MARIE - What about necrosis???
 

Dear Marie -

I am having trouble believing that all the spots on Ed's scan are all tumors. He has had WBR, Gamma and taken Tykerb. This would be an all time record as far as this group for all these treatments to fail like that.

I am thinking about my own case as well as others of us like Barbara H and Jojo who supposedly had new spots in old treated areas and come to find out through open surgery that they were DYING tissue and NOT new lesions. 100% necrosis!

Remember that the MRI can NOT differentiate between actual tumor and necrotic tissue. SO, with that in mind, I am thinking that if there is a place with some kind of new scanning equipment that COULD give a better picture of what the spots ACTUALLY are, that would be my first step.

Especially since you are not reporting that Might Oak has symptoms at this time. With THAT many lesions, I have to think that he would show some outward sign that they are cancer lesions.

Maybe Dana Farber has such a new system. Dr. Winer would know about that.

I am going to live in "HOPE" that many of these "spots" are just "spots" of dying tissue.

I can take this route of thinking, since my two gamma knifed spots seemed to disappear and then one year later show up again. I still have one 5-6mm spot that continues to sit there unchanged through scan after scan and it is read as "scar."

Thinking SCAR, SCAR, SCAR!!!

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

MARIE - What about necrosis???
 

Marie and Steph
I don't know if 3 D scanning would be an option for Ed, but I saw it demonstrated on T. V. recently. It looks like it is easier to see everything more clearly than on regular MRIs or CAT scans. I wonder if we can find out where it is available. Maybe there is someone on this board who has tried it and can share the experience with us?

Dear sweet Marie,
I am so sorry that you are dealing with yet another round of challenges. I am sending you all the positive energy I can gather to support you as you and Ed "push the envelope" of treatment.

First of all....I am with StephN and others to really confirm that you know what you are dealing with and make no "assumptions". Is open brain inspection an option? I realize quite invasive but at least you'd know.

I thought on the site there was mention of injecting chemo directly into the brain. (I am sorry, this is probably the wrong choice of words but I hope you know what I mean).

Are there any clinical trials that Ed could participate in?

I am with you.....keep on asking the questions, don't accept NO....As so many on this site have already proven, the Drs. don't know all. This cancer has NO IDEA who they are dealing with!! Keep on swinging!!!
Lots of Love....Lori

Marie,

I would think Ed's team will be able to figure out what steps Ed can take based on the new information.
Scans are complicated stuff. I was frightened when told to get an ultrasound after the CT of my liver. The explanation from the doctors were so confusing I had to go to the Web to get some clarification.

Will continue to pray for both of you. Take care.

Marie - what about Temodar?

MARIE - What about necrosis???
 

Hi Marie,
I keep thinking about this and want to share it. It may not make any sense, but wouldn't Ed have very terrible headaches if there are too many brain mets to count?

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

MARIE - What about necrosis???
 

Marie and Ed
Keep up your fighting spirits !!!!!!!!

You know it Elaine. And by the way, I rambled so much that I forgot to answer you. These mets are seeded everywhere and will soon to pose issues. Time is of importance because it is working against us at the moment.

I have started him on my favorite drug (not~Wink), Decadron, to keep brain swell down. I think it is important to keep an eye on the worse mets and know their areas so I will be aware of what side effects will affect him. He has had previous mets in areas that would cause paralysis and such. I am worried about the last freedom Ed has, driving.

If you look at him now, one would say he looks great. Of course he looks great, he is still full of fight and hope, energy is good and all pain managed as good as it can be. Appetite is better but weight cannot be gained and very hard to maintain.

We are gearing up for the fight of our lives. You all are keeping my hope alive and inspiration flowing.......my greatest thanks.>>Believe51

Just so I understand, why no traction with Rexin-G?

Thinking of you.
 

Hi Marie,
My computer is acting up and my name no longer appears when I log on to the website. I put in what I thought was my password and it didn't work.

However, I needed to try and post because my heart goes out to you and Ed. I know that you plan to see Dr. Winer at the Dana Farber. I also suggest that you try an get an appointment with Peter Black. He did my surgery and is excellent. He is also very compassionate.

I don't have any suggestions for you, except that I have had three brain surgeries as a result of my brain met. The other two turned out to be necrosis, and Dr. Black was quite sure that was a possibility when others did not offer me that hope.

Best wishes on this continued journey. Please know that my thoughts are with you even when I don't post. I read everything you write.

Best regards,
Barbara H.
P.S. I finally got back into the system.

Have no fear Rich, Rexin-G is on the list. Another project in the works.

And Barbara, I value your continued support when it comes to DFCI. I will be looking into things tomorrow.>>Believe51

Marie,

This is the first chance I have had to log in this week. I will be praying for the Mighty Oak and thinking of you. Please let us know what happens at the doctor's appointment.

Amelia