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Believe51 · 06-14-2009, 12:35 PM

On my list for a while Brenda but was not a good choice at that time and I think this is a viable aid now this has happened. Open brain inspection is not on Ed's list and I smile because I have always had the master list and Ed's list reflected the same options. Intercranial port, maybe but Herceptin did fail for him systemically. It is a chance that it will help or a chemo itself. Right now it is 'scaling' these options vs. quality of life for Ed. His total weight loss through this journey is 75 pounds and counting. Hard as it is I must admit that the quality of his life has been sacrificed for some time now.

Believe me, we are not going to accept much negative response from these doctors, someone will answer with options. Those options again must suit approval for Ed. The bottom line though, is that his brain has numerous mets that are new. All Gamma Knives and WBR did work in the past and well at that. WBR for a second time projects a few months to your life from what I am researching myself. For the first time I must say we almost feel defeated but the powers of science are out there. He is willing to do clinical trials and has been for a while now, but the brain was controlled and the body was starting Ixempra.

I will travel to the ends of the world with him to visit hope. There is someone that is out there that can give us options or take a chance on treating him. There is someone, somewhere that will offer....and then I will step aside and watch what Ed feels and pray that he chooses something he is comfortable with.

I cannot wait for tomorrow even though I do feel I will not like many things that are being presented to me. Tuesday we have an appointment with OncoMan and I plan on taking my list.......A list I started here, one compiled with suggestions from you Warriors, last ditch efforts and many long shots. I have information from other research of brain mets and brain cancer also. The more p.o.'d I get with cancer, the more I want to fight back. In the back of my mind I have to remember that 33 months is a long amount of time having the elements of his cancer. We want more, our story is not over. He has fought with all his might and shall continue to beat back the beast in a situation that looks impossible this time. Love to all.>>Believe51

06-14-2009, 12:35 PM	#8
Believe51 Senior Member Join Date: Jun 2007 Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE Posts: 2,999	On my list for a while Brenda but was not a good choice at that time and I think this is a viable aid now this has happened. Open brain inspection is not on Ed's list and I smile because I have always had the master list and Ed's list reflected the same options. Intercranial port, maybe but Herceptin did fail for him systemically. It is a chance that it will help or a chemo itself. Right now it is 'scaling' these options vs. quality of life for Ed. His total weight loss through this journey is 75 pounds and counting. Hard as it is I must admit that the quality of his life has been sacrificed for some time now. Believe me, we are not going to accept much negative response from these doctors, someone will answer with options. Those options again must suit approval for Ed. The bottom line though, is that his brain has numerous mets that are new. All Gamma Knives and WBR did work in the past and well at that. WBR for a second time projects a few months to your life from what I am researching myself. For the first time I must say we almost feel defeated but the powers of science are out there. He is willing to do clinical trials and has been for a while now, but the brain was controlled and the body was starting Ixempra. I will travel to the ends of the world with him to visit hope. There is someone that is out there that can give us options or take a chance on treating him. There is someone, somewhere that will offer....and then I will step aside and watch what Ed feels and pray that he chooses something he is comfortable with. I cannot wait for tomorrow even though I do feel I will not like many things that are being presented to me. Tuesday we have an appointment with OncoMan and I plan on taking my list.......A list I started here, one compiled with suggestions from you Warriors, last ditch efforts and many long shots. I have information from other research of brain mets and brain cancer also. The more p.o.'d I get with cancer, the more I want to fight back. In the back of my mind I have to remember that 33 months is a long amount of time having the elements of his cancer. We want more, our story is not over. He has fought with all his might and shall continue to beat back the beast in a situation that looks impossible this time. Love to all.>>Believe51 __________________ 9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI 6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression 10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement, NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5 12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!