Tuesday, August 12, 2014

Radiation for Dummies

Radiation is one method often used in conjunction with or instead of chemotherapy to treat different types of cancer (most often solid tumors). During our cancer journey, Jim has been treated five times with radiation leading one to believe that I should know how it works. And I do—until I forget. With each course of radiotherapy, I return to my sources for a refresher on the physiology and physics involved in this complex procedure.

With Jim’s initial diagnosis of Stage IIIB NSCLC, the oncologists prescribed chemotherapy followed by radiation. Still reeling from the unexpected diagnosis and poor prognosis, I didn’t have time to worry about how it worked; I only cared that it did work. When he had the first recurrence, five years later, there were more options and I gave more time to researching those that were available.

You may be , as I was at first, not particularly interested in what is going on in the body during these treatments. But if you are interested, I can share my simple version of radiology for beginners.

X-rays, gamma rays, and charged particles are forms of electromagnetic radiation (as are light, microwaves, and radio waves) used for cancer treatment. X rays are basically the same thing as visible light waves but they have a higher energy level—enough energy to disrupt molecular bonds. These highly energetic waves can be harnessed for medical purposes such as imaging and diagnostic testing. Certain forms with even more energy are used to shrink tumors and kill cancer cells.

Radiation therapy kills cancer cells by damaging their DNA (the molecules inside cells that carry genetic information and pass it from one generation to the next). Radiation therapy can either damage DNA directly or create charged particles (free radicals) within the cells that can in turn damage the DNA. Cancer cells whose DNA is damaged beyond repair stop dividing or die. When the damaged cells die, they are broken down and eliminated by the body’s natural processes. This explains the post treatment effects of radiation. Side effects are experienced as the cancerous cells die off.

The radiation may be delivered by a machine outside the body (external-beam radiation therapy). This machine, a linear accelerator, uses microwave technology (similar to that used for radar) to accelerate electrons, then allows these electrons to collide with a heavy metal target. As a result of the collisions, high-energy x-rays are produced. X-rays are emitted when a highly energetic beam of charged particles such as electrons is rapidly decelerated — because it runs into a metal target, for example.

In 2003, for Jim, the doctors used standard radiation treatments five days a week for six weeks.The side effects included extreme, even debilitating fatigue, nausea, and some difficulty swallowing.

In 2008, they chose to treat a metastasis next to the spine with Intensity-Modulated Radiation Therapy, IMRT stereotactic radiation, a specialized type of external beam radiation targeting a well-defined tumor using extremely detailed imaging scans. Stereotactic treatments can be confusing because many hospitals call the treatments by the name of the manufacturer rather than calling it SRS or SBRT. Brand names for these treatments include Axesse, Cyberknife, Gamma Knife, Novalis, Primatom, Synergy, X-Knife, TomoTherapy, Trilogy and Truebeam. This list changes as equipment manufacturers continue to develop new, specialized technologies to treat cancers. Jim received TomoTherapy from Dr. Brian Butler and his staff at Methodist Hospital in Houston. As with any complicated medical procedure, choosing the doctor is as important or more important than choosing the type.

The advantage of stereotactic radiation is they deliver the right amount of radiation to the tumor in a shorter period of time with less damage to adjacent healthy tissue. Instead of thirty days of treatments, the mission is accomplished in five or so treatments spread over two weeks.

Why then don’t all oncologists prescribe stereotactic radiation instead of standard radiation?

It is suitable for only certain small tumors.
The preparation for treatment is longer and requires specially trained medical personnel. This is because physicians must manually delineate the tumors one CT image at a time through the entire disease site which can take much longer than 3DCRT preparation. Then, medical physicists and dosimetrists must be engaged to create a viable treatment plan.
Not every facility has the necessary equipment and personnel to administer the treatment.

Targeted radiation is not without side-effects. Jim still experienced fatigue that lasted weeks beyond treatment but it was not as severe or debilitating as the same amount of radiation spread over a six or ten week time period. A few years ago after three TomoTherapy treatments landed him in the hospital with pericarditis, inflammation of the tissue around the heart, an extremely painful, though not life threatening condition. And he has nerve damage resulting in pain and numbness. Still, in his opinion, radiotherapy is much easier to take than chemotherapy—and it’s over sooner.

