I am sorry to hear about the diagnosis of your child. I have developed this page to assist you in the initial hours and days, and I am available to speak with you to assist you at any time by dialing my voice mail pager, and leaving a message with your phone number and a time to call. The phone number is 310-355-6046. Feel free to call if you would like, as we talk to parents in your same position regularly.
I have a number of recommendations but please remember that I am not a doctor, and all information should be discussed with a pediatric oncologist. I am a parent advocate, researcher, and former CEO of a pharmaceutical manufacturing company.
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1) It is very important to have an MRI of the area, a CT of the lungs, a full body scan and an MRI of the brain immediately after diagnosis so that it is known whether the tumor is completely localized or not. With Ewing's Sarcoma, a full body scan is generally a Tc-99 bone scan; however, in some cases a full body CT or MRI may also be desirable to identify, quantify or rule out soft tissue metastasis in the rest of the body. The place where the cancer originated is called the primary tumor. Metastasis means cancer cells have spread through the bloodstream to other parts of the body or to the bone marrow. A good place to begin basic research on these subjects is on the National Cancer Institutes' Metastatic Cancer: Questions and Answers Web page, or you may call 800-422-6237 to talk to an information specialist. The National Cancer Institute also offers live, online chat at https://cissecure.nci.nih.gov/livehelp/welcome.asp. Also, our foundation's home page offers numerous research links and phone numbers for your convenience. I recommend getting copies of the MRI's of the areas to discuss with the orthopedic oncologist described below. A bone marrow biopsy, which involves the removal of a sample of bone marrow, is also indicated to determine whether there is bone marrow involvement. For a more detailed explanation, see the Mayo Clinic's Bone Marrow Biopsy and Aspiration Web page. (The Mayo Clinic has three locations: In Scottsdale/Phoenix, Arizona, call 480-301-8000; in Jacksonville, Florida, call 904-953-2000; and in Rochester, Minnesota, call 507-284-2511.)
2) The confirmation of the diagnosis of Ewing's Sarcoma may only be made after a biopsy has been taken and read by a qualified pathologist, a type of medical doctor. It is highly recommended that a second licensed pathologist view slides from the biopsy as these slides are often difficult to read, and mistakes have been made. All treatments will generally be based around the diagnosis made by the pathologist, so it is imperative to get at least two opinions on the slides. Here's where you can find National Cancer Institute-designated cancer centers to get pathology and oncology second opinions. You can also call 800-422-6237 to talk with an information specialist from the NCI's Cancer Information Service, in English or Spanish, within the United States, Monday through Friday, 9:00 a.m. to 4:30 p.m. local time. If you have questions relating to patient information or treatment, contact the Public Inquiries Office at 301-435-3848 or by e-mail at firstname.lastname@example.org. The American Society of Clinical Oncology maintains a searchable database of oncologists. You may search by location, specialty, or other criteria. You may also contact the society by Email: email@example.com; Phone: 571-483-1780 or 888-651-3038; or FAX: 571-366-9537. The National Childhood Cancer Foundation Children's Oncology Group offers parents and family members information about types of childhood cancers and treatments. The phone number is 800-458-6223, or Email your questions to: firstname.lastname@example.org. The R.A. Bloch Cancer Foundation Inc. can refer cancer patients to institutions that are willing to provide multidisciplinary second opinions. A list of these institutions is available at http://www.blochcancer.org/articles/xtrnew.asp. Or you can call their foundation at 816–854–5050 or toll-free at 800–433–0464.
3) It is absolutely essential that the recognized chemotherapy, surgery, and radiation protocol for Ewing's Sarcoma be started immediately, and followed carefully until completion. From 1998 to 2008, a large, nationwide, Phase III study called the CCG-A7983, COG-AAEWS0031 was conducted comparing a 42-week chemotherapy regimen with a condensed, 30-week regimen. As of 6/2/08, based on that ten-year trial, the condensed version of the protocol is now the most effective treatment. Please see our foundation blog article here: http://cureourchildren.blogharbor.com/blog/_archives/2008/6/3/3726262.html. A copy of the CCG-A7983, COG-AEWS0031 treatment roadmap is here. The national study chair was Richard Womer, M.D., Children's Hospital of Philadelphia, Division of Oncology, 324 South 34th St., Philadelphia PA 19104, Phone: 215-590-2229; Fax: 215-590-4183, Email: email@example.com Results from the CCG-A7983, COG-AEWS0031 study were presented at the American Society for Clinical Oncology Meeting on 5/31/08. The summary information may be accessed at the National Institute of Health Clinical Trials database here: CCG-A7983, COG-AEWS0031 Cooperative Study. As stated earlier, the condensed, 30-week regimen is now the most effective treatment. I suggest that you contact your treatment facility for details, however.
