Medication Adherence

Patients' experiences

Positive attitude, strict medication management are keys to moving forward

After a routine colonoscopy, Karen Manzini was diagnosed with Stage IV colorectal cancer at the age of 59. Without symptoms and without warning, she went from feeling great to facing the fact that survival might not be an option. Not even a year since her diagnosis, Karen is currently cancer-free and continues taking the life-saving medications that gave her a fighting chance. Today she gratefully travels, spends time with family and friends, and wants to support and encourage other cancer patients who are facing the same odds of surviving this disease.

 

Within a week of being diagnosed in November, I had a laparoscopic procedure to remove the cancerous tumor along with six infected lymph nodes. The beginning of my cancer journey was mostly a blur, but after being hospitalized for three nights, I recovered quickly and within a month I was with my husband in his hometown in Italy trying to decide what to do next.

While he completely understood my fears and wanted to help, most Italians prefer not to even mention the word cancer. In fact, my mother-in-law called it “that ugly disease.”Regardless, we personally chose to tell everyone that I had cancer even though it made some uncomfortable.

Looking back, I had no problem talking about having cancer because I didn’t feel like it was my fault or that I should feel guilty for having this disease. No one else should either.

Thankfully, I found the Colon Cancer Alliance (CCA) early on, which allowed me to connect with patients and caregivers who had a wealth of knowledge to share. Between their website and Facebook page I learned about everything from treatment options and side effects to how to deal with psychological and financial problems.

While making treatment decisions we consulted with three oncologists in the U.S. and three in Italy, and also researched alternative treatments. I’m still not sure where we found the energy and concentration required to make these decisions so quickly, but by the holidays, we decided that oral chemotherapy (along with immune-boosting supplements) would begin just three months after my diagnosis.

I began taking 3,000 mg of oral capecitabine (Xeloda) every other week and would get a 600 mg infusion of bevacizumab (Avastin) every three weeks, taking around a half an hour. While it was very emotional starting chemo and I did experience some mild side effects, overall I have tolerated it pretty well physically and have been very lucky.

The Avastin did raise my blood pressure, so I’ve added another medication to my regimen to keep that under control. I recently began maintenance therapy but other than some fatigue, nothing really keeps me from leading a normal and active life. My current medication plan works perfectly for me because it allows me to be in remission while also maintaining a great quality of life.

While researching your cancer and your treatment options, I can’t stress enough how important it is to be your own advocate, because the health care system isn’t perfect. Find as many experienced individuals as you can because there are countless survivors who genuinely want to help others get through this experience equipped with as much knowledge as possible.

I advise patients that no matter what, try your best to keep a positive outlook which can help to improve your life physically and mentally. I didn’t ignore all of the scary statistics that surrounded my type and stage of cancer, but I certainly didn’t want to focus on them either.

Make sure that when you feel tired that you take the time to rest and that you accept help from those who offer. As a cancer patient, it’s easy to get ahead of yourself and constantly worry about everything, most times unnecessarily. I found that by surrounding myself with positive people and having a positive attitude, I was more at peace. Remind yourself that statistics are just numbers….and every single day that you wake up – you are waking up as a cancer survivor.

 


Life is about how you live “Plan B”
Positive mental attitude and inner strength help CLL survivor live in the moment

Bobbie Bloch, a chronic lymphocytic leukemia survivor, overcame an overwhelming family history of disease and fought her way through treatments, several new doctors and multiple remissions over the past 21 years.

 

My family has an extensive history of cancer. My mother had lymphoma and passed away at 58, and the disease claimed my father at age 75. I also have a cousin with lymphoma, and my maternal grandmother had a malignancy believed to be lymphoma. Plus, my sister was just recently diagnosed with CLL. So considering my family history, that first twinge I felt in one of my glands bothered me. I went to my doctor right away, who sent me for blood tests and suggested a visit to an oncologist.

In April 1993, I was diagnosed with chronic lymphocytic leukemia (CLL) at the young age of 51. I was stunned and sad. Luckily, CLL grows slowly and mine was caught early at Stage 0. We “watched and waited” for nine years. Then one day, all of the nodes in my neck seemed to explode at once and the doctor started treatment immediately. At the time there weren’t a lot of options for CLL. I remember him telling me, “If we can hold it off long enough, there’ll be something for you. There are new developments taking place every day.”

Treatment with fludarabine for six months seemed to work, but then my doctor of nearly 10 years moved away. Although the thought of searching for a new doctor was daunting, a friend convinced me that I should take care of it while time was still on my side. She was right. I met with someone I’d previously considered and was impressed with how knowledgeable he was as well as his caring nature and bedside manner. I felt secure once again, and it wasn’t a moment too soon.

Shortly after, an enlarged lymph node in my armpit turned out to be Hodgkin lymphoma, so my doctor started me on the ABVD (Adriamycin, bleomycin, vinblastine, dacarbazine) chemotherapy regimen. I went through six months of very difficult, uncomfortable treatment, experiencing hair loss, fatigue, nausea, pain and neuropathy. For four of those months, I suffered through what I called “Blue Mondays.” My treatments were on Thursdays, and the following Monday I would have horrific jaw pain. Thankfully, my doctor was able to help, and somehow I made it through. When you don’t have a choice, you just do what’s necessary.

