What do I do?

[Jennifer]

I am new to this site and am hoping you can help me. I am 23, and have been battling Melanoma Skin cancer for almost a year now. It was in my lungs, arm, leg, and lymph nodes. After surgery, chemo, and Interleukin-2, it looked like I had won the battle. Me and my loved ones cried tears of joy... Only to find out a week later that the cancer had metastasized to my brain and spinal cord. My oncologist says that the brain tumors are small and not worrisome. But the tumor in my spine is inoperable and "if there is something in this life I want to do, then I need to do it now." I just finished 2 weeks of full brain radiation and radiation to the spine in combination with the chemo pill. It will be approximately 3 months till I know the results of the radiation. Meanwhile... I want to get a second opinion and am willing to travel anywhere. I have been researching neurologists but don't know how to know which doctor to go to or where to go. Can anyone help me?

[tc]

Dear Jennifer,
I am so sorry to hear your news. This is what I would do: Call the National Institutes of Health (NIH) in Bethesda, Maryland. See what study they want to enroll you in. I enrolled in the Central Nervous System Tumor Study and saw Dr. Howard Fine, neuro-oncologist. They are VERY thorough and they see spine and brain tumors every day all day, so they would be a great source to give you another opinion and/or create a treatment plan for you. By the way, everything done at NIH is totally free. It is paid for by government grants. You have to pay your travel expenses for your first trip there, but on any subsequent visits you are reimbursed for your travel and hotel and you get a stipend for meals (you must use their travel agency though). If you want more info, please ask. Everyone was SO nice to me at NIH. Just be prepared to spend lots of time waiting to see the doctor, because they are VERY thorough and spend lots of time with each patient. They examine you and have a whole team look at your MRIs. They actually provide snacks and drinks while you are waiting! And you get free valet parking. They try to make your travel as easy as possible. Please look into this. Please post an update on your situation when you can!
God bless!
Teresa

[throeback]

E. Antonio Chiocca, MD, PhD
Chairman and Dardinger Family Professor

Deptment of Neurological Surgery
THE OHIO STATE UNIVERSITY
UNIVERSITY MEDICAL CENTER

PHONE: [phone]
FAX: [phone]
E-MAIL: [e-mail]

Do give him your films, in fact call his office today. He is the head of Neuro Surgery at OSU... Millions of dollars in research moneys follow him around. I have a friend who is a doctor at Ross Heart Hosp. when he found out about me he made the introduction to Antonio. If you are not sure about following through just do a quick internet search. Time Magizine has done several stories on Dr. Chiocca he is really that amazing. Please tell him Ron Greenen sends his best. This man is Gods special gift to our world. I wish you welll Jen keep your chin up.

Ron

[peilynne]

Dear Jennifer,
I am truly sorry for everything you are going through. Never give up, stay strong and fight hard. I think the above posts gave you some good advice, do whatever it takes. I wish you all the best, Lynne

[Linda51]

Hi Jennifer,

I'm sorry you are going through all of this. Never give up on hope. I'd suggest that you send your latest MRI's films to Dr. Jallo at Johns Hopkins. He is one of the best in this field and he will look at your MRI for free and get back with you in no time. If he can't help you he will let you know and just in case you can't go there he may be able to tell you of a good surgeon near you. The only thing i'm thinking since you just had radiation if they do surgery that could make it hard for them to get the tumor out. On the other hand there has been inexperience doctors that will see an sct patient and tell them their tumor is inoperable. Some of those patients have found our website got in touch with Dr. Jallo and had good results. I'm not going say either way how it will be especially since your tumor has metasized from somewhere else but for an opinion it wouldn't hurt to consult with Dr. Jallo.

I wish you the very best and please keep us posted. Thoughts and prayers to you and your family.

George Jallo, MD
Division of Pediatric Neurosurgery www.neuro.jhmi.edu/pedsnus
Johns Hopkins Hospital
600 North Wolfe Street, Harvey 811
Baltimore, MD 21287
Tel [phone]
Fax [phone]
[e-mail]

~Linda

[qhcrazy]

Hello Jennifer, welcome to the forum. I can offer where I had my surgery and it was at MCG Hospital in Augusta, GA. My Dr. was Dr. Mark Lee. He did wonders on me and left my motor functions intact. I had a large spinal cord tumor, which was an ependymoma from C7-T4. I would be happy to provide you with his number if you are interested.

[Jennifer]

Thank you so much to all of you for such great information!!! You have been more helpful than you know. I am so thankful that I found this website!

And, yes, I would love to get Dr.Lee's information if you still have it. My email is: [e-mail]

Thank you again!!!

-Jennifer