MesotheliomaGuide https://www.mesotheliomaguide.com Let us be your guide Fri, 15 Dec 2017 14:06:05 +0000 en-US hourly 1 https://www.mesotheliomaguide.com/wp-content/uploads/2017/04/cropped-amp_logov2-32x32.png MesotheliomaGuide https://www.mesotheliomaguide.com 32 32 Surfing Santas and Grind for Life: Supporting Mesothelioma and Other Cancers https://www.mesotheliomaguide.com/community/surfing-santas-and-grind-for-life-supporting-mesothelioma-and-other-cancers/ https://www.mesotheliomaguide.com/community/surfing-santas-and-grind-for-life-supporting-mesothelioma-and-other-cancers/#respond Thu, 14 Dec 2017 14:58:21 +0000 https://www.mesotheliomaguide.com/?p=12995 What does surfing and Santa have in common? Supporting and giving back to the cancer community. On December 24th the annual Surfing Santas event will happen in Cocoa Beach, Florida. It lasts from 8 AM to 12 PM and admission is free. During this Cocoa Beach holiday tradition, hundreds of surfers dressed like Santa will […]

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What does surfing and Santa have in common? Supporting and giving back to the cancer community.

On December 24th the annual Surfing Santas event will happen in Cocoa Beach, Florida. It lasts from 8 AM to 12 PM and admission is free.

During this Cocoa Beach holiday tradition, hundreds of surfers dressed like Santa will ride the ocean waves. Whether you are a surfer or not, this family-friendly event encourages all attendees to dress up and be festive.

Santas Surfing for a Cause

Image of a Santa sitting on a surfboard on the beach looking out at the ocean. Image reads: Surfing SantasProceeds raised by Surfing Santas Cocoa Beach are donated to the Florida Surf Museum and to Grind for Life. The event helps preserve the history of the surfing culture and it gives back to individuals that are affected by cancer.

“Surfing Santas Cocoa Beach takes great pride in helping those in need,” states the Surfing Santas website.

During the event, attendees can purchase Santa Swag. By purchasing t-shirts and other merchandise, you are donating to both of the nonprofits that are dear to the Surfing Santas.

“We’ve been able to raise over $60,000 for local charities.” – Cocoa Surfing Santas.

The Story Behind Grind for Life

Logo for Grind for Life witch skateboard. Grind for Life, Inc was created in 2003. This organization was brought to life by pro skateboarder Mike Rogers. He is a two-time rare cancer survivor.

“Cancer doesn’t always win,” said Mike.
Learn more about Mike’s story here.

Throughout Mike’s medical journey he experienced aggressive treatment. In the case of a mesothelioma patient, aggressive multimodal treatment can improve their life expectancy.

Mike was also misdiagnosed. Some cancers can give patients symptoms that may mimic other illnesses. For example, pleural mesothelioma may be misdiagnosed as the flu.

Mike had to travel for treatment. He was a patient at the Memorial Sloan Kettering Cancer Center in New York. Keep in mind that Mike lives in Florida.

Not only was Mike fighting for his life, but he was burdened with medical expenses.

“At the time I lost my job, I had to use up all of my retirement fund to get through my illness. So, financially devastated, but I’m alive,” Mike said.

Mike understands the difficulty and the challenges that cancer patients face. He has been in their shoes.

Supporting Grind for Life

Mike had a lot of support from the skateboarding community. After word about his situation got out, many people came together and hosted a benefit for him called Grind for Life.

“It was a moving day and after that, I had seen there is a need for people who are traveling long distances for cancer care and it didn’t take a lot to help them. Why don’t we do this all the time?” Mike said.

Image of Mike RogersMike was inspired and moved by how much success came from the benefit. He wanted to do more and give back to the cancer community. Thus, Grind for Life, Inc was born.

Through events and skating contests, the organization raises funds to help cancer warriors with traveling expenses. The nonprofit also assists patients and their families with lodging and meals.

“To wake up every day and know that you are doing good and you are making a great impact as a human, giving back as a person, to help save people, it is a great feeling,” Mike stated.

Since 2004 the organization has provided over $150,000 to the cancer community. It has also helped roughly 200 patients with long-distance traveling expenses.

It doesn’t matter if you are a skater or a surfer to support the mission of Surfing Santas or Grind for Life. You can contribute to their causes through the power of a generous donation. The donations that these organizations receive help keep their legacies alive. Make sure that you check out their official websites for more details.

Image of Nurse Jenna.For more information about organizations that help support mesothelioma patients, please contact Mesothelioma Guide’s patient advocate Jenna Campagna. You can reach her by phone at 888-385-2024 extension 102.

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Mesothelioma Treatment May Cause Financial Distress to Patients https://www.mesotheliomaguide.com/community/mesothelioma-treatment-may-cause-financial-distress-to-patients/ https://www.mesotheliomaguide.com/community/mesothelioma-treatment-may-cause-financial-distress-to-patients/#respond Tue, 12 Dec 2017 14:55:05 +0000 https://www.mesotheliomaguide.com/?p=12845 Having medical insurance is a good thing, right? An article recently published by Oncology Nurse Advisor has revealed that insured cancer patients may experience financial distress. Sometimes insurance isn’t enough to cover a person’s medical procedures, especially for mesothelioma patients. The cost of treatment is very expensive and sometimes unexpected finances can throw a patient […]

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Having medical insurance is a good thing, right? An article recently published by Oncology Nurse Advisor has revealed that insured cancer patients may experience financial distress.

