Compiled by staff editors

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"I don't think I could breathe without him," said one patient on CURE's Facebook page. See how four-legged friends helped others through their cancer experience.

Photos of Furry Friends Who Helped Their Humans Through Cancer

CONCERNED FOR THE FUTURE OF U.S. MEDICAL CARE 

I am the widow of a man who had non-Hodgkin lymphoma that turned into progressive multifocal leukoencephalopathy following experimental treatment with Rituxan (rituximab ) and Revlimid (lenalidomide). He was disabled, had a very low income and was insured by Medicare parts A, B and D. The subsidies he received for help with costs of insurance and treatments were what made it possible to treat his cancer and give us seven years together after his initial stage 4 diagnosis.

I am so concerned for the future of medical care for people without access to medical insurance or money to cover the costs of treatments.

The idea that our government is headed by people who don’t seem to care about those in need is abhorrent and terrifying. Thank you for mentioning the debates taking place in our nation’s capital and across the land. We need to advocate for all people’s access to insurance, so they’ll have health care and the potential of long lives.

There’s been much reported lately about cooling caps to save one’s hair when undergoing chemotherapy, but something also needs to be mentioned about a simple, inexpensive, no-side-effect alternative called Biotin. In 2013, I lost half my hair on FOLFOX chemotherapy for advanced colon cancer. In 2014, I lost nearly all of it to (the chemotherapy regimen) FOLFIRI. When I started losing clumps of hair last fall on the targeted drug Stivarga (regorafenib), I did frantic research and asked my oncologist about taking Biotin. She said it was fine. Memorial Sloan Kettering Cancer Center’s website recommends 2,500 micrograms a day.

Within days, my hair stopped falling out altogether. That was Nov. 13, and though I am still taking Stivarga, I haven’t lost any more hair in almost four months! This may not work for everyone, but surely it will work for some, as it did for me?

Note from Editor-in-Chief Debu Tripathy, M.D.: Biotin (vitamin B7) can help in conditions that don’t cause full hair loss (older age, menopause, nutritional deficiencies, pregnancy), and also with nail strength, as it supports the activity of the protein keratin. Treatments such as FOLFOX and Stivarga do not cause as much hair loss as some others, such as the chemotherapy Adriamycin (doxorubicin). Therefore, Biotin may be useful for people taking agents such as FOLFIRI, but less so for those taking chemotherapies linked with larger-scale hair loss.

Your recent article on multiple myeloma was great (“Have a Cocktail: Using Multiple Drugs to Treat Myeloma,” Fall 2016). I have read too much on the disease, as I am a patient, and this was one of the best. Thank you.

I also shared the magazine with a student nurse who is working on an oncology unit. Great job.

Thank you for your dedication to patient education and support! I enjoy reading CURE® and have recommended it to my patients for many years. I was particularly delighted to see your article on palliative care. I appreciate your efforts to help educate patients and families on the benefits of palliative care and its distinction from hospice care.

Sarah Thirlwell, M.Sc., M.Sc.(A), RN, CHPN, AOCNS

Letters From Our Readers: Spring 2017 Issue

Reading Jessie (Jan) Fuger’s letter in CURE®’s Summer 2016 issue titled “

Surprised by Disappearing Support Network

My situation is a variation on her experience. I was married for 17 years, happily divorced for a few decades, enjoying being single and then, last year, diagnosed with breast cancer. With the divorce, both my own and my ex-husband’s families disappeared from the scene — no support.

With the diagnosis of cancer, my support came from a small core of long-time friends. My appreciation for their friendship knows no bounds. I can never repay them for their kindness and care. The rest — who dropped me like a hot potato &mdash; have been removed from my address book, along with the folks who physically stepped backwards away from me when I told them of the diagnosis. When I returned to my exercise class after completing treatment, a few folks actually seemed disappointed that I had not died!

There is much ignorance in the general population about cancer and cancer survivorship. Despite that, I’m surviving well so far.

Thank you to the single woman who wrote “Surprised by Disappearing Support Network.” I completely understand where she is coming from.

Mom was Dad’s caregiver while he suffered and died from cancer. Mom now suffers from Parkinson’s disease, which she has had for over 10 years, and I am her caregiver. My only sibling lives in another state, and Mom’s only sibling lives a few miles from us. Neither offers to help, and one does not contact us at all. What I would give to have some help from someone…anyone.

