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Your message to us will be held in strict confidence. All requests for information by mesothelioma patients and their family members will be answered within 24 hours. Mesothelioma Treatment and Care Guides are sent to mesothelioma patients and families by overnight delivery.

New FDA Drug Approved

We all know how important clinical trials are. The FDA has approved Yescarta (axicabtagene ciloleucel) Although this is not directly affecting Mesothelioma yet, we believe there is hope. Yescarta is the newest treatment for adult patients with certain types of large B- cell lymphomas whose first line treatments have failed, or relapsed. This is the second gene therapy approved by the FDA. This approval came after a multicenter clinical trial of more than 100 adults who had relapsed or did not respond to initial treatment for large B cell lymphoma.

Yescarta is an immunotherapy that engineers a patient’s T cells to target the protein that expresses cancerous B cells. Once it targets the cancerous cell the objective is to eliminate them. This approval is based on a clinical trial phase 2 ZUMA-1 in which 101 patients participated who had been diagnosed with non-Hodgkin’s lymphoma. A large number, roughly 82% of the patients responded to this treatment. Most encouraging is that 54% of their tumors disappeared completely after treatment. Roughly 30,000 people are diagnosed each year in the United States. Three out of five patients have lymphoma B cell type. Often patients do not respond to treatment or relapse shortly after transplant.

The FDA commissioner stated,” Today marks another milestone in the development of a whole new scientific paradigm for the treatment of serious diseases.” Many years ago, gene therapy was a hope and today it is now a promising concept to treating deadly cancers. In 12 months, the expectation is that there will be 70-90 centers offering this treatment.

The cost of the drug is very expensive, $373,000 per patient. Although pricey, this has offered patients who have not responded to therapy or had a relapse and believed they were out of options, one more hope.

Every drug that is on the market for care of patients once was in a clinical trial. Many patients become involved with clinical trials because they have no more options. Clinical trials offer the chance to try medications that are not available to the public. Also, some patients have a desire to help future cancer patients. Whatever the reason you choose to become involved- patients receive the highest standard of care. Today we thank the patients who have become involved with clinical trials. As Winston Churchill stated , “Success is not final, failure is not fatal, it is the courage to continue that counts.”

– Lisa

Asking the Mesothelioma Patient: What do You Want to Do?

One of the leading physicians in treating patients with mesothelioma always includes in his first interactions with patients a simple important question to his patients. “What do you want to do?’ It is a non-judgmental question acknowledging the patient has his own thoughts, feelings, and that most importantly the patient oversees what if any treatment choices he makes. This might seem like something that is assumed, a patient seeks out an expert in the field of mesothelioma, he may have traveled a great distance, has a support system that is urging him to do everything he can to stay alive, but he is not sure that the treatment plan is something he wants to go through.

The other day at a conference with two patients and their families that have been recently diagnosed with malignant pleural mesothelioma, two questions came to mind. What do you want to do? What is important to you? Two patients, two spouses, supportive adult children, a roomful of people, including social workers, medical experts, chaplaincy, all talked except the two patients. At the conference, it is a lot of information to absorb, a lot of statistics and different possible scenarios that could happen to the patient. Well-intentioned family members asked lots of questions. All of them were trying their best to find a path for their loved one’s journey with mesothelioma. The two patients sat silent no questions, no visible reactions.

These two patients and their families were just starting on their journey with mesothelioma. The treatment options that are recommended to them are specific to them. Hopefully both will have a long journey with mesothelioma, with a great quality of life during the remainder of their lives. If things do not go well, their families and the team taking care of them will know that the patient was asked two important questions before proceeding with their treatments. “What do you want to do?” “What is important to you?”

The bottom line is that this journey is yours, the patient with mesothelioma. You must make the decisions on how you want, and how you choose, to live your life.

– Ellie

Hope for Mesothelioma Patients: Looking forward to 2017

As we approach the end of 2016 and the beginning of 2017, the mesothelioma community has reason to be optimistic as progress is being made towards a cure. Some of the progress made in the battle against mesothelioma in 2016 continues into 2017. As we highlight a few of the accomplishments, we are reminded that none of these could be accomplished without the mesothelioma community working together to advocate for, support and educate the victims of this asbestos related disease. Participation in clinical trials is vital to advance treatment for patients with mesothelioma now and for all future victims of mesothelioma.

