Living With Cancer

Hair Loss and Chemotherapy

The anticipation of possible hair loss (the medical term is alopecia) can be one of the most difficult and stressful aspects of cancer diagnosis and treatment. A cancer diagnosis robs us already of so much of our “normal” life- to have our outward appearance radically altered, especially in societies that place such a premium on physical appearance, can be devastating.

The good news is that most of the chemotherapy drugs used to treat appendiceal cancer do not usually cause complete hair loss. FOLFOX, the combination of the three chemotherapy medications oxaliplatin, 5-FU and leucovoran commonly used to treat appendiceal cancer, rarely causes complete hair loss though they may cause thinning of the hair. Irinotecan, another drug that may be used in combination with 5-FU and leucovoran for those who cannot tolerate oxaliplatin can cause complete hair loss in approximately 30-35% of those receiving it, but more commonly also causes only thinning. Intraperitoneal hyperthermic chemotherapy also does not commonly cause hair loss, though in some cases complete hair loss may occur.

In the past, techniques such as icing the scalp or wearing a constrictive cap or band on the head have been tried in an attempt to prevent chemotherapy from circulating to the scalp and causing hair loss. These techniques have not been proven to work and have pretty much been abandoned.

Some things about chemotherapy-related hair loss that you should know know:

  • If hair loss occurs, the loss of hair may possibly include loss of eyebrows, eyelashes, underarm hair, pubic hair…ALL hair.
  • Hair loss does not usually begin to occur until after the second or third chemotherapy treatment, though it may begin to occur a week or two after the first treatment. Hair may come out in large clumps when it does start to come out. At this point some choose to shave their heads versus having areas of patchy baldness.
  • Hair usually begins to grow back at 6-8 weeks after chemotherapy ends.
  • When hair grows back, it may come back a different color, texture or may grow back naturally curly even if it was straight prior to chemotherapy. These changes may last a year or two or may be permanent.

Suggestions for dealing with potential hair loss:

  • See a wig specialist or go to a salon that offers wigs prior to starting chemotherapy. At that time your hair color, fullness and texture can be matched with existing wig samples.
    The stylist can also see your normal hair style. If you lose you hair you will be prepared ahead of time and no one will see a drastic change in your appearance. If you purchase but do not cut the wig, you may be able to return it in the event you do not lose your hair.
  • Cut your hair short if you expect to lose your hair, as it will take less amount of time for you to look “normal” again when your hair begins to grow back
  • Wig prices vary. Wigs can cost under $50 for synthetic hair, or over $300 for human hair. Insurance may cover the cost of your wig if you have your doctor write a prescription for it. The prescription needs to be written for a “Cranial Prosthesis” or “Hair Prosthesis”. Check with your insurance company to be sure of the wording required for coverage.

Even if you get a wig, you may want some scarves or turbans to wear at home or at night. Many I know are uncomfortable with wigs and say they feel hot and itchy, they only wear them in public and go “natural” at home!

Colostomy Information

A colostomy is a surgical procedure that brings the bowel, or colon, to the surface of the abdomen to eliminate waste. The colon, (also called large intestine or large bowel), is a long tube-like organ that transports waste from digested food to the rectum, which acts as a storage pouch. Bowel movements (wastes) are stored in the rectum until they are passed out of the body. The large bowel is approximately 5 feet long, and serves the purpose of removing water from the waste of digested food as it travels through the body. This is why when the bowel is irritated and waste moves through the colon too quickly for the extra water to be removed, diarrhea occurs. Usually in cases of appendix cancer half of the right side of the large colon, where the appendix is attached, is removed. The name for this procedure is a right hemicolectomy.

In some cases, though, when appendix cancer has spread extensively into the abdomen and affected a greater portion of the large colon, more of the large colon may be removed. In most cases, the two remaining ends of the bowel are sewn or stapled back together; they are reconnected and no colostomy is necessary. The medical word for the reconnection of the two remaining ends of the bowel is “anastamosis“. In some cases, though, the two ends are not reconnected and instead a the segment of the colon carrying the waste products is brought to the outside surface of the abdomen, this is called a colostomy. The part of the colon that extends to the surface of the abdomen is called a colostomy stoma. A bag is attached to the area of the abdomen where wastes products come out of the stoma, and the waste products are collected in the bag. The bag can be emptied or changed when needed. In some cases the colostomy is only temporary, and after several months the two ends of the colon are surgically reconnected in another procedure, and bowel movements are again eliminated in the normal way. In other cases, the colostomy is permanent and the patient will have the colostomy the rest of his or her life.

