Questions about mesothelioma? Call 1-800-726-1860

Mesothelioma Blog

  • This field is for validation purposes and should be left unchanged.

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.

Blogging About Mesothelioma

It is now 2018 and as years pass, medical information about Mesothelioma is becoming more easily accessible to the public. Like anything, some websites are more reliable than others and it is unfortunately up to you to weed out the ones that carry more validity. Websites that are most accurate are written from people who are currently and actively caring for patients who have Mesothelioma. With that said, there is not that much available on these websites about emotions. Emotions are a huge part of the disease and recovery.

As we write blogs, frequently they are based on patient’s experience and medical experience. Following blogs like this one can allow you to read and inform yourself at your own pace. Many patient’s blog their own experience whether it be how their diagnosis was initiated, how they are handling chemotherapy, side effects from drugs or other issues. This can help with building a community of support. Despite Mesothelioma being a rare disease, the emotions and feelings are far from uncommon. Often this can help if you are feeling alone, scared or depressed. No one knows better than a fellow Mesothelioma patient. Your loved ones are doing everything for you but it is not the same as speaking with another person experiencing what you are enduring.

Some patients get through their journey by keeping a journal of their thoughts and emotions. Some people do it just for themselves and others have people follow them. Whatever the reason you choose, whether your thoughts become public or private it may just help you or someone else.

Many patients with different types of cancer blog as well. You don’t have to strictly follow Mesothelioma patients. Think about who and what you choose to follow as a guide. Take what you like and leave the rest behind.

Whenever one starts or stops blogging it is usually for a reason. Often it is the easiest way to keep family and friends involved about the person’s progress. It allows patients to say it once and not have to field numerous phone calls or say things numerous times. Caring Bridge is a familiar web site to many where daily journaling can be formulated and readers can post their love and concern for you.

We all know what kind of illness this is and how much it can take out of you and your family. Like most illnesses, it can be mentally draining. If you try one of these tactics possibly it will give you some mental relief.

– Lisa

Mesothelioma Recovery

Recovery is often a long process that requires a lot of patience in order to beat mesothelioma. For many patients and their loved ones, the rate of recovery can be lengthened if they focus on issues that prolong progress rather than the obstacles they have already overcome. Often times patients become fixated on similar challenges time and time again.

One challenging and frequently seen obstacle is a chest tube leak. During surgery, a chest tube is placed on the operative side where the disease was. This chest tube helps the lung re-inflate until the lung can function independently. It is closely monitored by x-rays and a device that shows whether there is a still a leak. In order to treat and overcome a chest tube leak, ambulation is used as it is very important to help the lung re-inflate. Unfortunately, the treatment must take its time.

Another obstacle that patients sometimes focus on too often is oxygen saturation. Usually a patient is preferred to have an oxygen saturation level above 92 percent. As this number is easy to understand, families and patients often focus on it. In addition to oxygen saturation, drainage from a device and the amount it outputs can also be focused on too much.

Although there are some obstacles that patients should not stress heavily about, the number on the scale is actually very important. A patient’s weight tells whether they are losing weight because their caloric intake is not where it should be or possibly they are retaining fluid and may need fluid restriction or a diuretic. The number on the scale can also be an indication for how well the patient is breathing

If a patient is staying in the hospital, often people will become focused on lab work. For example, maybe an elevated white count could indicate infection. If the white blood count is at a dangerous level, it could indicate that the patient is very susceptible to infection, otherwise known as immunocompromised. This can happen to a patient if they are receiving chemotherapy as there are many adverse reactions related to the drug. Additionally, another issue that patients quickly focus on is urine output as it is again another area that is easily understandable. Certain amounts per hour are expected and we monitor lab values that also reflect the work of the kidney. If the output is too low, often patients are easily upset.

It is wonderful to see patients and loved ones engaged in the overall health of the Mesothelioma patient. Lab values, chest x rays, weights, and shortness of breath are all very important in the overall health of a patient. Often times, patients, loved ones and medical professionals can get so hyper-focused on the patient’s abnormal issues that they forget to look at the patient and their successes. Before you become overwhelmed and start letting your mind go places it does not need to, remember before all else, look at your loved one. Ask yourself are they in distress? Are they uncomfortable? Certainly, if there is something that needs medical attention, reach out to someone. If you are unsure and your gut tells you to get help, then do so. The worse thing that can happen is nothing. No one is going to fault you for trying to be on your game.

