Wednesday, December 13, 2017
How Social Media Can Help People With Cancer
I certainly am not like some people who try to present the perfect façade of their lives, but I do not want to be a downer, either.
PUBLISHED DECEMBER 12, 2017
Jane has earned three advanced degrees and had several fulfilling careers as a librarian, rehabilitation counselor and college teacher. Presently she does freelance writing. Her articles include the subjects of hearing loss and deafness, service dogs and struggling with cancer. She has been a cancer survivor since 2010.Being on social media sometimes makes me feel like an old fogey. I have no idea how to use most of it, because Snapchat and Twitter are mysteries to me. A good friend once remarked that a smart phone can make one feel so dumb. He is right.
She has myelodysplastic syndrome, which is rare, and would love to communicate with others who have MDS.
She has myelodysplastic syndrome, which is rare, and would love to communicate with others who have MDS.
I am concerned about the dangers, parental controls and perverts on social media who prey on children and teenagers. I am not naïve and know some of the aspects of these features can be bad.
What we cancer survivors need to realize, however, is how we can use it to our advantage. I am usually a glass-half-full person.
Before my diagnosis of myelodysplastic syndrome, I was on Facebook a little. I mostly used the Internet for research, and as a former librarian, this is easy for me.
I made a conscious choice to primarily use Facebook. I have limited time and energy to learn about Twitter and some of the other parts of social media. Each person needs to decide what he or she wants to learn and do. However, I do use Facebook and messaging. I try to remember how I coped without texting, and it was not well!
Facebook for me has become more than a fun social media platform to catch up with friends. Instead, it is a wonderful support system.
In an earlier article, I wrote on how it is OK to be vulnerable. I hesitated for a long time to put anything that showed weakness or sadness on Facebook. I certainly am not like some people who try to present the perfect façade of their lives, but I do not want to be a downer, either. I would stick to pictures of my vacation spots and my hearing ear dog. She is very cute (yes, I am prejudiced) and often gets over 100 hits. I told my veterinarian I am lucky to get 30, but the dog is cuter than I am!
This time, however, I was despondent. I was suffering from a stubborn upper respiratory infection I couldn’t get rid of. I was hurting and sick from the chemo. My medical bills were mounting rapidly. I was depressed with the gloomy winter weather in Ohio.
I simply got on Facebook and asked for thoughts and prayers. I was overwhelmed with over 100 hits and dozens of supportive comments including some thank yous for being real. I realized then that while people do not want gloom and doom all the time, they want the chance to be human.
I started putting all my articles from CURE on Facebook and the response has been gratifying. I discovered that not only were people diagnosed with cancer responding, but some with other problems found the articles helpful and inspiring. I have a faithful following of readers to constantly encourage me.
The responses have gone even further. CURE readers outside of my personal network began to friend me and I message and chat with them online. Some of them are thousands of miles away. As a result of my postings, some of the articles have been reposted in oncology nurses’ websites, essential oils websites and a hearing aid company. This is the gift that keeps on giving.
Through CURE, I also have found out about other support groups like the Aplastic Anemia and Myelodysplastic Syndrome International Foundation (AAMDSIF). I am presently sharing information and articles with them.
Some people have sent me hand written letters and thanked me for my encouragement. This all never would have happened without social media.
I spend much more time on Facebook now, and no longer consider it a waste of time. I keep in touch with other cancer survivors, my former students I taught in college and people I worked with. I share in their joys and sorrows. I got a ton of support this summer after my hearing ear dog had a nasty elbow surgery for arthritis. And yes – people support me through the tough chemo days.
Therefore, for my comrades who are battling any disease like cancer, social media can be a lifeline, especially on those days when you feel too exhausted to go out, or am afraid of getting an infection because your immune system is so repressed.
So, if you feel alone, remember that social media can be a dark web or your best friend. You can make it one of your biggest supports. I never dreamed I would be so happy that I did!
Talk about this article with other patients, caregivers, and advocates in the General Psychosocial Aspect Topics CURE discussion group.