However, the doctors have warned us that radiotherapy of any kind will probably not be an option if the cancer comes back to the same areas that have been treated repeatedly. Hopefully, if and when than happens, researchers will have found an alternative treatment.

Sunday, January 26, 2014

A Caregiver's Role--Then and Now

The role of a cancer caregiver is dependent on the patient’s survival time—a fact I try to keep in mind when offering advice. When I wrote Cancer Journey: A Caregiver’s View from the Passenger Seat, I was new to the job and unfamiliar with the territory. Since 2002, I have become, simply by virtue of my husband’s longevity, somewhat of an expert on caregiving.

Immediately following diagnosis, I was just trying to keep my head above water—without a plan to save myself or rescue Jim. I was frantically treading water trying to keep us afloat and not be sucked down by the undertow. Putting one foot in front of the other, I painstakingly stumbled through the cancer maze.

My job has changed as Jim’s disease has evolved—responsibilities ebbing and flowing with the course of the cancer. Caregivers wear many hats—cheerleader, researcher, patient advocate, dietician, bookkeeper, nurse, psychologist, pharmacologist, spiritual advisor, watchdog, coach, chauffeur, physical therapist, cook, prayer warrior, and pill pusher. Which hat depends on the needs of the patient at a particular time. Tasks change with the condition and status of the patient.

For the most part, caregiving is much less stressful than in the early years of our journey. Jim has been in treatment, chemotherapy or radiotherapy, at least eight times. Each time he was in treatment, I resumed my role as chauffeur and nurse. In the early years I didn’t leave his side during infusions. If it took seven hours, I was there—reading, writing, or sleeping. Lately, depending on the severity of the chemo, I don’t find it necessary to be with him every minute.

Hospitalizations remain exhausting but easier now that I speak Medicalese. Having learned the language, I am better able to communicate with physicians and staff. My role is clearly delineated and I take comfort in the regularity of the hospital schedule. I can sit at the bedside—a hand-holder, prayer warrior, cheerleader, and, when necessary, patient advocate. Someone else prepares meals, administers baths, and dispenses medications.

At home, Jim has assumed some of the duties that fell to me in the beginning. He does his own injections and dispenses his own medication—which may not sound like much but saves me fifteen or twenty minutes a day. He also orders his meds and haggles with insurance companies.

When he is in remission, my job is to keep him there. I research complementary methods, fix nutritious meals, prepare protein smoothies, vegetable juices, and try to reduce stress. I encourage him to engage in activities he enjoys (coaching, FCA, church, ball games) and eliminate stressful activities and events when possible. Weather permitting; I accompany him on a two-mile power walk.

I still go with him to doctor appointments and most scans—but not every one. However, I always am present for scan results. Even the most seasoned patient, should not endure that waiting alone. Yes, I still experience scanxiety but not quite as severe as before. I’ve learned that an “iffy” scan doesn’t mean a recurrence, that a recurrence doesn’t mean certain death, and that a biopsy isn’t always positive. I know that statistics are misleading, and even meaningless, when applied to an individual case.

One thing has remained the same from the day of diagnosis through the second primary cancer and the five cancer recurrences: When you love someone with cancer, the battle is primarily a mental one. I still fight fatigue, worry, and fear, but I am stronger than I believed I was. The human spirit is indomitable.

Tuesday, January 14, 2014

Restoring the Wounded Warrior

Surviving a stage IIIB lung cancer diagnosis for eleven years is remarkable; surviving five recurrences of stage IV lung cancer is miraculous. Inquiring minds want to know: What factors contributed to the miracle? Good doctors, good fortune, good genes, strong faith? All that and more.

In Cancer Journey: A Caregiver’s View from the Passenger Seat, published in 2010, I outlined the steps we took, or more accurately, stumbled upon, during the first seven years of treatment, remission, prostate cancer, and the first lung cancer recurrence. We didn’t know what we were doing but whatever it was worked.

Since the publication of the book, Jim has suffered four more recurrences.

