~A Mighty Oak Update~With Bad There Can Be Good
 

This post is for all of you that have asked me to update when I found out more of what was happening. I especially want the new family members to see hope when there appears to be none.

PAIN: Ed does have his pain under control which needed to be 'controlled' before he could even be considered before having the Gamma Knife. Right now he is taking 80mg of Oxycontin for the major pain and Percocets for breakthrough pain.

BRAIN METS: Ed had his third attack with brain mets. Last time we checked he had a single met in the frontal lobe which we were watching. His mets so far have remained with clear margins, without masses or edema. We decided to wait to see if any more would declare themselves with time. Right now we do not know if there are anymore there but with the help of the Gamma Knife Surgeon and Ed's Oncologist, we felt comfortable waiting this time. This is not for everyone but being the third time with brain mets in such a short time and already having whole brain radiation, just really could not see the poor man have a Gamma Knife for a single met knowing that in 6 weeks we might be back again to repeat.

SPINE/BONE METS: We are dealing with degenerative changes in the cervical spine and what appears to be a reoccurrence in the lower spine and a possible problem in the ribcage. Not really sure that we can radiate the lower spine, it is this area that we think we have cancer again.

PETSCAN: Cannot get the Gamma Knife until the Petscan is done and read.....going tomorrow at 1:30 pm (Eastern). Marie works her magic again since this whole thing gets more complicated than I write! I got everything ordered, approved and booked for the big guy....she shoots, she scores!

GAMMA KNIFE: Okay, pain under control, Petscan done and read (after Monday)....He is scheduled for the Gamma for 12-19-08!! I feel bad that he will not be up to par over the holidays but Mighty Oak said that this was my Christmas gift. Actually, I asked for it to be, selfish as it sounds. Gamma Surgeon is going back to Sweden from 12-23 thru 1-9-09 so we have to get this done beforehand. Chemo will not start until the Gamma is done.

BRAIN MRI/SPINAL MRI: Together these will be done before the Gamma itself. All in the same day enables Ed to get only one MRI instead of two. We must see what is happening down below. Still not positive there is anything systemic is going on in bones but Ed thinks there is. One thing Kate always told me was, listen to his body, Ed will tell you what is happening. Of course there are times that we all get paranoid. Right now I hope is it really true! LOL!

CHEMOTHERAPY: Cannot start chemo until all this is finished. Does not really matter because the brain is the main concern at the moment and that is being tended to. Treatment can start when the Gamma Surgeon is away in Sweden. Things are all working despite the major complications that occurred.

BONE SCAN COMPARISONS (re: ZOMETA) Well Ladies, how about some inspiration? Studies show first and last bone scan comparisons, results prove that the Zometa has repaired blastic and lytic lesions in bones. Yes, he has been on this drug monthly since the beginning of this journey. He really does not have a choice so we are pleased that this drug is working wonders.

SO...........with the bad there is always good. Things are moving forward and onward. My boy will not be feeling well at all during the holidays but he will be here right by my side. Poor guy, he said he is doing this as a part of my Christmas gift but really does not want to have 4 holes in his head. I told him not to worry, that he has holes in his head already! LOL>>Believe51

Love to all, remember....with bad there can be good, but there is always hope. Wish us luck and keep those prayers flowing, try to sprinkle some positive vibes our way and leave the rest to Mighty Oak and God!

Man can I talk!! LOL!

Thanks for the update..and the positive vibes!

Thank you for the detailed update. Ed and you are in my prayers. I am so inspired by your stength in this stuggle and ability to stay positive. Thanks also for all the prayers you sent my way during my MRI.

love,
shobha

Marie and Mighty Oak,

Mighty Oak and you will be in my prayers. I hope you have a good weekend.

Thanks for posting the update.

Amelia

Sending love, strength and hope your way.

Karen

Ohhh, we are so geared up for this to all materialize. I think I will celebrate with a Chocolate Martini...........and the dark chocolate covered, homemade pretzels I am making instead of using bows for the gifts.

We have good thoughts about this all.>>Believe51

PS: OncoMan laughed when I said I will be on meds through this all after what happened last time with my little escapee. He told me he could get me a prescription. Just in case, though! (laughing)

Dear Marie & Ed -
At last you have a good plan in place. Thank Heavens!
And yes, Ed may need a leash!

Marie - you can be my "social" secretary any time ...

Marie, thanks for the update. Sounds like you have a good plan in place for both of you. Remember you are both in my prayers. Sounds like we all could use someone like the "Mighty Marie" to keep our lives in check. Good luck to you and Ed.

Marie and Ed, Sending you lots of prayers and healing from California. thank you for the news, we love that you keep us updated. There is always hope! Much love, vickie

THinking of both of you this holiday

With love,

Terri

Hi Marie.....Wowza is all I can say! That was quite a report. How do you do it girl???? You are one strong woman.....loving, amazing AND strong....all wrapped into one amazing package. And Ed.....well you are just plain SUPERMAN!

Sending love and prayers to you both. God, wrap your Arms around these 2 children you love so much....let them feel your peace and love. Amen.

Mary Jo

Marie and Ed,

Your strength and determination are awe inspiring. Keep on fighting. We are all cheering you on!

Dear Marie and Ed,

Wishing you good luck and sending prayers.

all the best
caya

Marie,

You continue to amaze me! Keeping you and Ed in my thoughts and prayers as always.

believe 51
 

There is a new drug with potentially less side effects and potentially more effective than zoledronic acid up for approval w the FDA. It is called denosumab and I talked with the Amgen reps at San Antonio and they think it will be approved in 2009, maybe even early.

Works as an inhibitor of RANKL which is an entirely different mechanism of action compared to how Zoledronic acid works.

Just to let you know there may be more out there!

Best of luck and hang in there!

Lani

Keep us up to date and we'll keep feeding you info/AMMO!

Thinking of both of you...

Good wishes and thoughts to you both Marie, here's hoping for a peaceful and healthy new year..

Hey Beautiful!
He's always got the GREAT with the bad...cause he has YOU!
And I have you two in a special place in my heart and mind and "on my table"!!!
You truly are simply the best!
May God bless you both today in many wonderful ways,
ma

Thanks for the update...I continue to think of you.