Mesothelioma experts have known that every mesothelioma tumor is as different as every person’s fingerprint. Women, particularly aged less than 50, have also been noted to have longer survival with mesothelioma.

Mesothelioma is a complex disease with many genetic mutations. In February of 2016, Dr. Raphael Bueno, published ground breaking research about the gene- sequencing of over 200 mesothelioma tumors. In collaboration with scientists from Genetech, they identified over 2,500 alterations and identified 10 significantly mutated genes in the mesothelioma tumors.

With this research scientists, can now design studies to examine the effects of different medications on more specific pathways – a personalized approach.

Another research study has identified mutations in the TP53 gene implicated in many types of cancer but up to this point not for mesothelioma. The researchers discovered that it was found in 2x as many women with mesothelioma then men. The estimated 5-year survival rate for women diagnosed with mesothelioma is around 22%, for men 9%. One more building block for tailored care for mesothelioma.

These are just a few examples of the progress that continues to be made and advanced for treatment options for mesothelioma patients.

There is no single magic pill that will cure mesothelioma. Progress is being made and must continue with more involvement in clinical trials at the mesothelioma centers of excellence.

Looking forward to more progress and involvement in 2017!

We wish a Happy, Healthy, and Safe New Year!

– Ellie and Lisa

Acupuncture Therapy for Mesothelioma

When trying to deal with a diagnosis of mesothelioma patients often combine therapies. In addition to standard therapy, chemotherapy, surgery and radiation, patients often find relief in Complimentary Alternative Therapies –CAM, used together it is called Integrative Therapy. There are many different therapies under this group, one being acupuncture.

According to acupressure is defined as, “the application of stimulation such as needling, moxibustion, cupping and acupressure on specific sites of the body known as acupuncture sites.”

Acupuncture is a form of ancient Chinese medicine, which uses fine needles to specific areas of the body or acupoints to stimulate energy flow. This energy is known as chi. The needles are often left in the body for approximately 30 minutes. Usually this causes virtually no pain. It is not known exactly how acupuncture works but it thought to be effective by stimulating healthy energy flow, regaining balance. Acupuncture has been practiced in the United States for a very long time. However the United States Food and Drug Administration first approved acupuncture needles as a medical device in 1996.

Research has indicated that acupuncture is most effective in cancer patients in treating the nausea and vomiting associated with chemotherapy, and is also helpful for pain management, fatigue, control of hot-flashes, neuropathy, anxiety, depression and sleep disturbances. In recent years many major medical centers have formed departments of Integrative Therapies and acceptance of these therapies has increased.

To become a licensed acupuncturist in the United States there are approximately 50 schools whose course of study is acupuncture and oriental medicine. It takes from 3-4 years to complete. Every state has its own licensing requirements and some require that the acupuncturist practice under a medical doctor.

If acupuncture is something that you want to learn more about information is available on   Remember to do your due diligence in researching any practitioner and also ask your mesothelioma care team for any recommendations.

– Ellie

Blood Clots and Mesothelioma

One of the presenting symptoms for mesothelioma can be shortness of breath. Just as mesothelioma is difficult to diagnose because of the many vague symptoms, so are blood clots. Shortness of breath is the common presenting symptom for many conditions – one of them can be blood clots. A blood clot is a gel like mass formed by platelets and fibrin in the blood to stop bleeding. At times patients who have mesothelioma develop blood clots. This can be very harmful because blood flow is interrupted or decreased to its path. Some of the risk factors for blood clots are: atrial fibrillation, prolonged immobility, smoking, birth control pills, and any type of surgery, and clotting disorders.

Symptoms of blood clots in the leg also known as DVT (deep vein thrombosis), can cause pain, redness and swelling. Blood clots in the lung are much more serious and symptoms can include chest pain, shortness of breath and fast breathing. Serious complications can arise if you have a blood clot and it is recommended that you get medical care immediately. A thrombus is the medical terminology for clot. Many times a thrombus forms as the natural way to repair a process that has occurred. Blood clots form when the lining of the blood vessel has been damaged either to an artery or vein. The blood can become stagnant and form small clots which can occlude or block the vein from blood flow from returning to the heart.