2013 was a rough year. In the spring, he developed an antibiotic resistant infection, muscle wasting (common in advanced lung cancer), and a twenty pound weight loss, followed in June by his fifth recurrence. He looked bad and felt worse.

The doctors’ primary concern at that point was restoring his strength and energy. Following their recommendations with a few additions based on my research, we embarked on a protocol designed to rebuild his ravaged body and restore his health. I have benefited with him from the program which I too adopted, excepting, of course, the pharmaceutical aspects.

Jim continued throughout this time period to take the maintenance medications prescribed by his oncologists. This is not a formula for curing cancer. Nor is it a magic bullet that will keep the cancer from coming back. But when and if the cancer rears its ugly head again, we will be ready to re-enter the battle.

A note of caution: No one should engage in hormone supplementation (4 and 5) unless it is supervised and recommended by a physician for medical purposes. The other parts of the plan can be safely adopted by patient or caregiver. I will elaborate on each component in later posts.

1. Daily whey protein shakes with fruit and greens (berries, banana, pineapple, kiwi, spinach or kelp, coconut or almond milk, occasionally yogurt or peanut butter, and whey protein powder) We started , as ordered, with two a day but eliminated the nighttime smoothie after a few weeks. (You can only consume so much food.) We tried several different whey protein powders before settling on Jay Robb recommended by Susan Sullivan in our f.a.i.t.H. group. Jim developed an aversion to whey protein drinks early in treatment (2003) when Dr. Rios required them as a supplement during chemo. He still isn’t fond of them but we found the Jay Robb to be the most palatable in texture and taste. We like the vanilla and chocolate.

2. Fresh organic vegetable/fruit juice once a day. Combinations: Beet root, carrot, lemon, apple. Beet root, ginger, orange, kale, apple. Spinach, cucumber, pear, parsley. Kale, celery, cucumber, pineapple. Various combinations of any of the above with any other vegetables you like. Contrary to what you might believe, Jim does not thank me when I present him with these libations. The day may come when he takes it over-the-head rather than down-the-hatch.

3. Rest. Jim has been really good about not overdoing. The first weeks after radiation he stayed at home and slept. Gradually he added limited activity. He continues to get eight hours of sleep nightly with frequent naps.

4. Depa Provera (Testosterone) Injections (ordered by the oncologist) I had to drag him kicking and screaming but he finally agreed to take the shots—one a week for six weeks. After all the other toxic treatments he has endured without complaint, I’m not sure why he objected to this one. Was he afraid of pimples? Or that doping would keep him from the next Olympic Games? Not sure but he finally conceded. At the end of six weeks the testosterone injections were followed by a “booster” of hCG. Jim has completed two rounds of hormone therapy.

5. Human chorionic gonadotropin (better known as hCG) is produced during pregnancy. It is made by cells that form the placenta, which nourishes the egg after it has been fertilized and becomes attached to the uterine wall. The hormone HCG is sometimes prescribed for men to increase natural testosterone production during the course of therapy as a result of the stimulation of the testes by the HCG. According to our oncologist, HCG therapy can result in a continuing higher level of natural testosterone production by the testes after hormone therapy is completed. (Happily he didn’t become a soprano or develop a desire to wear my clothes.)

6. Pulmonary Rehabilitation Beginning in mid-August, Jim went to rehab three times a week, building endurance and restoring muscle mass. He started with forty-five minutes of moderate exercise and worked up to two hours. An 11/12/13 visit to the pulmonologist indicated that his breathing functions were the best they’ve been since 2008. After three months of rehab, he continues to walk and lift weights.

7. Walking As soon as he felt well enough we walked for two miles—on days he didn’t have pulmonary rehab. We probably average two times a week.

8. Protandim An herbal supplement containing curcumin, milk thistle, bacopa, Ashwagandha , and green tea extract to inhibit inflammation.

Perhaps Jim would have seen the same results if we had only followed a few of these interventions. We have no way of knowing which effected the desired changes in his health. I only know he gained weight, developed muscle mass, improved endurance, and increased energy—with no deleterious side effects. Jim is feeling better than he has in years—and so is his caregiver.