{ This is an account by David Murphy, whose wife has been fighting against mesothelioma since July, 1995. }

There is a great deal of information known about asbestos exposure and mesothelioma. There is evidence that only a short term exposure can lead to mesothelioma.

My wife, at age 35, was diagnosed in July, 1995. She was accepted into an NIH clinical trial and had surgery in August, 1995, including interoperative photodynamic therapy. Chemotherapy ( three drugs) followed for several months. There is no evidence of cancer at this time.

The treatment certainly has interesting and promising concepts. The most difficult part is the need to avoid direct sunlight for 6-8 weeks after surgery. You can be exposed to artificial light indoors, but if you go outside during the day you have to cover all exposed skin to avoid a fast and extreme sunburn. My wife had her surgery in August, so coming home was quite an experience.

From what I know of the studies, and from a comment the investigator made to one of the other participants (who did not receive the PDT) there has not been a observable difference in the outcomes for those who were randomly selected for PDT from those who were not. Because the study did not enroll the number of participants originally intended as it was ended early, they may never know how the PDT affected the outcomes. Somehow they will have to figure in the other factors, i.e., I believe my wife's young age relative to the norm for meso, as well as what the surgeon described as "complete and aggressive " surgery are what have been the most important factors for her.

Also, even though hers was a Phase III trial, there really isn't a lot of history for this type of treatment. They had to figure out how to apply the laser light to a large area of the chest during surgery, but in the shortest time possible, as well as deciding exactly what color of the spectrum of light to use. If these studies had continued, they may have continued to refine the variables to a point of identifiable success.

The trial my wife was treated under at NIH is closed. The chief investigator has left NIH and is now in Detroit. I do not know if anyone other than NIH is using photodynamic therapy for meso. I know it is being used for other types of cancer.

TIME IS OF THE ESSENCE. There are various options, but you should not delay in getting something started. This disease progresses rapidly. You should check the message boards, have your doctor look into clinical trials, and investigate leads yourself. There are several messages on this board which mention various treatments being studied, including onconase and gemcitabine. The mainline publications state that meso cannot be cured without surgery, as it is important to debulk the tumor ASAP. Subsequent and additional treatment will vary. At any rate, do everything possible to get moving on treatment.

I believe we are where we are because we did not spend alot of time looking into too many possibilities, and received excellent surgical treatment before the tumor spread any further. We also believe that a strong support group such as family and friends, an aggressive desire to beat the odds, and a sincere spiritual belief are important components in success in the battle against meso. We wish you and your family well.

Mesothelioma victims should be aware of legal action that can be taken to recover damages because of the association between meso and asbestos. We know first hand that this is something that should be pursued- contact a personal injury attorney WITH KNOWLEDGE AND EXPERIENCE in asbestos claims.

Also try to find a book OUTRAGEOUS MISCONDUCT, by Paul Broeder, about the asbestos industry. You should look into his soon, as some claims by victims are processed faster by claimants who, quite bluntly, are still living. If the claims are filed if the victim has lost the battle, they get dumped into a huge pool and it may be a long time before anything gets done. Those funds might be instrumental in being able to obtain treatment. Again, do not give up, and we wish you and others fighting meso the very best.

David Murphy

(Note: Mr. Murphy's wife has also ordered "lactoferrin" : "I have read about it in a couple of places- one story specifically mentioned a woman who "recovered" from meso after taking lactoferrin. A later story in Smartbasics newsletter noted that the lactoferrin was added to her therapy, which was not doing any good, but she improved when the lactoferrin was added to the other things, which were continued. We ordered some and have been taking it since last Friday. It is supposed to be an immune system booster and we thought it might be helpful in fighting the infections my wife is experiencing.")

As of February 1, 1997, Mrs. Murphy still has no recurrence of the mesothelioma and she continues to take lactoferrin.

*  *  *  *  *  *  

Janet had successful surgery Feb. 12 at Harper Hospital ( Detroit Medical Center) re: the bronchopleural fistula.   Biopsies taken during surgery were negative! She will be discharged tomorrow and is doing well considering the complexity of the surgery.  The thoracic surgeon/oncologist who had treated Janet first at NIH and now at the Detroit Medical Center is treating mesothelioma patients. His name is Dr. Harvey Pass. We feel he is an excellent surgeon, and he certainly knows as much about meso as anyone else.  He was doing research and clinical trials on meso at NIH for some eleven years.

Very best regards, David

Dr. Pass has been at Wayne State in Detroit for the last two months. He has submitted two protocols, in collaboration with Alfacell, regarding the use of Onconase. One of his labs is completely dedicated to developing vaccination strategies for mesothelioma.

