiss drug maker Roche — had a median survival time nearly 16 months longer than those in the control group. That is the longest amount of time for a drug used as an initial treatment for metastatic breast cancer, the researchers said, and it may be one of the longest for the treatment of any cancer. Most cancer drugs prolong survival in patients with metastatic disease for a few months at most. Metastasis means the cancer has spread to other parts of the body. “We’ve never seen anything like this before,” said Dr. Sandra M. Swain of the MedStar Washington Hospital Center in Washington, the lead author of the study. “It’s really unprecedented to have this survival benefit.” Previous analyses of the clinical...

Treatment Cycle 1 - Day 9

Nine days in, I'm still not experiencing much in the way of side effects. I've had a few fleeting moments of queasiness, but nothing severe (the first trimester of pregnancy was way worse!). Instead of my skin becoming drier as Maddie said it would, it has actually gotten oilier, and there are some faint red dots on my chest. None of these things are particularly desirable, but they are very minor annoyances in the scheme of things. The women I met at the support group yesterday who are getting regular chemo are really suffering - fatigue, bone pain, nausea, insomnia. Talking to them, I felt almost guilty that I'm feeling so good. ~ It's been exactly one month since I received my diagnosis. Only one month! Our whole world has been transformed in that time. 

Treatment Cycle 1 - Day 4

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In thinking more about my surprisingly uplifting experience on Thursday with my first treatment, I realized that another very important element of the positive environment is the "caregivers" (that's what they call the person you bring with you to chemo). It's not often that you get to be surrounded by people who all truly love each other, but that's what it felt like in the treatment room. I saw people of all different relationships - sister, friend, niece, wife, mother, and others that were harder to determine - but one and all, they were the people that the patients chose to have by their sides, and they chose to be there to support their loved ones. Seth, of course, was my "caregiver" - if I have to spend eight hours tied down to a chair, there is no one I would rather have there with me. He went home once to get me my iPad, which I had forgotten in the morning rush, and he went to Milo & Olive to get us lunch, but other than that he just staye...

Treatment Cycle 1 - Day 1

Today I started my first cycle of treatment (it's tempting to keep calling it chemo even though technically it's not - because "antibody conjugate infusion" is not something that most people would recognize). It was a long day - eight hours from start to finish - but not a difficult one. It started with a nurse, Susan, taking my blood pressure and temperature, then connecting my port and taking a number of blood samples. As promised, the port connection was much nicer than a typical needle stick - I hardly felt it at all. Jean, one of the research assistants, came by and had me do a pre-treatment survey on a tablet (some of the questions were a bit ridiculous, like "In the past week, have you needed to rest?" Who doesn't need to rest in the course of a week?). Then I went down one floor and saw Maddie and Dr. Hurvitz, mostly just to check in and say hello. Maddie measured my tumors with what looked like a sewing tape measure - not very scientific, b...