Savannah’s Column

May 2013

National Cancer Survivors Day

Saturday, June 2, 2013 is National Cancer Survivors Day. This day is for celebrating, inspiring, supporting, and reaching out to others. This day is for everyone including those who have been diagnosed with cancer, survivors, family members and friends, or those who are medical professionals. You can host an event within your community or contact the American Cancer Society office, hospital, or local cancer treatment center to find an event within your area. To find out more, visit the National Cancer Survivors Day Foundation.

This day is particularly important for those who have survived malignant pleural mesothelioma. This rare form of cancer affects the mesothelium, a protective membrane that covers internal organs of the body. Approximately 2,000 to 3,000 people in the United States are diagnosed each year.

Mesothelioma survivors are strongly encouraged to celebrate on Sunday. When these patients are diagnosed with this dreadful, terminal disease, the amount of time they have left may be one of the first things that come to their mind. We want to honor those who have been fighting mesothelioma by showing our support of National Cancer Survivors Day.

The press release from National Cancer Survivors Day stated “DCSD provides an opportunity for cancer survivors to connect with other survivors, celebrate milestones, and recognize the healthcare providers, family, and friends who have supported them along the way. It is a day for cancer survivors to stand together and show the world that life after a cancer diagnosis can be meaningful, productive, and even inspiring.”

Let us know how you are celebrating National Cancer Survivors Day. We would love to hear your story.

PMC Weekly Webinars

As the registered nurse and medical liaison for Pacific Meso Center at PHLBI, I hold weekly webinars on the many topics surrounding mesothelioma. Some of the topics covered so far include: what to do when first diagnosed, knowing the warning signs of mesothelioma, and psychosocial support. In the near future I will be hosting our “Meet the Experts” series, which will include talks with oncologists, radiologists, thoracic surgeons, and various others who are experts in the field of mesothelioma. Dr. Fereidoun Abtin, who specializes in diagnostic radiology, will be one of many who plan to present on this series. He will be discussing cryoablation as an option for mesothelioma patients after surgery. This will be an exciting webinar for those who are interested in learning more about cryoablation. I have been getting an excellent response from those who are tuning in to my weekly webinars and I look forward to presenting new topics to our audience.

April 2013

Preparing for Your Doctor Visits

As a patient educator and advocate, it is my job to properly educate patients for what is ahead after diagnosis. My goal is to make each step of the way as easy as possible for mesothelioma patients and their families. After speaking with many patients following their initial appointments, surgery, or discharge from the hospital, I noticed that not everyone is fully aware of how to prepare for these events and procedures or what to expect. I believe understanding this essential process can make things go more smoothly and may lessen the stress that comes along with this disease and treatment.

Planning for any doctor appointment can be overwhelming and challenging. So much information will be presented and discussed during this time, that you may find it hard to understand and remember everything. Adequately preparing for your appointments can make them beneficial so that you can gather all the information you need to make informative decisions. Note that it may also be helpful to keep a personal copy of all of your medical records and bring them to appointments. You may find that creating a system to organize all of the records and information at home may serve to be useful.

Sometimes, test results and compact discs with all scans and images may have been sent over from your referring physicians’ office. You may need to check with the receptionist before your appointment to confirm. If these results have not been received, it may be your responsibility to bring these items to the appointment yourself. Also, the original pathology glass slides used for diagnosis must be hand carried, as this information cannot be faxed over. Below we have complied a list of things that you should consider bringing to your doctor visit.

Things to Bring to Your Doctor Visit

• Test results
• The original pathology glass slides used for diagnosis
• (CD) compact disc with all x-rays, scans, and other images
• Notebook or recording device
• A family member or friend for support
• A prepared list of questions to ask your doctor

Questions to Ask Your Doctor

You will most likely have many questions to ask your doctor, but sometimes when you get to your appointment you get caught up in everything that comes along with your visit that you may forget. Some of these questions may not be addressed during the appointment and you may think of them afterwards. This is why it may be helpful to sit down before the appointment and think of all the questions you have and write them down on a notepad. You may consider thinking of questions surrounding things such as your symptoms, possible treatment options, how this will affect your daily life, etc. We have prepared a list of questions below for you to consider writing down before you appointment to ask your doctor. These questions are all specific to mesothelioma, but you may use these as a guideline for other illnesses.

