Saturday, October 24, 2015

Tarceva Side Effects

After Jim’s seventh lung cancer recurrence in October of 2014, his oncologists agreed it was time for him to try Tarceva. We were out of options after three series of chemotherapy with multiple agents, treatment with standard radiation, and three series of targeted radiation. He has been taking Tarceva daily for almost a year and I am beyond happy to report that it is working. The cancer, though still present, is stabilized. In a few weeks, we will do a PET/CT—the third since he started the drug.

As with any drug, one must weigh benefits verses adverse reactions. In Jim’s mind, the benefits win. The drug is easy to take—though expensive (so far our insurance has covered most of it). He is not tethered to an i.v. which has freed us to do some traveling that we couldn’t do in years past. And most importantly it is buying him progression free time.

But Tarceva can have some unpleasant side effects—-diarrhea, dry skin, split fingers, nail bed infections, and the Tarceva rash, which for him has been the worst. The word “rash” which evokes images of a baby’s behind is an inadequate description of the affliction. I imagine this “rash” is more akin to Job’s ordeal.

At week six of treatment the rash appeared—a happy harbinger indicating the efficacy of the drug. A few acne like spots on his face, head, and back were easily manageable and preferable to many of the side-effects he had previously encountered. The rash abated with no treatment.

At six months the rash returned with a vengeance covering face and scalp. Our usually helpful local oncologist wasn’t much help. He recommended ointments and lotions to prevent dry skin but nothing for the increasingly troublesome pustules. (Yuk! I hate that word but it is apt for these breakouts.) We made an appointment with the dermatologist who prescribed Neosynalar, a combination steroidal/antibiotic cream and Ketoconazole Shampoo. Problem solved.

At 9 months, the tormentor struck again—-not as bad on the face but worse in the hair. We sent these pictures to the oncologist who told us to stop the Tarceva for a few days (an unwelcome suggestion for Jim), start on an oral antibiotic, and head back to dermatologist.

The dermatologist did a culture for a yeast infection but we won’t get those results for a few days. Yesterday he started on 100 mgs doxycycline and topical Clindamycin Phosphate. We have already seen improvement. I am concerned, however, about the effect the antibiotic will have on the diarrhea which is already a problem. Perhaps we will just have to choose the lesser of the two evils.

Friday, July 24, 2015

Tarceva Side-Effects

During four courses of chemotherapy and four rounds of radiation over the past thirteen years, Jim has experienced multiple side effects: nausea, pain, mouth sores, infections, hair loss, weakened bones, pericarditis, neuropathy, hearing loss, rashes, diarrhea, splitting toes and fingers, hiccoughs, radiation pneumonitis, fatigue, necrosis of the jaw, tooth loss, joint pain, cachexia, and shortness of breath. All of the side effects have been noxious and unwelcome—until now.
Finally with Tarceva, he gets a good side effect and he doesn’t even appreciate it. Along with the Tarceva acne which we were told to expect, came one we weren’t warned about. His eyelashes are growing at an alarming—according to him—rate, so long they now bat against his glasses. They curl every which way—even protruding into his eye. The hair on his head is also coming in thicker, darker, and maybe curlier. Who can tell since he insists on wearing the buzz cut he adopted when his hair first fell out? The hair he doesn’t mind so much but the gorgeous eyelashes are totally wasted on him. I have suggested clear mascara to keep the errant lashes in line but he refuses. I think the lashes enhance his baby blues; he thinks they are an affront to his masculinity.
What’s a caregiver to do? Shall I trim them so he’s not mistaken for Caityn Jenner? Or let them grow in hopes of getting a spot in The Guiness Book of World Records? I can only hope some of you ladies on Tarceva get the bonus of lengthy lashes. For those who are not in cancer treatment, I don’t recommend Tarceva as an eyelash extender. Probably easier to go with Latisse.  