A pulmonary embolus is a dvt that has broken off and flows toward the heart and becomes lodged in the pulmonary artery. This inhibits the lung from functioning and can cause serious illness or death. An embolus is the medical term for a blood clot that has moved within the bloodstream to a different location. A couple of things happen to the lung if this happens, the lung becomes compromised because of lack of blood flow and the blood supply is compromised therefore the lung cannot provide oxygen to the body.

The treatment for blood clots whether it be a DVT or pulmonary embolus is to stop the clot from getting bigger and keep new clots from forming. Blood thinners or anticoagulants are used to decrease the formation of clots and help blood clots from getting larger and prevent clots from forming. If you have a DVT, treatment with blood thinners is usually prescribed for 3 to 6 months. If you have had clots previously, the treatment may be longer. The most common side effect of blood thinners is bleeding. Depending on the anticoagulation medication you are prescribed, you may have blood drawn so your physician can titrate the dose of the blood thinner to your needs. If the clot is a pulmonary embolus it can be life threatening. The treatment can be a medicine call thrombolytic. This is a drug that can quickly dissolve a clot. It is used to treat large clots that cause severe symptoms. These thrombolytic are only used during life threatening situations. Another solution is that a filter can be inserted inside a large vein called the inferior vena cava. The filter catches the clots before they can travel to the lung but will not stop the formation of clots.

In caring for mesothelioma patients we often are dealing with clots. They are always a concern. Even with preventative care some patients are still susceptible. When clots are suspected an immediate ultrasound is ordered. Post-surgery, many professionals are anxious to get the patient up and walking for many reasons. One of the reasons is that moving can help prevent clots. So the next time your healthcare provider suggests you get moving remember it could save your life. It is important to also recognize that if you suddenly become short of breath, don’t ignore it- seek medical attention.

– Lisa

How Skilled Nursing Facilities and “Rehab” Facilities Can Help Mesothelioma Patients

When someone is diagnosed with mesothelioma or any cancer they are often searching for a plan, a road map, a guide. Medically this can include chemotherapy, surgery, radiation, clinical trials. This can also involve hospitalizations, outpatient treatments, series of hospital appointments. radiation therapy. With some patients this can also involve a stay in a rehab facility after surgery or a hospitalization.   This can be a surprise to some patients .

Recently we visited two patients at rehab facilities. One was a gentleman in his 70’s that was discharged to rehab after his surgery. There are many reasons that someone might go to rehab. One of the common reasons is lack of conditioning. After being in the hospital for even a short period of time you can lose muscle mass and strength.   The second patient was a female; she was at rehab to slowly wean off the vent. Progress has been slow, but she is progressing. Both of these patients were sent to rehab facilities to improve their strength, with the goal of returning to their previous level of functioning. At this particular rehab facility, a sign greets all, “Find Your Strength.”

In the United states there are 15,401 nursing facilities according to statistics from the government for the year 2014. This includes all different levels of care. Nursing homes, day programs, chronic care programs, care for patients with chronic illnesses.   Some of the patients will never reach the level of independent living. The nursing facilities are in all sizes and shapes and specialize in different issues.

After treatment for mesothelioma the type of facility that patients are most often transferred to are skilled nursing facilities. A definition from Segens Medical Dictionary: ” is an inpatient health care facility with the staff and the equipment to provide skilled care, rehabilitation and other health services to patients who need nursing care but do not require hospitalization.”   Another definition from Mosby’s Medical Dictionary is: ” a type of nursing home – recognized by the Medicare and Medicaid systems as meeting long term health care needs for individuals who have the potential to function independently after a limited period of care. A multidisciplinary team guides health care and rehabilitative services, including nursing care.”

Like specialized centers for mesothelioma, rehab facilities after surgery or treatments for mesothelioma are specialized. If along your journey with mesothelioma it is recommended that you or your loved one go to a skilled nursing facility- SNF- or rehab facility, remember the goal is to return you to your previous level of functioning. It might be a surprise not to go home after a hospitalization. Remember your journey with living with mesothelioma is a marathon not a sprint.


