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Mesothelioma Awareness Day

How much does treatment for mesothelioma cost?

Unfortunately, treatment for malignant mesothelioma can be extremely expensive. For example, a pleural mesothelioma patient who needs surgery, chemotherapy, radiation, and follow-up treatment could easily face more than $100,000 in medical bills. Then there are the additional costs of ongoing daily care.

However, patients and their families may be entitled to compensation from asbestos companies to cover the cost of mesothelioma treatment and other expenses. Patients and families should seek legal advice as soon as possible to learn about their options for financial help.

Why is mesothelioma so hard to treat?

Treatment for malignant mesothelioma is complicated by many factors. First, because people may not develop mesothelioma until decades years after they were exposed to asbestos, many patients are older and in poor health by the time they are diagnosed. This leaves them fewer options for treatment.

In addition, because the aggressive cancer is so rare and symptoms are similar to other diseases, doctors may not recognize it right away. This means many cases of malignant mesothelioma are not diagnosed until the cancer has progressed to a stage that is much more difficult to treat.

What progress has been made in Mesothelioma treatments?

Mesothelioma patients are beginning to survive longer as researchers focus on finding effective treatments by turning to immunotherapy and targeting genetic characteristics of the disease. Numerous clinical trials are being conducted in the U.S. and abroad, giving the mesothelioma community hope that a treatment breakthrough is on the horizon.

Some of the more promising new mesothelioma treatments are described below.

Immunotherapy

The U.S. Food and Drug Administration granted accelerated approval to Merck’s Keytruda (pembrolizumab) for treatment of patients with advanced or unresectable melanoma. The immunotherapy drug is now on trial in the U.S. and Europe for mesothelioma patients and has shown promising results in trial participants. One UK participant and six-year mesothelioma survivor, Mavis Nye, has seen over 70% shrinkage of her pleural mesothelioma tumors in a year of treatment with the drug, known as MK-3475 in the UK.

In a U.S. clinical trial researchers reported an overall disease control rate of 76% for mesothelioma patients receiving the drug. These results are “encouraging”, says Dr. Evan W. Alley, MD, PhD, and co-director of the Penn Mesothelioma and Pleural Program at the University of Pennsylvania.

Another immunotherapy drug, GL-ONC1, in clinical trial in the U.S. with mesothelioma patients (as well as other types of cancers), demonstrated good safety and effectiveness against tumors. The researchers concluded that GL-ONC1 has the potential to effectively treat a range of cancers, including mesothelioma. The drug, say researchers, which activates the immune system against cancer, targets and destroy cancer cells without harming healthy cells.

Chemotherapy

French researchers report that patients with mesothelioma who were treated with the combination chemotherapy regimen of pemetrexed/cisplatin, a standard of care for many mesothelioma patients, along with bevacizumab (Avastin) saw significantly longer survival. The results of this trial were so striking that the researchers believe they have found a “new treatment paradigm” for malignant pleural mesothelioma. Avastin is currently used in the treatment of numerous cancers, including certain lung cancers.

Surgery

For patients with resectable mesothelioma, there are two primary surgical options: extrapleural pneumonectomy (EPP) and pleurectomy/decortication (P/D). Both surgeries require good patient health and an extended recovery period, leading some patients to forego surgery altogether. But researchers now report that in comparison with no treatment for mesothelioma, surgery alone was “independently associated with significantly longer survival.” They added that surgery-based therapy is still the “cornerstone of treatment for this challenging disease.”

In other studies, researchers found that when oncologists added radiation as a treatment modality, either before or after EPP, it was safe and well tolerated in malignant pleural mesothelioma patients, and patients showed improved outcomes.

Early Detection

Mesothelioma has an extremely long incubation period, and the cancer is typically only detected after symptoms become life threatening. At this late stage treatment options are limited. However, researchers report they may be able to detect cancer years before patients or their doctors realize it is growing inside them. The researchers looked at people with cancer cells growing in them and found that their DNA strands demonstrated an accelerated aging process not present in comparably healthy people. They anticipate this can be used as a predictive marker for cancer.

