GUEST BLOG: A Mother’s Day Letter from Sarah Lackner

Sarah Lackner and motherby Sarah Lackner

May 10th, 2014 will mark the three year anniversary since my mom passed away from mesothelioma. She was 57 years old. This year, her anniversary is the day before Mother’s Day, which, for those of you who knew her, is perfectly fitting.

I was 21 when my mom was diagnosed with meso and 23 when she passed away. Tragically, my mom’s diagnosis was not the first time I heard the word mesothelioma, and her passing was not the last time our family would suffer a loss from it. Sixteen months after my mom passed away, her sister, my Aunt Linda, lost her own battle with the disease.

Mesothelioma has been woven into my family’s story for over 30 years. As a child I didn’t comprehend the harshness of this cancer, I just knew it was something Uncle Jimmy, my mom’s brother, had passed away from when I was a baby. I knew asbestos was why I never met my grandparents. While meso will always be part of my family history, I am determined to make being part of a cure, my legacy. That is why I’ve joined the Mesothelioma Applied Research Foundation’s newly formed Rising Leaders Council. The council will help the Foundation obtain resources needed to continue its quest to eradicate this disease. Each council member will be asked to either individually donate or fundraise for a specific amount. Whether you’re fighting meso yourself or fighting to honor a loved one, WE, more than anyone, need to stay involved.

With that, I ask that you join with me in committing to support the Foundation by joining the Rising Leaders Council. When you become a Council member you will:

  • Receive an invitation to a quarterly call with other council members and staff to get an insider look to the Meso Foundation’s current projects and goals.
  • Become a Meso Foundation Representative at community events.
  • Receive an invitation to the VIP reception at the 2015 Symposium.
  • Be given special recognition at the 2015 Symposium.
  • Have the ability to honor your loved one or current patient.

You can learn more about the Rising Leaders Council and sign up at curemeso.org. Please take this opportunity to make a difference in the lives of others.

GUEST BLOG: Relaxation Breathing, Stretching, and Initial Exercise Precautions

Relaxationby Carol Michaels

Exercise is good for our physical and emotional health. It is one thing that you can control and do for yourself. It is empowering. Physical activity can decrease depression and anxiety, reduce stress, increase confidence, and build positive health habits. Exercise can improve endurance, increase energy level, and decrease the fatigue that may be caused by treatments.

Relaxation Breathing and Stretching
There is an emotional toll that cancer survivors face in addition to the physical one. A cancer diagnosis can cause depression, anger, anxiety, fear and stress. Proper breathing techniques and stretching can improve the psychological recovery.

Research has shown that breathing can help reduce stress and anxiety. When feeling stressed, we usually take shallow breaths. During these exercises we will use our full lung capacity and breathe slowly and deeply. You should be aware of your breathing as it has a calming effect. Inhale for 5 seconds and fill the torso up with air, then exhale from the lower abdomen for 5 seconds, pressing the navel in towards the spine. Imagine all of your tension and stress leaving your body with each exhalation.

You should begin relaxation breathing immediately after surgery, as it allows you to focus all of your energy on healing. The stretching program will restore mobility in the chest and back that allows for freer movement of the lungs and diaphragm. We will discuss stretching in a future article.

Cancer surgery and treatments affect many areas of the body. I hear numerous complaints of stiffness, pulling, tightness, and a lack of flexibility. Often this occurs when the muscles and skin are shortened because of the surgery, which can also leave scar tissue. Surgery can irritate the nerves. As a result, you may feel burning, tingling, or numbness.

When can you start an exercise program after having cancer surgery and treatments? You should start stretching exercises as soon as you get clearance from your doctor. It is important to talk to your doctor before starting to exercise. This way you can determine what program is right for you.