Thursday, November 9, 2017
Usually, chemotherapy is associated with cancer drugs given intravenously in a hospital or doctor’s office. This has been the traditional nonsurgical method of treating cancer.
Some versions of oral chemotherapy have been around for more than 60 years. But it’s due to recent advances in cancer treatments that oral chemotherapy pills have become more widely used.
In 2007, researchers estimated that 25 percent of all anticancer drugs under development were oral drugs, which come in the form of a liquid or a pill. But it’s important to know the difference between the various forms of oral medication prescribed to fight breast cancer, points out Dr. Hannah Luu, California-based oncologist and CEO and founder of OncoGambit, an online service that creates personalized cancer treatment plans. She outlines three categories of oral medications cancer patients may take as part of their treatment plan:
- chemotherapy pills
- antihormonal pills
- targeted therapy (precision medicine) pills
Each therapy works differently and serves a different purpose. Not every medication will be right for everyone. Which therapy is right for you will depend on various factors including the type of cancer you’re fighting, the severity of your case, and other health considerations.
What are breast cancer chemotherapy pills?
Not all traditional chemotherapy drugs come in an oral form. These chemotherapy medications, are commonly prescribed to fight breast cancer and are available as pills:
- cyclophosphamide (Cytoxan)
- capecitabine (Xeloda)
- temozolamide (Temodar)
- topotecan (Hycamtin)
- methotrexate (Trexall)
- vinorelbine (Navelbine)
- idarubicin (Zavedos)
Sometimes oral chemotherapy is prescribed in combination with other medication, often intravenous (IV) drugs. Additionally, chemotherapy pills work like IV chemotherapy to kill all fast-growing cells. As such, you’ll experience similar side effects as well as similar results.
“The efficacy of chemotherapy pills ... are similar to the traditional intravenous therapy, with research showing that the overall survival with oral chemotherapy is the same as patients would have with traditional intravenous chemotherapy,” says Dr. Luu.
How do you take chemotherapy pills?
Unlike traditional chemotherapy treatment given at a clinic or hospital, chemotherapy pills are taken at home. Your doctors will provide you with clear instructions on how to take your medication and when. They’ll also tell you whether you should take the pills with food and how long or before after eating. It’s very important to follow these instructions exactly. In some cases, you may even need to wear gloves when handling your chemotherapy pills.
You should also ask your doctor whether it’s safe to use a pill organizer. Chemotherapy pills should be considered hazardous, according to Mayo Clinic. So you need to keep them in the container they came in and can’t store them with other medications or supplements. You should also avoid crushing, breaking, or chewing oral chemotherapy pills.
The American Cancer Society provides a few other key safety tips for taking this type of medication:
Tell your healthcare team if you miss a dose or are late taking it. Your doctor will advise when to take your next dose and if any changes need to be made.
Adds Dr. Luu: “Chemotherapy pills have the potential to cause the same serious toxicities as intravenous chemotherapy. If used incorrectly, they can potentially have fatal outcomes. It’s important for patients to be aware of their treatment plan and take their chemotherapy drugs accordingly. It’s even more important that the patient doesn’t take the missed pills with the next dose.”
Don’t make any changes to your doses unless your doctor explicitly tells you to. Even if you begin to feel better, your body needs the chemo to continue to fight the growth of cancer cells. Your doctor will request blood tests and other scans to monitor changes in the cancer and make any necessary adjustments to your treatment plan.
Make sure chemo pills are always out of reach of children and animals. Ask your healthcare team how to get rid of extra doses, as it isn’t safe to keep these pills around if you aren’t taking them. You may be asked to take the unused medication back to a pharmacy or to another facility where it can be destroyed and thrown away safely.
If for some reason you can’t take your medication or you feel sick after taking a dose, call your healthcare team for further advice.
What are the side effects?
Side effects for breast cancer oral chemotherapy drugs are similar to those for traditional chemotherapy. They include:
- hair loss
- low blood counts
- mouth sores
- tingling or numbness in your hands and feet
- menstrual changes
What side effects you’ll experience will depend on the pills you’re taking, so it’s very important to talk to your doctor about what to expect beforehand. And because you won’t be seeing your healthcare team as frequently, it’s especially necessary to tell them about what side effects you’re experiencing. That way they can make any necessary adjustments to your doses and help you find relief from the side effects.
