~We Are Back From OncoMan And We Bring To You Our HOPE~
 

As we are waiting in the room for the doctor a knock comes. At the time I did not know that it was 'hope' knocking, all we seen was a man and woman enter the room. Does my OncoMan realize that today is not the day to speak with others??

Of course he did! He would show up after an half hour but for now he knew that Ed and I needed to be treated today, I love our doctor to pieces. This man working on his fellowship and the sweet young lady was a student. I start off saying that I came in with a 'shimmer' of hope and was leaving with even more. He started his conversation saying that you either have hope or not.....and that there is 'always' hope. His mother has many of the issues that Ed has and he has done his own personal research for her. Both himself and our OncoMan thought he could help us, I am honored and touched by this. You could tell that OncoMan let him get the initial glory for his personal need to suppy us with hope. I could feel this gentleman's need to give back in tribute to his ill Mother, he was doing more than his part as a future OncoMan. Today he treated a couple, tomorrow he will be someones Oncologist and this gives me hope for the future all by itself.

I brought a partial list of things I wanted to discuss as options but reserved it until later. We sat and spoke in depth about what is happening to him and what would be options at any degree. When he mentioned these options he was naming them off like he was reading my list verbatim. Tears rolled effortlessly off my cheeks as I sat and listened with my eyes closed, my spine tingling. The room spun gently with complete euphoria and I kept saying, "This is not a dream....a race against time but it is not a dream!"

The doctor came in with confidence and a hopeful yet serious look on his face. He is a blessing in his own right and knew what today needed to be. When talking with everyone here today, we were all on the same page, same line and I know we all impressed one another. For the two hours we spoke can you imagine how much time invested into the research that took place?? Just you all seaching and pulling the guns took many, many hours.

Rambling but hope does that to me. While there the fellow called Dana Farber and spoke to seperate heros there he knows personally, good to have connections said the king...oh, back to the story..(lol) I knew that Dr Nancy Lin has made great strides with the brain. We will be seeing whoever suits him best medically at the time of further research. Dr Harold Burstein, Dr Eric Winer and Dr Nancy Lin will concur and take it from there. Our appointment will be next week some time.

Our OncoMan kept the list because our girl, LANI had results he had not read yet (go Lani!). Lani, you are unbelievable and such a wealth of information and support. You personally have saved us from much peril through this entire journey with your always caring efforts of support. My greatest respect and admiration.

We scheduled another Ixempra (#3) for June 26 just in case we need it, next week makes that decision. It is not yet proven that Ixempra does not pass the blood-brain barrier, for all we know this could be helping. We will know soon if this is the case. This may be an instance of adding an element if Ed so chooses, another option. If Ed's tumor markers do not rise and maybe have gone down, this is a wonderful choice I hope we can keep getting. The brain may get treated seperately, for now we are watching for edema and will treat if needed.

Thursday we see the Chief Radiologist Oncologist to speak of whole brain radiation for the second time (yikes) and adding synergy for a punch. This is an option as awful as it may sound and as much as it is not recommended.

Well there you have it again My Sweets, all in a neat little (hahaha) post. Today our souls were fueled with hope. There is more hope to come in the next week or so and the clock is ticking fast. We have serious decisions to make after all the options are explored.

I want to take another minute to thank you for all coming together to support and love us. The posts to these threads have been read over and over. You have helped to treat our souls and to replace our fears with hope. There still is the reality of the urgency and importance on making the decision that will work before more brain activity makes this impossible.

So I bring back home our hope, not just the Mighty Oak's hope, but hope for us all to claim.>>Believe51

Thanks, Marie and Ed, for all the hope and love you share with us. I am so glad you feel cared for with your medical team, and you are always in my prayers.

Rebecca

Sound like hope springs eternal Marie, hoping and praying for continued good news for Ed.

all the best
caya

Marie,
You couldn't do better than Burnstein, Winer and Lin, they are all respected by the entire bc research community as being tops in their field.