Sometimes insurance isn’t enough to cover a person’s medical procedures, especially for mesothelioma patients. The cost of treatment is very expensive and sometimes unexpected finances can throw a patient a curveball.

Financial Distress Study

Image of a piggy bank and money with a stethoscope According to the study, insurance doesn’t help with lessening the burden on many cancer patients. By conducting a survey, researchers collected responses from 300 patients. These individuals were receiving therapy at 3 rural oncology clinics.

The information that was collected from each patient was their
  • Diagnosis
  • Socioeconomic status
  • Finances
  • Treatment
Of the 300 patients, “Thirty-nine percent of the patients expressed that the financial burden of cancer therapy was higher than expected,” stated the article.
Some of the factors that were associated with this financial burden were
  • Household income
  • Quality of life
  • Age
  • Employment/Unemployment
The study concluded that “…patients who had higher than expected financial burden were less likely to pay for their care.”

It also noted that the higher a patient’s financial burden was, the more they experienced higher or overwhelming stress from their finances. When it comes to combating any type of cancer, an individual’s finances should be the last thing on their mind. Patients should be more focused on their health and recovery.

Rising Treatment Costs

Sometimes even the best insurance plan may not cover all of the costs that are associated with mesothelioma treatment. Unfortunately, this means that a patient may have to pay some out-of-pocket expenses.

It is important that patients keep up with all of their medical expenses. In some circumstances, an individual may be reimbursed by their insurance company.

According to a paper that was published by oncologists at Mayo Clinic, “Americans with cancer pay 50 percent to 100 percent more for the same patented drug than patients in other countries.”

To learn more about rising cancer costs and this article published by Mayo Clinic, check out this video.

Did You Know?

8 weeks of chemotherapy treatment can cost a patient anywhere from $100 to $30,000.

3 Options That Can Help Pay for Mesothelioma Treatment

According to an article published by National Public Radio, “new cancer drugs commonly priced at $100,000 a year or more is becoming increasingly common.”

Many patients may delay or skip their treatment. In fact, 20-30% of mesothelioma patients do not receive any type of treatment. There are resources that can help with the burden of unexpected medical expenses.

  • 1
    Clinical Trials

Since mesothelioma is such a rare cancer, researchers are constantly looking for new ways to treat it. In some circumstances, a patient may be able to participate in clinical trials that pioneer new treatment methods.

Since clinical trials are considered experimental, qualified patients typically get to participate in them for free. Unfortunately, some medical expenses may still occur for a patient, such as doctor visits outside of the trial.

Have you considered participating in a clinical trial? Let us help you get connected to the right trial.

  • 2
    Asbestos Trust Funds

Bankrupt companies have trust funds set up that compensate victims of asbestos exposure. There are over $30 billion that is available to patients and their families.

justice iconTo have a peace of mind, a patient should consider hiring an experienced asbestos attorney. A mesothelioma lawyer can make the process of filing a claim stress-free. They can also guarantee that you receive the compensation that you deserve.

Have you been struggling with finances due to your treatment expenses? Let us help you get connected to a qualified lawyer now.

  • 3
    Charitable Organizations

There are many resources that can help a mesothelioma patient while they are receiving treatment. Not only can these support systems help an individual financially, but they can help emotionally.

Logo of peopleThere are resources that can help a patient with traveling and lodging. For instance, some organizations help by providing free flights. To help with hospital stays patients and their families can also get discounted housing or reduced hotel rates nearby.

It is important that patients and their families know that they are not alone. There are many patient support options that are available to assist them through this difficult milestone in their lives.

Do you have any tips or advice about paying for mesothelioma treatment?

Please share them with us in a comment below.

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Cleats for a Cause: Bringing Awareness to Cancers like Mesothelioma https://www.mesotheliomaguide.com/community/cleats-for-a-cause-bringing-awareness-to-cancers-like-mesothelioma/ https://www.mesotheliomaguide.com/community/cleats-for-a-cause-bringing-awareness-to-cancers-like-mesothelioma/#respond Thu, 07 Dec 2017 14:55:40 +0000 https://www.mesotheliomaguide.com/?p=12932 My Cause, My Cleats gives NFL players a chance to showcase and raise funds for the charities and organizations that they are passionate about on their cleats. During the 13th week of the 2017 season, about 1,000 players are anticipated to participate. Many players are supporting causes that are dear to them. In some circumstances, […]

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My Cause, My Cleats gives NFL players a chance to showcase and raise funds for the charities and organizations that they are passionate about on their cleats. During the 13th week of the 2017 season, about 1,000 players are anticipated to participate.

Many players are supporting causes that are dear to them. In some circumstances, they are wearing their cleats in honor of those that are fighting cancer.

Image of football cleats that reads #MyCauseMyCleats

“NFL’s My Cause, My Cleats initiative will allow players to wear their hearts on their feet, showcasing cleats representing charities that are important to them,” states the Los Angeles Times.

Supporting the American Cancer Society

Patrick DiMarco from the Buffalo Bills and Drew Kaser from the Kansas City Chiefs are wearing cleats to support the American Cancer Society.

“We’re on a mission to free the world from cancer. Until we do, we’ll be funding and conducting research, sharing expert information, supporting patients, and spreading the word about prevention. All so you can live longer — and better.” – The American Cancer Society

American Cancer Society logoThe American Cancer Society is a 501(c)(3) nonprofit organization. It currently is present in over 5,000 communities in the country. This society has contributed to decreasing the overall cancer death rate in the U.S. by 25%.

The organization raises and donates funds to cancer
  • Research
  • Education
  • Treatment
  • Detection
  • Patient support
“The American Cancer Society is structured to fight for every life threatened by every cancer in every community,” states the American Cancer Society website.

