HER2 Support Group Forums - View Single Post - MARIE

Believe51 · 06-13-2009, 03:24 PM

Steph, I would love to believe that this is what happened, unfortunately these are new spots we are talking about. The MRI he goes for is one which measures the changes from all other MRI's, both the necrosis and new mets. This is what is happening as much as I still do not believe it. The GammaMan himself almost broke down on the phone when he told me that there were too many to count and that our hands are tied.

As far as the Tykerb, it did not work at all. Herceptin should have protected him better but it failed for him almost from the get-go. Ed has been fighting brain mets for 2 straight years and that is a great record and one we wish to beat.

Male breast cancer is so different, so much more aggressive and harder to treat. Being Her2+++, and the Inflammatory element added, nothing else can be put in the mix to make this a worse, more aggressive cancer. I hope I do not sound hopeless because still part of me is full of a glimmer.

It looks like Ed has that all time record of things failing him. Even information regarding Tamoxifen for males is proven now not the standard or even recommended measure of care. I am trying to say "scar tissue" but these spots we certainly not there for the last scan. They are covering his brain in all spots and if we cannot stop them, 3 months or so he will start having symptoms. In the mean time we need to control the brain swelling.

BUT.....we are going to go for more elaborate scans to be able to seek further treatment. The only hope we have is to redo WBR and that appears not to be an option. I am so appreciating all of the advice and opinions that we have received and again, I work hard to remain positive.

This is not the end of his story and I try to say that if he is being called away, God must have better plans for him than having him beat this and remain with me. Sorry to sound so negative, the reality is where I have to live in as I pop in and out of living with hope and miracles.

Please add any advice, as petty as one may think it is, to these posts. I need everyone to write what they think of feel, even those quiet members that may want to speak. Keep these things coming for us, it is how we are surviving right now.

Thanks Steph, you are an amazing Warrior and I so appreciate your journey, knowledge and inspiration. You are the greatest.>>Marie

06-13-2009, 03:24 PM	#2
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	Steph, I would love to believe that this is what happened, unfortunately these are new spots we are talking about. The MRI he goes for is one which measures the changes from all other MRI's, both the necrosis and new mets. This is what is happening as much as I still do not believe it. The GammaMan himself almost broke down on the phone when he told me that there were too many to count and that our hands are tied. As far as the Tykerb, it did not work at all. Herceptin should have protected him better but it failed for him almost from the get-go. Ed has been fighting brain mets for 2 straight years and that is a great record and one we wish to beat. Male breast cancer is so different, so much more aggressive and harder to treat. Being Her2+++, and the Inflammatory element added, nothing else can be put in the mix to make this a worse, more aggressive cancer. I hope I do not sound hopeless because still part of me is full of a glimmer. It looks like Ed has that all time record of things failing him. Even information regarding Tamoxifen for males is proven now not the standard or even recommended measure of care. I am trying to say "scar tissue" but these spots we certainly not there for the last scan. They are covering his brain in all spots and if we cannot stop them, 3 months or so he will start having symptoms. In the mean time we need to control the brain swelling. BUT.....we are going to go for more elaborate scans to be able to seek further treatment. The only hope we have is to redo WBR and that appears not to be an option. I am so appreciating all of the advice and opinions that we have received and again, I work hard to remain positive. This is not the end of his story and I try to say that if he is being called away, God must have better plans for him than having him beat this and remain with me. Sorry to sound so negative, the reality is where I have to live in as I pop in and out of living with hope and miracles. Please add any advice, as petty as one may think it is, to these posts. I need everyone to write what they think of feel, even those quiet members that may want to speak. Keep these things coming for us, it is how we are surviving right now. Thanks Steph, you are an amazing Warrior and I so appreciate your journey, knowledge and inspiration. You are the greatest.>>Marie __________________ 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!!