Although these studies all show promise in the treatment and survival of mesothelioma patients, they are still in clinical arenas and it could be years before they are available to mesothelioma patients.

Check with your doctor to determine whether any of these treatments or clinical trials are available to you.

What steps can one take to receive the best treatment?

Patients need to search for centers that have experience treating mesothelioma and/or centers that are engaged in multimodality treatments. While newer treatments such as immunotherapy and targeted therapy hold promise, they are still considered experimental rather than standard treatment. It’s also important to know that not every patient receives the same treatment regimen. Based on your health, cancer stage, and other factors your medical team will customize a course of treatment.

Multimodality treatment consists of two or more of chemotherapy, surgery, and radiation. Several new treatments—including intrapleural/intraperitoneal chemotherapy, intraoperative radiation therapy, and platinum-based chemotherapy—are becoming more mainstream and changing the mesothelioma treatment paradigm. Both intraoperative radiation (local radiation delivered to the chest cavity) and intrapleural/intraperitoneal chemotherapy (a bath of warm chemo drugs applied to the cancer site) are what’s known as “local treatment after surgery.” That is, they are performed while the patient is still in surgery, after all visible cancer cells have been removed.

Dr. Marcelo DaSilva during a recent MesotheliomaHelp Q&A discussed how local treatment after surgery can make surgery more effective, but only after the initial task of tumor removal is performed. In other words, if doctors open up the chest and only apply chemo drugs or radiation, without taking out the tumor, there won’t be much effect on the cancer.

Heated chemotherapy and radiation are intended to treat cancer that can’t be seen and remains after surgery. Researchers still debate whether intraoperative chemotherapy or intraoperative radiation is more effective, with the question centering on the depth of penetration (chemotherapy has a depth at which it stops working, but not radiation, because the beams can penetrate all tissue layers). In the future intraoperative radiation may emerge as the more effective local treatment after surgery, but as things stands now, surgery, chemotherapy, and intraoperative chemotherapy are typically the best options.

Triple, platinum-based chemotherapy is another option. Platinum-based chemotherapy has been shown time and time again to be a safe and effective drug with good penetration. With platinum as a base, other chemo drugs are added to that foundation. Research shows that triple chemotherapy produces the best results for cancer across the board, whether it’s GI cancer, lung cancer, or mesothelioma.

Several other treatments are still in the clinical trial stage, notably immunotherapy and targeted therapy agents. Dr. DaSilva made the point that patients and patient advocates need to understand that trials are just that, and you shouldn’t replace multimodality treatments that are proven to work with a trial for a single, yet-to-be-proven drug.

Clinical trials play an important role in advancing disease treatment but aren’t necessarily the best treatment choice for all patients. If you’re not a good candidate for multimodality treatment—or if multimodality treatment fails and early cancer recurrence occurs—then you may want to consider a trial. But it is not recommended to participate in a trial as a first resort. Of course, patients are free to pursue the course of treatment that they want.

What are the most common surgeries for mesothelioma?

If a patient is in relatively good health and the cancer is detected early, surgery may be an option. Some of the common surgeries for malignant mesothelioma include:

  • Extrapleural Pneumonectomy (EPP), where the surgeon removes the lung, the affected pleura and pericardium tissue, and nearby lymph nodes. An extrapleural pneumonectomy is an extremely invasive surgery that is not an option for all patients.
  • Pleurectomy Decortication (P/D), where the doctor removes the pleura lining the affected lung and the chest cavity, as well as the tissue that lines the mediastinum and the diaphragm. Pleurectomy decortication is less invasive than an extrapleural pneumonectomy.
  • Cytoreduction or debulking surgery, which is used to treat peritoneal mesothelioma by removing all signs of the cancer from the abdominal cavity. This surgery is usually done at the same time as heated interoperative chemotherapy.