Dr. Womer reported to The Cure Our Children Foundation on 1/15/09 that the condensed version of the study will remain the "standard of care for localized Ewing sarcoma in North America until a successor study shows that there is something better." At Children's Hospital of Philadelphia, the condensed version of treatment is used for patients with metastases, too, Dr. Womer said.
Children's survival rates are raised by 20 to 40 percent if their cancer care is coordinated by pediatric oncologists and delivered at comprehensive, multidisciplinary cancer centers that follow established clinical trial protocols, Memorial Sloan Kettering reports on its Web site. Standard chemotherapy medications in Ewing's Sarcoma treatment include Vincristine, Doxorubicin, Cyclophosphamide, Ifosfamide, and Etoposide, according to the Memorial Sloan Kettering's Cancer Center's Web site. (To contact Memorial Sloan Kettering's Cancer Center, call 800-525-2225 or 212-639-5954.)
4) If the initial diagnosis includes metastatic disease, that is tumors in multiple locations, consider having stem cells drawn immediately to leave open the option of high-dose chemotherapy with autologous (your own) stem cell transplant at the conclusion of the entire chemotherapy protocol. High dose chemotherapy with stem cell transplant is an important additional effective treatment available for high risk cases. Metastatic disease is normally considered high risk, and most reputable oncologists recognize that therapy in addition to the national protocol is required for best results. One aggressive high dose chemotherapy and stem cell transplant from City of Hope National Medical Center is here: http://www.cureourchildren.org/stemcell.htm. One more aggressive protocol for metastatic disease is the EURO-EWING-INTERGROUP-EE99 Protocol. This started off in Europe, and is now available here in the United States. The United States Protocol site is here, and the European Protocol site with a visual road map is here. I suggest that you contact the facility that is closest to you for details; however, the protocol chairman is Alan W. Craft, M.D., Phone: 011-44-191-202-3010, Fax: 011-44-191-202-3022 (United Kingdom), Email: AW.Craft@newcastle.ac.uk . **Update 1/23/09: Dr. Heribert Jürgens, of the Münster University Hospital, Children's Hospital, Department of Paediatric Haematology and Oncology, reports that that EURO-EWING 99 trial remains open and is recruiting. "Regarding results, we are unfortunately unable to provide any information at this point as the trial is still recruiting and results are therefore blinded," he e-mailed in response to inquiries from The Cure Our Children Foundation. Information about Children's Oncology Group regional cancer trials and participating clinics in the United States can be found here.
5) A new national randomized controlled trial is still in development, and no Children's Oncology Group study is currently open, Dr. Womer reported to The Cure Our Children Foundation on 1/15/09. A pilot study adding Topotecan-Cyclophosphamide to Regimen B has opened and closed, but its purpose was to show feasibility, not efficacy (i.e. survival). Parts of that pilot will probably find their way into the new study. There is a COG study for patients with lung metastases only that is part of the EURO-EWING 99 study; it randomizes patients, after initial chemotherapy, between standard chemotherapy and high-dose chemotherapy with stem cell rescue, or transplants. It is temporarily closed for evaluation of toxicity, Dr. Womer reports.
Meanwhile, a number of clinical trials and studies are ongoing at Memorial Sloan Kettering Cancer Center; Phone 800-525-2225 or 212-639-5954.
About 75 percent of children with cancer in the United States will be treated in a clinical trial. More information on pediatric clinical trials can be found on the Memorial Sloan Kettering's "Importance of Clinical Trials" Web page. Clinical Trials.gov offers a searchable database of clinical trials. The American Cancer Society offers an explanation of the way clinical trials work as well as other useful information on clinical trials on this Web page: Clinical Trials: What You Need to Know. The American Cancer Society also offers a Web page on the issue of insurance coverage of participants in a clinical trial.
6) There is at least one study that says that treatment results are better for sarcomas at a recognized sarcoma treatment facility. Generally, the nurses at a pediatric cancer facility do make all the difference, because they are very well trained and can deal better with issues such as nausea medication and the other things that come up. My recommendation is that you go to a recognized facility that has a pediatric cancer treatment ward/center. A list of the comprehensive cancer centers is on my site and is also here: http://www.nccn.org/members/network.asp . If treatment has not started and your health insurance is limited, it is suggested that you contact your state or county welfare department or St. Jude Children's Research Hospital for assistance: http://www.stjude.org/. The phone number for general information at St. Jude is 901-595-3300. Parents who want to know if their child is eligible to be treated at St. Jude should have the child’s physician call this toll-free number: 866-278-5833.
