About three years ago, a new member of our Lung Cancer Survivors Support Community posted a message: she was taking Tarceva and wanted to discuss with fellow members everything about that cancer drug.
She titled her post, TARCEVA DIVAS AND DUDES DISCUSSION & SUPPORT. She saw a need to create a community within a community, and beginning with that modest post, she did it. She didn’t ask permission. She didn’t wait for us, or another member, to organize and lead a top-down discussion about Tarceva.
The ongoing discussion string became the place for our members to go to talk about Tarceva and next-generation lung cancer treatments.
The member became known by some as the Tarceva Diva, and for the purposes of this story, that’s what I’ll call her. This story is not specifically about Tarceva, or even about lung cancer, but instead, it’s a celebration of an unsung hero who helped thousands of people.
There have been well over 8,000 posts in less than three years’ time–about 250 posts per month–in just that series of hundreds of “Divas and Dudes” discussion strings. That’s a constant, dedicated stream of treatment insights from-the-front-lines of people worldwide affected directly by lung cancer.
“WELCOME TO TARCEVALAND!!!” she’d proclaim to a new member, or “newbie.” She could insert humor into the discussions without making light of the seriousness of members’ illnesses. The activity in the Tarceva sub-community grew so quickly that the Tarceva Diva created another discussion topic, TARCEVA SIDE EFFECT BUSTERS, which created yet another resource for members.
Continue reading “The Legacy of the Tarceva Diva”
Filed Under: Uncategorized
Tagged: Brian Loew, Cancer, Lung cancer, Patient Communities, Social Media, Support Groups, Tarceva
Feb 27, 2014
Once-upon-a-time, when a patient said they were taking a vitamin, most doctors would simply shrug their shoulders and say, “well, I guess its OK, it couldn’t hurt.” There was little research to judge the affect of vitamin supplements, so there was no reason to take a stand. That is no longer true.
Now we have published data on many vitamins and we can say that for most people they do not work. More importantly, there is increasing research that says manufactured, chemically synthesized nutriment compounds in a pill, can be deadly.
For this reason, I am likely to ask my patients if they are taking a vitamin and, if so, which fabricated additive and how much. Therefore, I asked Bill, while he was in the office receiving chemotherapy for Hodgkin’s disease, what alternative therapies he was using.
When he informed me that he swallowed a multivitamin (MVI), large doses of Vitamins C and E, as well as a B complex preparation, I advised him to stop.
To my astonishment he responded, “Well, you only want me to do that because you make a lot of money on chemotherapy, and vitamins might put you out of business.”
Bill’s response, he lack of trust in my advice, disturbs me at several levels. He fails to understand and does not wish to learn the present state of science regarding nutrition. In addition, there is a major problem regarding his perception of my motivations and therefore the veracity of my guidance.
Let us be clear; in the absence of malnutrition, malabsorption and a few uncommon medical conditions, there is absolutely no reason to take a multivitamin. They do not prevent or fix anything. Originally developed for starving populations and hungry soldiers during the Second World War, they have no place in a society with access to a broad range of foods.
More importantly, there is increasing data that people taking a multivitamin may become less healthy.
Continue reading “That Vitamin There Could Kill You”
Filed Under: OP-ED, THCB
Tagged: alternative medicine, Cancer, doctor/ patient relationship, James Salwitz, multivitamins, practice of medicine, Wellness
Feb 25, 2014
The two columns by Bill and Emma Keller about Lisa Bonchek Adams unleashed fury this week from supporters who questioned the manner in which Adams, who has metastatic breast cancer, “lives her disease” through her blog and Twitter feed.
Amid reams of articles, blogs, tweets and Facebook posts, patient advocate and breast cancer survivor posted Liza Bernstein grabbed our attention for posting a brilliant yet simple observation. Responding to an article in Gigaom, Bernstein noted that Bill Keller wrote this of Adams:
“Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out…”
And Keller went on to describe what those experts thought.
Bernstein and other e-patients know well that Lisa Adams is an expert. In her response, Bernstein said that while Adams “is not a doctor or a researcher, [she] is a highly engaged, empowered, and educated patient who, as far as I know, has never shared her story lightly.”
Perhaps unintentionally, Keller’s supposition that Adams is a “comfort” to other patients compared with the analysis he provides from “cancer experts” marginalizes what people like Adams bring to others affected by cancer.
Continue reading “In Praise of Lisa Bonchek Adams, Breast Cancer Expert”
Filed Under: Uncategorized
Tagged: Brian Loew, Cancer, e-patients, FutureMed, Inspire.com, Patients, Social Media, Wellness
Jan 16, 2014
“You look nice today. People don’t come to chemo in suits very often.”
