I love NY and the great cancer drug developments for MBC!
Last week I had a bit of an adventure. I joined four other bloggers in NYC to serve on Novartis Pharmaceuticals Advanced Breast Cancer Advisory Board. The company flew me in the night before, and I had a couple of hours to explore the city, then dine with a fellow board participant Kathleen O’Brien, who also serves on the board of the Metastatic Breast Cancer Network (MBCN).
The next day, we met with members of the PR/Marketing team and Dr. Steven Stein, SVP, US Clinical Development and Medical Affairs. They gave each of us plenty of time to share our stories and views about living with stage 4 breast cancer. And they asked us a lot of good questions. There’s a lot of bad press associated with “Big Pharma,” but it was evident they really wanted to gain understanding and help bring more awareness to MBC, both for patients and the public at large.
In the morning, Dr.Stein shared information about targeted therapies the company is developing. I just so happen to be on one of them – Afinitor, which inhibits a target called mTOR, a signaling pathway that is highly active in many cancer cells including cells of the breast.
Another promising target is PI3-kinase, a protein that also plays a role in cell proliferation. Novartis has two PI3-kinase inhibitors on trial right now and a trial for another target — Cell division protein kinase 6 (CDK6)with the drug letrozole.
One of the frustrations about clinical trials is that often people with MBC or other stage 4 cancers are not eligible if they have been on previous treatments. Novartis has developed the Signature Program, which accepts patients based on genetic mutations, regardless of previous treatments. Patients must get tested for the presence of the relevant genetic changes in their tumor. Once the results of this molecular testing are received and verified, they will be advanced to Novartis’ board of experts who will rule on their eligibility to be treated with a relevant drug, based on the molecular ‘blueprint’ of the tumor.
The company also has a website devoted to advanced cancer and is planning a campaign to raise awareness of MBC and Metastatic Breast Cancer Day on Oct. 13. And they have a list of resources for financial assistance, including their own program, on their advanced breast cancer website.
I left the meeting feeling very hopeful that we are finally getting to the point where targeted treatments will be available soon to help help people with MBC and other stage 4 cancers live longer and better. I am living proof of that. To find out about Novartis SIGNATURE trials, visit http://www.signaturetrial.com/. To learn more about MBC and join the advanced breast cancer community, CLICK HERE.
Robin Williams' tragic death has shed a spotlight on mental health.
For a lot of reasons, Robin Williams’ death by suicide has deeply affected me. Both my father and brother ended their lives as a result of the same disease Robin had: bipolar/manic depression. I have also suffered from depression (but thankfully not bi-polar disease) in the past. It was not to the point of wanting to end my life, but debilitating enough that living my life was a chore.
My husband Mike and I were talking last night about how awful it was around 18 years ago when my grandma died. She raised me as a young child, and I was devastated. I could not shut off my mind and didn’t sleep for weeks on end. My appetite was gone and I lost weight. I darkly joked that it was my “depression diet.” Nothing brought me any pleasure, even our upcoming wedding. Mike told me how frustrated and powerless he felt. And it wasn’t the first time I fell into depression. I had a few other episodes in my twenties and early thirties; the worst time was when I did not sleep for over a month. My entire body felt numb and I felt like I was under water.
All I can say is thank God for antidepressants. At first I was very afraid to get on them. I didn’t want anything mind-altering, but as my therapist explained, if I broke my arm, I’d get a cast. This wasn’t any different; depression is a physical problem, a chemical imbalance in the brain. My brain was wired for it, and no matter what I did, I couldn’t just “snap out of it.”
What Robin Williams had was much worse. Bi-polar disease is very hard to treat. They never found the right combination of drugs for my brother Mitch. My dad had his under control for decades but sadly he died two weeks after I was first diagnosed with breast cancer. He never even knew I was diagnosed. All he wanted to do was die at the same time all I wanted to do was live.