Friday, July 10, 2015

The Wellness Warrior Chooses the Wrong Weapon

Having lived through seven lung cancer recurrences and survived for twelve years with Stage III and IV cancer, Jim is unquestionably an outlier (a person or thing differing from all other members of a particular group or set). Because of this distinction, people frequently ask our advice about which cancer treatment to pursue. I wouldn’t presume to tell anyone what path to follow, but I am willing, even obligated, to tell anyone what we did and why. 
In the beginning, we researched a multitude of alternative and complementary treatments, but never seriously considered foregoing traditional cancer treatment. Still, I understand why some choose this route. “Slash, burn, and poison,” the derisive terms used by some traditional medicine opponents  isn’t nearly as appealing as the “detoxify, nourish, and supplement”  alternative plan. Lacking trust in physicians and big pharma, many cancer patients choose an alternative that promises healing without pain. Change your diet, bolster your immune system with supplements, cleanse the body of all the nasty toxins, and cancer will go running.
I have personally known two people who chose the alternative route with success. One of them, Gayle Miller, who when traditional treatments for lymphoma failed, adopted a macrobiotic diet and took the supplement Ambertrose, is still alive. The other Jess Ainscough, a vocal adherent of The Gerson Method is no longer with us. 
While I have read of many successes with The Gerson Method, Jess was the only person I knew personally who followed the directives faithfully and claimed to be cured from a nasty cancer—epithelioid sarcoma. In 2008, the doctors told Jess (after a failed course of chemo) that her only hope of a cure required the amputation her left arm—not an attractive option to a twenty-two-year-old woman. 
Jess opted instead for a more natural treatment and traveled from Australia to a clinic in Mexico where she got a jump start on the detoxification and rebuilding process that includes coffee enemas every few hours, juicing pounds of organic vegetables three times a day, and the same limited diet day in and day out for two years. Jess did all of this believing that she was healing. When new tumors appeared on her arm, she was convinced they resulted from the positive changes occurring in her body. She started a blog, The Wellness Warrior, chronicling her journey and giving tips to others who might want to forego standard cancer treatment in favor of a more natural approach. 
In 2011, when Jess’s mother, Sharon, got breast cancer, the family decided that she, too, would follow the path set out by her daughter. Unlike Jess’s cancer which was a slow-growing but pernicious type, Sharon’s was aggressive and fast-moving. She was dead within a year.
Granted, chemotherapy is no walk in the park, but I assure you, neither is the Gerson Method. Why would someone pay thousands of dollars for a cancer treatment involving a diet of thirteen fresh organic vegetable juices and five coffee enemas per day, and a basic organic whole food plant-based diet supplemented by raw liver injections, mineral supplements, pancreatic enzymes , and Lugol’s solution (an inorganic solution of iodine plus potassium iodide)— a regimen that keeps the patient essentially housebound for two years and has not been proven effective? 
People stricken with a catastrophic disease are easy marks for charlatans and crooks.They are looking for hope, grasping at straws rather than looking for life buoys. “In her promotion of Gerson quackery, Ainscough, with the noblest of motivations in the beginning, did harm and likely led some cancer patients down the path of quackery and preventable death.” (Terry Firma) Sadly Jess Ainscough died this year but only after influencing countless others to employ an alternative cancer treatment that ultimately failed her.

Saturday, April 11, 2015

Fight Cancer with a PET Scan and a Pet

He’s a fat old cat with a dowager’s hump like an osteoporotic female. Since his owner’s death five years ago, he has been my faithful companion, following me from kitchen to computer, his flaccid belly swinging from side to side as he lumbers along. As did my mother before me, I’ve derived immeasurable pleasure from his presence. More importantly, he is contributing to my health and Jim’s cancer recovery.

Animals not only provide unconditional love, they may contribute to our healing. The simple act of petting an animal can take the focus off the pain and depression that comes with a chronic or terminal illness. Studies have shown that pet owners have lower cholesterol and triglyceride levels, lower blood pressure, reduced risk of heart attack, lower anxiety, reduced pain, and less need for pain medication. A recent study found that time spent with pets decreased anxiety and depression in cancer patients. Animals can make treatment less stressful.

When the day promises to be difficult, a pet gives its human reason to get out of bed in the morning. A walk with the dog not only helps the dog but gets the dog-owner out in the fresh air for exercise and provides the possibility of increased social interaction as you meet up with other walkers and dog lovers. The attention directed to the dog can be a welcome diversion from unrelenting discussions of your health.

If your fur baby is not a dog, don’t despair. Yes, you can take your cat for a walk. When my mother moved to Memphis, I reasoned rightly that walking her cat would be good for her. Because it is difficult to teach an old cat new tricks and this one had not ever been on a leash, I bought a cat stroller. No kidding. It is a light weight, vented, kennel on wheels—much like a fold up baby stroller. Unfortunately neither Mom nor Puddy cottoned to the idea. Mom was afraid the new neighbors would think she was a lunatic if they stopped to peek at the “baby” in the stroller. And the cat…well who knows what the cat thought? Although, his disdain was obvious.

