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RECEIVED FROM DOCTORS June 5, 2002 Hi. I was quite surprised, your ovary and tube was already taken out that fast. In retrospect, it pays sometimes to be aggressive. Honestly, if I were you, I would go for the chemo. If you feel confident with Dr. Kudelka and he is the expert guy on acc, then stick with him. You are right in staying with your family in California. I am so impressed on how strong you are in dealing with this. I hope your family would even be stronger than you are. And I hope you remain as strong and as faithful as you are now. Just have a positive outlook and everything will turn out right. You are always in my prayers. Keep me updated. Manang Chato (my first cousin who is an oncologist) May 2, 2002 Thank you very much for sharing your story with me. It is quite similar to that of patients I have seen with adrenocortical carcinoma. It is a really bad disease. However, surgery worked well, and your chances of survival are quite good. Unfortunately, there is still no progress in treatment, especially no immune therapies have been developed. We are working in a mouse model on a new treatment using DNA vaccination but we are years away from clinics. I think, that the recommendation of your oncologist is sound not to give mitotane. Mitotane is quite toxic, and many patients experience side effects. In your situation the data do not support 'prophylactic' treatment. I wish all the best for you. Sincerely yours, Martin Reincke, MD Section Chief, Endocrinology and Diabetology Klinikum Freiburg Hugstetter Str. 55, 79106 Freiburg, Germany April 21, 2002 Your Drs. advise you correctly. I hope all goes well for you. In case you need experimental therapies, you should contact Dr. Tito Fojo of the NCI! Best regards! George P. Chrousos, MD Chief, Pediatric and Reproductive Endocrinology Branch Program Director, Pediatric Endocrinology National Institute of Child Health and Human Development (NICHD/NIH) Bethesda, Maryland April 18, 2002 Medico-legal considerations do not permit me to give specific medical advice over the internet. Mitotane (low dose) has been used by staff at the Clinic to try to prevent recurrences of adrenocortical cancer. I am aware of anecdotal cases of apparent success. If you are interested in exploring this issue further, I might suggest you book an appt. with myself and the staff hematologist/oncologist Dr. Ronald Bukowski. He has shared experience with such pts. Charles Faiman, MD Department of Endocrinology The Cleveland Clinic Foundation April 16, 2002 I agree with you doctor's management on every count. I have a lot of experience with mitotane, and would not recommend it at this time. Careful follow up is indicated. Indeed, the likelihood is very great that you will have another recurrence. But that recurrence may well be surgically resectable. Therapy now would be of unknown value. There would be no way to determine its effectiveness. Good luck. Keep me posted. We will have a new study in adrenal cancer soon. Enrollment will require that you have "measurable disease". Feel free to keep me posted. Tito Fojo, MD, Ph. D. National Cancer Institute Senior Investigator, Cancer Therapeutics Branch Bethesda, Maryland April 16, 2002 I received your note. If you would like to have a review of your cases by an independent oncologist with experience in this area, I would suggest Dr. Andrejz Kudelka, an oncologist at our Institution who works in the multidisciplinary endocrine neoplasia program. Dr. Kudelka is the primary investigator on a protocol currently being reviewed by the surgical oncology cooperative group to compare mitotane to placebo in the treatment of ACC. In addition, he has broad oncologic experience in ACC and other malignancies that may be helpful to you in your thought process. However, it would be important for him to see you as a patient and to have an opportunity to review the primary data before commenting. Hope this is helpful. Robert Gagel Chairman, Dept of Internal Medicine Spec. Chief, Section of Endocrine Neoplasia University of Texas M.D. Anderson Cancer Center April 15, 2002 I have fairly limited experience treating ACC, with only 4-5 patients whom I've followed. The questions that you ask are very good ones, and are controversial in the field of ACC. In particular, the issue of adjuvant mitotane treatment, that is post-op treatment without detectable cancer, is a thorny one. Although there is evidence that high doses of mitotane can cause tumor regression in some patients, there are no high quality studies to evaluate the effectiveness of mitotane in patients like you. Thus your doctor's advice to you certainly sounds reasonable. You might seek some additional guidance from the group at MD Anderson in Houston that treats ACC. Sincerely, Douglas W. Ball, M.D. Associate Professor of Medicine and Oncology Johns Hopkins University School of Medicine April 15, 2002, Your case is a difficult one . In general I do recommend mitotane for patients with recurrent adrenocortical Ca. There are no clear data proving its benefit in this situation. Nonetheless, mitotane appears to be the most effective agent available. Robert Udelsman, MD Yale University Medical School Endocrine Surgery/Surgical Oncology April 12, 2002 You should be treated with