So when I learned in 2008 that cancer had returned and this time it was stage IV breast cancer, I worried that I would once again fall into depression. I knew I couldn’t do everything in my power to fight the cancer if I was depressed. And I almost fell into depression again even with the antidepressants. For several months, I felt like I was literally climbing out of a hole. It finally lifted once I started connecting with and reaching out to others with advanced cancer. It began with this blog, then interviewing people for my book, From Incurable to Incredible. It continued with the fabulous community I found on Facebook, through my local support group, Inspire.com, and at conferences I attended. I was not alone, and I found there was hope.
According to the National Cancer Institute, depression affects 15 to 25 percent of cancer patients. This seems low, but it is important to realize that sadness, which is common when you have cancer, is different than depression. Who wouldn’t feel depressed when facing a life-threatening disease? The difference is when you can’t eventually adapt to your circumstances and symptoms continue. There are different levels of depression; some worse than others. Some signs of major/clinical depression include:
- Fatigue or loss of energy almost every day
- Feelings of worthlessness or guilt almost every day
- Impaired concentration, indecisiveness
- Insomnia or hypersomnia (excessive sleeping) almost every day
- Markedly diminished interest or pleasure in almost all activities nearly every day (called anhedonia, this symptom can be indicated by reports from significant others)
- Restlessness or feeling slowed down
- Recurring thoughts of death or suicide
- Significant weight loss or gain (a change of more than 5% of body weight in a month)
If you or a family member are experiencing these symptoms, know that you’re not alone and you are not to blame for how you’re feeling. Also know there is help, and you don’t have to suffer. To learn more about finding a qualified mental health professional, click HERE.
This cool T-shirt and my book are just a few of the perks awarded to campaign donors.
A great thing about social media is the sharing of information and support with each other. This is especially important to people dealing with cancer. I can’t imagine how I’d get along without it, and I’ve been blessed to be able to pay it forward quite frequently! Yesterday I received my scan results that once again were stable! That makes a year and half I’ve been on the same chemo (Afinitor and Aromasin) — the longest I’ve eve r stayed on a treatment.
But if you follow my blog and/or have read my book, you know that there is a lot more to surviving cancer than medical treatment. A cancer-fighting diet, daily exercise, using safe personal care and cleaning products, receiving and giving support … they’re all part of the equation. It has been my experience that most oncologists and cancer surgeons don’t fully understand the importance of lifestyle and have little information about it. I’ve had to do my own research to learn about a truly holistic approach to living well with cancer.
With that in mind, I want to introduce you to an opportunity to help people affected by cancer live longer and have a better quality of life, while providing doctors and researchers with valuable information to further understand the disease. Open Cancer Network (OCN) is a mobile application that connects all the players within certain chronic diseases communities –patients, caregivers, friends and family, doctors and researchers — with information such as diet, environmental exposures and more.
Co-founded by a colon cancer survivor, the patient-centered app creates a place where patients can track lifestyle factors, like fluctuations in appetite and physical activity, and connect and share highly relevant, curated content with others facing the same diagnosis. Together with the National Institute of Health, OCN has developed a comprehensive, easy-to-complete questionnaire that will help gather insights on environmental, socioeconomic, dietary and other factors as they pertain to the causation, treatment and recurrence of cancer. Through this collaboration, doctors, friends and family can opt to be notified if unusual behavioral patterns are detected; enabling early intervention. And even better, OCN correlates all this data to provide researchers with a greater understanding of cancer — and possibly lead toward a cure.
The founders of Open Cancer Network are launching a fundraising campaign to expand the app, which is now available on IPhone, to the web and Android setting. I am excited that my book, From Incurable to Incredible, is one of the gifts for contributing as little as $35 to the cause (also available with other perks at the $100 level). I’ll even autograph it for you! To learn more about the project, make your donation, and view a full menu of thank you gifts/perks, CLICK HERE!
A dolphin excursion is just one of the optional outings available on the cruise.
I celebrated my birthday in April going on the Thrivers Cruise sponsored by Breast Cancer Wellness magazine. It was amazing! How many people can say they spent their birthday floating on a tube through a beautiful cave in the Belize rain forest then going back to the ship to be serenaded with “Happy Birthday” by an international group of handsome waiters? The best part, though, was the fellowship and friendships formed with all the women in the group.