Wearing Cleats for Cancer Research

NFL player Rodney McLeod is showing his support for the American Association for Cancer Research (AACR). McLeod plays for the Philadelphia Eagles.

“Cancer is not a single disease, but more than 200,” states the AACR website.

Mesothelioma is one of these 200 diseases. This type of cancer affects anywhere from 2,000 to 3,000 people in the United States each year.

American Association for Cancer Research logoThe American Association for Cancer Research was founded in 1907. The association’s goal is to prevent and cure all types of cancers. Through research, awareness, and training AACR hopes to secure the future for researchers and the public.

The 4 milestones that AACR focuses on to accomplish their mission are
  • Research
  • Education
  • Communication
  • Collaboration
“AACR fosters research in cancer and related biomedical science; accelerates the dissemination of new research findings among scientists and others dedicated to the conquest of cancer; promotes science education and training; and advances the understanding of cancer etiology, prevention, diagnosis, and treatment throughout the world.” – The American Association for Cancer Research’s mission.

Mesothelioma and Breast Cancer

Larry Fitzgerald will be taking to the field wearing black and pink cleats. The goals of his cleats are to honor his mother and to raise awareness about breast cancer. Fitzgerald plays for the Arizona Cardinals.

It may be odd to put mesothelioma and breast cancer in the same sentence, but some research claims that there are some similarities found among them.

Some similarities between these cancers are
  • Diagnostic markers
  • Symptoms
  • Treatments
“It is possible that asbestos fibres move through lymphatic fluid to chest and breast tissue. Another hypothesis is that fibres actually pierce lung and associated tissue and migrate into the chest wall,” states the Breast Cancer UK website.

The exact cause of breast cancer is unknown. The only known cause of mesothelioma is asbestos exposure. More research will need to be conducted to determine if there truly is a link between these two cancers.

Cleats for Thumbs Up, Cancer Down

Mitchell Trubisky is wearing cleats that support the Thumbs Up, Cancer Down association. Trubisky plays for the Chicago Bears.

“Our mission is simple: help those battling cancer. But how do we do it? For starters, we offer encouragement through thumbs-up images shared from around the world.” – Thumbs Up, Cancer Down

Thumbs Up, Cancer Down logoThis organization hopes to put a smile on someone’s face that is battling cancer. They do this by allowing people to submit a photo of themselves giving a thumbs-up. In return, photo submissions are shared across social media platforms to inspire and encourage cancer warriors.

The organization has also developed something called a “Thumbs Up Power Up Pack.” When a pack is purchased, they donate one to a cancer patient in need. This ‘Power Up Pack’ consists of items that can be comforting and useful to a patient that is experiencing chemotherapy.

Spreading Awareness with My Cause, My Cleats

NFL logoMy Cause, My Cleats debuted during the 2016 season. It was the first time that the NFL gave players a chance to wear custom footwear. After having a great deal of success last year, players will return to the field this 2017 season supporting causes, organizations, and charities on their cleats.

To see other organizations that NFL players are supporting, check out this short video.

For a complete list of all of your favorite football players that are wearing cleats for a cause, make sure that you check out NFL’s official website. You can also join the conversation on social media by using #MyCauseMyCleats.

Is one of your favorite players supporting a cause that is dear to you? Tell us about it in a comment below.

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Radiotherapy After Surgery: Its Effects on Mesothelioma Patients https://www.mesotheliomaguide.com/community/radiotherapy-surgery-effects-mesothelioma-patients/ https://www.mesotheliomaguide.com/community/radiotherapy-surgery-effects-mesothelioma-patients/#respond Wed, 06 Dec 2017 13:37:49 +0000 https://www.mesotheliomaguide.com/?p=12909 A recently published study has concluded that it is both safe and feasible to use high-dose radiation therapy after surgery. This is important because it further solidifies the effectiveness that multimodal therapy may have for pleural mesothelioma patients. Pleural mesothelioma accounts for roughly 75 percent of all mesothelioma diagnoses. Sometimes this type of mesothelioma can […]

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A recently published study has concluded that it is both safe and feasible to use high-dose radiation therapy after surgery. This is important because it further solidifies the effectiveness that multimodal therapy may have for pleural mesothelioma patients.

Pleural mesothelioma accounts for roughly 75 percent of all mesothelioma diagnoses. Sometimes this type of mesothelioma can be misdiagnosed as lung cancer. To make sure that patients are properly diagnosed, it is always a good idea for them to seek a second opinion.

Studying Radiotherapy as a Mesothelioma Treatment

The study was conducted between 2008 and 2012. There were 36 patients with malignant pleural mesothelioma who participated in the study.

19 of the participants had undergone a pleurectomy/decortication. The other 17 had undergone a surgical biopsy.

The patients were treated with accelerated hypofractionated radiotherapy over five consecutive days. This simply means that they received high doses of radiation over a short amount of time. Typical external beam radiation treatments for pleural mesothelioma patients are given 5 days a week for several weeks.

The methods used to deliver the radiation to the patients were:
  • Helical Tomotherapy: is an advanced form of radiation therapy that uses several overlapping helical arcs, or rotational beams, that delivers radiation to the tumor slice-by-slice.
  • Intensity-Modulated Arc Therapy (IMAT): is another form of radiation therapy that only uses up to three arcs to deliver radiation and uses greater, more effective doses of radiation than helical tomotherapy.

Both helical tomotherapy and IMAT were used because they are very accurate at targeting tumors. They also reduce the amount of radiation that can get to a person’s surrounding organs. Out of the 36 patients, there were only 3 cases of grade 3 pneumonitis or lung inflammation.

