Mighty Oak's Oncology Appointment at 1:00 And We Are Not Leaving Without HOPE!!!~
 

Start out the post first with my orange fighting color and putting on my lucky green shoes!

Recap on what I have done in the last few days.

*MD Anderson is out. I may be able to get him into an unknown trial. From starting today it would be a 2 week window of acceptance, and again with an unknown drug. If he was accepted, an additional 8-10 weeks. This is too much of a chance and we do not have that long to take that big of a shot in the dark. It would also not do any service to Ed to be away from home and for his quality of life. We are totally okay with this.

*Dana Farber options, if any, will be discussed today at this appointment. I am sure that this is a study there in Phase 1. Either way, we know that there may be drugs that they may be able to get for him 'compassionately'. I think they will have some armor for us.

*WBR for a second time will be discussed on Thursday with Chief Radiology OncoMan on Thursday. The amount of time you get from this is about 3 months. If this is an option in Ed's eye, well then he may gain the time he needs to continue his battle. There are drugs that we can use for synergy that I will talk about too.

*Intrathecal Herceptin treatment will be discussed with our team. Herceptin was not as effective systemically as it was desired but who knows about doing it this way. If this works for Ed, I will feel hope for many others that this could work for them too. I am worried about a drug being directly injected into the brain but I have made friends with the brain and view it as an incredible organ.

*I have a list of drugs compiled. I will discuss the list with OncoMan today. I am not leaving without HOPE today. Look for my updated post tonight just in case I am not home yet....I could be looking for hope....and prayers.

*If we or Dana Farber decides that it is a good idea to come in and discuss drug strategies, we are there. If they are going to review his case and say they would need to see him to explore, no. I am going no where with him to look at him. Here are his records, you have seen them before, but now look. What do you think?

*He does not want to go to far away from home and I agree with this choice. He is frail and really enjoying life lately and needs to be at home. Of course, I would fly him anywhere. I sit idle for his next move. Talk about feeling helpless. I have stopped the pushing and urging but I have not stopped the options.

*If we can take a shot with drugs and cannot do a trial, I will try to get these medications to him. I will contact drug companies and self pay if I have to. I have cancelled our 3rd Cancerversary cruise to have funds to enjoy life today.

Believe's Summary: We must weigh any options vs. side effects and divide that with the time and quality of life he will have. He has had a rough journey and never once complained for anything more than pain. I cannot see him go through much more invasive treatments if he sleeps through the rest of his time. Time is not on our side right now and that seems to post the biggest problem.

I am going there today with HOPE and I will leave with more of it than I went in there with. I owe much of this hope and courage to go on to all of you. You are all such a big part of who I am since by loving you I have been able to find peace through this journey. Your inspiration and knowledge has driven me to places I never thought I could go. I am this person simply because you make me flourish the qualities I endure. I have always been this person but you have allowed me to blossom and grow into even a better person.You can see the real me because I am able to see the real you. Thanks for not just the ammo and information, but for teaching me how to fight. Today is the first day that I feel like a Warrior.

Now, I am going to go gather hope and I will take that hope back home, to all of you. I adore you all.>>Marie

Marie,

I will be thinking about you and the Mighty Oak. Let us know what happens today.

Amelia

Thoughts, prayers, strength & courage to you!
There is always HOPE!

Keep the Faith~

Jessica

I am praying for stength for both of you and plenty of HOPE!

Regards-

Suzanne

Marie,

We are with you and Ed in spirit and warrior mode today. I do pray that the Onc. will have some tx plans prepared to get Ed back to NED. It is possible. I BELIEVE!

Hugs and Prayers,
Lexi

Hi Marie,

Praying hard for both of you. I can't tell you how incredibly brave Ed seems to be and I think he must derive that strength to carry on from you!

May god light up your path and fill you with hope and peace.

love,
shobha

Marie,

Just remember that while you are at your appointment, you will have all of us in you pocket - ready to do battle with you.

Love, Alice

We are with you and Ed, Marie!

Those green shoes are powerful magic!!! Have some hope from me to take along with you!!!

Zeloda,Marie???

http://www.asco.org/ASCOv2/Meetings/...stractID=31379


another option..

Methotrexate directly to the brain..

Hoping you leave the appointment with PLENTY of HOPE!!!

Hugs,Marcia

Marie,

Good luck at the appointment. I'm praying for a solution.

Best,

Joan

There with you in spirit, strong warrior! ma

God speed Ed and Marie.

Where there is life there is always hope...

Mary Jo

You two are amazing. While you fight for yourselves, you fight for us all, and I am grateful. Praying for good results.

Mighty Oak's Oncology Appointment at 1:00 And We Are Not Leaving Without HOPE!!!~
 

Sending HOPE your way !!
By the way, you have been so through, but I don't remember if you considered finding a top notch neurosurgeon to go over the MRI with both of you and possibly offer some new and exciting suggestions?
One doc cannot know everything about everything, no matter how good we may think he or she may be. Sometimes we need to talk to other docs. They might just be able to fill in the blanks or offer something that the other docs didn't even know existed.

Wonderful words & thoughts
 

Dear Marie -
While I was drinking my contrast for my CT scan, I was looking out over our beautiful Lake Union and into the "great beyond" thinking that you would be in your appt about that time.
Praying for some thunderstruck idea to hit your medical team for Mighty Oak. Since I was in my own cancer center which is such a powerful place, was HOPE-ing some extra brilliance would go your way.

I just keep coming back to my own case where my gamma/brain team was totally surprised that my lit up spot turned out to be NECROSIS. They said things like, "with your history and aggressive disease we had to think the gamma knife did not work." (!!!!)

Give the big guy a hug from me!

Marie & Ed,
I have been praying that miracles will be happening for Ed very soon. I have really good feelings for you two!!!!
As I take much more away from everyone here than I have contributed (I still feel so new even after 2 yrs with BC), I am so grateful for this site. Everyone seems to lean on one another and feed off of one another and just are so sincere! This is the best place for support...and Marie, you are such a strong woman.
Take care, you both....angels are surrounding you!!!