I enjoyed my experience so much I wanted to share details of the upcoming Thrivers Cruise. Mark your calendars for January 22–26, 2015, for the West Coast Getaway aboard the Crown Princess. The ship sails out of Los Angeles, CA for five days and four nights of fun, adventure and friendship. Packages start at $449 per person (Price does not include travel to LA, gov’t or port fees).
Beverly Vote, editor of Breast Cancer Wellness magazine tells us of some special highlights of the cruise. “There is a TV crew coming aboard the 2015 Thrivers Cruise. They will be filming two 1 hour documentaries about the Thrivers Cruise and breast cancer survivorship! And Dr Lisa Curcio will also be joining us. She is one of the leading breast surgeons in the world. Diagnosed with breast cancer at age 37, Dr Curcio has amazing information to share with us.”
Optional shore excursions include:
• Hollywood Walk of Fame
• Universal Studios
• Lunch on Rodeo Drive
• Wine tasting near Santa Barbara
• Whale & dolphin excursions
• Snorkeling, exploring, shopping
For more information, contact Connie Saunders at Total Travel and Events, 1–866-499‑4074.
Want a chance to win a free cruise? Click HERE to apply for the contest!
Me at my seventh birthday. Back then, my only uncertainty was what gift I was getting.
One of the most surreal experiences of living with advanced cancer is that you go about living your life, knowing it all can explode – like the missiles in Israel – at any time. I see it happening all the time with friends on social media who announce scan results — “Not what I wanted to hear … the cancer has spread.” Probably most people wouldn’t even know what they’re going through if they see them. Many of us, like me, keep their hair and are not gaunt or pale.
I remember my late friend Evan Mattingly saying, “Cancer must be making me better looking because people are always telling me how good I look!” This has been my experience. I just compliment them back. I am so grateful that I am feeling relatively healthy and able to travel and do activities. But I still live with an underlying sense of uncertainty that I try to tuck away until it is almost impossible to avoid. That comes at scan time. I have been on the same regiment – Afinitor and Aromasin – for a year and a half. It has been doing a wonderful job making the cancer behave, and even making some of it disappear. Next week I’m due for scans and it seems like an eternity. There is always a little voice inside my head saying, “Has my luck run out? Is that pain in my abdomen cancer?”
There are several things that help me get out of this mindset. I’ll list them here as it might help others going through the same thing:
- Stay in the moment. How do I feel right now? What am I doing right now? Am I breathing, functioning? Good. Focus on what’s in front of you in the moment.
- Faith in God. God has carried me this far; I can trust this will continue.
- Be proactive. Expect the best but prepare for the worst. I have been researching promising clinical trials to have in my back pocket if the scan shows growth.
- Practice gratitude. I can focus on what’s good in my life, which above all is my husband and daughter. I have great extended family and friends. I get to do what feeds my soul like my upcoming book and this blog. I have visited beautiful places. I feel good enough to take walks around the neighborhood. The list goes on.
- Reach out to others. Helping others helps me feel connected and takes my mind off my own worries. I can also reach out to friends and support systems to express my feelings and situation.
As Gilda Radner said, “Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next.” Whether or not you have cancer, I think these are wise words. We all live with uncertainty, but to be present — that’s the real gift.
Want to share more about this topic? The Share Support Group, which supports women facing breast, ovarian and metastatic cancers holds evening telephone support sessions twice a month. There is one tomorrow night (July 24). For more information, go to http://www.sharecancersupport.org/share-new/support/groups/living_with_uncertainty/
Life is a beach and then you fry ... unless you take precautions! Our slice of paradise on vacation.
Our family just returned from a fabulous vacation on Ocracoke Island off Outer Banks, NC. We had a great time going to the pristine beach, eating seafood and riding around in golf carts. Too bad our vacation was cut short by Hurricane Arthur.
