43 Year Old Woman Has High Hopes for Lovastatin. Cleveland, OH

Dear Mr. Worthington,

I first stumbled onto your web site in July of 1999, and at that time I was still reeling from everything that was happing to me, so I just made a copy and put the sheet of paper into a folder to read later.

Well last week "later" finally happened, when again I stumbled upon that paper I had copied back in July of last year. This time when I looked at all of the information and potential resources that were available on your web-site, I could hardly wait to log on. Judging by all of the information and people profiles, it is clear to me you have been a God send to many desperate people, and I would like to add myself to the list people who are grateful for the work you are doing.

Now, if I may backtrack a bit........I am a 43 year old, female, Quality lab technician. On May 14, 1999, I was diagnosed with lung cancer. A cytology report on fluid removed from my left lung, showed malignant cancer cells, and what appeared to be adenocarcinoma. After this diagnosis I went through a staging process that would include two surgeries. The first surgery was on June 2, to remove a 15cm tumor (as well a complete hysterectomy) from the pelvic area. This tumor turned out to be benign. The second surgery performed on June 28,1999, was a video assisted thorocentisis, with a biopsy, then followed up with a pleuraldesis. The tissue samples extracted from this surgery as well as the photographs taken, verified the suspected diagnosis of Malignant Pleural Mesothelioma. I have been aware since the second week of July 1999, that I have MPM. Prior to my first surgery to remove the benign tumor, I had a very "reputable oncologist", who recommended that I immediately undergo 6 months of chemotherapy to shrink this tumor, prior to removing it. Seeking a second opinion from a surgical oncologist, my husband, and I were told that this size of tumor was not all that uncommon, so we proceeded with a "surgery first" option. Had we decided to follow the advise of the first "reputable oncologist" I could have gone through 6 months of unnecessary chemo .

After searching and receiving several references, I found and switched my care to a different oncologist, who is now and has been my lead physician, since mid-June. After a total of three thorocentisis and the removal of 700cc - 2 liters of fluid from my lung, it was upon his advice that we try the plueraldesis. This procedure has proved effective in stopping the accumulation of fluid. I have been evaluated to determine if I could withstand the tri-modal treatment approach; which includes surgical lung removal, chemo, and radiation. But, because of very limited lung capacity on the pulmonary function test, it has been determined that I would be at too much risk for the operation. Thus with my treatment options being limited as they are, we have chosen to try some of the alternative medicine approaches.

I first became aware of Lovastatin, by searching through all of the info I could find about mesothelioma, treatments, clinical trials and alternative treatments available on the internet. Lovastatin is mentioned quite frequently as one of the few drugs that has shown some preliminary positive lab results (on mice). Also the fact that this is a drug that is available and FDA approved, (for lowering cholesterol ) makes is a lot more accessible, than some of the drugs that are still at clinical trial stages.

My doctor, upon my request prescribed the drug for me. He did advise me that the drug could possibly have some adverse affects on my liver, and advised me against the use of alcohol while taking this drug. I also have found on a separate web-site information, stating that Lovastatin can reduce the Coq10 in your system, and this should be supplemented while taking it. However, with all of the information available, this drug seems to offer the most potential with the least side affects, and is more available than most alternatives.

I am currently taking lovastatin (3months), essiac tea, vitamin C in mega doses, anti-oxidants, and major doses of prayer and faith. In addition, I spoke with my doctor regarding pulmonary rehabilitation, and whether this would help to improve my stamina or at least help to maintain what I have. After some searching, I was able to find a program through a local hospital, (approved by my health insurance). This program includes cardiac and pulmonary patients at various stages of recovery, and encompasses educational as well a supervised/monitored physical activities (treadmill,bikes,etc) three days a week. While reading through the patient profiles, I recalled the stories of Bob Sullivan, Sandy Holland, and Janet Murphy. These stories and people were of great interest to me.

The Lovastatin, and photodynamic therapy as well as the pleurectomy, all seem to have great potential. I have also been looking into the clinical trials of Onconase and su5614. I will continue to search all avenues available, because I realize that I am my own best advocate, in terms of searching for something that might save my life. I find myself trying to, not only educate myself, but also I am responsible for educating my family, my friends and on many occasions my doctor as well. I am blessed to have a wonderful support system, with a wonderful loving husband of 10 years, and a very close and loving family (all of whom live in other states). I stopped working in June of 1999, when I had my first surgery.

To date I have not joined any cancer support groups. But as I become more informed, I am beginning to feel somewhat of an obligation to get more involved in helping other victims find some of the peace I have been able to find through my faith, and through the empowerment of knowledge. I find that my sense of humor is essential to my survival, and amazingly enough I have found many things to laugh about. It's funny, some days I call it faith, and some days when the fear creeps in, I wonder if it is merely some form of major denial. Even when I have tough days ( and there has been a few), I consider myself blessed, because when I look back and see that one set of footprints in the sand, I know who they belong to, and that I am not alone. Hopefully the information I have provided you with will help others.

In closing, I again want to express my gratitude for this forum to discuss and read stories of other people who are dealing with this devastating cancer. It has been approximately 9 months since my diagnosis, and I thank God everyday for my life and I try to live each day as though it might be my last. I do have moderate chest pain and shortness of breath, and on occasion I allow myself the human emotions of fear and sadness. But I can honestly for the most part I consider myself blessed, because I still have hope and I believe in miracles. One of my husband's co-workers told me: KNOW GOD = KNOW HOPE ......No God = No Hope

*** POSTED FEBRUARY 24, 2000 ***