The friendly and familiar receptionist mentioned as I was checking out, the always full jar of lemon flavored hard candy on the shelf between us. As I pocketed a few of the candies, I managed to swallow the nausea and metallic taste just enough to say, “Thanks. I have a job interview today.”
During my senior year in college, with medical school acceptance letter in hand, I was diagnosed with metastatic testicular cancer. Initially, life became planning surgery and meeting doctors, but early in my treatment course I received a letter that my health insurance had been exhausted and I would no longer receive any health benefits. This was after my first of four chemo cycles, with a major surgery still to come. Needless to say, this was a problem. My parents were both well educated, a lawyer and a chemist-turned-teacher, but this took everyone by surprise and presented a new crisis.
We responded by dividing up tasks. My parents quickly inventoried all the assets, including the family home, and my sister called around to all the hospitals to see what could be done. She called the local and state governments asking for advice while I simply tried to eat food and get to class to graduate on time; I couldn’t have another tuition bill on top of my health expenses. I also started to look for a job, with a job came insurance – this much I knew.
I went to the interview, a job as a management trainee in a car rental agency, with hopes that this job would be something I could get, could do during treatment, and would provide the insurance that would save my family from financial ruin at my hands – my disease. I went to a Jesuit college and learned that truth and honesty are paramount. So, I told the recruiter that I had cancer, I was in treatment, and that I would likely be done soon – all true.
I didn’t get the job. I still didn’t have insurance and my next chemo session, with its massive bill, was coming very quickly.
My sister learned that this would not be fun. One hospital said to her that they would treat me and then take us to court to get paid. Thankfully, I went to school in Massachusetts where a law was on the books that allowed me to enroll in health insurance without a pre-existing condition exclusion because my insurance being exhausted counted as a special qualifying event. I enrolled in an individual insurance plan, my care went uninterrupted, and I graduated on time. To this day, my sister and I remain grateful to Massachusetts for that single law, which is as much a part of my success as cisplatin and etoposide, the chemotherapy agents I received.
The bills still mounted, but were manageable. I survived, personally and financially. I pushed off medical school for a few years to get my life back in order, and moved on. I had many scary moments during my treatment, from the plastic surgeon telling me my arm might need amputation to my neutropenic fever to being discharged just in time for my college graduation. However, what bothers me the most was, and stillis, the sense of abandonment from my society when my insurance ended.
Continue reading “N = 1 My Experience with the New Health Care System”
Filed Under: OP-ED, THCB
Tagged: Cancer, Costs of Care, Health insurance, Massachusetts, Robert Fogerty
Dec 22, 2013
Life was getting underway the day I found a suspicious lump. My first book had just been published and was being received well in my field. I was traveling and speaking about a new research project. The phone kept ringing and there was little time to think.
I figured that was the reason why my weight was falling. It was one of those good side benefits of a busy schedule. Why worry about a pea-sized lump? Lots of women have those and they turn out to be nothing. Coincidentally, that was exactly what my gynecologist said it was: nothing but a cyst.
Two more visits to that doctor resulted in him telling me that, at my age and with my family history, there was nothing to worry about and I should get on with life. He refused my request for a mammogram, suggesting that I should relax. I gave relaxation a try until a friend told me, “You look bad. If you don’t go see your GP for another opinion, I’m not going to talk to you.” There were dark lines under my eyes and I was becoming tired and downright skinny. I took her advice. It was cancer.
When I read about young people declining to sign up for health insurance, I remember back to that time. Sure, it’s great to be young. One of the best things is thinking you have a long time before you need to worry about your body giving you major problems. And isn’t life a gamble anyway?
I’m sure many young people reason this way and to some extent they’re right. Having spent a significant part of my career studying how people reason about health, it’s no surprise to me that weighing the odds causes a good many of us to take risks.
Yet, there is no such thing as a “young invincible,” the term currently bandied about to describe adults under the age of 35.
It’s not their fault if the system is unresponsive when they attempt to learn their insurance options. But it is their responsibility, to themselves and their families, to make sure that if something does go wrong — as it often does — their insurance will afford them the care that could save their lives.
Continue reading “Think You’re Young and Invincible? You’re Young, Yes. Invincible? Maybe Not.”
Filed Under: OP-ED
Tagged: Cancer, Health insurance, Health Plans, Kathleen Reardon, The ACA, Young Invincibles
Nov 18, 2013
On February 16 of last year, I was in a New Orleans hotel room preparing for a meeting when my wife Becky called and said simply, “I have cancer.”
