FiancÚ with stage 4, please help
 

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04-13-13 11:10 PM
Sarenasue
FiancÚ with stage 4, please help
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Hi, my 23 year old fiancÚ was just diagnosed with stage 4 yesterday. We are due to be married in less then a month. Yesterday when we met with the oncologist he said that my fiancÚ is the first person he has ever seen with this. Where are some good centers that specialize in this? What are some good treatments? Please anything information would be greatly appreciated, he was given a prognosis of 3 years, we want the best help we can get.
04-23-13 09:52 AM
keri
re: FiancÚ with stage 4, please help
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I am sorry to hear about the diagnosis of your fiance. I was diagnosed at age 44 with neuroblastoma. I am being treated at the Mayo Clinic in Rochester MN, but I have also been out to Children's Hospital of Philadelphia and met with Dr. Yael Mosse. My doctor at the Mayo Clinic and Dr. Mosse are working together with my treatment. I have an ALK mutation and it is in our family which is part of the reason I meet with Dr. Mosse. Anyways, I would highly recommend that you seek out a doctor that specializes in treating neuroblastoma and has had other adults as patients. I am taking an oral chemotherapy drug that is still in clinical trials, so I may not be able to offer much insight into traditional chemotherapy, but I would be happy to offer any support you need. Keep good records from here on out, even if only with a 3 ring binder. It makes it much simpler to have everything together. Take it with you to appointments if possible. (or take a notebook to keep track of who you see, dates, lists of what you need to do, etc. My husband's job is to write while I listen to the doctor. Best wishes, Keri