What is Radiotherapy?

MRI machineRadiation therapy, or radiotherapy, is the use of high-energy x-rays or proton beams to treat cancer. Depending on the severity of the cancer, radiation may be used destroy the cancer cells completely, or shrink the tumor as a means of palliative care.

Unfortunately, radiation can also damage a patient’s healthy cells. Some side effects are possible, although some patients experience none.

Some side effects of radiotherapy are:
  • Redness or soreness in treatment area
  • Dry, tender, or itchy skin
  • Hair loss
  • Fatigue
Due to the presence of radiation in the chest, a pleural mesothelioma patient may also experience:
  • Lung inflammation
  • Difficulty breathing
  • Cough
  • Difficulty swallowing

There are many ways a mesothelioma patient can alleviate the side effects of radiation, such as by altering their diet. A patient should consult with their doctor for more ways to ease the side effects they may be experiencing.

Results of the Study

Overall, this phase I study showed promising results for using radiation with malignant pleural mesothelioma patients after their surgeries.

Patients were followed up between 3 and 54 months after the study. The median survival of patients that underwent surgery followed by radiation was 21.6 months. The patients that didn’t have surgery had a reduced survival time of 19.4 months.

Researchers determined that even though this trial was successful, more research will need to be done. The team anticipates to conduct a phase 2 dose-escalation trial in the future.

Image of Nurse Jenna.Participating in clinical trials can be very beneficial to mesothelioma patients. Sometimes it opens doors for treatment options that they didn’t have before.

It is important that you speak with your doctor if you are considering participating in a clinical trial. For more information about currently recruiting trials, please contact Mesothelioma Guide’s patient advocate Jenna Campagna at 888-385-2024 extension 102.

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NYPD Honors Mesothelioma Specialist Dr. Flores https://www.mesotheliomaguide.com/community/nypd-honors-mesothelioma-specialist-dr-flores/ https://www.mesotheliomaguide.com/community/nypd-honors-mesothelioma-specialist-dr-flores/#respond Tue, 05 Dec 2017 14:56:13 +0000 https://www.mesotheliomaguide.com/?p=12824 Recently, 13 physicians were appointed as members of the Society of Honorary Police Surgeons for the NYPD. Among those physicians was mesothelioma specialist Dr. Raja M. Flores. This May, Dr. Flores was also honored at the ADAO conference. He was awarded the Dr. Irving Selikoff Lifetime Achievement Award for his passion for surgically treating his […]

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Recently, 13 physicians were appointed as members of the Society of Honorary Police Surgeons for the NYPD. Among those physicians was mesothelioma specialist Dr. Raja M. Flores.

This May, Dr. Flores was also honored at the ADAO conference. He was awarded the Dr. Irving Selikoff Lifetime Achievement Award for his passion for surgically treating his patients.

Being Honored by the Society of Honorary Police Surgeons

The process of becoming a physician for the NYPD is tedious. All of the nominees go through a process where their qualifications are thoroughly reviewed by the society.

It is considered a great honor to be a physician that is picked by the NYPD. When a service member or one of their family members are injured or sick, these honorary surgeons will treat and care for them.

“It is truly a privilege to serve the members of the NYPD who serve us and put their lives on the line every day,” commented Dr. Flores.

Getting to Know Dr. Raja M. Flores

Image of dr FloresDr. Raja Flores is the chairman of thoracic surgery at Mount Sinai. He serves as a professor in the department as well. Dr. Flores is also known as the director of the Thoracic Surgical Oncology Program at the Tisch Cancer Institute.

Dr. Raja M. Flores is a well-known name in the mesothelioma community. He is recognized for his dedication and efforts for treating mesothelioma and other asbestos-related illnesses.

Among his years of practice, Dr. Flores has developed a unique approach to treating his patients surgically. He has implemented the VATS lobectomy program at Mount Sinai.

Based on Dr. Flores’ research, he has discovered that a VATS lobectomy can be very effective for mesothelioma patients.

According to Mount Sinai, “Dr. Flores currently has one of the largest VATS lobectomy experiences in the world.”

This procedure has showcased

  • Higher survival rates
  • Less chances of cancer recurrence
  • Fewer complications
  • Shorter hospital stays
To learn more about what a VATS lobectomy is, check out this short video.

Exploring Mesothelioma at Mount Sinai

Mount Sinai consists of more than 7,000 primary and specialty care physicians. Among these medical experts, you can find Dr. Raja M. Flores and his team pioneering new approaches for treating mesothelioma.

“Our goal is to treat the patient, not the disease,” states the Mount Sinai website.

In the mesothelioma department, specialists take into consideration all of the aspects of caring for their patient. Next, they work together to coordinate the best treatment options that are available at Mount Sinai.

Mesothelioma patients have the best outcomes when they participate in multi-modality treatment. At Mount Sinai, a patient’s treatment is specialized for them. It may consist of surgery, chemotherapy, and/or radiation therapy.

Dr. Flores and his team participate extensively in researching mesothelioma and how to cure it. Their overall mission is to perform lung-sparing procedures. However, the department has successes in performing extrapleural pneumonectomy and pleurectomy/decortication.

Fun Fact: Mount Sinai is a member of many national consortiums that use mesothelium tissue specimens. Participating in organizations like this helps with understanding and enhancing ways to treat mesothelioma.
Check out what Dr. Raja M. Flores has to say about treating mesothelioma patients.