Initial Exercise Precautions:

  1. Your immune system may be compromised, which places you at risk for infection. Gyms carry a high risk for infection. Exercise at home while your immune system is weak.
  2. If you have poor balance, you may want to start with exercises that are safer for those who have balance problems. Poor balance may be due to the chemotherapy, weak muscles, neurological issues, or normal aging. A common side effect of chemotherapy is peripheral neuropathy, which changes the sensation in the legs or arms. It can last a short time or be long-lasting. This can affect the way you walk, your balance, and your general movement. If you have peripheral neuropathy, you should select activities that decrease your risk of falling. For example, we recommend avoiding uneven surfaces and exercising with a stationary bike instead of a treadmill without handles. Strengthening your core will help your balance. It is also a good idea to keep all the muscles strong to compensate for the ones that are affected by the neuropathy.
  3. Be smart and safe by doing the exercises that are right for you at this particular time. You are exercising to get healthy, not to get hurt. This is an important point to keep in mind, particularly for those who were physically active before cancer. You will not be able to immediately resume the same level of pre-cancer activity.
  4. Exercise in a temperature controlled environment. Cold temperature can crack your skin, while extreme heat can cause swelling or light-headedness.
  5. At the start of your exercise program, you should warm up with deep breathing techniques and shoulder rolls. We recommend that you warm up before you stretch by walking, marching in place or using a stationary bike. You can also exercise after a warm shower, which may relax the muscles.
  6. Never hold your breath during an activity. People often hold their breath during exercise, so remember to breathe deeply.
  7. Drink plenty of water, especially when sweating.
  8. If your blood count or the mineral levels (potassium and sodium) are low, check with your health professional before resuming exercise.
  9. Some medications affect the heart rate, so your pulse rate is not a good indicator of the level of your exercise exertion.
  10. Learn to move slowly and smoothly without jerky movements. Do not continue an activity if it causes pain or unusual fatigue. You should feel a gentle stretch, not pain.
  11. Know your limits. You should be able to differentiate between discomfort and unusual pain. Stop if you feel pain.  Listen to your body and use common sense. If something does not feel right, do not do it. You should consult with your doctor if you are experiencing pain, swelling, or unusual fatigue.
  12. Wear comfortable and loose clothing and appropriate footwear. For those with peripheral neuropathy affecting the feet, supportive footwear is particularly important.

Exercise Progression
Many variables determine the exercises that are effective and safe for your particular situation. Every day brings new challenges and new accomplishments for the cancer patient. It is important to be able to modify your exercises to fit your needs at a given time.

Pain and fatigue levels can change from day to day, and even from hour to hour. You may wake up feeling fine, but may have increased fatigue as the day progresses. Track your energy levels throughout the day to determine the best time to schedule your exercise sessions. For example, if you have more energy in the afternoons, you should exercise in the afternoons.

Exercise when your energy levels are high. Common sense and listening to your body are of utmost importance. You should not feel like you have to follow a set protocol or a strict schedule. Your routine must be customized due to the numerous physical and psychological side effects you may be experiencing.

Both healing times and pain tolerance can differ greatly from one person to the next. Speed of recovery depends on your pre-surgery fitness level and type of surgery and treatments. The progression and timing of a cancer exercise program can only be determined after a thorough discussion between the patient and her or his healthcare professional.


Carol Michaels FitnessCarol Michaels is a cancer exercise specialist and creator of the Recovery Fitness cancer exercise program. Recovery Fitness is taking place at Morristown Medical Center and several other facilities in New Jersey. Michaels also wrote “Exercise for Cancer Survivors,” a resource for cancer patients going through surgery and treatment.

GUEST BLOG: First Steps to Starting an Exercise Program

Joggingby Carol Michaels

Exercise may be the furthest thing from your mind after a cancer diagnosis. Even if you have never been active, exercise can become one of your favorite activities. Ask your doctor before you start to exercise because each person is unique and heals differently. With more medical professionals recommending exercise to their patients, it is imperative for cancer survivors to learn how to exercise safely. A good exercise program will help to reduce the side effects of surgery and treatments. These side effects can include fatigue, neuropathy, decreased range of motion, weakness, lymphedema, and a significant emotional toll. Once you start to exercise and have less pain, stiffness and more energy, you will be motivated to continue.

Exercise may reduce the chance of recurrence, and it is therefore more important than ever to add exercise to your recovery plan. For those who have been active prior to their diagnosis, this is great news. A good exercise program will help you to get back to the activities that you enjoy. For the cancer survivors who have been inactive, it is never too late to start an exercise program. Work with an experienced cancer exercise specialist in your area or purchase cancer exercise books and DVD’s. This will give you the tools that you need to get started in an exercise program that is part of a healthy lifestyle.

