In the Shadow of Advocacy: A Meso Morning on Capitol Hill

Wednesday July 11, was Advocacy Day for us here at the Meso Foundation. In a later blogpost, you’ll hear me refer to this Wednesday before our 2012 Symposium as Virtual Advocacy Day but for those of us meeting (some of us, for the first time) on the Hill, it was Advocacy Day. Period. While we put out the call to tweet and post on Facebook awareness on mesothelioma research, I was joining Meso Community member Robena Reid on a visit to Capitol Hill. Our appointment was with Senator Jim Webb of Virginia’s office. I had been asked by the Foundation to shadow her for the morning, write up a report for our blog, and take photographs.

Now here is the true confession: I have never advocated anything before in person. I have emailed my representatives, both on the State and Federal level, but never have I gone to the Hill to speak on the issues. Any issues. This morning I was far out of my comfort zone really not sure what to expect.

The good news is I had Robena Reed to follow. Robena is part of the Department of Transportation; but regarding mesothelioma, Robena lost her mother to the disease. She has now taken it upon herself to prepare for visits with her representatives and bring to their attention the facts and truths of this horrible disease.

We met with a representative of Senator Webb’s, not the senator himself; but Legislative Correspondent McKenzie Bennett (pictured with Robena here) was focused, attentive, and approachable. She asked questions, sincere and thought-provoking questions. This kept us both on our toes, and soon I found myself stepping into the conversation between Robena and McKenzie.  Having your talking points printed from the curemeso.org website prior to your meeting will ensure you have the facts that you need.  Should your staffer have questions, take advantage of this opportunity to follow up with them after the meeting.  Together, we spoke for the community, providing statistics not only specific to Virginia but specific to mesothelioma and meso patients from coast-to-coast. When McKenzie concluded our visit, I admit to feeling elated with the morning meeting. Robena and I had just concluded an audience with Senator Jim Webb, bringing mesothelioma, its community, and its interests before our representative.

Then it dawned on me that we had a group of fifty in total, all of us speaking on your behalf.

The morning on Capitol Hill was a real education, and the last place I ever planned to find myself. I found a new appreciation for being able to make a difference. It is quite humbling and, yes, inspiring that we have the ability and the means to make a difference like this. I left Capitol Hill at the end of the day a little wiser on the process in which laws are made and the government serves its people, and understanding what happens when voters talk to their representatives. It was also inspiring to watch Robena take action, to hear her speak for the meso community. I’m already thinking of next year and what I can do differently.

I also hope, next year, I am asked once again to shadow Robena. After working with her on the Hill, I know I still have more to learn.

FROM THE FOUNDATION: Your Questions (and the Doctors’ Answers) from the 2012 Symposium — Part Two

The 2012 Symposium has brought together the best minds in mesothelioma research in order to highlight breakthroughs and options in asbestos cancer and mesothelioma treatment. This year, the Meso Foundation enabled a Live Stream in order to bring the Symposium online and allow you at home to interact.

Here is Part Two of the many questions the meso warriors and survivors sent in through the Live Stream.

Q: How can a patient boost his immune system by over-the-counter drugs?

A: There are many products advertised over the Internet and radio which are intended to boost the immune system. Without exception, they’ are all fraudulent. There is no evidence that any drug will generally boost your immune system.

What you need to do is maintain your health as best as possible by eating well and exercising regularly.

Q: Is there different treatment for someone who has sarcomatoid mesothelioma?

A: Unfortunately, the treatment for sarcoma mesothelioma is poor, and the survivals are poor as well. I know of no institution that has survival rates from diagnosis that exceed one year. Such patients should seek out major medical centers specializing in mesothelioma for experimental trials of new drugs.

Q: Are there any new advances in treatment of peritoneal mesothelioma?

A: There have been important advances in the surgical treatment with removal of known disease, combined with intraperitoneal local and regional chemotherapy given as an outpatient. There are a few centers that specialize in this. I would contact the Meso Foundation’s Nurse Practitioner Mary Hesdorffer at 703-879-3820 or mary@curemeso.org for more information.

Q: Is there any other cause of mesothelioma besides asbestos?

A: High doses of radiation are also known to cause mesothelioma. There may be other causes that have not yet been identified.

Q: To follow up on Sugarbaker comment where chemotherapy gives you one year of life and surgery three years of life.

A: Those comments reflect Dr. Sugarbaker’s feelings, emotions, and hopeful anticipation. You are correct that there is no such study which supports those assertions.