If you have any questions about Dr. Flores or Mount Sinai, feel free to contact Mesothelioma Guide’s nurse Jenna at 888-385-2024 extension 102. You may also email her at jenna@mesotheliomaguide.com.

Have you been a patient of Dr. Raja M. Flores? We’d love to hear from you.
Tell us about it in a comment below.

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Words of Wisdom from Mesothelioma Survivor Kendra Ferreira – Part 2 https://www.mesotheliomaguide.com/community/words-of-wisdom-from-mesothelioma-survivor-kendra-ferreira-part-2/ https://www.mesotheliomaguide.com/community/words-of-wisdom-from-mesothelioma-survivor-kendra-ferreira-part-2/#respond Thu, 30 Nov 2017 14:55:20 +0000 https://www.mesotheliomaguide.com/?p=12740 Welcome to Words of Wisdom from Mesothelioma Survivor Kendra Ferreira – Part 2. Previously, Kendra spoke with us briefly about the topics of prognosis and treatment. Many patients and their loved ones that speak with our patient advocates are concerned about treatment and the health effects that are associated with it. Sometimes they may even […]

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Welcome to Words of Wisdom from Mesothelioma Survivor Kendra Ferreira – Part 2. Previously, Kendra spoke with us briefly about the topics of prognosis and treatment.

Kendra Ferreira - mesothelioma survivor Many patients and their loved ones that speak with our patient advocates are concerned about treatment and the health effects that are associated with it. Sometimes they may even turn to statistics for answers.

Once again Kendra has helped us by sharing more insight about mesothelioma treatment and her personal experiences with her diagnosis.

Quality of Life

Before, during, and after treatment, the quality of life of a mesothelioma patient can play a vital role in improving their prognosis. A patient’s quality of life refers to the satisfaction and comfort that they experience.

Here is what Kendra had to say about her quality of life and how it changed for her after treatment.

Q: How was your quality of life after treatment? Did it change? If so, how?

A: At first I was really tired and weak for about a year after treatment finished. I couldn’t gain weight but my doctor said it was because my cells were rebuilding themselves. I could only eat very small portions because it was all my stomach could handle without feeling discomfort. Presently, I feel very good but I have lost some of my memory from the chemo and I still have discomfort digesting sometimes, I still eat smaller portions.

Statistics Aren’t the Answer

In the great words of Mark Twain, “Facts are stubborn things, but statistics are pliable.”

Kendra and many other mesothelioma warriors are beating the odds of their prognosis every single day. In many circumstances, statistics may also play a factor in a patient’s decision to pursue certain treatment options.

News flash – they shouldn’t.

Q: Many people that contact our office are fixated on statistics that they find. Since statistics aren’t “one size fits all”, what is your advice to patients that
take into consideration statistics when it comes to making a decision about their treatment?

Example: Some people may opt out of doing a surgery because statistics tell them it may or may not extend their prognosis for a couple months.

A: I met with four different oncologists about treatment options, three of the four offered no hope for mesothelioma. One oncologist gave me “the quality of life” speech which meant weighing out treatment options versus the quality of my life. When I met with the fourth oncology group, they were positive, offered hope, and I knew I was in good hands.

My advice is stay positive and to find the right oncologist who has a good protocol and offers treatment if the cancer should return. It is an overwhelming time in your life but you have to make the right choices. I took a chance, I knew the odds weren’t in my favor and I was so scared but I’ve always been a strong person and was determined to beat the statistics and live.

Treatment Side Effects

Many mesothelioma patients are curious about the side effects that are associated with their treatment plan. Since mesothelioma is treated so aggressively, not all treatment options are safe for every patient. It is also important to remember that everyone is different and that treatment side effects may vary in individuals.

In Kendra’s journey to improve her prognosis, she didn’t let any treatment side effects stop her. She also had the support of her husband and family every step of the way.

Q: Did any side effects from treatment affect the treatment decisions that you made? How did you outweigh them?

Example: Some people don’t want to do chemotherapy treatment because they don’t want to lose their hair.

A: I was scared about losing my hair but that didn’t stop me from chemotherapy, I bought a wig and cut my hair really short. I was exhausted after surgery and after chemo treatments, so I had to stay in bed quite a bit. I also lost my appetite and was often nauseous, so I drank Ensure to get nutrients.

My final treatments were four weeks of abdominal radiation that were so awful, I wanted to give up. I had a difficult time keeping any food down and I was losing weight rapidly. My husband coaxed me into finishing my radiation treatments and I am grateful that I did. Unfortunately, meso is an aggressive cancer and needs aggressive treatment. I liked to focus on the end of the treatment and plan an activity or something that I could look forward to.

Traveling for Treatment

Since mesothelioma is such a rare disease, there aren’t very many specialists that know how to treat it. In many circumstances, a patient may have to travel to receive proper treatment.

A patient shouldn’t let the fear of traveling prohibit them from seeking the correct treatment plan for them. For instance, Kendra had a roundtrip travel time of 8 hours for every one of her treatment visits.

Q: I noticed that you had to travel to meet your mesothelioma specialist. What advice would you give to a patient that has to travel for treatment?

A: I was extremely scared about having to travel to and from New York City (4 hours each way) for surgery and treatments but it ended up being less difficult than I expected. I was fortunate to be able to fly with Angel Flights and stay at Miracle House for cancer patients, and when I couldn’t get a flight I took the train. Miracle House is no longer available but while staying there I was able to meet other cancer patients and volunteers who helped make the journey a little easier.

My advice is to look for resources available to cancer patients, people and organizations are so willing to help. It was a scary journey but I met so many wonderful people through my travels to New York City. Let your family and friends help, my family helped take care of my children and my friends volunteered to accompany me to my treatments if my husband wasn’t able to.