First on our list of things to do was to go to the beach, so we headed out our first full day at 10 a.m and stayed until 2 p.m. Even with sunscreen, we all got burned. We decided that for the rest of the trip we wait until after 3 p.m. to avoid most of the harsh UV rays. It’s usually a tough sell with my 15-year-old daughter when I urge her to wear sunscreen and cover up as much as possible. She thinks I’m being paranoid. After all, we’re both dark complected and rarely burn, but I know that is especially important for her to be careful. A recent study published in the journal Cancer Epidemiology, Biomarkers & Prevention, suggests that experiencing five or more sunburns between the ages of 15 and 20 could increase melanoma risk by 80 percent.
Before we left on our trip, I met with LeAnn Blair from Melanoma Know More, a local organization dedicated to awareness, prevention and treatment. As the dog days of summer are here, I thought I’d share some prevention tips from their site:
- Avoid sunburns. Getting a base tan to protect from sunburns is a myth.
- Limit sun exposure, especially between the hours of 11 a.m.- 4 p.m. when the sun is the strongest
- Wear protective clothing – such as long sleeves and hats – when exposed to sunlight
- Use at least a SPF 30 sunscreen – applying 30 minutes before going out and 1-2 hours thereafter. Use at least one ounce (a full shot glass) of sunscreen to cover your entire body
- Use sunscreen as a part of your daily moisturizing ritual and when you’re outside for than 10-15 minutes, even on cloudy days and during the winter
- Check yourself monthly for changes in moles or anything that looks suspicious.
I make it a point to visit my dermatologist regularly to check out any weird spots. Mike noticed one on my back recently, which turned out to be pigmentation due to aging, but I’m still glad I went. About 15 years ago, I had the pleasure of meeting the late Maureen Reagan, daughter of the former president. She had late stage melanoma at the time, and one of the things she urged us was to get a yearly body check from your doctor. From my experience, it takes a long time to get scheduled for an appointment if you’re a new patient, so I recommend getting in before you notice a problem.
Even if it does turn out to be melanoma, there are treatments available and more are coming on the horizon. Mark Williams, a super stage IV melanoma survivor who will be in my upcoming book, Miracle Survivors, is a living testament to hope with melanoma. Diagnosed in 2007, he has shown no evidence of disease since 2009.
Concerned about a mole? Melanoma Know More’s website has a handy chart, that shows how suspicious moles appear. In most cases, moles turn out to be nothing, but it’s important to be proactive. Happy summer!
Little Paul with George H.W on Air Force II.
This past weekend, Mike and I went to a very special wedding. In fact, Mike was part of the wedding party, which made it extra special. For those of you who read From Incurable to Incredible, you might remember Paul Falk, who was diagnosed with terminal leukemia at age 9. He was so sick and treatments were so limited at the time (1986), his doctors gave him at most six months to live. Being a determined and intelligent kid, he “wasn’t having any of it.” Paul was enrolled in a clinical trial and was the only child who survived. This past Saturday, he got married to his long-time girlfriend Melody and became father to her two beautiful girls from a previous marriage.
It was a lovely, rainbow-colored event, and the weather was absolutely perfect. As I watched them exchange vows with the evening breeze ruffling my dress, I was reminded it indeed was a wonderful world, as their first dance song proclaimed. It reminded me, after going to so many funerals, there is hope and new beginnings in life.
After Paul was done with treatment, a local organization that funds “wishes” for kids at Children’s Hospital funded a trip to meet President Reagan. As it turned out then Vice President George H.W. Bush took a special interest in Paul, inviting his family on Air Force II and giving him the royal treatment. The elder George had lost a child to leukemia and wanted to make sure Paul’s day was extra memorable. At the wedding, I got to sit next to the couple who lead the organization that sent Paul on his amazing trip. After Paul contacted them and gave them a copy of my book, they decided to pay for Paul’s college tuition. The blessings continue.
It’s not that Paul hasn’t had struggles since his victory over cancer. He’s still building his life back after years of alcoholism and addiction. In the book, he describes how he realized he needed to get back to that little boy who said “No way in hell” he was going to give up. And he remains clean and sober to this day.