Warmest Regards
Joe and Christine

Marie,

Thank you for keeping us informed. It looks like you are in such good hands.

Joe said it Marie! Burstein, Winer and Lyn - wow. You have some powerful folks working on this with your Onc...

Love and prayers.

Marie,
There is always hope.....we are all fortunate that there are those in the medical community that "Believe" and continue to fuel hope and life.

So very glad that you have these docs on your team. We hold hope high.

I'll continue to say it....where there is life there is always HOPE...........and OH BABY I am feeling it. HOPE HOPE HOPE - HOPE IS ALIVE.

I thank God tonight for Him wrapping His arms of love around you and Ed and bringing you His special angels here on earth.

Prayers continue and my heart sends you real love and care. Feel it???

Peace be with you both - May you sleep well as you continue to feel Hope and our arms of loved wrapped around you.

Mary Jo

What wonderful news. Hope makes our spirits feel peace and happiness.

xo, Karen

I BELIEVE IN HOPE !!!

I'm so glad you are in such skilled hands.

There is no place like hope!
 

Marie: Thank you for your thoughtfulness in posting during such trying times. I want you and Big Ed to know, as I have told you in the past, I cry and cheer for you. I am dealing with some new eggs in my noggin right now and am in the midst of treatment arrangements and decisions and your post stokes the flames of continued hope in my household. Thank you. I also consult with Dr Nancy Lin and I am so very glad you are in such fine care.

So, with all of this hope, capable hands, brilliant minds and most importantly, your love, your Ed stands as mighty as ever and forever in our hearts and prayers.

I send all that is in my spirit that is good and hopeful to you and your Mighty Man!

I wish you, dear friends, strength and courage! Bless us all.

Darlene

Dear Marie,

Your posts are very touching to me. I am so happy for you guys knowing that you will get great support from great doctors. Keep hope alive! You are always in my prayers.

Love,

Paty

~We Are Back From OncoMan And We Bring To You Our HOPE~
 

Thanks for sharing the HOPE !!!!!!!
Thanks for letting us know there are more options.
Great news !!!!!!!!

HOPE !!!!!!!

I am so happy that your visit today has given you this gift!

I concur, you have an incredible medical team at DFCI!

Much love ,Marcia

Marie and Ed - I was so happy reading your wonderful post. Hope is alive!!! I'll be watching the updates. Keep strong, hopeful and grateful for every moment. You both are loved and supported.

Marie,

I am glad to hear your news. Tell the Mighty Oak, I am thinking and praying for him.

Amelia

Dear Marie and Ed,

So happy to hear the hopeful news! I am praying very hard for both of you. If I can get the fraction of the strength you have, I will make it through this crazy journey.

God bless you both!

love,
shobha

Marie and Ed,

I primarily get my care outside of Boston since it is more convenient to home, but wanted to let you know that I see Dr. Burstein whenever another opinion is needed regarding my care. He is very likable and if you end up seeing him, he will also continue to pile on the hope. I'll keep you both in my thoughts.

Colleen

Thanks Colleen, he will be the man and our appointment is June 24th. It is my birthday on the 23rd so I will consider this my birthday gift!! Our appointment is at 4pm so I think we will take the train down there and stay overnight. I know his back is going to be bothering him big time by the end of that day.

I am excited and scared, although there is hope his brain is in rough shape. Good thing though....no symptoms yet and crossing the fingers and toes!! Now if we can just cross the blood-brain barrier we are golden.>>Believe51

Marie,

I'm delighted to read your post today1
Where there's life there's hope and by holding to that the rest will follow.
Good wishes to you both and thanks for the update:)

Marie, I am happy and full of hope for your next steps. I see you really are figuring it out with the help of your "Oncoman" (who seems to be a very fine person beyond being a very good doctor). I admire you Marie.
I came from France two and a half years ago to visit Dr H Burstein at Dana Farber. I was impressed by the way he explained, was straightforward and "human" at the same time. I hope Ed will feel comfortable with this exceptional team and that they will suggest a new path.
And "hurray for Lani" again.
Love and hugs to both of you.
Michka

Holy Cow, Marie!