Image of Nurse Jenna.Treatment for mesothelioma can be expensive. As Kendra mentioned, there are resources that are available to patients and their loved ones that can help.

For more information about getting connected to these support options, please contact Jenna Campagna at 888-385-2024 x102.

If you haven’t already, make sure that you check out, Words of Wisdom from Mesothelioma Survivor Kendra Ferreira – Part 1.

Have you enjoyed reading what Kendra has shared with us?
Please tell us about it in a comment below.

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Words of Wisdom from Mesothelioma Survivor Kendra Ferreira – Part 1 https://www.mesotheliomaguide.com/community/words-of-wisdom-from-mesothelioma-survivor-kendra-ferreira-part-1/ https://www.mesotheliomaguide.com/community/words-of-wisdom-from-mesothelioma-survivor-kendra-ferreira-part-1/#respond Tue, 28 Nov 2017 14:55:39 +0000 https://www.mesotheliomaguide.com/?p=12729 Mesothelioma Guide recently got in touch with our survivor, Kendra Ferreira. She was kind enough to answer a few questions that many people ask when they contact our patient advocates. Kendra’s responses were so inspiring that we have decided to break up her answers into a 2 part series. With that being said, please make […]

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Mesothelioma Guide recently got in touch with our survivor, Kendra Ferreira. She was kind enough to answer a few questions that many people ask when they contact our patient advocates.

Kendra’s responses were so inspiring that we have decided to break up her answers into a 2 part series. With that being said, please make sure that you check back with us on Thursday.

Understanding Your Prognosis

It is important that mesothelioma patients remember that a prognosis is a prediction. This is just a doctor’s educated guess as to what the outcome of a patient’s disease is going to be.

Kendra Ferreira - mesothelioma survivor

Nobody wants to be told that they have a life expectancy of 12 to 21 months. However, there have been many mesothelioma survivors, just like Kendra, who have outlived their prognosis.

When Kendra was first diagnosed with peritoneal mesothelioma, she was given a 24 month prognosis. Here is what she had to say about her prognosis.

Q: How did you get over your initial prognosis?

A: I was extremely scared and overwhelmed, I had never even heard of mesothelioma. I prayed quite a bit, cried on everyone’s shoulder and found other cancer survivors I could talk to. I have two really close friends who both survived ovarian cancer when they weren’t supposed to, they helped give me so much encouragement. My oncologist put me in touch with another meso patient who had already been through the protocol of surgery and chemo so I asked about what to possibly expect from treatments.

Preparing for Treatment

Treatment for mesothelioma is an aggressive process for a patient to endure. Treatment can consist of surgery, chemotherapy, and radiation. In many circumstances, these treatment options can be combined to combat a patient’s disease.

Kendra’s treatment plan consisted of chemotherapy, radiation, and surgery. Here is what she told Mesothelioma Guide in response to preparing for treatment.

Q: What advice would you give about prepping for treatment. Did you take any specific supplements, have big changes in your diet, or do any workout routines?

A: My doctor told me to eat healthy foods and not to worry if I put on a few extra pounds. I have always eaten healthy so I didn’t change my diet. I took vitamins and walked a little every day to keep my lungs in good shape, I found the fresh air would feel good for my soul and clear my thoughts. I did take multivitamins also.

Words Every Patient Needs to Know

Many mesothelioma warriors and their loved ones contact Mesothelioma Guide’s patient advocates Jenna Campagna and Carl Jewett. Their mission is to provide the best resources and answers to any questions that are directed their way.

Sometimes the best answers can come from someone that a patient can truly relate to. With that being said, we are thankful for Kendra taking the time to share her words of wisdom with us. Here is what she believes that every mesothelioma patient needs to hear.

Q: What words do you think that every mesothelioma patient needs to hear?

A: A positive attitude is so important and also to take care of yourself. Cry on shoulders when you need to and don’t be afraid to let others help you, people want to help. Eat healthy and organic if possible, I enjoyed light exercise; walking and yoga is good for the soul. Do things you enjoy, when you feel good take a day trip, change up your scenery, or go somewhere where you can forget you have cancer for a little while.

As previously mentioned, this is only the first part of what Kendra shared with us. Make sure that you check back on Thursday. To check out more survivor stories just like Kendra’s, you can request a free Mesothelioma Survivors Guide.

Did some of Kendra’s advice help answer any questions that you may be having?
Please let us know in a comment below.

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Music Therapy: Reducing Stress & Anxiety in Mesothelioma Patients https://www.mesotheliomaguide.com/community/music-therapy-reducing-stress-anxiety-in-mesothelioma-patients/ https://www.mesotheliomaguide.com/community/music-therapy-reducing-stress-anxiety-in-mesothelioma-patients/#respond Wed, 22 Nov 2017 14:47:24 +0000 https://www.mesotheliomaguide.com/?p=12786 Mesothelioma patients often seek out different ways to help ease the symptoms of their disease or the side effects of treatment. One option that offers a multitude of benefits is music therapy. What is Music Therapy? The use of music as a healing mechanism has been referenced in the writings of Plato and Aristotle. However, […]

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Mesothelioma patients often seek out different ways to help ease the symptoms of their disease or the side effects of treatment. One option that offers a multitude of benefits is music therapy.

What is Music Therapy?

“Music can be a powerful adjunct to the healing process. And music is one of the safest medicines you’ll ever find. You can dose yourself as you please with no worries about toxic side effects.” – Allan Hamilton

The use of music as a healing mechanism has been referenced in the writings of Plato and Aristotle. However, the concept of modern music therapy did not come to fruition until the Second World War when the demand for musicians in VA hospitals increased.