Other surgical procedures your doctor may consider include debulking pleurectomy, decortication of the lung, segmentectomy of the lung, or a lobectomy. Most of these treatments would be in addition to radiation therapy or chemotherapy.

How can I find clinical trials for mesothelioma?

If you or a loved one has been diagnosed with pleural mesothelioma or another form of the disease, you should talk to your doctor about your options for participating in a clinical trial.

Although there is no single directory of clinical trials to look through, your doctor can point you in the right direction and discuss how a trial may fit into your current treatment plan.

Here are some sites to help start your search:

I have read about palliative care and preparing for end of life. Where can I find palliative care and what should I know about it?

Editor’s Note: This question was posed to nurses Eleanor Ericson and Lisa Hyde-Barrett during a live Q&A. The answer is adapted from their response. Watch the video to hear Ellie and Lisa’s verbatim response.

Question: I have read about palliative care and preparing for end of life. Where can I find palliative care and what should I know about it?

The first thing to keep in mind is that the need for palliative care isn’t necessarily associated with the end of life. Palliative care is the control and management of symptoms. It’s intended to make people feel as comfortable as possible with the mesothelioma symptoms they’re experiencing, such as shortness of breath and chest pain.

As far as where and how to receive palliative care, many hospitals and medical facilities now have a pain and palliative care department. Often times, when someone is diagnosed with mesothelioma, the palliative care department is part of the patient’s medical team along with the medical oncologist, the surgeon, and whoever else comprises the team. Palliative care providers develop a relationship with patients and learn what does and doesn’t relieve their pain. They’re a great asset to your overall care. Oncologists work closely with the palliative care department and should be able to tell you about the palliative services available at your treatment facility.

Don’t forget, however, that when it comes to your pain, you’re the expert. You need to do as good of a job as possible in explaining your symptoms to a palliative specialist so he or she can develop a regime that provides relief. To this end, keeping detailed notes of your condition is useful. For instance, write down when the pain started, how long it lasted, and when it was the worst. Being an active part of your care by transcribing details such as these will help specialists to better help you.

In addition to alleviating the physical pain associated with this cancer, palliative care can help ease the psychological pain—the stress and anxiety—of your disease. For example, you might feel anxious when you get short of breath, which can make the shortness of breath worse. Palliative care specialist can teach you methods for controlling anxiety and other psychological symptoms that can exacerbate physical symptoms.

Another specialist who can help you with non-physical issues is a social worker. This person can sit and talk with you, figure out where you’re coming from emotionally and what you’re going through. He or she can also help with logistics such as securing lodging near your treatment facility and whatever else you need help with. The more support you have, the smoother your journey is going to be. Hospitals and medical centers often employ social workers.

mesotheliomahelp Video Ask the nurse

The first thing to keep in mind is that the need for palliative care isn’t necessarily associated with the end of life. Palliative care is the control and management of symptoms. It’s intended to make people feel as comfortable as possible with the mesothelioma symptoms they’re experiencing, such as shortness of breath and chest pain. As far as where and how to receive palliative care, many hospitals and medical facilities now have a pain and palliative care department. Often times, when someone is diagnosed with mesothelioma, the palliative care department is part of the patient’s medical team along with the medical oncologist, the surgeon, and whoever else comprises the team. Palliative care providers develop a relationship with patients and learn what does and doesn’t relieve their pain. They’re a great asset to your overall care. Oncologists work closely with the palliative care department and should be able to tell you about the palliative services available at your treatment facility.

Can mesothelioma go into remission?

Mesothelioma remission may occur when aggressive treatment leads to a reduction in tumor size.

Patients who experience mesothelioma remission will need to be closely monitored by their doctors. Because the cancer is not considered curable, doctors will watch for signs of mesothelioma recurrence to decide on how to proceed with treatment.

Who can I get to help me after my surgery?

Editor’s Note: This question was posed to nurses Eleanor Ericson and Lisa Hyde-Barrett during a live Q&A. The following answer is based on their response. Watch the video to hear Ellie and Lisa’s response in its entirety.

