Deborah Ludwig

Deborah Ludwig
Location
New York, New York,
Birthday
May 07
Bio
Actor, activist, political junkie, & author of Rebirth: A Leukemia Survivor's Journal of Healing During Chemotherapy, Bone Marrow Transplant, and Recovery

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JUNE 24, 2012 2:04PM

Living with Cancer: Confronting the Challenge

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I was a panelist at the OMG!2012 Cancer Summit for Young Adults in Las Vegas this past spring, but I haven't been a keynote speaker for quite some time at an event, where I have the opportunity to deliver my own message. I enjoy public speaking, especially to people who are hungry for information and inspiration, as I so often am.

Yesterday, I had the honor of being one of the survivor keynote speakers, reflecting on my leukemia diagnosis and treatment, at the annual Living with Cancer: Confronting the Challenge conference at Calvary Hospital in the Bronx. I shared my experience and the actions I took to be an active participant in the healing process, be it starting a meditation practice, using guided imagery/visualization techniques and repetition of affirmations, maintaining a social life, surrounding myself with family and friends, and of course, writing, which has been my go-to strategy for healing, especially emotionally, since 1992. 

After speaking, I almost always have attendees approach me to ask questions and share their stories.  It is quite humbling when others feel comfortable enough to open up about their struggles with cancer, or in one case, a mother who was there to get information to help her nine-year-old son who is currently going through lymphoma treatment. This connection with others is what makes my cancer outreach efforts so gratifying.

Not only did I meet cancer survivors but also other healthcare professionals and staff at hospitals and cancer support organizations. In addition to these new connections, I learned about the advances being made in cancer treatment. Dr. Harold Ballard, Chief, Hematology/Oncology at VA New York Harbor Healthcare System (New York Campus) spoke about cancer treatment, both current and future trends. A couple facts he shared include:

  1. 1 in 2 men and 1 in 3 women will be diagnosed with cancer; 1 in 3 men and 1 in 4 women will die of cancer;
  2. In the early 70s, there were about 1 million people living with cancer; today, there are 12 million. While cancer diagnoses have increased over the years, those living with cancer have been living much longer than in the past, hence one of the reasons for the 12 million number. This is because the treatment for many cancers is so effective that they are now similar to chronic illnesses rather than a death sentence. This is also why there is more attention being paid to the quality of life and long-term outcomes of cancer survivors.

However dismal these statistics are, there is much to be excited about in the progress being made in some cancer treatments.  In the past, when a patient was given chemotherapy, all cells--cancer and healthy--were being attacked. Today, researchers have found and continue to develop targeted therapies. These targeted therapies hit the cancer cells or the tumors only and thus the negative side effects that occur when all cells are being destroyed—vomiting, nausea, diarrhea, hair loss—are eliminated. Plus cancer treatment is much gentler. 

Gleevec and Crizotinib are a couple of examples of targeted therapies. Gleevec is used to treat chronic myelogenous leukemia. The patient takes one pill a day and since its use began, 93% of CML survivors are alive and well. Crizotinib was developed for non-small cell lung cancer patients with the anaplastic lymphoma kinase (ALK) gene, a genetic mutation. Crizotinib is also a pill and results show that at one year, 74% of patients are alive, at two years, 54% are alive.

Vaccines have also been developed that prevent cancers. One of the most effective but controversial is the HPV vaccine (human papillomavirus). HPV causes cervical cancer. It is controversial because HPV is a sexually transmissible disease.  However, the vaccine has a 98% effective rate and is most effective when given before females become sexually active. Twelve years old is the suggested age for vaccination to achieve optimal prevention of contracting the virus. For more information about HPV, the Centers for Disease Control website is an excellent resource. (The CDC has also recommended that boys get this vaccination as well.)

For men, there is Provenge, a vaccine that has been developed to prevent prostate cancer. Like targeted chemo, it attacks the cancer cells only.

Targeted therapies and vaccines are the future of cancer treatment, but so is tailored medicine. This is very exciting because now with the ability to sequence DNA, oncologists can determine the optimal treatment protocol based on a patient’s genetic make-up. They can design a chemotherapy protocol for a particular patient based on what their genetics show he/she will respond to best. We are all different and what may work for one person, does not necessarily work for someone else.

Dr. Ballard also stressed the importance of clinical trials and how they are the only way these new, improved cancer drugs are made available to patients. Clinical trials from Phase I to Phase IV are vital in determining the effectiveness of these drugs.  To read more about clinical trials why they are necessary and what can be done to broaden access to them, see my posts on May 14, 2009, and December 6, 2007.

As much research that goes into treating cancer, cancer screenings and prevention are just as, if not more, important. Cancer screening guidelines Dr. Ballard emphasized are:

  1. For men and women colon cancer is the third most common cancer, so it is recommended that your first colonoscopy be performed at age 50 and every 10 years thereafter, or as advised by your physician; 
  2. For women, yearly pap smears, especially if you are sexually active, and yearly mammograms starting at age 40 (including monthly self-breast exams);
  3. For men, have your first prostate-specific antigen (PSA) screening at age 40, and thereafter as recommended by your physician.