• What type of mesothelioma do I have?
• Can you explain my pathology report to me?
• What is the stage of my cancer, and what does this mean?
• What is my prognosis?
• What treatment options are available to me?
• Am I eligible for clinical trials?
• Who will be coordinating my overall treatment and follow-up care?
• How will this disease/treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?
• Who can I ask for help about managing the costs related to my cancer treatment?
• What support services are available to me and my family?
• Will I have to quit my job?
• Do I have any legal rights?
• How many mesothelioma surgeries have you done?
• How many of your patients have had complications?
• What is the chance that my cancer will come back and/or spread?

If you have any questions or concerns, please contact me personally at 310-474-8223 or by email at scline@phlbi.org.

Mesothelioma Survivor Interview

Mesothelioma survivor and UK resident, Jan Egerton, was able to take some time to answer a few questions specific to her diagnosis, treatment, and cryoablation experience. You may find more information about Jan, connect with her, and read her blog on her website at https://jansmeso.blogspot.com/.

When were you first diagnosed with mesothelioma?

I was first diagnosed on August 26^th, 2004.

What were your symptoms leading up to the diagnosis?

My symptoms first started with an aching back that persisted for approximately 3 months in 1998. I had no other symptoms until 1999 when I had an attack with a feeling that my chest was caving in and I couldn’t breathe. In October 2000 the symptoms started occurring more frequently. I was unable to breathe as I felt my lung was stuck to a rib. This started happening every 3 months, and although they lasted just a few days first, the attacks eventually got longer.

In April 2002, my symptoms started with terrible pain. I was admitted to the hospital but they couldn’t determine what was causing the pain. My blood pressure was good, my heart rate was normal, but my oxygen saturation, SP02 levels, were a little low.

What treatment options were available to you?

I had a video assisted-thoracoscopy (VAT) procedure done to find out what was going on. Being 44 at the time no one considered mesothelioma. My surgeon removed two large tumours hanging from my lung and some 20 to 30 small tumours from the lining. Unfortunately, he couldn’t remove the thickening at the bottom of my lung. I had radiotherapy on the drain sites. Due to the fact that chemotherapy wasn’t available in August of that year, in December 2004 I was offered to participate in a clinical trial where I would receive Alimta, as it was coming to the end of its Phase 3 trial. I didn’t think about it, I just grabbed the opportunity, but I didn’t realize how bad the stuff was or that I could have waited before starting the treatment. Back then mesothelioma was still rare, usually only affecting elderly men.

How did you make your decision about which treatment to select?

I didn’t have a choice back then. I remember feeling like a headless chicken and I was given less than a year to live.

When and how did you first hear about cryoablation?

When I tried chemotherapy in 2007 and it didn’t work I knew I needed to do something. I researched the internet and found that Dr. Fereidoun Abtin at UCLA Medical Center in Los Angeles, California was using a technique to remove tumours up to 5 cm. I decided to email him knowing that mine were over 2 cm and some were under the 5 cm. Even then I wasn’t exactly sure how mesothelioma represented itself. I knew it clumped together at the bottom of the lung but I thought it produced single tumours.

Can you describe your experience with cryoablation?

I was told cryoablation wasn’t a cure, it had been researched for patients who had recurrences after surgery. It could be used on some singular tumours, removing them as well as giving pain relief to the patient. I suffered terrible pain just above my kidney caused by a large tumour, the relief after cryoablation was instant.

Although, I would have preferred not to be awake throughout the procedure, I needed to be mildly sedated just so they could have me breathe on instruction.

I returned four months later to have another tumour removed which had breached the lining and could possibly come through the chest wall. This time they put me to sleep.

After having a pleurectomy/decortication in 2009, my last experience with cryoablation was in 2011. I had four tumours cryo-ablated which I did for debulking and pain relief. I believe that the cryoablation actually slows down the mesothelioma in other areas where the cancer has been frozen.

I wish cryoablation was available in the UK because I believe it has a part to play in the welfare of the patient.