American Music Therapy Association logo.The validity of music therapy was further solidified in 1944 when Michigan State University introduced an undergraduate program in the field. In 1950, the National Association for Music Therapy (NAMT) was founded.

Today NAMT is known as the American Music Therapy Association. The AMTA represents over 5,000 music therapists and related organizations worldwide.

Music therapy is defined as “the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program,” states the American Music Therapy Association website.

What Happens During a Therapy Session?

“(Music therapy) can make the difference between withdrawal and awareness, between isolation and interaction, between chronic pain and comfort — between demoralization and dignity.” – Barbara Crowe

One of the best things about music therapy is that it is personalized for each participant. The music therapist will perform an initial evaluation of the patient before treatment begins.

An evaluation considers a patient’s

  • General mood
  • Favorite genre of music
  • Musical ability

A specialist then crafts a treatment based on the patient’s individual needs, wants, and abilities.The goal is to maximize the impact of their therapy.

Some activities a patient might take part in are:

  • Composing music
  • Instrumental improvisation
  • Writing lyrics
  • Singing
  • Dancing or moving to the music
  • Listening to music

For instance, a mesothelioma patient participating in music therapy does not have to be a musician to benefit from it. They don’t even have to know how to play an instrument.

What Are the Benefits of Music Therapy?

Hand of someone playing strings on a guitar.
Various studies have been done to understand the effects music therapy can have on patients. Remarkably, they’ve concluded that many individuals can benefit from it, especially, cancer patients.

Some of the benefits music therapy provides are:

  • Decreased anxiety
  • Decreased depression
  • Improved motivation to engage in treatment
  • Decreased pain
  • Increased relaxation
Watch the video below to see the impact music therapy can have on cancer patients.

If you are interested in trying music therapy, make sure to talk to your doctor. Some hospitals offer these services free of charge.

Have you already tried music therapy?
We would love to hear about your experience in the comments below.

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4 Reasons to Be Thankful for a Mesothelioma Caregiver https://www.mesotheliomaguide.com/community/4-reasons-to-be-thankful-for-a-mesothelioma-caregiver/ https://www.mesotheliomaguide.com/community/4-reasons-to-be-thankful-for-a-mesothelioma-caregiver/#respond Tue, 21 Nov 2017 14:55:31 +0000 https://www.mesotheliomaguide.com/?p=12763 November is recognized as National Caregivers Month. According to the National Alliance for Caregiving, there are more than 44 million Americans that have assumed the role as a caregiver. So what is caregiving? Check out this video from Cancer.Net. Being Thankful for Mesothelioma Caregivers Being a caregiver for someone that has mesothelioma can feel like […]

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November is recognized as National Caregivers Month. According to the National Alliance for Caregiving, there are more than 44 million Americans that have assumed the role as a caregiver.

So what is caregiving? Check out this video from Cancer.Net.

Being Thankful for Mesothelioma Caregivers

Being a caregiver for someone that has mesothelioma can feel like you are riding a rollercoaster. There will be ups, downs, and spirals, but every caregiver needs to know that they are appreciated for what they do.

In the spirit of this month of thankfulness, at Mesothelioma Guide we have compiled a small list of why we are thankful for our mesothelioma caregivers.

  • 1
    Your Caregiver, Your Companion
Image of someone with their caregiver.

Being someone’s shoulder to cry on and to lean on when things are rough isn’t as easy as it may seem. Since mesothelioma is both rare and it is diagnosed unexpectedly, a patient and caregiver may be faced with many new challenges in their life.

As a caregiver, you are providing companionship to your loved one. You honestly have no idea how much easier you make it for them. Not only are you there for their good times and their bad, but you are with them throughout their whole medical journey.

You are there for the upside and the flipside of your loved one’s treatments. You help support, praise, and comfort them when they are most vulnerable. We thank you for being strong.

  • 2
    You Know the Importance of Health
Image of doctor talking to patient and caregiver.

As a caregiver, you make the best decisions when it comes to your loved one and their health. You help them with taking and managing their medications. You also play an important factor in determining which treatment options should continue or stop.

You hold a huge responsibility and critical role in your loved one’s mesothelioma treatment. By monitoring their overall health, medications, and treatments, you are the first to report to their doctor if there are any changes.

Caring for your health as a caregiver is just as important as caring for your loved one. Make sure that you take care of yourself. You want to be the best caregiver that you can be.

A few things every caregiver should do

  • Get plenty of rest
  • Maintain a healthy diet
  • Learn about your loved one’s cancer
  • Talk about your concerns and fears

Lastly, don’t be afraid to ask for help. You can always ask a friend or family member to help you out. You may even consider hospice care. We all know that being a caregiver isn’t easy and for that dedication, we thank you.

  • 3
    You Help Make Life Normal

Image of loved ones with someone they are caring for.

By helping your loved one do things that they once could do, you help in more ways than you know. You make things seem normal when they aren’t and you help achieve daily tasks when they seem impossible to complete.

As a caregiver you may find yourself helping with

  • Housekeeping
  • Feeding
  • Bathing
  • Managing medication
  • Providing transportation

In the case of a mesothelioma patient’s caregiver, their disease plays a critical role in the need for a caregiver. If a patient’s mesothelioma progresses the job of a caregiver may become more advanced. In circumstances where their condition improves, the role of a caregiver will decline.