7) With regard to orthopedics, you definitely need to consult with an orthopedic oncologist. Most of the orthopedic oncologists have done pediatric work, and there is no sub-specialty except the orthopedic oncologists at the Children's Hospitals, for instance, have a lot more experience in pediatrics. Your pediatric orthopedist can assist the orthopedic oncologist in surgery if you want. You have control of this issue. You're the "customer". The society that the orthopedic oncologists belong to is called the Musculoskeletal Tumor Society. The web site is: http://msts.org , Phone: 615-775-2337, Fax: 615-469-2208.
8) Usually, the 12-week point in therapy calls for consideration of additional radiation, and/or other non-surgical techniques and/or surgery as an additional therapy. Sometimes these techniques are implemented earlier, but usually not later. Which techniques to use depends on a number of factors that can be discussed with your oncologist and orthopedic oncologist. I can discuss the many treatment options with you and provide you additional research or other parent resources to help you make your decisions. There are benefits and disadvantages of each option, and you should discuss this with your pediatric oncologist also. Second and third opinions regarding any potential procedure are extremely important because surgical and radiation techniques and practices vary widely between different facilities. See the orthopedic section of our front page at: http://www.cureourchildren.org/.
There are five different basic types of radiation. Each has its benefits and disadvantages, and each should be discussed with your oncologist.
|a. Conventional Radiation Therapy: A beam of radiation
is directed through the skin to the cancer and the immediate
surrounding area in order to destroy the main tumor and any nearby
cancer cells. Receiving conventional external beam radiation is
similar to having an X-ray.
Society for Radiation Oncology (ASTRO) answers questions about
radiation therapy. Call 703-502-1550 or (toll-free) 800-962-7876, or
b: Intensity Modulated Radiation Therapy: IMRT is an advanced mode of high-precision radiotherapy that utilizes computer-controlled X-ray accelerators to deliver precise radiation doses to a malignant tumor or specific areas within the tumor. IMRT allows higher radiation doses to be focused within the tumor while minimizing the dose to surrounding tissue. The Radiation Oncology Department at the University of California, San Francisco, is a leader in the field. The phone number for the oncology department is 415-353-7175.
c. Proton Radiation Therapy: Protons deposit their energy over a very small area, which means this type of therapy can be used to target high doses of proton beam therapy to a tumor while doing less damage to normal tissues and causing fewer side effects. Proton beam therapy is available at only a few facilities in the United States. The James M. Slater, MD, Proton Treatment and Research Center at the Loma Linda University Medical Center treats more patients worldwide than any other such facility. Call 909-558-4288 or (toll-free) 800-776-8667. You may also register online for a consultation.
d. Gamma Knife Treatment: Gamma Knife "surgery", used primarily in the brain, is an extremely precise radiation instrument that minimizes damage to healthy tissue. Information on Cedars-Sinai Medical Center's Gamma Knife treatment can be found here. For a physician referral, call 800-233-2771. Cedars-Sinai also offers a referrals web page here.
e. Stereotactic Radiation Therapy: Stereotactic radiation therapy delivers a very precise, intense dose of radiation "with a high expectation of tumor control and a low risk of toxicity," according to the State University of New York Upstate Medical University's website. Call 315 464-5540 or (toll free) 877-464-5540. The medical university, located in Syracuse, also offers free, confidential, 24-hour phone service staffed with registered nurses to answer questions or offer advice. Call 315-464-8668 or 800-464-8668.
9) It is important to contact your child's school in writing to request an Individualized Education Plan (IEP) so that the child receives educational services during treatment. School districts are required by both federal and state laws to provide free educational services during treatment. An example letter requesting an IEP and free educational services is here. Here is a PDF of the example IEP letter. School districts are required by federal law to provide home school services either through teacher-tutors, or teachers from their hospital school program. A particularly helpful resource for parents trying to understand special education law and the rights of children with disabilities can be found here: Wright's Law Education Advocates Home Page. You might also find these pages helpful: Wright's Law IDEA Statute and Regulations; Wright's Law Case Pleadings and Legal Documents. To sign up for a free free online newsletter about special education legal and advocacy topics, click here. Our Special Education and Disabilities resources page is here: http://www.cureourchildren.org/specialeducation.htm.
10) Ewing's Sarcoma is a very, very aggressive disease. At every point where you have a choice, it is wise to weight heavily on the more aggressive treatment option. Please call me at your earliest convenience to discuss.
Warmest Regards....Barry Sugarman, B.S.ENGR.,
The Cure Our Children Foundation
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