In cases where the entire large colon needs to be removed, the stoma will be created from the end of the small intestine (ileum) and brought to the outer surface of the abdomen. In this case, the bowel movements, or waste, will always be liquid as there is no colon to remove the water. Instead of being called a colostomy, the term ileostomy is used as the ileum and not the colon is brought to the surface of the abdomen. Sometimes a surgical procedure can be done which creates a “continent ileostomy“. In this case a pouch is created from small bowel inside of the abdomen to hold the liquid waste and a valve prevents the waste from escaping. In this case an external bag does not have to be worn and a tube is inserted several times a day into the stoma to drain the liquid bowel movement from the pouch.

The colostomy stoma is normally dark, pink, and moist; it looks like the normal tissue on the inside of your mouth. It is usually no bigger than the size of a silver dollar. In some cases the bowel movements coming through the colostomy will be solid, as they are normally when they are passed out of the body, but in cases where a very large portion or all of the large intestine has been removed, water will not be able to be removed from the waste, so the waste will remain liquid.

Many people live a normal and long life with a colostomy. Many people continue to work and enjoy sports, including swimming, while wearing a colostomy bag. In some cases a colostomy can be regulated so that bowel movements can be anticipated and a bag may not be worn for periods of time, but instead the stoma covered with gauze pad or a “stoma cap”. In some cases, an ornamental stoma cover may even be worn at times of intimacy.

Herbal and Complimentary Therapies

Please read first: Medical Disclaimer

Herbal Supplements

In recent years, herbal supplements have become very popular; just look at the many shelves containing herbal remedies at your local drug store. In some cases, consumers view these supplements as harmless because they are viewed as “natural” substances obtained from plants. They are also easily obtainable as no prescription is required for purchase. Herbal remedies, however, are only loosely regulated by the FDA. They are not required to be tested or proven safe prior to being marketed as they legally are “dietary supplements” and not prescription medications. The FDA can remove a dietary supplement from the market only if it presents a significant risk of illness or injury (Ephedra was pulled off the market only after it was found to be responsible for approximately 155 deaths).

Some herbal supplements may be useful, but in some cases they may also be harmful, especially when combined with prescription medications. Many herbal remedies interact with prescription medications. Some are also not recommended for use in combination with other cancer-fighting therapies. For example, the particular IV chemotherapy I received could have been 40% less effective if I had taken the herbal remedy St. John’s Wort at the time of my treatment.

I suggest that you view herbal remedies as you do prescription medications. When asked by your physician what medications you are currently taking, let them know not only your prescription medications, but also any herbal remedies you use. Check with your doctor before taking any herbal remedies, especially if you are taking prescription medications.

  • This is a link to Memorial Sloan-Kettering Cancer Center’s web site that will allow you to enter the name of an herbal supplement and give you good information on that particular remedy: About Herbs, Botanicals & Other Products
  • Another great link is to a series of short videos recently published by Memorial Sloan Kettering. It will take you about an hour to watch the videos, but they are well worth your time: Understanding Herbs and Botanicals in Survivorship
  • Fantastic claims of cure-all foods and supplements can be found all over the internet and in many magazines, newspapers and publications. Many of these claims prey on those of us who are desperately seeking treatment for difficult to treat illnesses, like cancer. This is another excellent web site with information about evaluating these advertised claims. It is published by the Mayo Clinic: Complementary and alternative medicine: Evaluate claims of treatment success

Related Links

Answers to common questions about diet and cancer from the American Cancer Society

Clinical Trials

General information I have received from National Institutes for Health and the National Cancer Institute concerning clinical trials:

Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. These studies also may show which medical approaches work best for certain illnesses or groups of people. Clinical trials produce the best data available for health care decision-making.