All of us have some control over the prevention part. We have to take personal responsibility for our health. We cannot always prevent disease no matter how healthy we may be, but we can do everything in our power to help ward it off.  A few simple steps include: 

  1. If you smoke, stop; and avoid secondhand smoke.
  2.  If you do not exercise, get moving.
  3. If you do not eat many vegetables, increase the plant-based foods in your diet; the vegetables with the darkest color—red, purple, dark green—have the best cancer-fighting properties.
  4. If you are overweight, get the pounds off, and keep it off—maintain a healthy weight.
  5. Practice sun safety; use sunscreen, wear hats, and check your skin regularly for any noticeable changes.

 A cancer diagnosis used to be a death sentence, but today that is not the case. There is still a long way to go to eradicate the disease, but much of it is in our own hands. Information is power, and for more of that the American Cancer Society Facts & Figures 2012 is an excellent resource.

 

 

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Comments

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I found this article extremely informative. Judging by your knowledge and ability to tackle such a subject and put it onto words,
I think you are a good candidate to continue to be a keynote speaker, and a writer on the subject. Thank you for the excellent article, and I commend you on your courage and support for others who have struggling, and those who are survivors as well.
Sorry about the typo. :)
Congratulations on your EP! This article is loaded with great information, and your insight as a cancer survivor must be an inspiration and a comfort to others. The advances you mention are certainly very encouraging!
From one survivor (8 years here) to another, great post! Very informative and valuable. Thanks.
Congratulations, Roger! It's 8 years for me too. I'm so glad you are well, and thanks for the comment.
Thank you for taking the time and effort to post some elements of your speech and what you learned. We all need to stop being fatalistic about the odds and enjoy every day as survivors!
cancerdancer, thank you for commenting and congratulations on being a fellow survivor! I see from your blog that you are inspiring others with your story; that's what negative experiences of any kind are about--at least I think so. If we survive them, what of our experience may help others?
wonderful post- it is also wonderful that people are talking more about Cancer which is important for true support from individual to political ( although its best not to mention in a town meeting if near anyone in a tricornered hat). Back in 1965 when my Mother was dying of colon cancer it was not mentioned and I had no idea what was happening, no neighbors visited, few of her many friends, I do not know if they were scared, embarrassed. You are, as many here continue, letting the sunshine into darkened rooms.
Kenneth, thank you for the thoughtful comment, and yes, it is important that this disease be talked about openly, especially since it affects so many people, and of all ages.
Thank you for your informative article. I tried to take in, in spite of my deep skepticism of Western medicine's approach to cancer, chemo in particular.

In my eyes, cancer is a multi-billion dollar industry where industries benefit vastly from keeping you sick for years. Alternative treatments are unheard of. The doctors who practice them are banished from the country. It's the Big Pharma way or no way. And chemo's success rate, overall, remains abysmal.

"Two to 4% of cancers respond to chemotherapy….The bottom line is for a few kinds of cancer chemo is a life extending procedure-Hodgkin's disease, Acute Lymphocytic Leukemia (ALL), Testicular cancer, and Choriocarcinoma."-Ralph Moss, Ph.D. 1995 Author of Questioning Chemotherapy."

I'm also not sure that the 11 million person difference you mentioned is based on the effectiveness of treatments - that's a MASSIVE number obviously that we can't simply attribute to the success of chemo, etc.

My guess is that number is based on the fact that we live in an increasingly toxic world where even people who are extremely aware of how to protect themselves can't do it all and still ingest carcinogens in one form or the other. In short, the numbers are increasing not based on successful treatments...not that kind of number.

Lastly, the steps you mentioned are a good start but it's so much more comprehensive than that (and I know, it's a short article; you could only mention so much). But many of our bodies are highly toxified and need serious detox before any of the steps you mentioned would make a difference. Leafy greens aren't going to protect you from Bisphenol A, for instance.

Mammos every year are being discouraged by some doctors as well.

My take. It's a very sensitive topics for all of us because we know we could easily fall on the cancer side of the fence. And we've seen loved ones perish after years of grueling chemo, their quality of life totally diminished. And doctors reporting that they're on the "right track."
Thanks for your insightful comment, Beth. It sounds like you may have experienced a loved one going through cancer and it was a frustrating situation for you. If so, I’m sorry you had to experience it. I oftentimes believe it is harder for the loved ones of cancer patients than those of us actually diagnosed with the disease.

My goal for this post was to be positive in reporting on the facts that I learned from oncology professionals while attending the early morning session of this conference. I, alas, these days find myself focusing largely on the negative aspects of politics and current events so wanted to share good news in this one; I can be quite cynical and jaded about the world; I used to not be like this at all. While I largely agree with what you wrote, I do want to address a few of your points.

