Cancer

It was determined this past May that my wife has a brain tumor (GBM). It is cancer and she has already been through 6 and 1/2 weeks of radiation and is currently taking chemo 5 days a month. Up to this point only the host of this forum was aware of this. The reason that I am posting this is to see if anybody out there has been through this and might have any help on treatements or doctors they have had in the past...good or bad and any help in suggestion during chemo as far as nutrition and the nausea and vomiting that occurs. I am open to any help that any of you might have as I am learning about this cancer every day and the outlook is not very good as surgery is not possible on this type of tumor..Thanks ahead of time for any comments you might have....

Oh my dear Robert. I will immediately put you and your wife in my prayers.

The single most important thing that you can do is get her to a cancer center that specializes in treating this form of cancer. Your doctors will tell you that they can treat it here, but Louisville does not have a serious cancer center.
The best cancer center in the world is M.D. Anderson in Texas. I would start there. They will be able to refer you to a better place if that is not a cancer the specialize in treating.
Six years ago my family just went through this when one had a brain tumor. The doctors here said they could handle it. That was not true. If we had stayed here for treatment, he would be dead now. We found the two best hospitals in the country for treating his brain tumor, and because of their skill he is alive today.
There are no cancers today that have a 100% mortality rate. That means everyone can be beat if you fight it the right way.

I respectfully disagree with Ron, I think there are several local resources that can help you. A lot has changed in 6 years. We have several physicians in town with extensive expertise in various types of cancer. There are several physicians who have trained at MD Anderson, Sloan Kettering and other excellent Cancer Centers. Ron is spot on in that you do need to see someone who is familiar with the specific type of tumor your wife has, you just may not need to go as far away as you think.

If you have not seen Todd Vitaz or Joe Finizio with Neurosurgical Institute of Kentucky (NIKY) I would start there. NIKY is the clinical practice of the Department of Neurosurgery at the UofL Medical School. The main office number is 583-1697. Louisville is fortunate to have several good Oncologists and surgeons. The medical community here is also usually good about ensuring that the patient gets to the best source of care whether it is local or not.

I wish your wife and you the best.

Peace,

Doug.

Robert, I'm so sorry to hear about your wife. I worked briefly with an attorney in Lexington who also had a cancerous tumor in her brain. She was diagnosed about a year and a half ago and told that she probably would not live much longer. She sought treatment somewhere in Texas. (I'm assuming it is the same facility that Ron speaks of, but do not know that for sure). She never stopped practicing, except for her trips to Texas and is doing wonderful now. While I agree with Doug that there are excellent doctors locally, I just wanted to pass on her story. Good luck and best wishes for you and your wife.

The James Graham Brown Cancer Center is world-renowned, and when my brother's doctors' diagnoses made him worse than better, he went there for his Hairy Cell Leukemia, and after their treatment, he has been in remission for several years.

Here's a link:

http://www.browncancercenter.org/patients/headneck.aspx

My prayers will be with you and your wife, Robert.

I'll second the recommedation for Dr. Finizio. He is technically excellent, personally empathetic and extremely honest in his patient dealings. In my job, I have seen what a doc with no personal or communication skills can effect patient outcome. My prayers for you and your family, Robert.

I would recommend a trip to Gilda's Club Louisville on Baxter Avenue. They are a wonderful place loaded with advice on everything you have asked. Beside the information, it is a place for those struggling with cancer and their family members to connect with others that either are going through this or have made it successful through this terrible time.

My thoughts and prayers are with you and your wife. Gilda's Club can be contacted:
502 583-0075
http://www.gildasclublouisville.org

Amy

Thanks for all of your kind words and sugestions I will look into them ASAP.

We do have tremendously skilled doctors here and the James Graham Brown cancer center is a fine facility to receive chemo and radiation. But, the fact remains that if you want to dramatically increase survival rate for a serious cancer like a highly malignant brain tumor, you need to go to the places that specialize in the treatment. There are skilled surgeons here, but I'd rather go to someone who does 20 of these in a month rather than 20 in a career.
When the person in my family was diagnosed with a brain tumor, our neurosurgeon said that he could do the surgery, but if it was his brain he would go the surgeon who teaches everyone else how to do it. He gave us the name, we went to that surgeon, and my family member is alive today because of it.

For a glioblastoma, I would start here: http://brain.mgh.harvard.edu/PatientGuide.htm

Could you please tell me who they went to...

We saw Osama Al-Mefty at the University of Arkansas Neurosurgery Center. He pioneered surgery for skull-base tumors. That might not be the place for a glioblastoma, but it's worth checking. He is one of the best brain surgeons in the world. For radiation and chemo we went to Boston to Mass General. That is in the link I included.

Here is one for Al Mefty: http://www.uams.edu/neurosurgery/faculty/al-mefty.asp

Thanks