Recovering from surgery is difficult and challenging, but it is vital that you take it easy, listen to your doctor’s orders and not overdo it as your body heals.

Your recovery path will be as individual as your treatment plan. Some patients might stay in the hospital 2-3 days, others for 2-3 weeks. Some might require a stay in a rehabilitation facility to help recover their strength after surgery, while others can recover post-surgery at home with limited help from a caregiver.

But in one form or another, you will need help and support, and knowing where to turn before you have your surgery will better aid your recovery. There are many factors that come into play when assessing recovery options, including insurance coverage, financial circumstances, family availability and capability, and patient function. These are all unique to an individual and should be looked at closely.

Your care needs will change as time passes. Lisa Hyde-Barrett, a mesothelioma nurse, says the best-case scenario is to stay at the hospital for as long as the medical team recommends. More than likely, you will then be moved from the hospital into a rehabilitation facility, often called a step-down unit, for continued medical support.

During hospitalization you may be confined to bed and require constant monitoring. Once in rehab, you will begin moving around a little bit more, but support from a trained medical team may still be critical. When you return home, you will have orders such as maintaining an activity level, performing breathing exercises, and getting proper nutrition. Your caregiver may need to help you with all of this as well as helping you to shower, dress and get up and down.

Caregiver options that may be available to you once you leave rehab are:

  • Spouse
  • Family member
  • Friend
  • Paid in-home nursing care
  • Paid in-home care (non-medical)
  • Out-of-home daycare (such as senior centers)

Work with your medical social worker for references and assistance.

If you will be counting on a family member to help you, ensure that he or she has the availability, skill and desire to assist you—and that you trust them with your care. Have them accompany you to your pre-surgical and post-surgical medical appointments so they can understand their responsibilities. To help you and your designated caregiver, it is also a good idea to have a backup available who is also well-informed.

Once you begin feeling better and moving around  you may want to get out more. You may be able to call on friends to take you out for a drive or a coffee. You may also have someone take you to the local senior center where the staff and guests can offer companionship, meals and minor care.

There are a variety of options that can work for you, but the important thing to keep in mind is to do your homework and prepare for your care. Your medical team can offer guidance, but you know your preferences and situation best, so select your care based on personal needs and resources.

Ellie and Lisa stress that help is available for patients who need it. You can ask their advice directly by submitting a question through Nurse’s Corner.

Caregivers or caregivers-to-be can get support from the Family Caregiver Alliance.

What are the side effects of radiation treatment?

Editor’s Note: This question was posed to nurses Eleanor Ericson and Lisa Hyde-Barrett during a live Q&A. The following answer is based on their response. Watch the video to hear Ellie and Lisa’s complete response.

Radiation is one of the primary treatments for mesothelioma. It is used to control the growth or spread of the cancer and to reduce pain and other symptoms. Although there have been significant advances in the technologies used for radiation therapy, making it safer and more focused on the targeted cancer cells, Lisa Hyde-Barrett, a 25-year mesothelioma nurse, says, “it can be very difficult, very grueling.”

Radiation therapy can be used for two different reasons: adjuvant therapy or palliative therapy. The goal of adjuvant therapy is to kill any small area of cancer that cannot be seen or resected (removed) during surgery. After a patient has recovered from surgery, radiation may be the next step in his or her treatment program. It has been shown that radiation can reduce the chance of chest wall cancer recurrence and can also provide local control.

Radiation therapy can also be used to treat symptoms such as shortness of breath, pain, bleeding and trouble swallowing. When used this way, the treatment is considered palliative. Radiation therapy uses high-energy X-rays or particles to kill cancer cells. One of the difficulties with using radiation is avoiding healthy nearby tissues. Mesothelioma can affect the lungs, stomach or heart, and side effects vary depending on the site of treatment.

Eleanor Ericson, who was worked as a nurse for over 30 years, stresses that although radiation is often prescribed, it is not a “one size fits all” approach to mesothelioma treatment. Not every patient will be prescribed radiation therapy and not every patient prescribed the treatment will realize benefits from it.