Just as the prior letter states, everyone says, “If there is anything they can do to help, just ask.” However, that lasts for only a short time. Before I completely stopped working, Mom would tell me that no one ever called to offer help and/or came by to visit. Why is that? I am now experiencing the same thing. At first, people would communicate with me, offering to take Mom to doctors’ appointments. Now, the only time we ever hear from anyone is when we contact them first. And forget their offering to help. Short of begging, I have not figured out how to ask anyone.

Once Mom is gone, I will be that single woman needing a support network. As I now struggle with various injuries as a result of caregiving, who will be there to help me?

Overall, I found your article about caregiving in the Summer 2016 issue, “Rising to the Challenge,” on point; however, there is one area of caregiving you did not mention.

When my husband had cancer in 2004, I was overwhelmed with the caregiving, travel and appointments, but one of the most stressful issues for me was dealing with the insurance, hospital and doctors’ offices about the mounting bills.

Within a couple weeks of diagnosis, the bills started coming in — in fact, hundreds of bills throughout the first year. Not only did I have to worry about where the money was going to come from, I had to find the time to manage the ever-increasing pile of bills and navigate the health care system. Each bill had to be matched up with a service or appointment, compared to the EOB (explanation of benefits) and paid. I spent hours on the phone haggling and arguing with the insurance company and providers.

It was incredibly stressful. I ending up putting together a spreadsheet to keep myself organized. By the end of the first year it was 23 pages long, single spaced.

On top of everything else I had to deal with, this was an insult I just couldn’t bear some days.

I used to have three brown moles on my neck. I always thought they looked like spots of dirt, so whenever I went out at night, I would put three little dots of makeup on them to make them invisible. One day, I noticed I needed just a little more makeup on one of them.

I asked my son and daughter-in-law, who were straight out of medical school, what they thought. They said the spots were the same color, round and had no abnormal features, but they weren’t dermatologists, so they recommended that I see one.

I waited six months, during which I attended a medical conference for patients on different topics, and there I heard a seminar given by a dermatologist. She showed pictures of melanoma and, for the first time, I saw a perfectly round, even-toned, non-itchy, nonbleeding mole that was determined to be a melanoma via biopsy. I made an appointment with a dermatologist at a teaching hospital in Tampa, Florida, who said the mole looked normal to him, but that he would do a biopsy just to be sure.

We went on a short cruise to the Bahamas. On our return, as soon as I turned my phone back on, a resident called me from the hospital to inform me that the biopsy had come back positive for melanoma, and I was set up to have surgery the next day. The dermatologist said I had a boater’s skin cancer by location, which made sense for someone like me, who used to spend a lot of time scuba diving. The sun’s rays are magnified by the water and reflect back onto the neck.

This finding was made six years ago. Since then, I’ve had basal and squamous cancer and get screened every six months or sooner if I worry about something. I also use a good sun blocker.

The lesson I learned was that enlargement can be a symptom of melanoma. When in doubt, see a dermatologist. Better an unnecessary biopsy than a missed necessary one.

To my fellow pink warriors, I was reminded in October of something we don’t often touch on enough during Breast Cancer Awareness Month: grief! It is a natural feeling that is best dealt with when felt. October can remind us of loss to body, life roles, people we love and people we were, and isolated moments of anxiety can lead to anticipated grief over events we haven’t experienced or may not experience. It is okay to cry. In fact, we can’t begin to heal emotionally until we cry.

As a society, we have possibly become programmed to think that, if we hurt, we need to pop a pill. Not often the case or helpful in the long run. In general, and especially in recovery, you need to learn to feel again. A pill, drink or drug aren’t the cure. Cry if you need to. Grieve, and then eventually come back to the moment by being present. Live! Learn how to breathe, meditate and move to stay active.

Grief is only a concern if it turns into a clinical depression which impacts energy levels, motivation to live, appetite, sleep and general interest in daily living. If that is the case, seek counseling for an evaluation, but otherwise, I encourage us as the survivors we are to nurture our minds and bodies. Create a happy playlist, give yourself a warm and healing hug (a real hug with no holding back) and be selfish by doing something special with your very own “me” time.

Comments From Our Readers- Fall 2016

Eight years after my wife passed from a rare feminine cancer, and five-plus years after my own brush with this killer, the thing that bothers me most is the utter lack of meaningful communication my wife and I had during her illness. I hold this to be my weakness, and I am haunted by it. She was a private person about such things and I, a military veteran with 24 years’ service, felt I could and would talk about anything. In fact, I couldn’t. 

I did as much as I could to help her, but the thing that would have helped me the most was an honest conversation about her illness, and how my life might be without her. I wanted this, but somehow neither one of us could find the words to do so. She had disfiguring surgery and I couldn’t bear to look when she offered to show me. I considered this a hurtful thing to her and not an attempt to save her. 