Q: Can MRI be as effective as CT scan for peritoneal mesothelioma follow-up?

A: It often can be more effective, especially in heavier patients with a higher body fat content. Different oncologists prefer different test modalities. CT scan itself is safe in this context and I would let your oncologist decide.

Q: Is there any thoughts among medical professionals that stress or other factors trigger mesothelioma?

A: While we generally think that mesothelioma, like other cancers, is caused by abnormalities in the genetic apparatus, stress and other factors in the patient already diagnosed certainly make matters worse.

Q: If younger patients of being diagnosed are there any thoughts That meso be caused by something other than asbestos.

A: This is not clear yet, but it certainly is a possibility. No cause other than asbestos or ionizing radiation has been identified yet, however.

Q: What is the shortest time from exposure to disease? And how many 911 first responders have been diagnosed with mesothelioma so far?

A: Older statistics suggested that less than 1% of mesothelioma’s had a latency time shorter than 15 years. More recently the estimate of latency time has shortened and may possibly be even less than five years.

I believe that there have been two cases of mesothelioma diagnosed in the 9/11 responders, but whether they were due to 9/11 exposure will never be clarified.

Q: What is the cause of mesotheliomas in young children? Is it a predisposition?

A: The cause in young children may be asbestos, and also may depend upon a genetic predisposition. None of this is really known at this point. There are not enough cases to form an opinion.

Q: Don’t you ever feel bad putting patients on placebo even in the trial?

A: Please understand that when doing a clinical trial the physician is not certain whether the drug will help you or hurt you. Otherwise he/she would not be doing the trial. If the drug is strong and there was a chance that the side effects would be dangerous, detrimental, shorten your life,  then he should have a control group that will get a placebo. If the physician is confident that the drug is likely to help you and there is little chance of it hurting you, then he should not administer a placebo; more to the point, he should not be doing the trial.

Q:  What is the most promising new treatment benefitting meso patients now?

A:  In my opinion, the most promising new treatment benefitting meso patients right now is the advent of lung-sparing surgery for patients with pleural mesothelioma.  There is evidence from multiple centers in the U.S. and around the world that for patients with epithelial pleural mesothelioma that multimodality therapy involving lung-sparing radical pleurectomy in combination with post-operative chemotherapy +/- radiation therapy can engender survival benefits which appear equivalent to those historically provided by extrapleural pneumonectomy (EPP).

Q:  What should you do if you think you have been exposed to asbestos?

A:  Absolutely you should inform your doctor of this information, and your doctor can then initiate, if appropriate, a series of tests to assess whether you have been adversely affected by the asbestos.  It is relatively straightforward to determine if your lung function has been detrimentally affected by the asbestos exposure, as well as to whether you currently have lung cancer or mesothelioma.  What is more complicated is the issue of future screening for development of lung cancer or mesothelioma on the basis of asbestos exposure alone.  As there are no standard screening recommendations, the best option would be to consider enrolling on a clinical trial for screening of those who have been exposed to asbestos.

Q:  What is the percentage of people receiving chemotherapy  after surgical procedure such as EPP or P/D (radical pleurectomy-RP).

A: In general, if patients have not previously received neo-adjuvant (pre-operative) chemotherapy, they should receive adjuvant (post-operative) chemotherapy, as long as they have recovered sufficiently after the surgery to be able to tolerate the treatment.  The recommendation is for 4 (or more) cycles of Pemetrexed and Cisplatin (or Carboplatin).  If patients already have received chemotherapy prior to surgery, there is no standard recommendation for giving additional chemotherapy after EPP/RP, but this is an important topic for future clinical studies.

Q:  Is photodynamic therapy (PDT) available to those who have already had surgery?

A: PDT is not currently available for patients who have had prior EPP or RP/PD, but we are very interested in using this treatment to stimulate immune responses in patients who have had recurrences after definitive surgery.  For patients who have had a prior “diagnostic” surgery for biopsy, pleurodesis, partial pleurectomy, it is still possible for them to undergo RP followed by intraoperative PDT.

Q:  What is being done to educate medical students and/or general practitioners in order for them to diagnose patients in a timely manner.

A:  The best methods are the dissemination of evidence-based knowledge through medical journals, textbooks, and scientifically-based internet based resources, as well as including mesothelioma related topics in medical school curricula and in residency training for general internists and family physicians.