How has your life been since diagnosis?

When you are diagnosed at first you believe those words they say, you will die within 12 months. I didn’t want to believe those words and put them at the back of my mind. After the first round of chemotherapy we did a lot of travelling, just in case I didn’t get the chance again. But to be honest I tend to believe I will still be around and I put off doing things that I want to do, as I believe there will be another day.

Like anyone without a terminal cancer, I have days when I wish I could be a couch potato. I do get down now and again and wish I could have a normal day. I suffer with a lot of pain, yet I know many people who have none, and I must admit I get jealous. Pain can wear you down.

I have also been lucky because I can escape to my job and keep my mind occupied although I do think it is harder on our partners. They watch us suffer through the treatments and they pick us up and put us back together. I know my husband worries constantly, even if I breathe oddly, he is on alert.

What advice do you have to give to other mesothelioma patients?

Don’t let this disease take over your life, find something to keep your mind occupied if you are unable to continue with your job. I have always enjoyed reading and writing so last year I finally completed a book and have just self-published my first fiction novel “The DreamWeaver’s Choice”, and this year I have completed the draft of my second. Don’t push yourself on physical activity but find one that keeps your mind focused, something you can lose yourself in.

The monthly check ups bring us back to earth but I try not to let them. I found when I was in remission I was always worried it would come back. When I was out of remission I was fighting to stay alive and hoping the CT scan would show it was stable. This was worse after surgery, especially when I knew I could feel the cancer growing and I was waiting for it to become evident on the CT Scans. I wasted a whole year worrying.

I have found my general physician to be my bouncing board, oncologists are still learning about mesothelioma and as a patient you need to help them understand it. No one has the same symptoms so don’t let your doctors treat you like another patient, have them treat you as an individual case. One thing I have learned over the last 9 years is each one of us presents different pain, different symptoms and different reactions. Not everyone is breathless nor does everyone suffer from pain.

Learn about your cancer and embrace it, that way you can learn to deal with it. Research is important as well as having a good medical team behind you. I feel it is important to know what treatments are available and when you need to consider doing something. Like last year I knew my mesothelioma was growing, thankfully at a slow speed, so I made the decision to spend the summer with my husband and hold back treatment until late September.

Writing down your worries helps clear the mind, start a blog if you can, this helps get it off your chest together with helping others who are starting on the journey.

Most of all remember this is your life so try and live normally, whatever normally is.

If interested in learning more about cryoablation and the Comprehensive Mesothelioma Program at UCLA visit https://bit.ly/12G06gm, or if you have any questions regarding mesothelioma, please feel free to contact me by email at scline@phlbi.org or by telephone at 310-474-8823.

March 2013

Mesothelioma Applied Research Foundation 2013 Symposium-

From March 7-8, 2013 I had the pleasure of attending the Mesothelioma Applied Research Foundation Symposium held in Las Vegas, NV. This was my first mesothelioma symposium as the registered nurse and medical liaison, for the Pacific Meso Center at Pacific Heart, Lung & Blood Institute. The Meso Foundation’s Symposium was attended by a variety of people including patients, caregivers, scientists, physicians, and nurses.

It was so inspiring to see all the people who showed up to support the Meso Foundation for all of its wonderful accomplishments as well as the physicians and scientists who work to advance research to fight and one day cure this awful disease. The information presented was clear and easy for everyone in the diverse audience to understand. Some of the many topics that were discussed by the expert panelists included: focus on genetics, the multidisciplinary approach, clinical trials, and the importance of finding the right treatment center with the most experienced medical team. Overall, they compiled an excellent group of speakers.

I was able to meet with many patients and discuss their stories and treatment options. My favorite part of the symposium was the topic on “Conversations with Community Members”. Patients, caregivers, and others directly affected by mesothelioma were on stage discussing the emotional and physical hardships they have to endure while facing this deadly disease. This was a very powerful and eye-opening segment.

This symposium has left me with hope for the future surrounding research, finding better treatments, and eventually a cure. This symposium has left me with an even greater desire to advocate for mesothelioma patients and to continue to educate people on this rare but serious disease.