At Mesothelioma Guide, we know that putting the needs of a loved one or friend in their time of need, before your own, is a real commitment. We also know that it isn’t easy to make some of the choices and sacrifices that you make. You might not think about it, but you are appreciated.

  • 4
    You Make Hard Decisions
Image of caregiver talking to the person they are caring for.

One of the hardest roles as a caregiver that you have is making decisions for the individual you are caring for. Not very many people can openly admit that they enjoy making life-changing decisions. Especially when they pertain to someone that may not be capable of making choices of their own.

Sometimes you may find yourself making choices about your loved one’s treatment or their finances. In tougher situations, you may be making decisions about legal issues or end-of-life care. You might not think that you deserve to be told this, but thank you.

To all of the caregivers across the globe, we truly are thankful and grateful for all that you do. Not only do you need to know that you are appreciated, but you need to give yourself credit for doing it and being the best at what you do.

Have you ever been someone’s caregiver? Or are you thankful for your caregiver? We would love to hear from you. Please share with us your story in a comment below.

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How Helpful Can Acupuncture Therapy Be for Mesothelioma Patients? https://www.mesotheliomaguide.com/community/helpful-can-acupuncture-therapy-mesothelioma-patients/ https://www.mesotheliomaguide.com/community/helpful-can-acupuncture-therapy-mesothelioma-patients/#respond Thu, 16 Nov 2017 14:56:39 +0000 https://www.mesotheliomaguide.com/?p=12695 During treatment, such as chemotherapy, a mesothelioma patient may experience fatigue. Is it possible that acupuncture therapy may help with improving this symptom? A double-blind clinical trial believes that acupuncture may be the answer. Studying the Art of Acupuncture A recent study published in Oncology Nurse Advisor revealed the results of a clinical trial that […]

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During treatment, such as chemotherapy, a mesothelioma patient may experience fatigue. Is it possible that acupuncture therapy may help with improving this symptom?

A double-blind clinical trial believes that acupuncture may be the answer.

Studying the Art of Acupuncture

A recent study published in Oncology Nurse Advisor revealed the results of a clinical trial that tested the use of acupuncture on patients. The goal of the study was to see if it can help with easing a patient’s cancer-related fatigue.

Image of someone getting acupuncture on their back.During this trial, 28 participants were in either a group that received acupuncture or a placebo. All participants experienced their type of treatment at random.

Twice a week patients experienced their treatment over a span of 4 weeks. Following their treatment, they experienced 2 weeks of follow-ups.

By using 2 tests, the researchers measured the patient’s fatigue levels and their quality of life.
  • 1
    Brief Fatigue Inventory (BFI-C) – assesses how severe a patient’s cancer-related fatigue is. By using a series of tools, a patient’s sensitivity is tested and scored.
  • 2
    Functional Assessment of Cancer Therapy (FACT) – is a tool and assessment pairing that helps with measuring a patient’s quality of life.

BFI-C scores revealed:

THE PLACEBO
VS
ACUPUNCTURE
WEEK 2
6.3
VS
5.1
WEEK 4
6.4
VS
5.2
WEEK 6
7.1
VS
4.5

FACT-LSC scores also reflected that a participant’s quality of life had improved.

Overall, the study concluded that acupuncture helped with improving a patient’s cancer-related fatigue.

What is Acupuncture?

Acupuncture is a form of traditional Chinese medicine that has been practiced for thousands of years in Asian countries. It is used to treat illnesses, relieve symptoms, and to control pain.

The first thing that many people think about when they hear the word acupuncture is needles. However, this therapy not only applies needles, but it can also involve heat and pressure to specific areas of a patient’s body.

Image of someone getting acupuncture therapy in the form of pressure applied to their hand.It is thought that everybody has a flow of energy that is inside of their body. This is referred to as a qi and it affects the spiritual, emotional, mental, and physical well being of a person.

Based on Chinese traditional medicine, the qi consists of two forces called yin and yang. These two forces work together to form a sense of completeness, but the tricky thing is that yin and yang are an unending cycle, which means that nothing is ever completely balanced.

Example: When an individual experiences pain or an illness such as mesothelioma, their flow of energy becomes disturbed. It is thought that this causes their yin and yang to not be balanced and results in them being sick.

According to the National Cancer Institute, “Many of the major organs of the body are believed to be yin-yang pairs that must be in balance to be healthy. When a person’s yin and yang are not in balance, qi can become blocked. Blocked qi causes pain, illness, or other health problems.”

The goal of acupuncture is to help restore a person’s broken qi. By going to a qualified acupuncturist this procedure can be achieved by using sterile and disposable needles. However, going to an individual that isn’t experienced in the art of acupuncture can cause harmful side effects to a patient.

Fun Fact: The act of acupuncture has been used in the United State for roughly 200 years.

Treating Patients with Acupuncture

Some clinical trials have revealed that acupuncture may even help a patient’s immune system become stronger during chemotherapy. In fact, a systematic review revealed that more than 1,200 participants said that it helped them with symptoms they experienced from their treatments.

Acupuncture is thought to help with improving these side effects:

  • Nausea
  • Vomiting
  • Fatigue
  • Anxiety
  • Depression

Image of someone getting acupuncture done on their arm.The strongest side effects that acupuncture is thought to help with relieving are nausea and vomiting. Many studies suggest that it is more effective in helping a patient with preventing vomiting than reducing their nausea.

Many mesothelioma patients are interested in participating in alternative and complementary forms of medicine. It is always important that a patient speaks with their doctor to determine what alternative treatment options are safe for them.

Have you participated in acupuncture therapy before? We would love to hear from you.
Leave us a comment below.

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