What are the pros and cons of oral chemotherapy?
One of the primary benefits of breast cancer chemotherapy pills is their convenience. You can take them at home. You don’t have to allot extra time for traveling to and from the clinic and receiving treatment. Also, because oral chemotherapy is significantly less invasive than traditional chemotherapy, which involves IVs that are painful for some, it’s a more comfortable option.
Oral chemotherapy also allows doctors to create more tailored and flexible dosing plans compared to traditional chemo treatment.
Although convenience and flexibility are major perks of this type of cancer treatment, it may not be the right option for you. Taking the medication on a strict schedule and in the correct doses is a lot of responsibility that you may not be comfortable with. A missed or incorrect dose can have serious implications, so you should talk to your cancer team about this and weigh the pros and cons of breast cancer chemotherapy pills.
As we are moving toward oral chemotherapies, it’s important to thoroughly and consistently educate the patients on the importance of taking the treatment as directed, reporting any side effects, and most importantly why they are taking the treatment. We found that some patients may not be informed about their cancer type or why they are receiving a specific treatment.
– Dr. Laura Bourdeanu, nurse practitioner and vice president of OncoGambit
The other major consideration is the out-of-pocket cost difference between oral chemotherapy and IV drugs. Because some insurance providers consider oral chemotherapy drugs as a pharmacy benefit, they don’t reimburse for the cost as they do for traditional chemotherapy. This can put the financial burden on you for medications you need to fight cancer.
Thursday, October 26, 2017
Good News, Bad News on Breast Cancer Survival Rate
Written by Ann Pietrangelo on October 16, 2017
More women are surviving breast cancer, but more than 40,000 will still die from the disease this year. Living with it hasn’t gotten much easier, either.
Early detection and better treatments helped prevent 322,000 breast cancer deaths between 1989 and 2015.
A new American Cancer Society (ACS) report shows that the breast cancer death rate decreased by 39 percent during those years.
It’s encouraging news.
But breast cancer remains a significant health problem.
It’s second only to lung cancer as the leading cause of cancer deaths among women in the United States.
The disease affects women and men of all ages.
About 81 percent of diagnoses occur in women aged 50 and up. About 89 percent of breast cancer deaths also occur in this age group.
The ACS estimates there’ll be more than 252,000 new cases of invasive breast cancer in women this year.
And more than 40,000 will die of the disease.
Dr. John A. P. Rimmer, a breast cancer surgeon in Florida, told Healthline that a number of factors working together for the past 30 years contributed to the improved survival rate.
Among them are better diagnostic tools and surgical techniques, as well as newer chemotherapy regimens and targeted therapies.
The ACS report notes that not all women have benefited from these improvements.
The overall incidence rate was 2 percent lower in non-Hispanic black women, compared to non-Hispanic white women.
But from 2011 through 2015, the death rate was 42 percent higher in black women. This is a small improvement from 2011, when it was 44 percent higher.
The lowest incidence and death rates are among Asian and Pacific Islander women.
The report indicates that biologic, social, and structural factors all contribute to these disparities.
These include stage at diagnosis, other health issues, and access and adherence to treatment.
Also, black women have a higher rate of triple-negative breast cancer, a particularly aggressive form of the disease.
Disparities vary from state to state. Access to healthcare is still a problem.
“Breast cancer is very complex socially and emotionally,” said Rimmer.
In his practice, Rimmer has seen women who skipped screening or didn’t initially seek medical care due to lack of health insurance.
Delayed diagnosis and treatment affects chances of survival.
Others refuse all or part of treatment due to cultural differences or misconceptions. And there are some who choose nonconventional treatments that simply don’t work.
Rimmer said that people aren’t always forthcoming about the reasons why they don’t show up for treatment.
What it’s like to live with breast cancer
At the start of 2016, there were more than 3.5 million breast cancer survivors in the United States.