Before You Begin
You will need to speak to your health professional before beginning an exercise program. Your particular surgery, treatments, fitness level and healing speed will guide the progression of the exercises. Your health and recovery process is always changing and it will be important to regularly monitor your blood count, muscle and joint pain, nausea, and fatigue. You may also have lingering impairments or health concerns that need to be evaluated by a physical therapist or lymphedema therapist.

You should meet with your oncologist to review the exact nature of your treatments so that you will understand the potential side effects of your treatments. This way you will be able to understand your exercise plan in relation to your unique situation. Some medications affect balance, and cardiac function, or increase the risk of dehydration. It is crucial that you understand the health issues you may encounter as a consequence of your surgery or treatment. This will include learning which muscles are affected, which lymph nodes are removed, and the cardiac and pulmonary effects of radiation and chemotherapy.

Exercise Goals
Goals should be specific and realistic. You may want to lose weight and increase your muscle mass. If flexibility is an issue, your goal may be to improve your range of motion. Other goals might be to become stronger, have a good quality of life, better mood, or to decrease the chance of recurrence.

It is helpful to have both short term and long term exercise goals. Goals should be able to be adapted to changes in work, health, and family situations. If you are new to exercise, select an activity and set an achievable goal.  Slowly add exercise to your daily activities and find something that works with your lifestyle.

Remember: Think positive and have fun!

Exercising During Chemotherapy and Radiation
It seems counterintuitive, but exercise during treatment is shown to be helpful. Physical activity during treatment can reduce common side effects such as fatigue, pain, nausea, depression or anxiety. If you are suffering from pain and nausea you should have those issues under control before beginning. Your doctor will be able to tell you how often you should exercise and how intense your program should be.

Each treatment is unique and has potentially debilitating side effects of which you should be aware.

Systemic treatments such as chemotherapy and hormonal therapy as well as targeted, biological and immunotherapies may impact your balance, cardiac function, and gastro-intestinal tract. Furthermore, they may lead to neuropathy or numbness in your extremities. Radiation can cause fatigue and increases the risk of lymphedema. It can also cause swelling and burning of the skin.

First Steps
Try to start moving as soon as possible after surgery, even if it is only walking indoors. This will help you to regain strength. If you had been inactive prior to surgery, start with short walks and increase the distance walked each time. You can also increase the frequency of the walks as you slowly increase the distance. Try to find a walking buddy and walk often. Build up strength slowly and make sure never to over do it. Just 15 minutes a day can improve your energy level and mood.

Incorporate aerobic activity into your fitness plan. Find the aerobic activity – one that increases your heart and breathing rate – that you enjoy and try to do it daily. Aerobic activity is an important component of a fitness plan and includes activities like walking, hiking, and dancing.


Carol Michaels FitnessCarol Michaels is a cancer exercise specialist and creator of the Recovery Fitness cancer exercise program. Recovery Fitness is taking place at Morristown Medical Center and several other facilities in New Jersey. Michaels also wrote “Exercise for Cancer Survivors,” a resource for cancer patients going through surgery and treatment.

New Therapeutic Approaches for Malignant Mesothelioma Using Immunotherapy to Target WT1

Immunotherapy targeting WT1 may help patients with malignant mesothelioma.by Tao Dao, Lee M. Krug and David A. Scheinberg, Memorial Sloan Kettering Cancer Center, New York, NY

Wilms’ tumor  1 (WT1) is a protein that is present at high levels in many types of cancers (especially mesothelioma), but it is generally not found in normal cells. Therefore, we think that it is a potential target for novel therapies, and particularly immunotherapies. WT1 is typically found inside the cell, in the nucleus. Only after it is processed and moved to the surface of the cancer is it possible for the immune system to see it. We think that if we could teach the immune system to attack WT1, we could find an effective way to specifically kill mesothelioma cancer cells.