  • The medical care is free of charge, and a per diem rate is paid for food and housing if one has to travel or relocate to participate in a study.
  • A person seeking to participate in a clinical trial would have to pay initial travel expenses for evaluation though, the per diem rates apply only if they are accepted into the trial.
  • US trials are not only open to US residents.
  • The best number to call for a nationwide check of clinical trials (this number would have info on the types and locations of all clinical trials available in the US) is 1-800-422–6237.
  • If calling with questions regarding a clinical trial, be sure you have the Clinical Trial Identifier available.
  • To do a search for clinical trials that are actively recruiting patients, check this link: Clinical Trials.gov
    Be sure to click the very useful “Help” link on that web site
Ascites

The space between the two layers of membranes in the abdomen, the peritoneal membranes, is filled with a small amount of slippery fluid that allows the two layers to slide freely over each other. Usually there is only about 1/4 cup (50ccs) of this fluid in the abdomen. Normally, there is a balance between the amount of this fluid the body makes and the amount that is reabsorbed by the body. Ascites is the name given to a condition that occurs when too much of this fluid accumulates in the abdomen and causes the abdomen to be filled with fluid and bloated or distended. Sometimes several quarts or liters of the fluid accumulate in the abdomen causing the abdomen to become very bloated or distended.

Several cancerous and non-cancerous conditions can cause ascites. Sometimes ascites occurs in appendix cancer when the cancer has spread into the abdomen.

Some types of mucous-producing appendix tumors cause large amounts of thick mucous-like fluid to accumulate in the abdomen. A slang term used for this type of ascites is called “jelly belly” as the fluid accumulating in the abdomen is not thin and slippery, but is thick like a jelly. This is referred to as “mucinous ascites”.

In some cases hyperthermic peritoneal chemotherapy is used effectively not to cure peritoneal cancers, but as a comfort measure to prevent the huge and debilitating collection of fluid in the abdomen sometimes associated with late stage cancers.

Hospice Care

I will begin this section on a personal note. I have been a registered nurse for almost 25 years and have taken care of patients in a variety of settings. I worked for years in an inner city intensive care unit, have provided home care, private duty care and have even worked in long-term care over the course of my career. For the most part, my work in all of these areas has focused on prolonging life and averting death by providing increasingly complex medical care in the presence of illness. In most areas I’ve worked, death has been the enemy; death has signified failure. I’ve done CPR on patients at least a hundred times. I’ve been part of a Code Blue team and have defibrillated dying hearts over and over. I have been a CPR instructor for years– always fighting death to the last moment.

As a long-term survivor of cancer, I decided to try to help others survive this terrible disease. It was inevitable, though, that I sometimes came into contact with terminally ill members of the cancer community. If I wanted to continue to participate as an advocate for cancer patients, I needed to be able to also advocate for those who were dying. I began to evaluate the concept of hospice, one of the few areas of health care I had not been a part of professionally. I wanted to learn more about the goals and philosophies of hospice care. To that end, I have become a hospice volunteer. It has been a wonderful experience. It has been rewarding to assist in the care of patients who feel happy, loved, and comfortable in their last days. To see people die while they are comfortable, at peace and surrounded by love. To see families who are supported and prepared for their grief when death occurs. To see life celebrated as much at its end as it was celebrated at its beginning.

Hospice care is seen by some as “giving up”, as making a decision to end one’s life. We live in a culture that promotes and celebrates youth and denies aging and death. In reality, we will all die someday; we begin that process the minute we are born. Hospice offers those who are experiencing a life-limiting illness to choose how they want to die, to take control of the quality of their final days, and to make their last days as full of life and love as possible. Hospice care is “palliative” care. Palliative care is more holistic and focuses on reducing pain, providing comfort and meeting the physical, spiritual, and social needs of those who are terminally ill so that they can live the remainder of their life fully and comfortably. Hospice facilities also provide care for the family and the patient’s loved ones through the transition of illness, death and loss. This care is provided usually by a health care team. Members of this team include:

  • Nurses and physicians – work together to order and provide medications and physical care measures that will ease or prevent pain and physical symptoms associated with terminal illness. Nurses help develop a plan of care for the patient and family. Care is usually available 24 hours a day, 7 days a week.
  • Social Workers- assist with psychological needs, financial needs, advanced planning and assistance for family members and patients dealing with loss and bereavement in accordance with cultural beliefs and values.
  • Home health aids- provide assistance with personal care.
  • Clergy or religious leaders- provide spiritual support and connection to religious community, also assistance with funeral or memorial service plans.
  • Volunteers- provide physical assistance with activities of daily living along with emotional support and occasionally respite care.

