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