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Old 06-23-2009, 08:47 PM   #5
Believe51
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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
Yes Darita, I know that although things are dire for Ed, I am going into Dana Farber tomorrow and I am bringing hope there too, I expect to bring back even more. Having a legal pad with 6 full pages of organized options helps me to have that hope and feeling empowered. There is something, somewhere that will help my Mighty Oak, it is a race against time and we have a head start. This pad does not have articles or abstracts, just drugs and procedures.

As for you Dear, I have followed your journey and I stand right besides you. I have felt those same feelings. Let me speak outloud, okay??

First of all, like you Ed had a spot reradiated with the Gamma, it was in a difficult spot so the original amount of radiation was lesser than the other spots. The surgeon did this because it was so close to vital areas and knew he could re-Gamma if needed there. I am not sure the amount of radiation you received there and realize you have had WBR. That being said, my question to ask him is the obvious, "can we do this again here?" He will let you know. For your records I would ask and record the amount of radiation to those stubborn mets.

As for the T/X combination, this was tried by Ed and it failed for him. But it has worked magic for others, many others. This is a wonderful combination!! Please read some of the posts, especially from Brenda concerning how she manages those side effects. Please, please do not let the fear of them prevent you from your possible 'magic bullet'. Do not rob yourself of a potential answer to your brain problems. I beg you to keep this on the list of options for yourself, you well know about the BBB and the difficulties of attaching and delivering other meds past it. I beg you to keep your mind and your dreams in focus with the considerations of this combo.

For the newest of strategies and some being unconventional, I could send you a summary I have. You could also read the latest of posts from Ed which I know you have since you replied. Honey, I know what you are stuggling with concerning your brain. You feel tired, well of course you do. Not feeling too hopeful, well thus the point of my post. I feel hope Sweetheart, hope when I know what is happening to him. He is in a bad place but still I feel hope. I did not the day I found out about it, I felt despair.

Please Darita, let me tell you that Dana Farber tomorrow is not just to save my husband's life. It is to save the lives of the people I love. I will be bringing back hope for us all and you shall be the first person I will contact upon my return. Let me know if you want my list, it will take me a day or two to get it to you since I thought I saved it and need to redo it tonight. I will not send it until we return.

If I could I would look into your eyes. I would tell you that I know you are tired...that you can do this. I would smile as I told you that there is hope, that I have even more to share. I am counting on you to trust me and the words I say from my heart. Hang in there because I know that you too have a wonderful team. Stay strong Darita as I bring back home my husband's life and enough scientic hope to stretch the world. I hope in some small way I could help. You know our journey and that these words all come from my heart. PM me girlie if you cannot sleep tonight, guess you can figure out I will get very little sleep.>>Believe51

PS: While we are sitting in Dana Farber tomorrow, Please know that you will be sitting right besides us. You will fill my thoughts.
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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!!
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