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Irish
Posts:3
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Posted:06/03/2008 8:29 AM |
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My son was diagnosed with a spinal rhabdoid tumor in Oct 07. The tumor was removed and he underwent chemo and radiation. Last Thurs. they found 2 brain tumors. Does anyone have a good doctor that can help with a second opinion and are any on you surviors of this nasty cancer? Please help!!!
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mckaylasmommy
Posts:19
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Posted:06/03/2008 11:43 AM |
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My daughter was diagnosed with rhaboid tumor of the kidney in April 2007 with mets in lungs and bone in 1 femor. She's 5 months post treatment this coming weekend and doing great!!!
While she was being treated in Portland, Oregon we were also joined with 2 other rhabdoid families suffering from ATRT. Their doctor was Kellie Nazemi and she is great. Unfortunately neither of these children survived treatment, but Kellie tried everything she could and is very active in the ATRT research. She couldn't offer us much information for our daughter because it wasn't in her brain, but I'd recommend speaking with Kellie. You may be able to reach Kathy Perko, her NP, at 503-418-5172.
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owensmom
Posts:123
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Posted:06/03/2008 1:18 PM |
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We got a second opinion from Dr. Goldman and Dr. Tomita at Children's Memorial of Chicago. It was the best thing we ever did, Owen didn't have a recurrence we wanted a second opinion about a different kind of radiation. We truly believe that they are two of the reasons Owen is with us today and doing so well. They are both incredible doctors who care deeply for their patients. Owen has been off treatment for 20 months and tumor free for 23 months. They would be a great help and they know a lot of people so they might be able to refer you to someone also. Good Luck!!
Cyndi (Owen's Mom)
www.caringbridge.org/visit/owenlyons
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Amanda McEntire
Posts:1
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Posted:06/03/2008 9:41 PM |
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My son was first diagnosed with RTK (Rhabdoid of right kidney) After completing therapy, six months, tumor free, a new tumor appeared in his left lung. We were in a panic and searched for options, opinions such as yourself. Our doctor in Oklahoma City did nothing to help, but my husband and I contacted Dr. Jeffery Dome (formally from St. Jude) now at Children's National Medical Center. Also, we contacted Dr. Pual Grundy, Director Northern Alberta Children's Cancer Program. They both, along with many, many doctor's, had nothing more to offer as far as treatment, but suggested some different combinations of chemotherapy we could "try". Colby did participate in a phase 1 study at Children's Hospital in Dallas, along with other treatments. You may try Dr. Dome or Dr. Grundy. We were told they were the top researchers for Rhabdoid tumor.
Dr. Jeffery Dome
Children's National Med. Cent.
Center for Cancer and Immunology Research
111 Michigan Ave. NW
Washington, DC 20010
202-476-3898
jdome@cnmc.org
Dr. Paul Grundy
8440-112 St.
Edmonton,Alberta T6G 0E3
Canada
780-407-3760
I hope this helps in any way. Please let me know if there is anything else I could do. I know exactly how you feel...
zanebam@pldi.net
caringbridge.com colbymcentire
Amanda Angel Colby's mommy
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mkees73
Posts:13
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Posted:06/04/2008 11:17 PM |
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Go with a hospital that is with the Pediatric Brain Tumor Consortium (PBTC). They see the largest # of cases and are most up to date with current research and treatment.
We talked to several docs when Andrew was diagnosed, and were very pleased with their level of knowledge and willingness to talk to us:
Dr. Stewart Goldman, Children's Memorial in Chicago
Dr. Peter Phillips at CHOP
I'd also try St. Judes. We talked to Dr. Sanders at the time, but he has since left. Also, Dr. Mark Kiernan at Dana Farber, Boston, is an expert at ATRT, but we had a difficult time reaching him.
Michelle, m/o Andrew
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Irish
Posts:3
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Posted:06/09/2008 11:56 PM |
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Thank you for your response. My son Sean is currently being treated at Childrens Memorial Hospital and has Dr. Weinstein and his surgeon is Dr. Tomita. They are currently trying to contact other Dr.s and also looking into St. Jude. Dr. Tomita did a great job in removing his spinal tumor, but the tumors found in his brain, he says are located in dangerous spots. I have also met Dr. Goldman and he seems like a wonderful Dr. He and Dr. Weinstein both specialize in CNS tumors. I'll keep you posted and glad to hear Owen is doing good!
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owensmom
Posts:123
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Posted:06/10/2008 2:26 PM |
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We love our team in Chicago. Do you guys have a caringbridge site or a care pages one? Keep us updated.
Cyndi (Owen's Mom)
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Maria
Posts:7
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Posted:06/15/2008 7:44 PM |
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Dear Irish,
I am very sorry to hear about your sons recurrance. I just want you to know that there are survivors. My daughter was diagnosed in Aug 2003, treated with surgery, chemo, radiation and chemo. She is now cancerfree and off treatment since summer 2004.
We have a short summary in english on our website if you would like to read more.
http://groups.msn.com/OliviaSamuel/_whatsnew.msnw
Maria from Sweden.
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MatteasMama
Posts:11
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Posted:06/18/2008 5:13 AM |
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We're another Chicago family--Our daughter, Mattea, received her resection from Dr. Tomita, and has been under the care of Dr. Goldman ever since. I second Andrew Padfield's Mom, Michelle, on finding hospitals that are a part of the PBTC. We're from DeKalb, Illinois and fortunately have an extremely good Pediatrician which referred us to CMH immediately upon her initial CT results. I feel fortunate that we are so close to a hospital that has such experience in this particular field. I LOVE Children's Memorial, and will always be partial to them for the time they've given us with our daughter, but the truth is you have to do your research. Putting my bias aside, I can honestly say that right now, you're in some of the best hands possible. Goodluck!
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