Second opinion for when it comes back

 With all the commercials on t.v. for cancer facilities, I wonder if they all are standard treatment.  We want to stay close to the neuro onc. and do trust her, but what I know about my son "before the cancer was found with brain bleeding because of another issue" and the side effects of avastin causing internal bleeding and other meds, it is terrifying me.  So far he was on Temodar and going on 3 months off of it very well. Thankyou God. We need to know where there is a brain cancer facility we can go to for a second opinion when it comes back.  We go to Mass General Hospital in Boston, Massachusetts. We just need to know another excellent facility that might give us options, explain why, what each different treatment has for side effects, and whether it will block us from further treatments in the 2nd,  3rd, or final  phase.  God, it is because of all I  "don't"  know that is frightening me. Is there such a neuro-onc. that would tell me all I need to know and give us something to hang onto.  We are inteligent adults.  I do not like the one extreme of being told you have cancer, going through the treatments, and being told there is nothing left to do.   IT IS THE " life in between that counts and I want to relax knowing as much as I can about the neuro-onc.s plan for my sons future."  I am part of this too.  Forgive me.  It keeps bubbling to the surface every so often.  I hope and pray all will continue to be well for all people underging what needs to be done and their families.  J. 

J.

Take a deep breath and let it out. The "not knowing" and the "what ifs" can weigh heavy on anyone. I can only speak on my experience as I am the patient. I did get a second opinion but....I was not waiting for it to come back. I was already asking options to my N.O. Knowledge is power. Since you are currently comfortable with your N.O. it might help to ask what clinical trials are currently being conducted at your hospital. Myself I have already done this. Also please look atwww.cilinicaltrials.govYou can research to figure out what trials are going on in your area. I still go in every 3months to go through get my checkup. While in I ask my N.O. are there any new studies going on? Any things showing promise? I am coming up on 4 yrs fighting this and have been through surgery,radiation,chemo, and the pills. If you have any questions please ask. There is HOPE!

HOPE

Dx Nov 07

There are some very good brain tumor centers in NYC if needed. Michael Gruber at NYU is a top Notch NO. I heard very good things about Dr. Sisti at Coulmbia for Surgery. I myself am being treated at Sloan. I wouldn't get my surgery done at Sloan but by NO is fantastic. He is Very open and easy to communicate with. West coast (Cedars and UCLA) are doing some good things with the vaccine.

It's unfortunate the way this forum is set up that it makes it difficult to find posted information.  At the bottom of this post is a link I provided a few weeks ago that may help you.

Mass General is ranked #7 in the country and Dana-Farber is ranked #5.  Those of us living in NE are lucky that we have such good facilities relatively close by.

You might want to talk to Dr. Andrew Chi at Mass General, and Dr. Patrick Wen at Dana-Farber.  While my wife continues to have her treatments at Dartmouth-Hitchcock, we are keeping Dr. Chi in our "back pocket".  We both liked him very much and he was the only doctor (of four we met with) who was familiar with every clinical trial or other option that I had questions about.  He has made himself available to me via email which I really appreciate.

Dr. Chi appears to be primarily interested in genetics and VEGF inhibitors (avastin is a VEGF inhibitor).  Back in March/11 he was working with some non-avastin VEGF inhibitors (at least thats what I recall) which might be something to look into.  It wouldn't hurt to talk to him.  He was VERY good at answering, and explaining those answers, to all the questions I had at the time.

http://health.usnews.com/best-hospitals/rankings/cancer

 

My father was being treated by Dr. Patrick Wen at Dana Farber and I must say that he is a wonderfull and very caring doctor, he was always available to answer any questions at any time. I highly recommend the Dana Farber team I don't think we could have done this without them, the staff are very caring and supportive. 

Johns Hopkins in Maryland seems to rank the best of the best for neurosurgery etc. 

First off I would say No cancer centers of america,commercials i think you may be referring to.
When Kevin was diagnosed in July 2010 we were told by our oncologist that get a second opinion and he would do all the leg work from calling facilties and sending MRI and whatever else, he would get our plane tickets and whatever set up all we needed to do was show up. Well,treatment for GBM is prety standard wherever you go. Location of the tumor makes a huge difference. So if you want a second opinion if your doc is as cool as ours was he will help you out with all of that. They have so many resources that you and I don't,rely on your doc and push him to do the things that can help you!

HOpe things work out well for your son and your family. This is the hardest road you will ever travel. Bless you all!

First... Get rid of "When it comes back." believe it is gone and then start working on making that happen.

When my husband was diagnosed 8 and 1/2 years ago, Duke was at the top of the heap.  Note that is where Ted Kennedy went.  (Same surgeon, same treatment as my husband) But since then, most of your good hospitals have caught up and are doing about the same thing.  Go (or stay) where you are comfortable.  If you do standard treatments you are likely to get standard results (hense your comment, "when it comes back).

It is my advise, as the researching wife of an 8 and 1/2 year, cancer free survivor) that you look outside of the box.  We are under the complete belief that it is all about diet and lifestyle and we have the personal stats to back it up. 

You might want to start out with the video "Forks Over Knives" and go from there.  Do your own research, it is likely you could help save your son's life.

Healthy Blessings,

Lauren

On Oct 28, 2011 2:13 PM lsmith wrote:

First... Get rid of "When it comes back." believe it is gone and then start working on making that happen.

When my husband was diagnosed 8 and 1/2 years ago, Duke was at the top of the heap.  Note that is where Ted Kennedy went.  (Same surgeon, same treatment as my husband) But since then, most of your good hospitals have caught up and are doing about the same thing.  Go (or stay) where you are comfortable.  If you do standard treatments you are likely to get standard results (hense your comment, "when it comes back).

It is my advise, as the researching wife of an 8 and 1/2 year, cancer free survivor) that you look outside of the box.  We are under the complete belief that it is all about diet and lifestyle and we have the personal stats to back it up. 

You might want to start out with the video "Forks Over Knives" and go from there.  Do your own research, it is likely you could help save your son's life.

Healthy Blessings,

Lauren

I couldn't agree more! I am a GBM4 survivor, and one of the most important things for you to do is to never subscribe to the "when it comes back" mentality. You have to focus on making sure it doesn't come back....and there are ways to do that (for me it was naturopathic treatment....in other words, no radiation and no chemo). If you want a "conventional" treatment option, then I would echo some of the other posts concerning Duke. Dr. Henry Friedman at Duke is probably one of the best neuro-oncologists in the country (if not the world), and his colleague (also named Friedman, but unrelated) is an outstanding neurosurgeon. Aside from Duke, MD Anderson in Houston is a great all-around conventional treatment facility, Sloan-Kettering in New York is also top notch, and UCLA Medical Center is doing some great work on brain cancer matter. That being said, I would urge you, as I would anyone, to at least research and consider alternative options. You might be surprised at what you find and how successful they are. It certainly worked for me! Good luck! Bill

I know everyone would react differently to alternative treatments but do you attribute your results more to diet or supplementation?  Can you give some examples of things that you believe worked well.  Also, did you run it by your Dr. before taking the supplements.

Thanks