We knew it was possible, but that didn’t in any way lessen the impact of those three words.
I have cancer.
Everything that was right and comfortable was in that instant washed away by a million questions with no answers. At a time when we needed nothing more than certainty and clarity, there was only confusion and doubt.
Upon landing in Philadelphia hours later, I called to see how she was doing with her newly diagnosed breast cancer. Feeling numb, I managed to make one other call soon after landing. Not to friends. Not to family. Instead, it was to our insurance company.
That’s right: Other than my wife, the one person I most wanted to speak to in the world was a Cigna call center operator.
We hadn’t even had a chance to meet with her oncologist to discuss potential courses of treatment, but we had questions because we had recently changed our plan to carry higher out-of-pocket costs and lower deductibles. We needed answers to those questions so we could go about worrying about more important things.
What procedures are covered? Are the doctors at the cancer center in plan? What is the maximum out of pocket? What other limits should we know about?
A 15-minute conversation later, we were comfortable that insurance wouldn’t be an issue and had a decent understanding of what our share of the costs would be. At a time of absolute fear and confusion, our insurer provided a moment of comfort and clarity.
That is the kind of financial and emotional stress that millions of people face every day in the United States. That is also the kind of financial and emotional security the Affordable Care Act was supposed to provide — especially to those who currently lack health insurance. Continue reading “My Wife Has Cancer. I Need to Know: Will She Have Insurance On January 1st?”
Filed Under: THCB
Tagged: Cancer, Cigna, Health Insurance Exchanges, Life In the Affordable Care Act, The ACA, Tony Jewell
Nov 13, 2013
What do Louis Pasteur, Jonas Salk, Sigmund Freud and Barack Obama have in common? They all championed controversial medical revolutions and if not for their bravery in the face of conflict, billions would have died.
Sterilize instruments to kill invisible bugs? Inject disease particles to build immunity? Look into our subconscious to explain everyday behavior? Give basic healthcare to everyone? Ludicrous. That is why we named these advances after these men.
As an oncologist who has seen the fatal cost of our patchy, imbalanced and unfair healthcare system, I have to be at very least hopeful about ObamaCare; AKA the Affordable Care Act (ACA). The list of benefits is so vast that whatever glitches happen along the way, I know that cancer patients will be helped:
-No pre-existing condition exclusion: So the 31-year-old programmer with Stage 1 breast cancer can change jobs without losing insurance.
-Healthcare coverage by parents until their child is 26: So families will not lose their homes paying for Hodgkin’ s disease in a 22-year-old.
-Guaranteed payment by insurers for patients entering experimental trials: So patients with any insurance can be involved in research, and everyone benefits from the latest advances.
-Free healthcare screening: So that my 58-year-old neighbor with a family history of colon cancer gets routine exams and life saving colonoscopies.
-Uniform healthcare insurance standards: So that the 45-year-old man with stomach lymphoma I saw last week, does not have to suffer and die because his employer brought a health policy, which excluded chemotherapy.
Continue reading “The Next Great Cure? A Cancer Doctor Explains Why He Supports the Affordable Care Act”
Filed Under: OP-ED, THCB
Tagged: Cancer, James Salwitz, Oncology, Patients, Physicians, The ACA
Oct 4, 2013
A preventive breast cancer vaccine developed by Professor Vincent Tuohy of the Cleveland Clinic will be brought forward to the FDA for permission to begin clinical trials to see if it is safe and effective for use in women.
The vaccine was shown to be completely safe and 100% effective in preventing breast cancer in three animal models, (see study in Nature Medicine), and was also found to slow the growth of tumors that had already formed. The vaccine is especially powerful in inhibiting the growth of triple-negative breast cancer, the most aggressive form of the disease with the lowest survival rate.
Triple-negative breast cancer lacks estrogen, progesterone and Her2 receptors. It occurs in approximately 15% of cases is the kind of breast cancer most common in women who carry a BRCA mutation.
The initial clinical trials, called Phase I studies, will be conducted in two groups of volunteers, women with triple-negative breast cancer who have completed their treatment and are free of disease, and women who will be vaccinated shortly before undergoing bilateral prophylactic mastectomy (typically these are women like Angelina Jolie with BRCA mutations who elect to remove their breasts to lower their risk for cancer.)
The first group of women will be studied to determine the dose and effectiveness of the vaccine; the second will be studied to make sure the vaccine does not trigger an untoward immune response in breast tissue.
