Second opinion for when it comes back

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RE: Second opinion for when it comes back

by kathyc1 on Sun Oct 30, 2011 01:36 AM

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Have you considered Dana Farber? It is an excellent facility.

RE: Second opinion for when it comes back

by niallsmum on Sun Oct 30, 2011 06:41 PM

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J, I know just how you feel when you say it's about the 'in between' time - I couldn't have put it better.  I ama thinking of you and your son and your family.  I hope someone can give you the answers. x x

RE: Second opinion for when it comes back

by vwxyz on Sun Oct 30, 2011 09:31 PM

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Thankyou all for your input and Naillsmum, Thankyou for understanding.  J.

RE: Second opinion for when it comes back

by Sharbry on Wed Nov 02, 2011 01:09 AM

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I just want you to know there are several other places to look. My husband was diagnosed with GBM in 2009 and recently has a new tumor. We live in Vermont. Initially I was told from several different medical centers that it was non operable. I sent the MRI results to UCLA, and they feel it is operable. So we are headed there this month for further testing to see what can be done.  Remember to look at different places. It is not an easy road but you have to keep looking for "hope". Sharon

RE: Second opinion for when it comes back

by vwxyz on Wed Nov 02, 2011 02:51 AM

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Kathyc1, Dana Farber and all other major Boston,MA hospitals are joined at the hip with the same Drs. in charge. 

 

RE: Second opinion for when it comes back

by vwxyz on Wed Nov 02, 2011 02:58 AM

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Sharbry, please please please keep us all posted as to what UCLA recommends for treatment and why they are willing to help and the other places are not. 

To ALL OTHER READERS,      It is the other side of the USA for my son and I, and will other places "outside" Massachusetts TREAT MY SON WITH THE ONLY MEDICAL COVERAGE HE HAS IS "MASS HEALTH."?  That is my biggest deterrent in going forth finding other places.  Will other places require money and/or a blue label medical insurance, or will they care enough to help on what my son has no choice but to on for medical coverage?   J. 

RE: Second opinion for when it comes back

by johnlane45 on Thu Nov 10, 2011 02:45 AM

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Sharbry is right about UCLA and Dr. Linda Liau since she has been extensively involved Northwest Biotherapeutics DCVax clinical trial from early stages years ago to where they expect FDA approval in 2012. The results are impressive but you need to do some due diligence and see if this applies to your son's current condition. I would start with going here:

http://www.nwbio.com

Good luck and my prayers are with you!

John 

RE: Second opinion for when it comes back

by Johnr_1 on Thu Nov 10, 2011 04:22 AM

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On Oct 23, 2011 8:39 PM vwxyz wrote:

 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. 

I have found this Website to be very helpful with all kinds of Cancer issues and Solutions:

http://liveforeverwithcancer.com/

Johnr_1

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