mitotane-or at least that's what I would do. The follow up schedule is reasonable, but I agree with you that additional stuff should be done. Unfortunately I do not have a protocol right now for this. If it helps, you might want to contact NCI [national cancer institute (Dr. Tito Fojo 301-496 2631)] they may be willing to take you in one of their research protocols. I hope everything goes well, Sincerely, Constantine A. Stratakis, MD Head, Unit on Genetics & Endocrinology (UGEN) Developmental Endocrinology Branch (DEB), NICHD National Institute of Health April 12, 2002 I read your letter with interest. My suggestion would be: 1) To look for serum tumor markers, i.e. CPDs, DHEA-s. 2) Perform a PET scan which can evaluate lesions longer than 1 cm. 3) Mitotane is the preferential therapy; whether it can prevent recurrences is uncertain. Best wishes, Andre J. Van Herle, M.D. Professor of Medicine UCLA Endocrinology April 8, 2002 I would recommend mitotane at least for stage IV adrenocortical carcinoma (metastatic). I would treat with up to 6 grams per day (start at 500 mg twice per day by mouth escalating the dose as tolerated to a maximum of 3 grams twice per day). The bigger question is whether to treat you with systemic chemotherapy. Your cancer has proven that it can and has metastatisized and it is certainly possible that it will again. It is such a rare tumor that we do not have lots of data on this. At this time only the NIH is performing clinical studies on this disease (Constantine Stratakis and Lawrence Kirshner at the NIH run the study). Your physician can certainly call us or the NIH. You are welcome to come to our clinic. The NIH is your best ally for new research treatments. So, I would opt for mitatane for sure. Chemotherapy would be investigational. I hope that helps, Gary Hammer, M.D., Ph.D. University of Michigan Endocrinology March 18, 2002 Thank you for your email of March 15, 2002. In answer to your question, I do not know if anyone knows the correct answer. I would recommend, however, that you receive Mitotane for chemotherapy. Some patients respond to this medicine with long term remission. Blood levels must be monitored and steroid replacement therapy given. You could call my clinical office (UCSF/Mt. Zion Medical Center at 415-4476-1070) for an appointment to see me in the next few weeks. Yours sincerely, Orlo H. Clark, MD Mt. Zion Medical Center of UCSF March 14, 2002 Thanks for your mail. What I understand from your history you were operated for a stage III tumor-positive lymph nodes ? and has had a liver recurrence. In these cases we usually give mitotane as only treatment. As you can see from our articles in World J Surgery 1998 22;605-12 and 2001 25;927-33 this treatment has not been subject to randomized trials. Such a study has been much discussed with the American College of Surgeons Oncology Group(ACOSOG), but since the tumour type is rare there are difficulties in recruiting a sufficient number of patients with stage III-IV tumors. In Europe still many centers favor this treatment. However, when given we advocate close monitoring of the plasma mitotane levels to try to avoid side effects. Each patient has an individual sensitivity to the drug and dosage should be adjusted after plasma levels. In order to obtain a possible therapeutic effect a certain threshold level may be required (a level around 14).The medication is in tablet form. Common side effects are nausea, but in higher dosage neurological symptoms may occur, so a close contact with your physician is needed. The drug further reduces the cortisol production from the residual adrenal, so daily supplementation with cortisone is needed. As you can read in the discussion in one of the papers one of the leading authorities in this disease, Dr Brennan at Sloan-Kettering, does not favor this drug; he would most likely recommend close follow-up and surgery in case of recurrence-that is the program you are on. Since you live in LA, you have another expert rather close by, Dr Orlo Clark, who is Chief of Surgery at Mount Zion Medical Center in San Francisco to have a second opinion. If you have more questions, you are welcome to contact by mail, or by phone. Yours sincerely, Hakan Ahlman Professor of Endocrine Surgery University of Goteborg Sweden March 14, 2002 Thank you for your mail. Of course, it is not easy to comment on a patient whom I don't know personally, but I can make some general recommendations by mail. In my hospital, ACC is treated by endocrinologists. They set the patients on a drug called mitotane and, in selected cases, on suramine. Due to the rareness of the disease it's difficult to find doctors specialised on it. You should obtain a second opinion of an endocrinologist or an oncologist with experience in the field of tumours of endocrine organs. As we demonstrated PET with FDG is useful for follow-up. Perhaps you should try to have a PET scan to exclude further resectable (but I don't know whether you get it reimbursed in California). If you have further questions, send me another e-mail. If you want to call me, my phone number in the hospital is +43 1 40400 ext 5530 or ext 5531 (don't forget the time-shift of +9 hrs). Best wishes Dr. Alexander Becherer University of Vienna |
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