“If we treat you and you’re alive, it’s a good thing. But there’s nothing good about breast cancer,” said Rimmer.
He added that survivors often experience long-term consequences of chemotherapy, surgery, and radiation treatments.
Laura Holmes Haddad, author of “This Is Cancer,” is one of those survivors.
The California mother of two received a diagnosis of stage 4 inflammatory breast cancer in 2012.
She was 37 years old.
To say her life changed would be an understatement.
“When I look back, I think about how naïve I was. The things I thought would be the hardest, like being bald, were actually the easiest for me. But the things I thought I would breeze through, like having both breasts removed and having breast reconstruction, were the hardest,” Haddad told Healthline.
“Physically, I faced pain and discomfort and physical changes I couldn’t have imagined,” she continued.
Haddad lists nerve pain, nausea, sensory issues, and being bedridden among the physical side effects of treatment.
Then there’s the mental and emotional toll.
“I felt angry and bitter at first, and sad. And then I felt guilty and helpless. And I tried to feel hopeful and I tried to laugh when I could, because everything just gets so absurd that you just have to laugh to relieve the darkness. I felt lonely and isolated, and that was tough. And then I felt grief and then I finally hit acceptance. And that felt good,” explained Haddad.
For her family, it was a month after month marathon of logistical and emotional challenges.
Her husband helped as much as he could. But he also had to continue working to keep up with health insurance and mounting cancer-related expenses.
To get through it all, they relied on help from their extended family, friends, and community.
A new normal
“I still have nerve pain in my chest and discomfort, so it is hard to ever completely forget what you have been through,” said Haddad.
She still sees her oncologist every three months. She’ll need to take estrogen blockers for the rest of her life.
“Because I am BRCA2-positive, I have a higher risk of developing melanoma, especially after the extensive radiation treatment I had,” she added.
That means seeing a dermatologist every three months and avoiding the sun as much as possible.
“I also have to keep my weight at a healthy level to lessen the risk of recurrence. Finally, I have to watch for lymphedema in my left arm because I had 14 lymph nodes removed. I also received radiation on my left side, leaving a high risk for developing lymphedema. I see a physical therapist and do daily arm exercises for that,” she continued.
Haddad’s pet peeve is that people often think of breast reconstruction after mastectomy as a “boob job.”
“I can’t tell you how many times people told me that at least I’d have a new pair of boobs at the end of it. I tried to smile and joke about it, but in the end, my bilateral mastectomy was one of the hardest aspects of having breast cancer. I will never, ever forget the day the bandages around my chest were unwound in the surgeon’s office, a few days after the surgery,” she said.
“But after all those challenges, I can tell you one thing. I do not take one second for granted. I really do try and pay attention to every moment, every interaction, every bird I see, every conversation I have. There is no time to waste on nonsense. And I wouldn’t trade that,” Haddad said.
Research is key
“Cancer cells are nasty and sophisticated,” said Rimmer. “The amount of knowledge we have is huge, but the cellular mechanism is hugely complex.”
He emphasized that breast cancer isn’t a single disease. Some types are more aggressive than others.
He believes research is one way to keep the death rate on the decline, especially when it comes to targeted therapies for the most aggressive types of breast cancer. He also said it’s important to identify high-risk women, such as those with BRCA gene mutations.
“At the other end of the spectrum, just simple things like getting a mammogram or going to the doctor when you have a lump are beneficial. Prevention is better than a cure,” Rimmer said.
Clinical trials are crucial to developing new treatments.
Haddad took part in a clinical trial for the drug veliparib. She credits it with shrinking her tumor enough for surgery.
There are challenges to participating in trials, even if your health insurance covers all or part of the treatment.
For Haddad, that meant weekly plane fares, hotel nights, and other travel-related expenses.
“No one really tells you about the logistics of navigating all that while on chemotherapy,” she said.
But she believes that funding research and encouraging people with cancer to participate in clinical trials is important.
Many people don’t realize that breast cancer can still be deadly, according to Haddad.
“I also don’t think they realize — I certainly didn’t — how important medical research is in developing treatment options and hopefully one day a cure for breast cancer,” she said.