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Discovering Second Line Treatment

Not so long ago it was axiomatic that having mesothelioma was a simple process. If you got it you did not survive. Some people lasted longer than others for various and often unknown reasons. But before the current wave of multi-modal treatments appeared the outcome was pretty clear; whether eighteen, six, or even just a few months, 95% of mesothelioma patients could count on losing their fight.

Dr. Steven J. Gould (see previous chapter about NED) was extremely fortunate to have survived as long as he did. He was also incredibly rare. Treatments available to him at the time were new, unproven and hard to obtain. Thankfully, much of that has changed. Meso treatments today are pushing back the horizon of survivability and this brings us to the novel concept of "second line treatment".

What exactly is "second line treatment" and why is it a relatively new consideration for meso patients? Second line treatment is any treatment that addresses a recurrence of a disease. Since its debut as a primary tumor in the middle of the last century, meso has acquired a number of "truths" that persist to this day. These are:

  1. meso is extremely aggressive and fast moving;

  2. meso doesn't metastasize easily;

  3. meso is untreatable;

  4. if you treat meso aggressively you are sacrificing quality of life for virtually no gain in survival.

These "truths" about mesothelioma can be attributed to several facts:

  1. most meso patients were diagnosed too late,

  2. most meso patients never survived their initial tumor

  3. and most never lived long enough to test the validity of most of the known facts about mesothelioma.

Like everything in life, the more you learn, the more you discover you don't know. Let me give you some examples. Patients who were treated with the new protocols over a decade ago are now living 5 to 10 years post-treatment. 1 The new protocols consist of some form of multi-modal intervention involving surgery, chemotherapy and radiation and, in some cases, other more novel approaches like gene therapy, immunotherapy etc. Aggressive treatment of peritoneal meso, which involves debulking surgery accompanied by heated chemotherapy lavage of the belly, has greatly extended both the survival of meso patients and a higher quality of life. 2 Tri-modality treatment for pleural patients, surgery (EPP and in some cases P/D) combined with heated chemo lavage and followed by radiation, has done the same for pleural patients. 1

These longer living patients are now encountering things that run counter to the known "truths" about meso. The first truth, or rather non-truth, is that meso cannot be effectively treated. It can. The second so-called "truth" is that meso doesn't metastasize. Unfortunately, we are discovering that this is a fallacy too. A dear friend of mine and fellow patient succumbed to a metastases of meso in 2004. We had EPP surgery in 2001 just a few months apart.

Lastly, we are learning that not all mesothelioma tumors are equally aggressive. In my case, for example, it is highly likely that a small amount of tumor survived the original treatment. It became visible in routine monitoring a year later. Because of its rather non-aggressive behavior, my doctors and I had trouble accepting this for what it was, a recurrence. Instead, we explained it as irritation, infection etc. etc., since its characteristics were so slow moving and biologically inert. My case and others have also exposed this "truth" as false. Meso, for reasons that are not yet understood, does perform less aggressively in some individuals.

The brave new world of treatment for mesothelioma has brought me to a watershed. I have lived long enough to require further treatment for this cancer. I am now about to undergo my first attempt at "second line treatment". As I write this, I am in Boston within hailing distance of the famous Brigham and Women's Hospital. It was here that my EPP surgery was performed almost 56 months ago. On June the 9th, one day after the fifth anniversary of my diagnosis, I will be undergoing surgery to remove an orange sized tumor from the area in the middle of the chest called the mediastinum. It is located adjacent to the heart, just above the stomach and adjacent to the esophagus.

Several outcomes are possible as I again enter relatively uncharted territory. If the tumor is entirely resected, the surgeon will leave behind several small boundary markers (metal clips) to allow a radiologist to plan a treatment course of computer guided and focused external beam radiation (either IMRT or SBRT). However, it may not be possible to remove all of the tumor if it has attached itself to vital structures in the area. In this case, I will be receiving additional treatment that is not readily offered elsewhere for cases of meso. The surgical team will include a brachytherapy radiologist who will oversee the implantation of radioactive iodine "seeds" at the locations of residual tumor. In this case, no external radiation may be planned except to irradiate the incision sites to prevent tumor seeding.

In any event, I fully expect to be told that a follow-up course of chemotherapy is advisable. Should this happen, I will also be on new ground. I remain chemo naive for drugs like Alimta, Iressa, Tarceva, Avastin, SAHA and others. If measurable tumor remains after the surgery I might be eligible for clinical trials of products like SAHA and Avastin. If not, I can receive a protocol of Alimta in combination with other existing chemotherapies, an effective treatment for over 50% of meso patients. Alimta was a drug that was not available to me five years ago.

As you can see, a new chapter in my battle with mesothelioma is beginning. Having accepted that I am not "cured" of meso, I am resolved to continue the fight every day, week by week, month by month, availing myself of new treatment options as they become available. Not only am I doing this to survive but I want to prove, for those that wish to see the evidence, that  mesothelioma, while unconquered, is not untreatable. As long as I am alive, I will support the effort to find new interventions that will make "second line treatment" a common option for those who will need it. Then, if it proves necessary, we will begin the battle to find the third and fourth line treatments of tomorrow.  If we can't wipe it out, at least we can make the disease chronic rather than automatically fatal. That alone could rewrite the book of "truths" about mesothelioma.

Sincerely yours,

Klaus

PS. I will continue writing this journal after I recover from my surgery. My thanks to all of those who have voiced their support, affection and prayers. I truly appreciate them.

Footnotes:

Data supporting the above statistics will shortly be available on MARF's new website at www.marf.org in the "Understanding Mesothelioma" section.

This data will be available soon in the "Treatment" section of the MARF web site under Peritoneal Meso.

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