While I agree you couldn't do better than Winer, Lyn and Burstein, I also believe your prayers were answered by having doctor fellow and your wonderful OncoMan who knew your souls needed tending as well...

Blessings
chris

Sweet Marie,

I was thrilled to read your post. You have the dream team on your side. Thanks for sharing your hope with us today. It's what keeps us going.

Tonya

Hope....
 

Hello Marie and Ed,
Sending along my best wishes as you continue to consult...You have been in my prayers and will continue to be. Hold onto that hope!

Barb A.

keeping you both in my thoughts
 

Hi Marie, this is Joy's sister Jennifer. I just want to say good luck with the consults. As a fellow caregiver I admire you so much for your strength and courage. You are an inspiration for me personally. You both will be in my thoughts! Much love, Jennifer

Marie and Ed
Prayers will be offered everynight through this next
journey. Something has thrown the anchor overboard
again. You have a good team to help you haul it up and
continue the journey. We are always the wind at your
back. Take care.
patb

Praying constantly for you and Ed! There is always hope. Know that we are in your corner always, Marie, and are pulling for you and Ed. With much love and healing thoughts and prayers being sent your way, Courney

Two drugs that might help
 

One of these is the anti Siezure drug Depakote (Valproic Acid). Various formulations of Valproic Acid (Depakote, Depakene etc) have been successfully to treat siezures for years.Obviously this drug must cross the blood brain barrier to treat symptoms originting in the brain.

It turns out that Valproic acid has definite powerful anti cancer action as it is a Histone de-Acetylase inhibitor and trials of the drug are being planned to treat various forms of cancer. In combination with other treatmets, Valproic acid may well have some value althoughI cant prove this. Very often siezure meds are used with any kind of brain involvement so why not use Depakote instead of say Keppra considering its, at least, theoretical anti cancer action.

Your researcher mentioned a plant that might be of use and it appears that this plant works by acting on the Arachodonic acid to Leukotriene system and prevents the formation of Leukotrienes.

There is an anti asthma drug called Zyflo (generic name Ziluteuton) which works in asthma by blocking Leukotriene production. Zyflo is not used too much anymore and has been largely replaced by Singulair. I am working as a pharmacist in a Rite Aid today and will try to call the drug company that makes and sells Zyflo to see to what extent, if any, it crosses the blood brain barrier. I think the plant she mentioned was Boswellia or somethig like that.

Paul

Paul, I think of what you speak of is Boswellia. The only reason I have refrained from anything more than pain meds for Ed is because of Dana Farber next Wednesday. This is certainly on my list but I will add those other elements also. I will be seeing many more doctors and would like to discuss some things other than typical medicine, like supplements and those misc items. I will make you smile by letting you know that we use Rite-Aid as our Pharmacy and they are the best group of helpers. They even got Tykerb there before the drug company started sending that in the mail. I have had other major problems with some of the unnamed pharmacies and have had not a one there. I am not sure if Rite-Aid still gets the first script of Tykerb for its patients, I think that may have changed, but it was a major save in his treatment at the time. Were you the fine gentleman that followed the Rexin-G thread?? Just curious if you found anything out?? Thank you for chiming in, I appreciate it and do want to follow up.

And I want to thank you all personally from my heart to yours. I shutter as I think where we would be without you and your support and wisdom. With you all, I am never afraid of the dark anymore, for you are my light!>>Believe51

Marie,

A lot of the light is reflected from you...:) Thanks for the good 'Hope' news.

Marie,
Thanks for sharing your good news.
There is always HOPE!
You are a beautiful person.
Continued prayers for extra strenght.

Love,
Gemma