The most common side effects of radiation, regardless of the area treated, are fatigue, nausea and “sunburn.” Radiation is typically administered five days a week for up to six weeks, and the side effects usually start after several treatments and continue, or worsen, throughout the duration of the therapy. Eleanor says that in her experience fatigue often hits on the third week of treatment, and then, it can be “overwhelming fatigue.”

There are medications that can help to combat the nausea. The key to beating fatigue is for patients to keep up their nutritional needs as best as they can and to get plenty of rest. If possible, patients should plan their day to include rest in-between bouts of activity. Lisa says that sometimes the burning of the skin can be so bad that it may be “like the worst sunburn of the patient‘s life.” Your doctor may prescribe pain medicines, steroid creams, or a topical cream to help alleviate the pain. Burns should clear up post-radiation, although some patients report long-term skin issues.

The most important thing patients can do is to keep the medical team apprised of all symptoms experienced during radiation treatments. They may be able to adjust your treatments or medication to help ease the side effects.

“Radiation isn’t easy by any stretch, but it does help quite a bit in palliative care,” says Lisa.

EPPs versus the pleurectomy versus decortication?

Editor’s Note: This question was posed to Dr. DaSilva in the live Q&A. The answer is adapted in part from his response.

Neither treatment fits all patients in all circumstances, because every patient and every mesothelioma case is different.

There are passionate advocates of extrapleural pneumonectomy (EPP) and passionate advocates of pleurectomy/decortication (P/D). Given patient selection appropriate to the disease stage and the best treatment for that patient, there isn’t any significant difference in terms of overall survival outcome.

For example, a young patient with early stage mesothelioma and good pulmonary function could benefit from extrapleural pneumonectomy, whereas an elderly patient with poor pulmonary function might not do as well with EPP. Again, it’s all about selecting the right patient for the operation.

Your treatment specialist can discuss with you which surgical procedure, if any, is appropriate for your disease stage, overall health and performance status. Also keep in mind that there are surgical options in addition to EPP and P/D that might be more appropriate for you.

Extrapleural Pneumonectomy (EPP) Where the surgeon removes the lung, the affected pleura and pericardium tissue, and nearby lymph nodes. An extrapleural pneumonectomy is an extremely invasive surgery that is not an option for all patients. Pleurectomy Decortication (P/D) Where the doctor removes the pleura lining the affected lung and the chest cavity, as well as the tissue that lines the mediastinum and the diaphragm. Pleurectomy decortication is less invasive than an extrapleural pneumonectomy.

Can you explain the controversy of using EPP versus pleurectomy versus decortication?

mesotheliomahelp faqs Ask the Nurse Series - Eleanor Ericson

 

How do you treat malignant mesothelioma?

Treatment for malignant mesothelioma will depend on the patient’s health and the stage at which the cancer was caught. The most common treatment options include:

  • Surgery to remove as much of the cancer as possible
  • Radiation therapy
  • Chemotherapy

The patient’s doctor may also help a family find clinical trials for mesothelioma or recommend holistic treatments to improve the patient’s quality of life.

Are you aware of any treatment by a doctor, where they look for Bio-Markers when deciding a treatment plan?

Editor’s Note: This question was posed to nurses Eleanor Ericson and Lisa Hyde-Barrett during a live Q&A. The answer is adapted from their response. Watch the video to hear Ellie and Lisa’s response word-for-word.

Question: Are you aware of doctors checking for specific biomarkers before prescribing a mesothelioma treatment plan?

Personalized treatment of cancer and other diseases may one day be realized, and exciting new research is building on scientific discoveries of recent years that could make it possible to tailor treatments to the unique genetic characteristics of each patient and that patient’s cancer. As of right now, however, personalized medicine remains an emerging field with many knowledge gaps.

A precursor to personalized medicine (sometimes called precision medicine) is targeted therapy. Targeted therapy is the use of cancer drugs that attack cancer by honing in on specific cancer cell functions. Older cancer drugs acted against healthy and cancerous cells without much distinction. Targeted drugs may produce fewer toxic side effects than their predecessors, but they are still not tailored to an individual patient’s tumor or genetics.