Q: With so few patients, are there other ways than randomized double-blind clinical trials?

A: Clinical trials are rare because they’re very expensive, and pharmaceutical companies do not wish to spend a great deal of money on treatment of a rare cancer.

So that doctors are doing exactly what you say, they are reporting small series of cases individually. Please be assured that if it’s a terrific “standout” treatment appearing in  a small series, it will be quickly tested in the largest and most appropriate series.

UPDATE, July 17, 3:52 p.m. — We discovered these missing questions in our Inbox. We’re bringing them to you today!

Q: Why doesn’t everyone get mesothelioma who has been in contact with asbestos.

A: Many cancers, including mesothelioma are multifactorial, that is, they only appear when an appropriate combination of factors comes together. For example, not everyone who smokes a lot of cigarettes gets lung cancer.

Q: Question what happens when you get only one specialist and have to take what you get?

A: You are a consumer of healthcare. Do not have to “take what you get.” If as a mesothelioma patient, you have seen only one specialist, you should get in touch with MARF to help you chart your course among the different providers, specialists, and institutions, so as to get the best treatment.

 

UPDATE, July 25, 10:37 p.m. — One more question discovered in our Inbox from the 2-012 Symposium…

Q: Is there research into chronic pain?

A: There is a great deal of ongoing research into chronic pain syndromes such as you described. Even if an anatomical cause is not identified, much can be done. Usually opiates such as morphine or fentanyl are needed, supplemented with adjuvant drugs such as gabapentin or baclofen. also very new drugs such as  antibody to the mu receptor and drugs targeting the NMDA receptor will soon be available. Many pain specialists at major medical centers can help.

FROM THE FOUNDATION: Your Questions (and the Doctors’ Answers) from the 2012 Symposium

Currently happening at the Omni Shoreham Hotel in Washington, DC and hosted by the Mesothelioma Applied Research Foundation, the 2012 Symposium has brought together mesothelioma scientists, doctors, medical professionals, mesothelioma patients and their families, and other advocates together in order to showcase research, discuss options, and raise awareness in finding a cure for mesothelioma. While many are in attendance, there are some that for a variety of reasons cannot attend. This is one reason why we at the Meso Foundation have enabled a Live Stream that brings the Symposium to you.

The Meso Foundation has assembled an exceptional agenda featuring presenters such as Raja Flores, MD, Giovanni Gaudino, PhD,  Steven Hahn, MD,  Harvey Pass, MD, Daniel Sterman, MD, David Sugarbaker, MD, Raffit Hassan, MD,  Robert Kratzke, MD, Lee Krug, MD, and many others. The theme of the Symposium is “What’s Your Question?” and attendees have taken this to heart. Here are some of the questions our special guest physicians have addressed during our first Symposium Live Stream.

Q: How did the phase I clinical trial with the WT1 peptide vaccine go?

A: Stay tuned! I will be discussing the results in detail in the afternoon session.

Q: What is the role of photo-dynamic therapy following thoracic surgery for mesothelioma?

A: Photodynamic therapy involves the delivery of a drug that sensitizes a patient’s tissues to light, and then light is shined directed on the tumor tissue. This has been a strong area of research interest from Dr. Friedberg at the Univ. of Pennsylvania who uses it to treat the surface of the chest wall after surgery for mesothelioma. The effectiveness of this technique remains unclear, and he is the only one pursuing this approach at the current time. This has been studied previously by Dr. Pass who did not find it effective, though Dr. Friedberg may have more promising results. Photodynamic therapy may increase the risk of surgical complications, and should only be done in the setting of a clinical trial.

Q: I have blood in my urine. Can meso reach the kidneys?

A: There are many causes for blood in the urine (hematuria), the most common being a urinary tract infection. Others include bleeding issues (for example, for patients on blood thinners such as Coumadin), other drug toxicities, or tumors that start in the kidney or bladder. Hematuria caused by tumor metastases is much less likely. It would be quite rare for pleural mesothelioma to spread to the kidneys. Peritoneal mesothelioma could potentially cause it by invading into a part of the urinary tract. The work up would include a urine test for infection, imaging such as ultrasound or CT scan, and possible a cystoscopy (scope procedure to look in the bladder).

Q: Is there any relationship between having an EPP and being one of the fewer than 10% of patients who develop bone cancer?

A: I presume by “bone cancer,” you mean a metastasis (spread) of mesothelioma to the bone. This can unfortunately occur to some patients with advanced mesothelioma, regardless of whether or not they had surgery.