After treatment ended, the main lasting effect was neuropathy, which I treat daily with vitamin B12. The lymphoma has never returned, but CLL is a chronic condition for me. I’ve had three recurrences, all treated the same: My white blood cell count goes up, my nodes enlarge, my doctor starts me on rituximab (Rituxan). My count goes down, my nodes return to normal, and we start all over. Watch and wait.

I recently began a promising new treatment – ibrutinib (Imbruvica) – and so far the results have been great. I’ve experienced some minor side effects but nothing I can’t handle, especially because everything in my body has seemed to resolve itself. This is a treatment I’ll likely remain on for the rest of my life, as it should continue to help stabilize my disease. My doctor’s words still ring in my ears: “If we can hold it off long enough, there’ll be something for you...”

Through my cancer journey, I’ve learned to appreciate and be grateful for all that I have. I found a support group that was my lifeline for several years, and I’ve met some amazing women. It’s so important to find support when you’re going through something like this, and now I surround myself only with the people I love and care about—and who care about me. I spend my time doing things that make me happy, and I always try to keep a positive mental attitude.

I’m currently doing well. I’ve been through four doctors, several treatments, and the ups and downs of managing a chronic disease. My diagnosis was a reality check; I was forced to come to terms with my own mortality and values. After it all, however, I’ve realized just how strong I am. This may not have been my life plan, but I discovered that life isn’t about “Plan A,” it’s about how you live “Plan B.” Your health is precious, so take good care of it and enjoy yourself! Live in the moment.

 


Colon cancer survivor points to proper adherence as key to survival

Pam Seijo is a 53-year-old Stage III colorectal cancer survivor who faithfully adheres to her long-term treatment schedule, but she doesn’t let it slow down her life. She spent 17 years as an elementary school teacher and now spends her time walking, crafting and advocating for cancer research and screenings—something that provides her with immense satisfaction. Pam and her husband of 30 years have two grown children.

 

About 14 years ago my colon ruptured, which led to the discovery of an aggressive Stage III rectal cancer. I had been ill and experiencing pain for several months, so I was actually relieved to hear the diagnosis; it confirmed the feeling in my heart that I had cancer.

I have a fighting spirit, so I was eager to start treatment. I first had surgery to repair my ruptured colon and was then given a temporary colostomy. Following a 16-day hospital stay and some additional at-home recovery, I was ready to begin six weeks of treatment with medication and radiation therapy: I received fluorouracil (5FU) continuously, leucovorin (Fusilev) daily and 34 radiation treatments.

Unfortunately, after all that my tumor didn’t shrink. In fact, it grew and spread to my uterus, ovaries and coccyx. After several surgeons told me my cancer was inoperable, I finally found one who agreed to operate. In addition to removing the tumor, the surgery also included a complete hysterectomy, a proctectomy with colo-anal anastomosis, bladder repositioning and a permanent colostomy.

After I healed, I began taking irinotecan (Camptosar), but after 18 months, my body was struggling with the side effects. I experienced nausea, diarrhea, hand-foot syndrome and fatigue, and I had to rely heavily on help from my husband, parents, other family members and friends to get by. My oncologist stopped administering the drug and gave me a few months off for my body to recover.

During that time, a scan revealed microscopic nodes in my lungs, too small to biopsy. As a team, my doctors and I decided to pursue a low-dose, long-term treatment with capecitabine (Xeloda). For about the first month on a two-weeks-on, one-week-off cycle, I took 1,500 mg in the morning and another 1,500 mg in the evening. My daily dosage slowly decreased over the years, and I’m now taking 2,250 mg per day, on a one-week-on, one-week-off cycle. I do, however, take breaks from the medication for one week every four months and continuously from Thanksgiving to New Year’s Day.

Physically, I do well with my long-term treatments, but that’s not to say I’m totally free from side effects. I still experience fatigue and difficulty with my short-term memory, and I have neuropathy in my hands and feet. But I’ve learned to make slight modifications to my lifestyle to compensate for these issues: I get weekly massages for the neuropathy, implement techniques I used as a teacher to help with my memory loss and tolerate the fatigue by pushing myself, which makes me feel better.

In addition to my ongoing chemotherapy regimen, I also maintain a fairly steady checkup and testing schedule. I get a colonoscopy once every two years, a CT scan and a PET scan every other year, and a blood test every three months, which includes a CEA test. I also visit my doctor every three months.

Because I’ve always been a structured and organized person, I’ve never found it difficult to adhere to my long-term treatment schedule. But even if I weren’t innately organized, I would’ve figured it out because I know that sticking to my treatment schedule is what I need to do to survive. I keep two calendars with everything on them and mark off events and actions after they pass. I also have my medication schedule recorded in my phone with alarms set to remind me when to take my pills.

So far, my cancer isn’t showing any signs of active growth, and despite the ongoing chemotherapy and some discomfort, I’m determined to live my life fully. On chemo weeks, I don’t plan as much; but on off weeks, I do everything I want to do. I’ve developed a strong passion for advocating for and supporting Fight Colorectal Cancer through attending conferences, meetings and events. I also talk with colorectal cancer patients at local oncology centers and others across the country.

I always knew I was a strong, independent person who loved life, but I never knew to what depth. I’m thankful every day for my life and for what I can do for others going through this journey.

 

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