– Lisa

Talia’s Journey

Being diagnosed with a rare disease often offers challenges that might seem insurmountable to some. Patients and family members who have a loved one diagnosed with malignant mesothelioma know of the challenges that are faced with the diagnosis, access to treatment and decisions regarding the right treatment and the timing of when to have the treatment.

Mesothelioma is a rare disease that has developed a supportive community over the past approximately 15 years that gives patients and families hope along their journey.

Perhaps you have seen the news coverage of Talia Duff and her battle with a rare genetic disease. Talia is a six grader from Ipswich Massachusetts who has a life-threatening disease, Charcot Marie Tooth Neuropathy Type 4J or CMT4J. It is a progressive neurodegenerative disease that affects the nerves that lay outside of the brain and the spinal cord causing profound weakness of the limbs leading to paralysis and later difficulty breathing as the disease advances. This disease is a subset of another disease, Charcot-Marie-Tooth, which is a hereditary disease of the nervous system. Charcot-Marie-Tooth affects 1 in 2,500 Americans. CMT4J affects approximately 22 known victims worldwide. Talia is currently in a wheelchair as her mobility has been affected.

Talia’s parents were understandably devastated by the news and with the options. There are no clinical trials, no treatment and they felt no hope. They researched the internet and brought together interested researchers, one of them, Dr. Jun Li at Vanderbilt who has studied CMT4J. The researchers believe the gene FIG4 mutation causes CMT4J, the thought is to advance the gene therapy and replace the mutated gene with a healthy gene. By doing the procedure it would not only halt the disease but allow peripheral nerves to heal and give Talia back some of her strength. This needs to go through more research including a Clinical Trial. The cost of this happening would be time and money- 1 million dollars. Talia and her family had neither.

Talia’s parents started a 501c foundation for contributions, a website, and started brainstorming to find a way to make it happen. They turned to social media. The community responded. There were baseball games, shoelace sales, 50/50 raffles and numerous other fundraisers. Talia’s six grade classmates began getting involved. Selling ingredients to make cookies in a glass jar, raffles, they did a video that appeared on national television. Her parents appeal was in People magazine. In December, they conducted a “twitterstorm” held by her classmates and teen agers from surrounding communities to raise the remaining $200,000. Talia and her parents reached the goal of a million dollars and announced it at an assembly of her classmates in early January.

Rare diseases such as malignant mesothelioma, and CMT4J need a community, support, research and hope.

As nurses, we have the good fortune of being able to put names and faces and people’s stories to people with malignant mesothelioma. Talia and her community have now put a face to another rare debilitating disease, CMT4J. We all pray that the results will be positive for Talia and her family. We look forward to a time when in the words of Mrs. Duff, “We’re so overwhelmed with gratitude for everyone who has gotten us this far. And now Talia is giving other families hope. To every family out there in a similar fight, we want to say, ‘Don’t give up. Anything is possible.’

– Ellie

What do you – the patient – want?

Facing a life-threatening challenge such as a diagnosis of malignant mesothelioma can be overwhelming. Your world as you know it has been changed. What do you do? Where do you turn? After gathering the information, it is time to think about it all in the context of your own life.

What is important to you? What do you want? For patients recently diagnosed with malignant mesothelioma, these questions are difficult to put into perspective.

For many years the medical community has been “teaching” patients about diseases and medications and what you should and should not do. The doctor would order the medication, treatment and recommend therapy. The patient’s role would be to follow the instructions, fill the prescriptions, take the medications as directed, make the appropriate follow up appointments, and follow the plan of care as outlined by their medical team. This system has limited success for many reasons. It allows for none of our own uniqueness as people and does not take into account that we are all individuals with our own unique perspective, goals and dreams for our own lives. Another factor contributing to the limited success is the financial cost of all this. Over 80% of Americans that are insured have deductibles. Can a patient afford the deductibles, the possible travel to a center, the cost of the medication, chemotherapy, and the time away from the family? Is that what they want? For some medical professionals, old and young, they have not yet embraced the importance of patient engagement, partnering with patients, and asking the important questions that help a patient choose what they want, after being shown the possible medical treatments that are options for them.