It is true that with compromised immune systems there is the risk of contracting an animal borne illness, but the risk can be minimized, according to the CDC, if certain precautions are taken. Have someone else clean the litter box or wear gloves when cleaning out cages, kennels, or performing clean-up tasks. If scratched or nipped during play time, give the wound immediate attention with soap, water, and antibiotic.

The benefits of pet ownership for cancer patients far outweigh the risks. If you have a pet, you don’t need to be convinced of the therapeutic value. If aren’t a pet owner, you might want to give serious consideration to joining the ranks of the 72 million American households that include a pet. Why not complement your chemo with a prescription for a pot-bellied pig? Go for a kitty-cat cure or a rooster remedy? Maybe get help from a hedgehog? I can’t guarantee a longer survival, but I’ll wager your survival time will be greatly enriched.

Melinda Winchester 1 Year cancer survivor and Tudie

Tuesday, April 7, 2015

Cancer is no laughing matter but when you live with cancer, laughing matters. Laughter reduces stress, improves memory, lowers cortisol, triggers the release of endorphins, and boosts T-cells.  And it's free!  Make laughter part of your daily routine. Turn off the news, get off Facebook, and try losing yourself in some of these movies. If your favorite isn't on the list, add it in a comment below.

Twenty-five Mood Altering Movies

When Harry Met Sally
Bringing Up Baby
Forget Paris
Meet the Parents
My Big Fat Greek Wedding
Napoleon Dynamite
Little Miss Sunshine
City Slickers
A League of Their Own
As Good As It Gets
You’ve Got Mail
Analyze This
Private Benjamin
Nine to Five
Raising Arizona
The Goodbye Girl
The In-laws (1979)
Father of the Bride (original and remake)
Some Like It Hot
Arsenic and Old Lace
Talladega Nights

Wednesday, February 18, 2015

When You've Had Enough

Brittany Maynard is dead.

While I don’t agree with her decision to end her life, I do understand why she decided to do it. Cancer in its later stages is a nasty disease. It can, especially if the brain is affected, rob a person of his very being. 
I don’t know what Brittany Maynard believed. I don’t know whether she struggled with the  decision to end her life. Did she believe in an after life? Did she have hope of an eternity spent with God? If she did, she must also have believed that her decision would not prohibit her entrance into that kingdom. And, if so, she was probably right. I believe God understands and forgives a person who is so distressed that he takes his own life. This isn’t a commentary on suicide and whether it is an unforgivable sin. Nor is it a debate on the morality or legality of assisted suicide. 
What does Brittany Maynard’s decision say to other cancer patients faced with a lingering painful death with no hope of recovery? When death is inevitable and quality of life is diminishing, are we obligated to continue treatment that won’t cure but will prolong the suffering? At what point does someone say, “I’ve had enough”?
Recently a member of our f.a.i.t.H. group, faced this dilemma. Among multiple life-long health problems, she was diagnosed a few years ago with mouth cancer leading to painful surgeries and reconstructions. Head and neck cancers are among the most difficult to live with. Eating, speaking, swallowing can become painful and even impossible. Roger Ebert the famous movie critic lost his lower jaw and along with it the ability to eat and speak.
I believe everyone should have the right to decide when they’ve had enough. Your action when you reach that point depends on your world view. My friend,  a God-follower didn’t want to do anything that would make God unhappy with her or jeopardize her chance to live eternally with Him. “Maybe God wants me to suffer,” she said. “Maybe I don’t have the right to make a decision that will very likely end in my death.”

Choosing to stop treatment is not the same as suicide.

Assisted suicide, in which one chooses how and when to die is different from refusing treatment and letting the disease take its natural course. Family members and friends may not understand this kind of decision. They want to keep you here at any cost because they thought of life without you is unbearable. Ultimately the decision lies with the patient. 
I am not recommending this solution. I am, however, attempting to alleviate the guilt of those who choose it. As a person who loves someone with cancer, I hope that if and when the time comes, I will honor and respect the decision of my cancer warrior to lay down arms after a well-fought and courageous battle.

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.