Hospice care can take place in one’s home, in a free-standing hospice facility, or in an extended care setting. Hospice care is covered by most insurance, Medicare and Medicaid. Unfortunately, the great benefits that can be obtained from hospice care in one’s final days are underutilized as many of those terminally ill enter a hospice program with only days to live.

Related Links

National Cancer Institute Fact Sheet: Hospice

American Cancer Society: What is Hospice Care?

General Practical Assistance

Insurance

Many insurance companies now have managed care plans.  These can be PPOs or HMOs.

  • If your insurance is a PPO (Paid Provider Organization) you have a choice of doctors and facilities, but only a choice of those listed in the insurance company’s network for the highest payment of insurance benefits.  Usually there is a penalty for going outside of the preferred network of doctors or facilities for treatment.
  • If you belong to an HMO, you may only be covered if you see providers in the network; you may have no coverage at all if you receive treatment outside of the HMO network.

If you need to go outside a managed care network for treatment of a rare disease, it may be possible to get the penalties waived.  Call your insurance company to find out their policy in regards to these waivers.  If possible, get your local doctor(s) or health care provider(s) to write letters to the insurance company in regards to the rarity of your disease and your need to seek medical care outside of the PPO/HMO managed care network.

Travel

I believe it is in the best interest of those diagnosed with appendiceal cancer to be seen by doctors who specialize in treatment of appendiceal cancer and peritoneal surface malignancies; doctors who are surgical oncologists and who have experience with debulking surgery and peritoneal chemotherapy if that therapy is warranted.

I attribute my own survival, though, to the fact that I was seen by a doctor who had experience with appendiceal cancer and that I had the debulking surgery and peritoneal chemotherapy.  In many cases you will be required to travel to see a specialist, I traveled 1500 miles round trip.

Medical Bills

A word of advice.  Carefully review your medical bills and insurance statements.  If you have a friend who is a medical professional, ask them to help you.  I personally saved $10,000 by doing some of the things listed below.  I had to make a lot of phone calls and spent hours on hold and shuffling paperwork.  I also purchased a plain paper fax machine for about $100 (it paid for itself many times over vs. a public fax), but I feel I was well paid for my effort in light of the amount of money I saved. Things to look for and to keep track of:

  • Deductibles: Know your insurance deductible and when you have met it.  Make sure you are not overcharged.
  • Out-of-Pocket Expenses: Many insurance companies have a yearly limit for out-of-pocket expenses.  Once you have met that limit, 100% of your medical bills may be covered, even if prior to meeting that limit you had a co-pay percentage.  Check your policy and keep a running total of your out-of-pocket expenses.  Also check to see if your insurance measures this time by the calendar year; it’s possible you can adjust timing of treatments/surgeries/tests to get the greatest advantage from this benefit.
  • Double billing:
    • Check your bills and insurance statements to make sure you are not billed for something that was already paid for by your insurance.
    • Also check dates to make sure you are only charged once for each service/item.
    • Make sure you are not billed for an amount that should have been reduced as an in-network service. For example, your charge for a $200 office visit may be reduced to $150 because of an agreement the provider has with your insurance company.  Your 25% co-pay would be 25% of the $150 dollar agreed upon reduced charge and not 25% of the $200 dollar charge in that case.  It’s better to pay the co-pay after bills have been submitted to insurance and you have documentation of the final accepted charge.  If you have overpaid a bill, you can request a refund of the overpayment.
  • Life-time maximum:  Check to see if your insurance company has a lifetime maximum coverage amount after which they will no longer provide any benefit.  Although items are covered by insurance, it is still sometimes a good idea to price shop to avoid reaching the lifetime limit.
  • Denials: if coverage is denied for a service or provider, double check your policy and reasons for denial.  I had some payments denied because of an error in the reporting of a claim by the provider of services.  I had my provider resubmit corrected claims.
  • Document: Document phone calls to insurance companies and providers when disputing claims; write down names, dates and times on bills or insurance statements.  It will save you time, frustration and money when you can say “On May 1 Jane Doe told me that this charge was removed from my account”.