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Old 02-27-2009, 11:53 AM   #6
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
First off this post is just what the doctor ordered, interesting and thought provoking; exactly what I needed. I try to be very careful about what I write and how I write it, especially when replying to others posts. Thank you Chrissy for spotting something I wrote that should have been better thought out and spoken. What I meant to say is the 'he failed' in his quest for this chemo (ChemoFail), not that Ed failed. I am happy that you, rather than Ed noticed that first so I could clarify it.

Another interesting feeling that could hinder us is the underlying fear that was expressed unknowingly about the clinical trials. Although I view those who embark on them (wink) the ultimate, I guess the 'not-knowing, not proven' thing really takes me for a loop. Chrissy, I thank you for enlightening me, for teaching me things and expressing your feelings about them. I feel very different about them now.

Steph, your views also was what I needed. Your points were well taken and most appreciated. When discussing the brain you always have me feeling so strongly afterwards. I feel so much better after reading your feelings and appreciate the provoking thoughts you provide to me. This honesty really helps me to make the best decisions possible with what we have to work with.

Lucky for us our doctor runs the Cancer Clinic we go to. Actually we only go there because he is there. He is on the cutting edge and spends more time learning, advocating and pressuring for clinical trials than he has patients now. There are a few of his patients that are in sticky situations and he has free reign of advocating trials for the clinic. We have witnessed many beautiful trials here. Also, he looks at these patients best bets and works on getting that trial there. When Ed wanted to go on the Tykerb our doctor not only got it to him but started trials too. OncoMan does push for the patients with trying situations and we could not be more blessed. Also, OncoMan has discussed Ed's case with doctors when in conferences all over. We have given him permission to him and others to feel free with his case, for him and the sake of others. Having said that and seen it in writing, after hearing what all you fine ladies have expressed.....well, let us just say that I feel I have grown. I feel more comfortable and confident with what is to come.

So my fine friends I thank you for the discussion and the thoughts. Your feelings are prized and not a gift you can just get anywhere. Even the best doctors cannot supply the feelings and thoughts that the patient has been through. No doctor! We are still exploring our options but I do feel better about it. Since I have loved you all for 2 years I think you know the drill by now.....When a treatment fails and it is time to attack again, Marie plans for that attack. No matter what plan I always get a little insecure about not making the right move. I work best under pressure and when there is less to tend to I start getting antsy. What is the right move? There is none, it is what the heart feels and I should not second guess that all the time.

We are blessed to have this time together since we thought we would not. I want more! This post helped more than you know. Even the fact that I thought I was more open to clinical trials but my words and heart spoke differently. So Vickie, Steph and Chrissy special prayers for you after this reply. Today and always>>Believe51

PS: Ed and I will be free flying in a couple of weeks. I will feel better when he starts treatment as selfish as that sounds.
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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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