New Developments in Chemo Administration for Mesothelioma

When mesothelioma progresses there can be pain and that can decrease quality of life. Recently we wrote about a Clinical Trial at the Moffitt Center designed to deliver chemotherapy locally to patients to help alleviate pain and improve quality of life. This therapy is called trans arterial chemo perfusion. This therapy is being examined for administering of a small amount of chemotherapy via an arterial catheter.

The procedure involves inserting a small catheter usually in the groin and threading it up to the area of the tumor. At that point specific blood vessels that allow the tumor to flourish are identified and chemotherapy is applied locally to the area. It is theorized that local application of the chemotherapy will help to avoid systemic side effects caused from chemotherapy. By applying the chemotherapy locally to the mesothelioma tumor, it is hoped the tumor will shrink and alleviate some of the pain and symptoms of mesothelioma. Some of the symptoms that it hopes to improve are shortness of breath and pain, thus improving the quality of life for mesothelioma patients.

It is confusing to realize how many different ways that chemotherapy can be administered. Chemotherapy is commonly given by mouth, or by catheter that has been placed into a vein. Another procedure that is currently being used for other cancers is called trans arterial chemo embolization or TACE. A doctor, most commonly a trained Interventional Radiologist, inserts a catheter into usually a large blood vessel in the patient’s groin and feeds it up through the arterial system. This procedure involves first installing the chemo through the catheter and then inserting tiny beads toward the tumor that then block the blood supply and nutrients. Another way of administering chemotherapy is during surgery for certain conditions. Chemotherapy is heated and washes the area after removal of all the tumor that is visible to the surgeon’s eye. Intra op heated chemotherapy has been administered for peritoneal mesothelioma and for pleural mesothelioma and other cancers.

The Moffitt Trial is the first one with this therapy being conducted in the United States for pleural mesothelioma. A previous clinical trial of patients with pleural mesothelioma and chemo perfusion has taken place in Germany – published in the Journal of Radiology in February of 2013, Non Selective Trans arterial Chemo perfusion: A Palliative Treatment for Malignant Pleural Mesothelioma, by TJ Vogl et al. The purpose of this clinical trial was to evaluate tumor response and alleviation of patient’s symptoms after treatment. The conclusion of this trial was that chemo perfusion has the potential to yield positive results for the treatment of recurrent and or unrespectable pleural mesothelioma.

Become informed about the treatment options that might be available for you or your loved one. Clinical Trials often offer an option that is not yet available.

– Ellie

Peritoneal Mesothelioma & Quincy Jones

mesotheliomaOn the Ellen DeGeneres show on March 15, 2016 comedian Quincy Jones appeared and told his story of being diagnosed with peritoneal mesothelioma in August of 2015. He is a young comedian, 32, with a very positive outlook on a deadly cancer that has affected his life. Last year he was suffering from abdominal pain and distension that eventually took him to his local emergency room. For 6 months he had been in and out of hospitals with the same complaints. He was told that he had ascites- fluid in his abdomen-and that it should be tapped. Since he had no insurance, he was told to go to another hospital that could provide this treatment. He has spent 6 months a couple of times a week getting his abdomen drained, 4-7 liters at a time. This procedure is designed to keep him comfortable. A biopsy was performed during those 6 months and stage IV peritoneal mesothelioma was the diagnosis. He was also told that most people with his diagnosis only live a year.

Peritoneal mesothelioma is one of four types of malignant mesothelioma. It develops in the peritoneum which is the lining of the abdomen. There are about 500 cases a year of peritoneal mesothelioma in the United States.   Early symptoms of peritoneal mesothelioma include abdominal swelling, pain, diarrhea and constipation.

A thorough detailed history and physical exam should be performed when a patient presents with these symptoms. In almost all cases, other much more common diseases are usually the problem.