What do you do with this information? No one is trying to overwhelm you, they are trying to present the information so that you can then ask and answer the important questions with your family and friends. What do you- the patient – want? What can you tolerate?

This is a process- the decisions are not made in one day.

All of this involves taking the time to listen to patients and families, listening to their stories, concerns, hopes and fears. It involves the patients honestly deciding if this is the journey that they want to embark on or would they choose a different path.

Mesothelioma patients facing very difficult decisions need support. Recently a couple in there 50’s came to our mesothelioma center. They came with some information about mesothelioma, not the latest information and were surprised about what they heard. At the beginning of the day the patient was withdrawn, her husband did the talking. She had recently been diagnosed and had been told that mesothelioma was “a death sentence, that would happen very soon.” After listening to their story, they had their appointment with the mesothelioma specialist, they left with one thing they did not have in their pile of medical records at the beginning of the day- hope.

What they decide for their course of treatment is their decision- they have heard the options- they have found a community- they have hope. What is right for them is their decision.

– Ellie

NINTEDANIB and Malignant Pleural Mesothelioma

The drug Offev or Nintedanib, also known as BIBF 1120, is currently showing promise in treating patients with malignant pleural mesothelioma. Nintedanib is classified as an oral triple angiokinase inhibitor. Nintedanib targets receptors that play a role in tumor growth and development of metastasis in malignant pleural mesothelioma. The cancer cells release growth factors, bind to activate growth factor. In order for the tumor to spread or metastasize angiogenesis takes place. Angiogenesis is blood vessel formation. The tumor needs new blood vessels to grow. Nintedanib uses anti-angiogenic strategy that is different from other approved treatments. Nintedanib is a small molecule that targets three receptors known to be involved in angiogenesis.

The pathways that the drug uses are a potent intracellular inhibitor of tyrosine kinases. It targets platelet derived growth factor receptors (PDGFR) a and B, vascular endothelial growth factor receptor VEGFR 1,2, and 3. FGFR 1,2 1nd 3 fibroblast growth factor receptors.

The LUME-Meso phase 11 trial in patients, showed patients given this drug by mouth plus the standard chemotherapy of pemetrexed and cisplatin had significantly longer progression –free survival than those treated with a placebo and the standard therapy. Overall survival was also longer with Nintedanib (18.3 vs. 14.5 months.)

The company Boehringer Ingelheim applied and was granted approval as an orphan drug status for the drug Nintedanib for the treatment of malignant pleural mesothelioma by the United States Food and Drug Administration in December 2016. Currently Nintedanib, under the tradename Offev, is approved for the treatment of idiopathic pulmonary fibrosis.

In 2011, a clinical trial of patients who have idiopathic pulmonary fibrosis, a debilitating disease that affects the lungs, characterized by disease progression that includes lung deterioration and scarring. The disease is difficult to predict but the mean survival time from diagnosis is 2.5 to 3.5 years. This study in which 432 patients compared BIBF 1120 with a placebo and found those who took the drug Ofev had a decline in their rate of reduction of lung function, with fewer acute exacerbations and preserved the quality of life of the participants. Nintedanib was approved by the Federal Drug Administration in 2014 for the treatment of idiopathic pulmonary fibrosis.

The recommended dose is 150mg of Nintedanib is twice a day by mouth. It should be taken with food. It is not recommended for patients with liver disease, depending on the stage of the disease.

One of the most important thing to know is that OFEV can cause birth defects. Women should not become pregnant while taking OFEV,

Some of the more common side effects are elevation in liver function tests, diarrhea, nausea and vomiting. Decreased appetite was also reported. A small number of patients had thromboembolic events that have led to myocardial infarctions- heart attacks, strokes, and small number of gastrointestinal perforation.

Currently there are 4 Clinical Trials on listed for mesothelioma and Nintedanib. Three are recruiting and one is not yet recruiting. The LUME-Meso phase ll trial is a multicenter worldwide trial, with sites in the United States. The second trial is to be based in Europe, and is not yet recruiting. The third trial listed is based in the United States and is for treatment of recurrent mesothelioma with Nintedanib. The fourth trial is based in France for many solid tumor cancers, including mesothelioma and nintedanib.