I was so inspired by this act of hope and optimism, I suggested to Mike that we renew our vows on our 20th wedding anniversary. That’s three years from now, the year Chrissy will graduate from high school. If I keep up with this blog, I’ll certainly post pictures! As someone with stage IV cancer, I know there are no guarantees. But that is one of my goals and like Paul, there is no way in hell I’m giving up.
The happy family on wedding day
I loved the movie, but didn't like the way it made me feel
I sped through the book, The Fault in the Stars. and so did my daughter. Then we went to see the movie. I didn’t cry during the book; I just felt sad. Add in some great acting, sentimental music and all the other trappings of a great movie, and I was a sobbing mess. I told myself they were cleansing tears, but they weren’t the kind that made me feel better. It reminded me about the mortality facing me as I look at my 15-year-old daughter: that powerlessness that perhaps I won’t be around to see her grow into a woman. Thank God for distractions like a nice walk with my husband and an evening of Netflix to put me back into my one-day-at-a-time state.
A beautiful quote from the movie is when dreamboat Augustus Waters says, “That’s the thing about pain. It demands to be felt.” I struggle with that a lot.
I’ve been talking to my therapist about stuffing my feelings with food, Facebook and television. The food part is the most worrisome because I have gained weight and am not happy with the way I look or the possible health consequences of it all. I have developed a “Just f*** it” attitude about my diet. For five years, I obsessively stuck to a regimen of no-sugar, no-white flour, no-alcohol, no-dairy, diet. I swallowed an inordinate amount of supplements. And still my cancer kept coming back. So I’ve eased up a bit, maybe too much, to be honest. I still buy organic, don’t drink soda or eat red meat, but I’ve decided I want to have fun, too. And here I am 15 pounds overweight. So maybe instead of reaching for food, I can try to figure out what’s eating me.
So is Augustus right? I think to a point. The thing about living a long time with metastatic cancer is the pain is always under the surface. I can always go to the deep, dark place about fearing “oblivion,” a point in time where I’m no longer here in my physical state. I can imagine my daughter’s and husband’s life without me. I can fear the physical pain of dying. But I choose not to go there, because it’s well, too painful. And frankly, I believe it is not good for my physical or emotional health to be in that state, at least not all the time.
There is that part of me, my faith, that reminds me that God is in charge. And so far, God has taken pretty good care of me. I can appreciate each day for what it is. Today I woke up. That’s a great start! I had an appointment at my oncologist’s office yesterday and he didn’t even see me. I just got a port flush (the catheter used to infuse chemotherapy). I was annoyed at first; but obviously there is little to talk about these days. I don’t even get infusions anymore thanks to Afinitor, an oral chemo I’m taking.
Sure, next month I get a PET scan, and who knows what it’ll say. That’s the life of someone in limbo like me. I could need to change treatment or could be celebrating that what I’m on is still working. It sucks, but do I need to wallow in fear about it until then? It will come up as it always does, but the length of time I feel the fear has become less over the years. I realize that worrying about it won’t change the outcome.
I could definitely relate to the movie’s theme of losing friends to this awful disease. It is just obscene how many young women and men are dying, and they all seem to happen in clumps. I don’t go to the place where I’m thinking “Am I next?” I have found that feeling the pain of their passing, then moving on with my life is the only thing I can do to keep my sanity. I continue my life, one day at a time, in their memory. They deserve to be remembered by the people who loved them.
So I guess the caveat of the whole thing is pain demands to be felt, but the danger is hanging on to the pain. Because the thing about pain is, it’s not meant to last forever.
Me back in the day, a victim of 80's fashion
Last weekend I had the opportunity to get together with my “old gang” — friends I hung around with in high school, college and in my 20s. I was a little nervous; a couple of them I hadn’t seen in a couple of decades. But we were immediately joking and telling stories like we did back in school. I forgot what it was like to laugh so hard that I cry. It was so fun!
I’ve been doing a lot of reminiscing lately. For instance, right now I’m listening to Depeche Mode on Pandora radio. It reminds me of simpler times, BC – before cancer. Looking back, the things I worried about seem so trivial – finding or keeping a boyfriend, whether or not I had weekend plans, and thinking I was not good-looking enough or fat – when I was about 20 pounds lighter than I am today. I didn’t really love myself or realize how blessed I was.