Dr. Pass has published articles on gene therapy, as well as the finding of viral DNA particles in patients who have mesothelioma. He is one of the leaders in the field of PhotoDynamic Therapy, as well as immunochemotherapy for mesothelioma. He will be continuing his work with PDT at Wayne State in mesothelioma (with new, second generation photosensitizers). The University clinic already has this treatment mechanism in place and Dr. Pass is in the process of writing these protocols for submission to the human investigation committee. These protocols would hopefully improve the delivery of PDT for patients like Janet Murphy, who was his patient when he was at the National Cancer Institute.

Dr. Pass has enrolled over 100 mesothelioma patients onto treatment protocols since 1990 when he worked at the National Cancer Institute in Bethesda. He is looking forward to discussing "some interesting data regarding the influence of size of the tumor and prognostic implications" at the upcoming meeting of the American Association for Thoracic Surgeons in Washington, DC.

Dr. Pass will be pleased to evaluate any patient with any bulk of mesothelioma that is confined to one hemithorax for potential therapies at the Karmanos Cancer Institute. Moreover, he is also interested in hearing from patients or patients families who received the first generation polio vaccines in the late 1950s, and whether or not they were exposed to asbestos.

Dr. Pass encourages all patients who are newly diagnosed with mesothelioma to explore any and all treatment options at centers devoted to the study of this malignancy.

Update on Dr. Harvey Pass' Research, 10/6/97

Dr. Harvey Pass continues to pioneer new treatment protocols for mesothelioma patients around the country. Currently he is working on the development of a new Phase I Photo Dynamic Therapy trial with Scotia Pharmaceuticals. The trial will be performed at two sites: The University of Pennsylvania in Philadelphia and at Wayne State in Detroit, Michigan. Dr. Steven Hahn of the University of Pennsylvania, along with input from Dr. Pass, recently wrote and submitted the protocol to the various review boards, and Dr. Pass expects the trials to be up and running at Wayne in early 1998.

Dr. Pass is also writing a Taxotere/Carboplatin protocol with RPR for patients who can have mesothelioma surgical resection to 5 mm.

His able team is continuing to participate in the Phase III Onconase vs Adriamycin trial for unresectable mesos.

For more information on Dr. Pass, including his phone number and address, see above.  We have received many favorable comments about Dr. Pass from mesothelioma patients.

** POSTED OCTOBER 6, 1997 **

Preoperative Tumor Volume is Associated With Outcome in Malignant Pleural Mesothelioma

Abstract

OBJECTIVES: Our objective was to analyze the impact of preoperative and postresection solid tumor volumes on outcomes in 47 of 48 consecutive patients undergoing resection for malignant pleural mesothelioma who were treated prospectively and randomized to photodynamic therapy or no photodynamic therapy.

METHODS: From July 1993 to June 1996, 48 patients with malignant pleural mesothelioma had cytoreductive debulking to 5 mm or less residual tumor by extrapleural pneumonectomy (n = 25) or pleurectomy/decortication (n = 23). Three-dimensional computed tomographic reconstructions of preresection and postresection solid tumor were prospectively performed and the disease was staged postoperatively according to the new International Mesothelioma Interest Group staging.

RESULTS: Median survival for all patients is 14.4 months (extrapleural pneumonectomy, 11 months; pleurectomy/decortication, 22 months; p2 = 0.07). Median survival for preoperative volume less than 100 was 22 months versus 11 months if more than 100 cc, p2 = 0.03. Median survival for postoperative volume less than 9 cc was 25 months versus 9 months if more than 9 cc, p2 = 0.0002. Thirty-two of forty-seven (68%) had positive N1 or N2 nodes. Tumor volumes associated with negative nodes were significantly smaller (median 51 cc) than those with positive nodes (median 166 cc, p2 = 0.01). Progressively higher stage was associated with higher median preoperative volume: stage I, 4 cc; stage II, 94 cc; stage III, 143 cc; stage IV, 505 cc; p2 = 0.007 for stage I versus II versus III versus IV. Patients with preoperative tumor volumes greater than 52 cc had shorter progression-free intervals (8 months) than those 51 cc or less (11 months; p2 = 0.02).

CONCLUSIONS: Preresection tumor volume is representative of T status in malignant pleural mesothelioma and can predict overall and progression-free survival, as well as postoperative stage. Large volumes are associated with nodal spread, and postresection residual tumor burden may predict outcome.

Address: Thoracic Oncology Section, Warren Magnusen Clinical Center, National Institutes of Health, Bethesda, Md, USA.
Source: J Thorac Cardiovasc Surg, 115(2):310-7; discussion 317-8 1998 Feb
Author: Pass HI; Temeck BK; Kranda K; Steinberg SM; Feuerstein IR

** POSTED NOVEMBER  6, 1998 **