The vaccine targets an unique protein normally made only by women who are breastfeeding, alpha lactalbumin (ALA). In the 12 years Tuohy spent developing and researching his vaccine, he discovered that the majority of breast tumors express, or make, ALA. Priming the immune system with a vaccine so that it attacks any cell that makes ALA is the method by which Tuohy’s vaccine works.
Because the vaccine targets ALA, a protein necessary for successful lactation in healthy women, the vaccine would not be appropriate for use in women who are still in their childbearing years.
However, the majority of women diagnosed with breast cancer in the United States and other western countries are post-menopausal: at least 60% of the cases in the United States occur in women over 55; thus, Tuohy’s vaccine holds great potential as a preventive vaccine for the majority of women.
Continue reading “Cleveland Clinic Trial of Breast Cancer Vaccine Moves Forward”
Filed Under: OP-ED, THCB
Tagged: Breast cancer, Breast Cancer Vaccine, Cancer, Cleveland Clinic, Clinical Trials, Kathleen Ruddy, prevention, Vincent Tuohy, Women's Health
Sep 21, 2013
It was spring. My medical school class, two years along in our five-and-a-half year endeavor, had earned the “medicinae kandidat” degree. We were now worthy of leaving the basic sciences and research center on the outskirts of town and starting our preparatory clinical, “propedeutic” semester at the University Hospital. In Sweden, at that time, we used a lot of Latin words and phrases. Crohn’s disease was Morbus Crohn, chart notes listed physical exam findings by Latin names for the bodily organs: Cor for the heart, Pulm(ones) for the lungs, Hepar for the liver, etc.
Uppsala Academic Hospital was an imposing campus, with several tall, white towers, housing the most modern wards, laboratories and operating theaters. We were relegated to a pink stucco building that housed the old tuberculosis clinic.
The physical exam course was taught by a couple of older pulmonologists. At first they struck many of us as relics from a bygone era, but as the course went on, our respect grew. These unassuming physicians could percuss a patient’s chest wall and describe in detail what the x-ray would look like, they made us feel the tip of the spleen by turning the patient on his right side, they measured jugular venous pulsations and pedal pulses.
Sometimes we had real patients with remarkably abnormal findings to examine, but we often were charged with examining each other for assessment of normal physical exam findings.
My partner for the Lymphatic System module was Sven Björk, a slow-talking kid from the very north of Sweden. He had jet black, completely straight hair and a broad face with eyes set wide apart. He was part Same, the native, reindeer-herding nomadic population from north of the Arctic Circle.
Continue reading “Morbus Propedeuticus”
Filed Under: Physicians
Tagged: Cancer, Country Doctor, International, Lymphoma, Medical Student's Disease, Morbus Propedeuticus
Sep 3, 2013
The general practice of oncology seems to come in waves of disease. One week every breast cancer patient is in trouble, another sees multiple new cases of lymphoma or leukemia, the next it as if someone is giving away lung cancer (or perhaps cigarettes) and then three patients with pancreatic cancer end up in the ICU. This week a portion of the 240,000 yearly USA cases of prostate cancer walked in our door. The rush of cases served as a reminder that when it comes to this illness, we have a long way to go.
First, Allen. He is 73 years old and has prostate cancer in one out of twelve biopsies. The cancer has a Gleason’s Score of 6 (a measure of aggressiveness of the cancer tissue: more then 7 is particularly bad), which means it is not fast growing. We recommended that given the small amount of slow growing cancer, Allen should be watched without treatment (“Active Surveillance”). What Allen found so difficult about this recommendation is that his son was diagnosed with prostate cancer just one month ago and his son, who is 49, has a Gleason’s 8 Prostate Cancer on both sides of the prostate, and is scheduled for robotic surgery. More than having cancer, Allen is hurt by the feeling it should have been him.
Then there was Robert and Mike. Robert was in the office at 10:00am for evaluation of his newly diagnosed prostate cancer, PSA blood test 32 (high), Gleason’s 7, with evidence of invasion through the capsule of the prostate gland. Fortunately, because prostate cancer likes to spread to bone, his bone scan is normal. Despite Robert’s relatively young age (66), the surgeon recommends external beam radiation therapy (RT) instead of operating. What is bizarre and makes my head spin, was that at1:00pm, in the same exam room, in the same chair, I saw Mike. He has recurrence of prostate cancer, previously treated with surgery. Now Mike needs RT. Although Robert and Mike do not know that the other has cancer, they have worked together in the same small company for 28 years, and consider each other friends.
Continue reading “Prostate Cancer: Not a Good Week”
Filed Under: OP-ED
Tagged: Cancer, Cancer Screening, James Salwitz, Oncology, prevention, Prostate Cancer
Aug 30, 2013