We have reviewed the 2 clinical trials for Nintedanib and malignant pleural mesothelioma. One is being tested as a drug option for recurrence. The second is being given along with first line chemotherapy. The research is exciting and the results promising. Ask your mesothelioma doctor if your disease might benefit from these clinical trials.


mesothelioma clinical trialWe encourage participation in clinical trials for research leading to a cure for mesothelioma. It is known that nationally the statistics for participation in adult cancer trials is between 3-5% of adults who have a cancer diagnosis.

For mesothelioma patients and families who are interested in clinical trials, researching clinical trials and eligibility can be a time- consuming barrier to participation. The information about clinical trials is available on


Official Title– A Phase II Trial of BIBF 1120 (Nintedanib) in Recurrent Malignant Pleural Mesothelioma

Listing on-

Sponsor- Barbara Ann Karmanos Cancer Institute Wayne State University 4100 John R Detroit, Michigan 48201

Collaborator: National Cancer Institute

Location: 4 total sites- 2 are recruiting 2 not yet recruiting-

  • University of Michigan Comprehensive Cancer Center Ann Arbor, Michigan, United States 48109 contact Gregory P. Kalemkerian 734 615 4762 recruiting
  • Wayne State University/Karmanos Cancer Institute Detroit Michigan, United States 48201 contact Antoinette J. Wozniak 313 576 8752 -recruiting
  • University of California Davis Comprehensive Cancer Center Sacramento California, United States 95817 contact David R. Gandara 916 734 8452 not yet recruiting
  • Memorial Sloan Kettering Cancer Center New York, New York, United States, 10065 contact Marjorie G. Zauderer MD – not yet recruiting

Principal Investigator Antoinette J. Wozniak, Barbara Ann Karmanos Cancer Institute Wayne State University 4100 John R Detroit Michigan 48201

Contact– Listed above by site.

Number of Participants– 55 starting date October 2015- estimated completion date January 1, 2018

Purpose- A phase ll trial to study how well Nintedanib works in treating patients with malignant pleural mesothelioma that has come back. Nintedanib may stop the growth of tumor cells by blocking some of the enzymes needed for cell growth.

Eligibility Criteria- Adults over age 18 male or female

Inclusion and Exclusion Criteria:

  • Patients must have histologically confirmed diagnosis of unresectable malignant pleural mesothelioma
  • Patients must have a Ct scan within 28 days of beginning trial to measure disease- all disease must be assessed by the RECIST criteria.
  • Patients must have had prior systemically administered platinum-based chemotherapy; pleural space washing with cisplatin does not constitute systemic administration; no more than two prior systemic therapeutic regimens are allowed (including biologics, targeted and immunotherapies), and at least one regimen must have been platinum-based
  • No prior treatment with BIBF 1120 or any other vascular endothelial growth factor receptor (VEGFR) inhibitor
  • No known hypersensitivity to BIBF 1120, to its excipients or to contrast media
  • Patients may have received prior surgery (e.g., pleurectomy, pleurodesis) provided that at least 28 days have elapsed since surgery (thoracic or other major surgeries) and patients have recovered
  • No active brain metastases (e.g. stable for < 4 weeks, no adequate previous treatment with radiotherapy, symptomatic, requiring treatment with anti-convulsants; dexamethasone therapy will be allowed if administered as stable dose for at least one month before randomization); no leptomeningeal disease
  • No radiographic evidence of cavitary or necrotic tumors
  • No centrally located tumors with radiographic evidence (CT or magnetic resonance imaging [MRI]) of local invasion of major blood vessels
  • Institutions must offer patients the opportunity to submit tissue for future correlative studies
  • Patients may have received prior radiation therapy provided that at least 14 days have elapsed since the last treatment and patients have recovered from all associated toxicities at the time of registration
  • Patients must have a Zubrod performance status of 0-1
  • Absolute neutrophil count (ANC) >= 1,500/mcl
  • Platelet count >= 100,000/mcl
  • Serum bilirubin =< institutional upper limit of normal (IULN)
  • Liver tests- SGOT, AST, SGPT must be less than institution upper limit of normal
  • Renal tests- less than IULN obtained within 14 days
  • No proteinuria Common Terminology Criteria For Adverse Events (CTCAE) grade 2 or greater
  • No therapeutic anticoagulation (except low-dose heparin and/or heparin flush as needed for maintenance of an in-dwelling intravenous device) or anti-platelet therapy (except for low-dose therapy with acetylsalicylic acid < 325mg per day); no history of clinically significant hemorrhagic or thromboembolic event in the past 6 months
  • Patients must have no evidence of bleeding or coagulopathy; patients must have no pathologic condition other than mesothelioma that carries a high risk of bleeding
  • No major injuries within the past 10 days prior to start of study treatment with incomplete wound healing and/or planned surgery during the on-treatment study period
  • Patients must not have gastrointestinal tract disease resulting in an inability to take oral or enteral medication via a feeding tube or a requirement for intravenously (IV) alimentation, prior surgical procedures affecting absorption, or active peptic ulcer disease
  • No significant cardiovascular diseases ( i.e. uncontrolled hypertension, unstable angina, history of infarction within the past 12 months prior to start of study treatment, congestive heart failure > NYHA [New York Heart Association Class] II, serious cardiac arrhythmia, pericardial effusion)
  • No active serious infections in particular if requiring systemic antibiotic or antimicrobial therapy
  • No active or chronic hepatitis C and/or B infection
  • Patients must not be pregnant or nursing; women/men of reproductive potential must have agreed to use an effective contraceptive method
  • No other prior malignancy is allowed except for the following: adequately treated basal cell or squamous cell skin cancer, in situ cervical cancer, adequately treated stage I or II cancer from which the patient is currently in complete remission, or any other cancer from which the patient has been disease-free for 5 years
  • No psychological, familial, sociological or geographical factors potentially hampering compliance with the study protocol and follow-up schedule
  • No active alcohol or drug abuse
  • All patients must be informed of the investigational nature of this study and must sign and give written informed consent in accordance with institutional and federal guidelines

How the Research Study is Designed to Work-


  1. To assess the 4-month progression-free survival (PFS) in patients with recurrent, unresectable malignant pleural mesothelioma (MAM) treated with Nintedanib.


  1. To assess response rate (confirmed and unconfirmed, complete and partial responses) and disease control rate (response or stable disease) in the subset of patients with measurable disease by both RECIST (Response Evaluation Criteria in Solid Tumors) 1.1 criteria and Modified RECIST criteria for pleural tumors.
  2. To assess overall survival.

III. To evaluate the frequency and severity of toxicities associated with this treatment regimen.

  1. To collect tissue samples for future correlative studies related to overall study objectives.

With any clinical trial, all participation is voluntary. Before enrollment a detailed consent form will be reviewed with the participant and signed. The participant can withdraw from a clinical trial at any point in time. Think about participating if able, the only way to progress to a cure for mesothelioma is through clinical trials.

Please do not hesitate to contact us with any questions.


mesothelioma clinical trialWe encourage participation in clinical trials for research leading to a cure for mesothelioma. It is known nationally the statistic for participation in adult cancer trials is between 3-5% of adults who have a cancer diagnosis.

For mesothelioma patients and families who are interested in clinical trials, researching clinical trials and eligibility can be a time-consuming barrier to participation. The information about clinical trials is available on


Nintedanib (BIBF 1120) in Mesothelioma

Official Title- LUME-Meso: Double Blind Randomized, Multicentre, Phase 11/111 Study of Nintedanib in Combination with Pemetrexed /Cisplatin Followed by Continuing Nintedanib Monotherapy Versus Placebo in Combination with Pemextred/ Cisplatin Followed by Continuing Placebo Monotherapy for the Treatment of Patients with Unresectable Malignant Pleural Mesothelioma.

Listing on

Sponsor: Boehringer Ingelheim

Location: Multiple locations throughout the world. In the United States, there are 10 different locations.