According to the American Cancer Society, truly personalized medicine currently has three meanings:

  • Tumor testing to determine the efficacy of different treatments;
  • Analyzing a patient’s genetics to see whether a certain medicine will be well-tolerated;
  • Performing genetic testing that looks for mutations that put the patient at a higher risk for developing a type of cancer.

Of these three, there is at least one definitive finding that relates to mesothelioma. In a 2011 study funded by the National Institutes of Health (NIH), researchers found that people with mutations of the BAP1 gene were predisposed to mesothelioma and other cancers. This finding helps to explain why not everyone who is exposed to asbestos develops mesothelioma and makes it easier to identify those people at greatest risk for developing mesothelioma. Related findings are reported in the Annals of Cardiothoracic Surgery.

Through additional research, more personalized mesothelioma treatments may one day be available. Some of the most promising research is being performed in clinical trials. To find the latest on what trials are being conducted for mesothelioma, go to clinicaltrials.gov and plug in the search term “mesothelioma”. You might also consider participating in a clinical trial. Study volunteers are in high demand and needed to drive further treatment innovations.

Other good sources of information about patient-specific cancer include your doctor and treatment team, the American Cancer Institute and the MesotheliomaHelp blog. Our writers constantly provide updates with the latest mesothelioma treatment news (for example, check out this post about “Laboratory in a Patient” personalized therapy testing), so check back regularly to read about new developments.

Are you aware of any treatment by a doctor, where they look for Bio-Markers when deciding a mesothelioma treatment plan?

mesotheliomahelp faqs: ask the nurse series

Is cryoablation an effective treatment for mesothelioma?

Cryoablation is a medical treatment used to kill cancer cells with extreme cold. The technique involves repeated freezing and thawing of targeted tissues. Visible tumor cells are frozen at the tip of a highly chilled probe and then warmed until they are killed.

The procedure is primarily used on patients with early stage prostate cancer, kidney cancer, and liver cancer. Cryoablation, however, is also used by some specialists in the treatment of mesothelioma in combination with other therapies.

A recent UCLA study found that cryoablation is effective against mesothelioma and is a particularly good option for patients for whom other treatment options are not viable. Another study published in the Journal of Vascular and Interventional Radiology concluded that cryoblation of localized malignant pleural mesothelioma is safe, effective, and improves overall survival.

Will I have to undergo chemotherapy treatment?

Chemotherapy is typically the primary treatment for patients diagnosed with lung cancer or mesothelioma. Chemotherapy is often recommended after surgery to try to destroy any remaining cancer cells. Some chemotherapy agents have shown to improve overall survival rates. Patients can expect to achieve a partial response or at least disease stability, although chemotherapy is not a known cure for mesothelioma.

Chemotherapy drugs are usually given in combinations of two or more during treatment. In 2004, pemetrexed became the first agent to get the U.S. Food and Drug Administration’s approval for use in combination with cisplatin. Since that time, pemetrexed-cisplatin combination has been considered the standard of care for malignant pleural mesothelioma chemotherapy.

Triple chemotherapy, however, or the use of three chemotherapy drugs, is also common. In fact, the results of a Phase 3 French clinical trial announced in May 2015 suggests that the pairing of pemetrexed/cisplatin with the drug bevacizumab (Avastin) has the potential to become the new standard of care for first line treatment of mesothelioma. In the French study, overall survival of patients receiving pemetrexed/cisplatin/bevacizumab was nearly 3 months longer than patients receiving pemetrexed/cisplatin, paving the way for a new treatment paradigm.

Other chemotherapy agents commonly used for mesothelioma treatment include doxorubicin, paclitaxel, and carboplatin. The ideal regimen for an individual patient is decided by that patient’s medical team and based on a number of criteria, including the patient’s age and health and the type of mesothelioma and cancer stage.

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