We could talk about almost everything else — nearly 44 years of marriage allows it &mdash; family needs, grandchildren, children, but for some reason I couldn’t get the words out, and I don’t think she recognized how much I needed to be led by her. I felt a weakness that shouldn’t have been allowed by masculinity. 

I’ve moved on. Loneliness is a toxic thing, and I remarried. But even so, each day, I think of those days when we were alone in our house along with her illness, and how I couldn’t talk about how sad I felt that our lives had reached that point. In addition to losing her, my biggest regret is that we couldn’t have that conversation that might have left me feeling that I did everything I could have possibly done in those terrible weeks. We both avoided talking about the inevitable. We both knew what was coming. We couldn’t face it. 

COLD CAPS PRESERVED HAIR — AND PRIVACY 

I used Penguin Cold Caps back in 2009 during my breast cancer treatment. My chemotherapy regimen was Taxotere (docetaxel) and carboplatin with Herceptin (trastuzumab). Due to the frozen caps, I was able to keep most of my hair, just losing a small amount by my ears where the cap was not tight enough. 

I had four children and was able to do so much with them during treatment without others knowing my diagnosis. I wanted it that way. Keeping my hair made things more “normal” for me in the roller coaster of cancer treatments. 

I will forever be indebted to the inventor, Frank Fronda, and Penguin Cold Caps for helping me through this experience. I now speak with people who are about to go through chemotherapy to let them know about cold caps. Your Spring 2016 article, “

,” really hit home for me. I hope that everyone will eventually have the choice to use cold caps during treatment. They were very expensive for me, but I would not change a thing. 

” in the Winter 2016 issue of CURE was quite interesting. I could even relate to the various scenarios, except that I am a male! Sadly, the article is very one-sided, reflecting only one gender. Yes, there are men who “go it alone.” 

We have many of the same problems, maybe even more drastic than those experienced by women. Men tend to be less accomplished in the kitchen and in the laundry room than women, we tend to have less of a grasp of cooking, while healthy or not, and our relations with our children, friends and neighbors tend to be less open and emotional than those of women. 

I went through prostate cancer diagnosis and treatment, starting back in 1997, and I don’t recall my two sons sharing any part of my trip. I was alone when I was diagnosed (the tape recorder was a savior), I was alone when I boarded my dog and headed to the hospital (an hour away) for seed implants and when I drove myself home the next day. No, I did not hide it from my young adult sons, but they just were not there. I’m not sure they have ever asked how I am in the ensuing 18 years. Guys must be different; when I’ve asked them why they don’t ask, their answer usually has been along the line of “You seem to be coping with life on your own.” That’s pretty true, but is it because I can or because I must? 

If CURE wants to be a women’s magazine, just let us guys know and we’ll move elsewhere. No hard feelings. But if you’re going to present yourselves as a cancer magazine for everyone, you’re going to have to work harder. Remember, more American men than women get cancer, and men are less likely to survive. 

- Herb Skovronek, Morris Plains, New Jersey

The topics addressed in “Single and Sick” are universal in that they can affect anyone who is single and undergoing treatment for cancer, regardless of gender. However, we understand why our readers might find it meaningful to learn about the experiences of both men and women traveling this path. We’ll consider that idea in planning future stories, and in fact recently gave attention to the male experience in our Winter 2016 story “Role Reversal,” about men caring for their wives or girlfriends who’d been diagnosed with cancer. 

SURPRISED BY DISAPPEARING SUPPORT NETWORK 

As a single woman who was diagnosed with breast cancer last year, I found my support system before that to be wonderful; after diagnosis it was virtually non-existent! 

When my friends found out about my cancer, everyone said, “If there’s anything I can do, don’t hesitate to ask.” However, when I asked, the answer was always “no,” no matter how simple the task. One friend in particular, who was supposed to take me to the hospital, called the day before to back out because her husband refused to allow her to do it. His reason? I’m single. As a single woman, I have been discriminated against all my life, but never by a friend’s husband! I crossed that person off my support list, as well as others. 

Interestingly, someone I barely knew called the day after surgery and said, “Oh my God, what can I do?” She meant it. Sometimes the ones who support you will surprise you. 

Compiled by staff editors

Photos of Furry Friends Who Helped Their Humans Through Cancer

Letters From Our Readers: Spring 2017 Issue

Comments From Our Readers- Fall 2016

Comments From Readers on CURE's Summer 2016 Issue

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