  • University of Alabama at Birmingham Alabama 35249
  • University of California San Francisco California 94115
  • Rocky Mountain Cancer Centers, Colorado Springs, Colorado 80907
  • Comprehensive Cancer Centers of Nevada- Peak Office Henderson, Nevada 89052
  • University of Pittsburg Medical Center, Pittsburg Pennsylvania 15232
  • Greenville Health System, Greenville South Carolina 29615
  • University of Texas MD Anderson Cancer Center, Houston Texas 77030
  • Texas Oncology McAllen Texas 78503
  • Texas Oncology San Antonio Northeast San Antonio Texas 78217
  • Cancer Care Northwest Centers, PS Spokane Valley, Washington 99216

Principal Investigator: Giorgio V. Scagliotti MD, PhD, university of Torino Italy and Nicholas J. Vogelzang MD, Comprehensive Cancer Centers of Nevada- in the United States

Contact: Boehringer Ingelheim Call Center 1-800-243-0127

Number of Participants: Estimated – 537 – September 19, 2013 – October 30,2019

Purpose: This is a Phase ll/lll study to confirm that by adding nintedanib (BIBF 1120) in combination with first line therapy pemextred and cisplatin in one arm of the study- and a second arm having the first line therapy pemextred and cisplatin along with a placebo instead of Nintedanib.

The study will then primarily measure progression free survival measured by the time of randomization for the trial until disease progression, or death from any cause, whichever happens first. The time frame for this follow up is up to 3 years.

The secondary outcomes that will be measured are overall survival measured from the time of randomization to the time of death of any cause. Objective response according to the modified RECIST score. Disease control measured according to modified RECIST by disease control rate. The time frame on all these objectives is up to 3 years.

Screening: 18 years or older- male or female

Not have sarcomatoid sub type of malignant pleural mesothelioma

Eligibility Criteria: Histologically confirmed malignant pleural mesothelioma – Phase ll epithelioid or biphasic subtype only- Phase lll epithelioid subtype only

  • Life expectancy of at least 3 months- decision by the investigator
  • Eastern Cooperative Oncology Group (EGOG) score of 0 or1
  • Measurable disease according to modified RECIST (Response Evaluation in Solid Tumors) criteria

Exclusion Criteria: Previous systemic chemotherapy for malignant pleural mesothelioma

Prior treatment with Nintedanib or any other prior line of therapy

Phase ll patients with sarcomatoid subtype malignant pleural mesothelioma or Phase

lll patients with biphasic or sarcomatoid subtype malignant pleural mesothelioma

Patients with symptomatic neuropathy

Radiotherapy (except extremities) within 3 months prior to baseline imaging

Active brain metastases (e.g. stable for < 4 weeks)

Radiographic evidence of cavitary or necrotic tumors or local invasion of major blood

Vessels by malignant pleural mesothelioma

Significant cardiovascular diseases

Inadequate hematologic, renal, or hepatic function

How the Research Study is Designed to Work: By administering Nintedanib and a placebo to two different randomized groups of patients who have epithelial type malignant pleural mesothelioma, along with the first line chemotherapy agents, cisplatin and pemextred. The results will then be analyzed with attention to overall survival, time to progression of disease recurrence, and time toward death by any cause.


With any clinical trial, all participation is voluntary. Before enrollment a detailed consent form will be reviewed with the participant and signed. The participant can withdraw from a clinical trial at any point in time. Think about participating if able, the only way to progress to a cure for mesothelioma is through clinical trials. Please do not hesitate to reach out with any questions.

Raising Awareness About Rare Orphan Diseases Such as Mesothelioma

Malignant mesothelioma is a rare disease. It is one of approximately 6,000 rare diseases that have been recognized. These diseases are often referred to as “orphan diseases” Rare diseases are those that affect fewer than 200,000 people in the United States, with a population of 330 million people. In other countries, the numbers are different –with numbers varying from 1 to 8 per 10,000 people. Having a rare disease, it follows that few medical professionals are experts as they see so few of these diseases in their practices. Some of the web sites that you can find information on are the National Organization of Rare Disorders (NORD) The United States government offers on its National Institute of Health web site, information on Genetics and Rare Disease Information Center GARD, created in 2002 by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases Research (ORDR) to help people find information about rare diseases. Orphanet is another option for rare diseases and orphan drugs, the site is Europe focused and based.

It has been recognized that it is vital for patients and families to obtain, reliable up to date medical information for rare diseases. It is also important that they have the option of a supporting community, either on line or in person at conferences.