You write that you see “cancer is a multi-billion dollar industry where industries benefit vastly from keeping you sick for years.” Unfortunately, industries do benefit from illness, but I believe the medical community is working to find cures for cancers, not shirking that responsibility. There are 100s of types of cancer (when you take into account the different variations within each cancer designation). Plus once you factor in all cancer survivors with their accompanying variables—genetic make-up, weight, age, immune function, etc.—treating cancer become a mixture of science and art, really. What I find encouraging is when a drug effective in treating one type of cancer is discovered to also be effective in another form of cancer. Progress is slow, but research takes money and time and more money and more time.

I read an article today a friend sent to me about how a kidney chemo drug was used to treat a man, with ALL, who had relapsed for the second time. Through genetic sequencing, which I write about in the above post, the oncologists discovered in his RNA a normal gene, FLT3, was overactive in the leukemia cells. There is a drug, sunitinib or Sutent, approved for treating advanced kidney cancer that inhibits FLT3. He was treated last fall with this drug and remains in remission. This is what is exciting to me in cancer research. That being said, I also believe in alternative therapies.

I am all for using alternative therapies and homeopathic treatments, especially in conjunction with modern medicine. If someone opts to go the homeopathic route only, then that is their choice. I would never push anyone in that direction, but rather would encourage them to use all options available. As a cancer survivor, I know firsthand that the side-effects and late-term effects from chemotherapy and radiation are highly toxic and that secondary cancers can develop years later. But what I also know as someone who had high-dose chemotherapy, total body irradiation, and a bone marrow transplant, I have been given at least eight years of additional life, and hopefully many more. I was informed of all, and am well aware of, the results of my treatments.

As an advocate in the cancer community, I have met hundreds of people who are surviving five years or more and had traditional treatment. I know only a handful who are still here who went the alternative/homeopathic therapy route only. I believe utilizing the best of both options is a win-win for most cancer patients. As oncologists and other medical professionals become more comfortable and open to alternative treatments (and you are correct that many in the medical community are wary of it), their use, hopefully, will be more fully integrated into traditional care. We already see it happening at Memorial Sloan Kettering, Cancer Treatment Centers of America, MD Anderson, and Cleveland Clinic, to name just a few.

Ann Fonfa, the founder of The Annie Appleseed Project, survived her breast cancer without traditional treatment. She had surgery to remove her lump but refused radiation treatment and chemotherapy due to her having Multiple Chemical Sensitivities. She is a huge proponent of using alternative and homeopathic therapies and integrative medicine. You should check out her site. It’s very interesting.

http://www.annieappleseedproject.org/

You take issue with the 10 million number quoted by Dr. Ballard. While we are aware that cancers are uneven in survival outcomes—pancreatic, liver, esophageal, and stomach, a few examples where survival outcomes are still pretty dismal—according to the NIH, as of 2007, among adults, the 5-year relative survival rate for all cancers combined is now approximately 68%. Now, one could say these numbers reflect better tracking of statistics since the early seventies or that people are more open about revealing they have cancer nowadays, but it is irrefutable that advances in cancer treatments have led to increased 5-year survival rates. As you site, ALL, especially in children, now has a 90%+cure rate. Adults with ALL, of which I was one, the survival rates 5+ years have increased but not drastically; last I knew they were still below 50%, yet I’m still here. I was diagnosed in 2003 and went through treatments in 2004. Had I been diagnosed 30, even 20-15 years earlier, my outcome may not have been as positive as it was eight years ago, and remains so today.

It is absolutely true that we are bombarded by chemicals, whether in our environment or in food, make-up, toiletries and cleaning products. We need to better educate ourselves about these toxins. However, it is also the responsibility of the EPA to get more involved and increase regulation and oversight of these chemicals. Per the Safer Chemicals, Healthy Families site: “Over the past three decades, the EPA has required testing on just 200 existing chemicals and restricted only five.” The Toxic Substances Control Act (TSCA) of 1976 is deeply flawed and needs to be overhauled, and some in Congress are currently working to do just that.

And yes, we have to do more than ingest leafy green vegetables. In any purchase of food, we must also be concerned about the pesticides and other chemicals used to treat these products; that goes without saying, at least in my book. It’s just common sense. Still, it has been proven that the darker colored fruits and vegetables have higher levels of anti-oxidants, cancer fighting agents, so promoting a more healthful, nutritious diet of fruits, vegetables, and whole grains, while reducing unhealthy choices full of fat and empty calories I think is still smart.

Thanks again for your comment. I thought it was very interesting. I guess since I have been talking about cancer for eight years, it doesn’t seem as sensitive a topic to me as it may be to others; perhaps I should to be more sensitive to that ☺

Some sites for reference:
http://www.saferchemicals.org/
http://report.nih.gov/nihfactsheets/ViewFactSheet.aspx?csid=75