Peritoneal mesothelioma is difficult to diagnose and treat. When diagnosed it is advised that you go to a mesothelioma center that has an expert in peritoneal mesothelioma. Once diagnosed, and staged, there are treatment options that might be appropriate to your case. The options include chemotherapy, radiation and surgery. A promising option is intra op heated chemo, (HIPEC) and surgery. The goal of surgery is to remove all the tumor visible to the naked eye. It is assumed that there are microscopic cancerous cells still in the area where the tumor cells are removed that is why a heated chemotherapy solution is instilled. The dwelling time for the solution is 60- 90 minutes. The side effects are less than what others experience from traditional chemotherapy. During surgery abdominal catheters are placed so that chemotherapy can be infused after surgery. There is no known cure for mesothelioma. With early aggressive treatment, survival time has increased for some patients. By definition, Stage IV peritoneal mesothelioma means that the cancer has spread throughout the body. Surgery is not an option at this point, as the cancer is more advanced.

Quincy Jones, like most people faced with their mortality, examine what they want to be remembered for. What difference have they made during their life? What will he leave behind?   He decided to focus on what he is passionate about – comedy.

He decided he would like to tape a one hour comedy show and have it aired on HBO or Netflix. Having shared his idea with friends, they started a Kickstarter page to raise the money necessary to make his dream a reality.

During the appearance on the Ellen DeGeneres show on March 15, 2016 he told his story, explained his positive outlook, and what his dream was. He also said he is undergoing chemotherapy every three weeks and is nauseous at times. Ellen praised him for his humor, courage and his amazing attitude. Quincy also stated that he was given the diagnosis and the prognosis on August 6, 2015. Six months have gone by, and he “doesn’t think it is going to happen,” referring to dying. He was presented with a check for ten thousand dollars from Shutterfly.

On March 21st 2016 he appeared again on the Ellen show. His dreams are going to be realized. On Monday April 4, 2016 at The Teragram Ballroom 1234 West 7th Street Los Angeles California Quincy is going to tape his show. Ellen has also worked with HBO and they will air his show. Once again in conjunction with Shutterfly she presented him with a check for fifteen thousand dollars.

We salute Mr. Quincy Jones and Ellen DeGeneres’ show and his friends for making his dreams a reality.

Mesothelioma does not typically affect a 32 year old rising comedian. He has taken the saying, “laughter is the best medicine,” and made his dreams a reality.

Mesothelioma Patient Empowerment: Charting Your Path

mesotheliomaWhen diagnosed with mesothelioma or any disease, the search for information begins. What should you do? What should you not do? Where should you go? Who do you trust? Are you doing the right thing? There are so many questions and information to be sorted out. All during this process, you and your loved ones are dealing with the emotional turmoil that the diagnosis delivers.

In 2016, most of us will “Google” the topic to get information. Not all the information is right, not all the information is current, and not all applies to you and your case of mesothelioma. Information is designed to empower people. The concept of patients being an active participant in their care is one that historically has not happened in dealing with the health care system. Your parents did not question the doctor if he said that you had a disease, or needed a therapy – that is what happened. We have progressed from the past to where the medical community now is actively seeking patients to be involved in their own care – patient empowerment.

The definition of patient empowerment, from a researchers point of view, is not agreed upon as of yet. A definition from the McGraw-Hill Concise Dictionary of Modern Medicine, “patient empowerment is the providing of information regarding therapeutic options so a patient can actively participate in the decision on whether to undergo a diagnostic or therapeutic procedure, or pursue alternatives.”

Where does a person diagnosed with a rare life threatening disease turn?

Allow others in. Seek out a medical center, where you will be treated by a team of professionals. You are the focus of the team. The team should include a doctor who specializes in mesothelioma, experts in the fields of oncology, radiology, pulmonologists, nurses, social worker, and a chaplain. Have someone with you for your meetings and appointments. Have a spouse, partner, child, or friend that can listen and take notes if possible. Once presented with recommendations by the medical team, ask questions. Remember, you are the expert of your life.

The road on the journey of mesothelioma is not always smooth, simple, or what we planned. Get as much information as you are comfortable with. Engage in as much emotional support as you need. The decisions that you need to make are difficult. Be at peace that these decisions are yours to make. You have weighed your options and made decisions based on your wishes. That is patient engagement in the year 2016. Sometimes the decisions that patients make are not what is expected.