Some of the rare diseases we have all heard about such as mesothelioma, cystic fibrosis, Tourette’s Syndrome and Amyotrophic Lateral Sclerosis-“Lou Gehrig’s ” disease.

Rare diseases also have a day every year to increase awareness. It is held internationally on the last day of February. The theme for 2018 is research. February 28, 2018 is the next one planned.

Another issue when dealing with rare diseases is to get the pharmaceutical companies interested in research and development of drugs that will have a limited market. Research and development of drugs cost millions of dollars and many years to develop. According to the web site ; In 1983 Congress passed the Orphan Drug Act (ODA). The ODA created financial incentives for drug and biologics manufactures, including, tax credits for costs of clinical research, government grant funding, assistance for clinical research, and a seven-year period of exclusive marketing given the first sponsor of an orphan-designated product who obtains market approval from the Food and Drug Administration for the same indication. At the same time, federal programs at the FDA and the NIH began encouraging product development, as well as clinical research for products targeting rare diseases.

In 1983, the United States Food and Drug Administration established the Office of Orphan Product Development. Since this law was signed by President Reagan in 1983, more than 200 companies have brought almost 450 orphan drugs to market. Some of the drugs have been approved to treat other more common diseases and then are “repurposed” to treat rare diseases. For some rare diseases, the drug approval process is based on one well run clinical trial.

Please let us know if you have any questions.

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

How Much Time Do I Have?

A patient recently diagnosed with malignant mesothelioma asked what he thought was a simple question, “how much time do I have?” As the mesothelioma expert answered his question, it was not what he expected. He had read the statistics and the statistics told him an average number and he was expecting to hear a number close to it. He had read the average time that patients diagnosed with mesothelioma live.

One of the most frequently asked questions of any one diagnosed with malignant mesothelioma is how much time do I have? With the diagnosis of any serious illness time is what we focus on to help put the unthinkable in context. Before the diagnosis to some of us time was an abstract thing in our lives, something we didn’t have enough of, something we couldn’t control. Something that we knew was finite but not something that we thought of all the time. Once diagnosed with malignant mesothelioma the amount of time can become something that is very important.

The concept of time is something we learn about at an early age. All through life time plays an important part in the organization of our lives. It is the framework for our lives. Events that shape our lives are often marked by the times of our lives and what we were doing at that point. Time is something none of us is promised.

So many things are involved in planning for living with a cancer diagnosis. When receiving the diagnosis and being admitted for treatment it can be- How long do I have to be in the hospital? How much time will it take to feel normal again? Is this the last time I will do this one thing? Go to my favorite restaurant? Will I know when my time is up? Should I go home or will I get more time if I try another treatment?

With mesothelioma, it is difficult to answer that question. For example, in recurrence recent progress has been made. Recurrence, four or five years ago the treatment options were limited, now there are new treatment options aimed at recurrence. The timing of the diagnosis is crucial. Is the disease early, intermediate, or advanced? What cell type is the disease, is it epithelioid, sarcomatoid, or mixed? What shape are you in physically? What do you want?

The statistics on time and cancer diagnosis are not black and white. They are as individual as everyone’s journey with the disease. The question how much time do I have is as individual as the disease itself and the individual person.

I recently saw a patient and he told us that he had only one year to live. He spoke about this fact very routinely and matter of factly. He told us about how he asked this question many times but no one was willing to answer it. He thought his time was limited but wanted confirmation, at his last appointment he was speaking with the doctor and the doctor was getting ready to end the appointment. Before he could leave the room, the patient asks the doctor to close the door and to sit down. He explained- I know I am sick with a terminal illness. It is important for me to get the facts. The patient expressed how he needed to know how much time he had left. He explained he had three daughters and needed to make plans. His doctor then explained that he could give him the median statistics but he did not have a crystal ball. The doctor spent time going over his options and what the statistics actually meant. What the patient heard is that he has one year left to live. He is now using this as a positive motivator to prove the statistics are wrong. Did the doctor tell him that? No, he did not.

It is a common question with no simple answer. Do any of us know how much time we have left? It is better to spend the time we do have living life to the fullest, doing what is important to us!

– Ellie

  • This field is for validation purposes and should be left unchanged.

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.

Recent Articles

Have a question? We can answer it!

Mesothelioma Questions