Of course, youth is often wasted on the youth. I never dreamed of the life I had now or that I’d be looking death in the eye starting in my 40s. I didn’t know that having a boy/man in my life or being beautiful was not the key to happiness. But most of the time, as I was reminded, last weekend, I had a lot of fun.
And I still have fun today, even with the shadow of cancer looming over my head. I had an amazing time on the Breast Cancer Thrivers Cruise in April, spending quality time with my old college roommate – we were cabin mates this time! I even got to spend my birthday on the cruise, complete with ice cream and cake after dinner!
These experiences reminded me that I’m not too old or too sick (thankfully) to live a life of joy and laughter. I may be 51 in my body with all the aches and pains associated with cancer treatment and aging, but that young person is still inside of me. I’m lucky because I get to experience some of that joyful exuberance with my 15-year-old daughter. I live vicariously through driving her friends places, going to band competitions and track meets and going clothes shopping with her. And I continue to nurture my inner young person by making sure I get enough laughs and connection with others. I won’t be riding roller coasters at the amusement park, but I think staying young at heart is the best medicine for me rather than focusing on the roller coaster ride of cancer.
Some tips for recapturing your young self:
- Get together with friends who knew you back in the day and find things to belly-laugh about
- Go to the pool and practice standing on your hands in the water or just floating on your back
- Read a young adult book or watch a young adult movie (or you can flashback to some John Hughes films like Pretty in Pink or Breakfast Club)
- Spend time with some young people (if you don’t have a child or grandchild, borrow one of your friends’)
- Eat a refreshing summer treat (ice cream may not be good for you, so try watermelon or a fruit pop)
- Play miniature golf or do some other summer fun activity
- Listen to songs from your youth or go to a rock concert – dancing and/or singing along is required
- Take a vacation and get away from it all. And if you dare, do something you’ve never done before.
Gail Ingham continues to beat the odds.
Gail Ingham contacted me on my Facebook fan page as I was busily finishing my manuscript for my upcoming book, Miracle Survivors: Beating the Odds of Incurable Cancer. If only I had heard from her a month earlier; she would definitely been in the book. Oh deadlines! But I wanted to make sure you hear her amazing story, so I’m featuring it today.
My journey started 29 years ago. I had pain and never experience abdominal main unless I was in child birth. After an examination they determined there was a mass. During surgery the cancer was both ovaries, out- of the uterus, through the wall of the rectum and four malignant tumors towards the intestines. After surgery, I had 13 chemo treatments that consisted of Cytoxan, Cisplatin and Adriamycin.
I could not eat most items; they made me sick. The only thing that tasted good were vegetables and plant foods, so I started eating them multiple times a day — even for breakfast with my eggs. I prepared my own spaghetti sauce from fresh tomatoes, fresh herbs and spices (no sugar) and still do this even today. I was fortunate;, with the eating changes, I did not miss one treatment.
I had two young sons, which helped keep me active. It was agreed that I would send them off to school and at the end of the day, I would meet them when they got home. Staying active with them helped with the neuropathy that comes from chemo. I also discovered that horseback riding is great therapy for neuropathy. It helps balance and build the body, plus it works the brain. To further help with balance, I also did simple exercises in the kitchen while fixing food, cleaning, or just being with the boys. I still work on it; not just because of the cancer, but also because of getting older.
I have been cancer-free for 29 years. Because I believe in total healing, I still work at being healthy naturally. That means I continue to eat healthily, exercise, and incorporate relaxation, laughter and enjoying family of friends. I am extremely fortunate I do not need medication because of health issues from the cancer.
Cancer is something you have to fight and fight hard to beat the rest of your life. After you have been diagnosed with cancer you have to realize there isn’t too much you can do to get to your optimum health. I speak to groups to help make an awareness to this disease. I encourage women to get a full gynecological exam on a regular basis because pap smears do not detect ovarian cancer. Just as important, I want women to know there is hope; don’t give up.