In Honor of Alon Sugarman
who is Alive and Well!
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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Recommendations:
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 know 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. I recommend getting copies of the MRI's of the areas to discuss with the orthopedic oncologist described below. A bone marrow aspirate is also indicated to determine whether there is bone marrow involvement.
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. See here: http://www.findcancerexperts.com Phone: 301-770-6008, Fax: 301-231-4987
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. The new Phase III national cooperative study
for treatment of Ewing's Sarcoma is similar to the previous study under protocol
CCG-7942 described below. A copy
of the new CCG-A7983, COG-AEWS0031 treatment roadmap is here. A
PDF file of the protocol roadmap is here. The protocol and summary
information may also be accessed at the National Institute of Health Clinical
Trials database here: CCG-A7983,
COG-AEWS0031 Cooperative Study. This study compares 14 courses of
chemotherapy over 42 weeks versus a 30 week condensed protocol. It is not
known which course of chemotherapy is better, the 42 week protocol, or the
condensed 30 week protocol. I suggest that you contact your treatment
facility for details; however, the national study chair is 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: rwomer@mail.med.upenn.edu
.
If you choose not to participate in the current COG-AEWS0031 study described above, then you should be given the 42 week regimen of the current study (14 rounds of chemotherapy), or the 48 week regimen of the previous study (17 rounds of chemotherapy). Both of these regimens consist of rounds of chemotherapy that alternate between Doxorubicin, Cyclophosphamide and Vincristine on one leg, then Ifosfamide and Etoposide on the other leg. The previous study established regimen is called regimen A of Children's Cancer Group (CCG) Protocol 7942. A PDF file of the CCG 7942 protocol is here. A leg is one particular treatment session. The protocol and summary information for this previous study may also be accessed at the National Institute of Health Clinical Trials database here: CCG-7942, INT-0154, POG-9354 Cooperative Study. Results of the previous study under protocol CCG-7942, POG-9354 are here, (A PDF of these results is here) and they indicate that there is no difference in results in the compressed or extended regimens.
There is another protocol that has been studied and completed at Memorial
Sloan Kettering Cancer Center, Phone 800-525-2225, or 212-639-5954 called
the P6 protocol, which consists of only 7 rounds of high dose chemotherapy
utilizing the same 5 drugs, Vincristine, Doxorubicin, Cyclophosphamide,
Ifosfamide, and Etoposide. The Cyclophosphamide and the ifosfamide are
higher doses than the current COG-AEW0031 study. The results of this trial
proved slightly beneficial over the CCG-7942 protocol for children without
metastatic disease, and significantly worse for those with metastatic
disease. The
abstract of the study is here.
4) 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 Phone: 901-495-3300.
5) 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: 615-343-4400, Fax: 615-343-1028.
6) 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 which 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
7) 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 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 .
8) 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.
9) 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., President
The Cure Our Children Foundation
mailto:barry@cureourchildren.org
http://www.cureourchildren.org
Phone: 310-355-6046
Fax: 310-454-9592
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