At Memorial Sloan Kettering Cancer Center, we are studying two ways to boost the immune response against WT1. The first is with a vaccine. Normally, the WT1 protein does not cause an immune response to occur. However, we found that small pieces of WT1 proteins that are just slightly different from normal WT1 protein can stimulate the immune system better. If we can teach the patient’s immune system to target WT1 using a vaccine made up of these protein pieces, then perhaps it will also learn to attack the cancer cells. In fact, when we gave the WT1 vaccine to patients along with some immune booster medicines, they developed an excellent immune response specifically to WT1. We are now studying this vaccine in a larger clinical trial to see if it is effective against the cancer. Patients who have undergone surgery for mesothelioma either get the immune boosters alone or together with the WT1 vaccine to see if it can prolong the time before the mesothelioma grows back.

We are now also studying another way to attack WT1 using antibodies. Antibodies are proteins in the body that stick to foreign substances (such as bacteria or viruses) and tag them for destruction by the immune system. In this case, however, we have engineered antibodies in a laboratory so they will recognize WT1. Thus, instead of the vaccine strategy which relies on teaching the patient’s immune system to attack WT1, these antibodies can be injected and bind directly to it. We have demonstrated that this antibody is a potent therapeutic agent against human mesothelioma in animal models. Our study was published in the Science Translational Medicine in March, 2013. (http://stm.sciencemag.org/content/5/176/176ra33.long). We are working to bring this promising new drug to clinical application in the very near future.

Acknowledgement

We greatly appreciate the grant support from the Mesothelioma Applied Research Foundation for our exciting research targeting WT1 by both vaccines and antibody therapies (TD and LMK are recipients of Meso Foundation grants).

GUEST BLOG: Krisha Deaver and Why She Needs the Symposium

Krisha and Cam Deaverby Krisha Deaver

I’ll be honest: I wasn’t sure I wanted to go to the Symposium last year. I knew I needed to go, but that’s not the same thing.

I needed to go because information is power when fighting an elusive enemy like mesothelioma.

I needed to go because fighting cancer is lonely, and I wanted to meet people who understood.

I needed to go because my husband, Cam, is everything to me—and I’ll do whatever it takes to help him beat this disease.

But all the same, I wasn’t exactly looking forward to it. In hindsight, I can recognize my hesitation for what it was: fear.

I was afraid it would be sad. I was particularly worried about a session that recognized those who had passed away during the year. I couldn’t face that — I was terrified of losing Cam. So guess what I did? I gave myself permission not to attend that session. And that was a fine approach because it was what I needed to do at the time.

I was afraid that the Symposium would be too much for me emotionally — three full days of staring into the face of meso. That fear seems laughable now. After all, hadn’t I been consumed for months doing exactly that? Through research, doctor visits, tests, and surgery, I’d been relentlessly staring down the beast.

Rather than being overwhelming, the Symposium was a tremendous relief. Admittedly, there was a lot of information and new faces and ideas to take in, but I ultimately found myself surrounded by people equally passionate about finding answers to this disease.

It was a relief to hear researchers present their findings. Even if I didn’t follow all the science, I understood enough, and I was grateful that the researchers could see my pleading eyes in the audience. I’m glad that I sat next to my husband, squeezing his hand, and helped to put a face to the need for more research.

It was a relief to attend the session for caregivers and hear from a panel that helped me feel connected. It was a relief to ask my toughest questions to that group and gain their wisdom and support.

It was a relief to approach a brilliant researcher after her presentation and ask a follow-up question specific to Cam’s recovery. I was able to pick the brains of every other doctor I could catch.

It was a relief to hear from dedicated and passionate fundraisers and learn how I can help contribute to the effort to find a cure.

As the Symposium was winding down, it was a wonderful relief to attend the closing celebration. At this annual dinner, I listened to Cam optimistically talk about his journey and perspective, and it was one of the proudest moments of my life.

In the year since the Symposium, when I feel fear creeping in, one of the things that keeps me grounded is remembering the network of support I built by attending. Even though Cam and I were part of the Meso Foundation’s online community prior to the Symposium, nothing can compare to actually meeting others who “get it.”

At this year’s Symposium, I can’t wait for a fresh infusion of information, friends, and hope. Fear doesn’t stand a chance.