Q: Since my husband had meso, should my daughter be tested for the BAP1 mutation – or is it even available?

A: Although BAP1 mutations occur in about 20% of mesothelioma tumors, they are usually “spontaneous” mutations, and we think familial BAP1 mutations are the cause of mesothelioma for a relatively small percentage of patients. However, if there is a history of mesothelioma in other family members, or of melanoma, particularly ocular melanoma, then it would be reasonable to discuss the pros and cons of BAP1 genetic testing with a genetics counselor. Information on this gene is just now emerging, so we don’t yet know what to do with the results.

Q: Should patients have CT, PET/CT, or MRI for surveillance scans?

A: Radiology imaging for mesothelioma is notoriously challenging, and all of our current techniques have limitations. For patients with pleural mesothelioma, I generally follow them with simple CT scans. I find PET/CT most useful at diagnosis to determine the degree of tumor spread (stage of disease), though I think it can be difficult to interpret the significance of minor changes on the PET scan when used for follow up. MRI of the chest is less optimal due to respiratory motion that occurs during the longer time necessary to acquire the images. Newer imaging techniques are needed, and are being explored such as measuring tumor volume.

Q: Is there a consensus on how often a patient should be tested for recurrence?

A: No formal consensus, but the practice is to follow by physical examination CAT scan approximately every three months during the first year, then every six months for another 18 months, then yearly until five years. There is no consensus after five years but it is unlikely that continued surveillance will be of benefit.

Q: Where would you recommend someone to be tested for possible 

A: even in individuals heavily exposed to asbestos, the risk of mesothelioma is less than 1%, so that screening of asymptomatic individuals isn’t very helpful. Also,the interval between Asbestos exposure and the development mesothelioma is estimated to be greater than 15 years again making yearly surveillance not very helpful. Those who do have clear evidence of asbestos exposure such as pleural plaques, should be looked at at least once every two years by chest x-ray or CAT scan.

FROM THE HEADLINES: International Team from the University of Hawai’i Identifies Protein Critical in Development of Mesothelioma

Former Mesothelioma Applied Research Foundation’s grant recipient, Dr. Haining Yang  (University of Hawai’i), is once again making news with the recent discovery of a protein that is activated following exposure to asbestos leading to the development of malignant mesothelioma.  As reported by MedicalXpress.com, Dr. Haining Yang, PhD, and an international team of researchers have identified HMGB1 as a critical protein in the development of malignant mesothelioma. Dr. Yang’s findings are the cover story of the July 1’s Cancer Research, one of the nation’s leading cancer research publications.

“We are very excited about this discovery and are extremely pleased that it was also chosen to be the featured cover story,” said Yang. “The next step is to translate this discovery into actual treatments for mesothelioma patients.”

This discovery into the growth of mesothelioma offers scientists an opportunity to develop specific therapies for mesothelioma patients. Mesothelioma, a malignant tumor of the lining of the lung, abdomen, or heart known to be caused by exposure to asbestos is considered one of the most aggressive of all cancers. Approximately 3,000 Americans are diagnosed with mesothelioma every year, yet available treatments have limited effectiveness. Identifying this biomarker for early detection will help shed light on developing new treatments for mesothelioma prevention and therapy.

Earlier this year this same lab worked collaboratively with others to announce the first gene associated with malignant mesothelioma BAP1. Dr. Giovanni Gaudino from the University of Hawai’i will be discussing BAP1 and its possible utility as a target for therapy and identifying those at high risk to develop mesothelioma at the Meso Foundation’s 2012 Symposium during the “Demystifying Scientific Breakthroughs” panel. It is a very exciting time for mesothelioma research and the promise for further scientific breakthroughs will be the focus of discussion at the Symposium.

The current study was an international effort and included investigators from the University of Hawai‘i Cancer Center, the John A Burns School of Medicine in Honolulu, the San Raffaele University and Research Institute in Milan, Italy, the National Institutes of Health in Bethesda, Md., and the New York University School of Medicine.

We will miss you, Larry

The Meso Foundation would like to express our deepest sympathy to the family of Larry Davis. Larry was a determined warrior and untiring advocate for finding a cure for mesothelioma. He was an avid runner who used his passion for running to raise awareness and funds for mesothelioma research. He was an inspiration to all of us lucky enough to cross paths with him. We will greatly miss our dear friend, but are comforted to know that his spirit will keep on running by our side.