A patient from another state, this past month had a complicated post-op course.   His wife had been at his side the entire time, she had lost weight, was both physically and emotionally exhausted. He had progressed and, although weak, was ready for discharge. It was assumed by the team that they would stay locally for a short while and then return home. The patient, knowing the stress his wife was under, knowing how he felt, and the amount of assistance he still needed, explored his options. He decided to send his wife home, but chose to go to a rehab close to the hospital with his team. He needed the time to focus on regaining his strength. He would not be worried about his wife, driving back and forth. She would go home and visit on weekends, with friends. They would talk frequently on the phone. When we visited him at rehab he was getting stronger, had gained a small amount of weight, was sleeping at night and did not have one complaint regarding the rehab facility. His wife was much better at home. He reported that she was able to rest and now was anxiously awaiting his return home. He was at peace with his decision to go to a local rehab and it had worked the way he wanted. Without his active participation in his care he would have returned home after his surgery. By knowing his situation and asking questions he was able to seek out and make decisions that were right for him .

Like life– things do not always go according to plan!

What’s in the Genes? New Research on Malignant Pleural Mesothelioma

malignant pleural mesotheliomaCutting edge scientific research in mesothelioma is technical, intricate, and can be confusing to most of us. On February 29, 2016, in the journal Nature in the category, Nature Genetics, an article was published entitled: “Comprehensive Genomic Analysis of Malignant Pleural Mesothelioma Identifies Recurrent Mutations, Gene Fusions and Splicing Alterations”. The lead author is Dr. Raphael Bueno.

This research was a collaborative effort involving scientists, physicians, bioinformatics groups, and personnel at the tumor bank at the Brigham and Women’s Hospital. It was supported partly by grants to Dr. Bueno from the National Cancer Institute, the International Mesothelioma Program at Brigham and Women’s Hospital, and Genentech Inc.

The article is written in scientific research form. What the researchers did was analyze tissue from the tumor specimens from 216 cases of malignant pleural mesothelioma, regardless of the type of mesothelioma. Because mesothelioma is a rare cancer, previous studies have been limited by the numbers of tissue samples available. This research had the samples available to study and looked for genetic alterations in the tumors. The article states: “Understanding the genetic alterations that drive MPM [malignant pleural mesothelioma] is critical for successful development of diagnostics, prognostics, and personalized therapeutic modalities.” For example in previous studies, loss of function mutations in gene CDKN2A have been identified in a small number of samples of patients with malignant pleural mesothelioma. The scientific understanding of the mutation of genes in malignant pleural mesothelioma is limited. The article explains: “However, understanding of the mutational landscape of MPM is not yet sufficient to affect classification or treatment strategies.”

Tumors are currently classified as epithelioid, biphasic , and sarcomatoid. This research identified four distinct sub types: sarcomatoid, epithelioid, biphasic-epithelioid (biphasic-E) and biphasic-sarcomatoid (biphasic-S).

The research also identified mutations (changes) in 10 genes and recurrent mutations in several genes. They also recognized changes and alterations in signaling pathways to several genes. This information is vital in furthering research into the treatment and allowing for potentially more treatment options for patients.

What does this all mean to someone diagnosed with malignant pleural mesothelioma today?

Mesothelioma has long been difficult to diagnose and as a result most people do not get diagnosed until the disease is advanced. The diagnosis is difficult to make. Past research has proven that every person’s mesothelioma tumor is as different as every person’s fingerprint.   This research clearly identified four distinct molecular subtypes of malignant pleural mesothelioma and recurrent mutations in several genes expressed in the tumor sample. This is a building block towards taking this research and incorporating it into a clinical test or series of tests to tailor patient care to a pathway that is scientifically proven effective. This is an important step in the progress toward a cure for malignant pleural mesothelioma.

One of the potential ways that this research could impact future treatment of mesothelioma patients is in the development of drugs for specific tumor types and gene mutations.

Scientific research and progress is built on previous research. For this research 100 sources were referenced in the article.

Important research like this takes time, resources, collaboration and dedication of many people. For a patient and their families diagnosed with malignant pleural mesothelioma, this research hopefully will make treatment options more targeted and ultimately more successful.

The full text of the article is located here.

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Your message to us will be held in strict confidence. All requests for information by mesothelioma patients and their family members will be answered within 24 hours. Mesothelioma Treatment and Care Guides are sent to mesothelioma patients and families by overnight delivery.

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