~Mighty Oak Update~7-29-09! Uggh!
 

Well, we never did make it to OncoMan's today and Ed was really anticipating it too. I spoke to my nurse advocate with 'a hand's up-in-the-air' attitude and choked back tears.

OncoMan wants to admit Ed for the day and perform all the testing that should have been done in the last several weeks. Uggh. We will see if that is possible.

On the brighter note, his markers are cut in half and this is really great news. We have stopped the Ixempra but after the tests we will start another treatment. I think it will be Temodar for the brain mets and Navelbine, I feel that this would be the easiest of treatments for him. It is that or stop treatment, he is too frail and I will not be responsible for digging a grave.

TUMOR MARKERS CUT IN HALF....now let us see if this passed the BBB! Although the BBB can sometimes be destroyed with the massive amounts of mets he has, Ixempra was all he was on. How I would love to share that news with you all.

Now let me see if I can lasso him into getting admitted tomorrow. Pray for me because I am having major trouble with the way things are happening to him. Besides, I am ready to drug him and take him against his will (laughing)Well, atleast he is getting stronger. Love to all>>Believe51

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Ughh, I can't believe what you are going through. It is so unfair. I will continue to pray for you.

I am so glad to hear that the markers are down by half. That is really good news.

Hang in there and good luck tomorrow!

Love, Hope, Peace,
Carolyn

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

sending some prayers and hugs your way! love yu both!

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Marie,

I'd like to see those mighty big shoulders you have--you sure can carry a lot. I'm keeping you both in my prayers. Hang Tough Girl!

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Marie, I think there are 2 strong-willed, super people in your house! I'm so glad that you two have lots of smiles in storage ready to pull out at a moments notice. this is so hard for you and I can't imagine the concern you feel. I add my prayers and hugs sweet girl. Much love, ma

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Hang in there, sweet sister. Sending you more prayers today. You are always in my heart...both of you. The Navelbine should be so much easier to tolerate. I couldn't do the Ixempra, so I'm mighty proud of ed actually getting through that treatment and the fact that his markers are down is wonderful.
And as far as that cane goes, I pray he doesn't need that wheel chair anytime soon.
I love you both mucho,
vickie

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Believe....believe....believe!!!!!!!

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Love you two. Best of everything.

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Sending big hugs to you Marie and of course to the Mighty Oak.

all the best
caya

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

remember to ask what the dosimetry was with his prior WBR and targetted treatment ie how many rads the different parts of his brain were exposed to.

If there is a sample from a biopsy that could be tested for the Na-I symporter AND he has it, there is that possibility for radioactive iodine treatment.

As far as I can determine there is no reason radioactive iodine would not cross the blood brain barrier.

So don't give up HOPE--alternative treatments seem to be out there.

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

what about IMRT on the brain mets? I had it on 5 at one time last Sept... and I get the feeling my rads onc would have probably done it on 7-8 if I had had that many...

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Problem is there are more than 50 mets, they stopped counting after that. They are behind, under, over and near other mets and too numerous to even bother to count. There is no way he can get any kind of radiation in the brain.

Deep down inside I still have good feelings about this. And Oakster, well he finished making me laugh to no end. We are in this to win and I beg that we do.....not just for Ed and I but for us all.

I'll keep you all posted.>>Believe51

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Dear Marie -

Markers DOWN - is a wonderful sign.
If Ed wants any more treatments he HAS to leave the house! You can post a "guard" to keep Grandmonster away! Men can be SO territorial.

Taking Ed to the hospital under his own steam is much preferable to having to call the Aid Car. I am praying he will want to go with you - cane and all!

Lots of love and many prayers to you both.

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

HI Marie, I'm sorry to hear that Ed has to be in the hospital all day, but the tumor markers down is a great sign! Sending positive thoughts your way. My sister had an easy time with Navelbine, I hope it's much easier for Ed then the Ixempra! Take care of yourself! All my love, Jennifer (Joy's little sister)

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Marie
The markers being down sounds good, hoping you can get Ed to go on his own...he needs this tests to assess what all is going on.....sending strength and love to you both. By the way, I heard from Gemma and she is getting a huge response from Ixempra.....her last CT's & MRI showed NED!!!!!

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Marie, that is great news on the tumor markers! Great news to start of the day with.

I don't believe that I've ever seen two stronger people than you guys. Keep on fightin', and having my prayers and support go without saying!

Doug

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Good morning, Marie. I hope that Mighty Oak agrees to the day of hospitalization, and that whatever comes next for treatment is tolerated and produces the greatest result. Having the tumor markers down is great news!
I think of you both very, very often each day and your are always in my prayers.

Barb

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

PS The person to ask about the dosimetry would be the radiation therapists who did the WBR and the Gamma/Cyberknife treatments.

Sorry to sound like a broken record, but keeping a Plan B alive and in motion is in itself a source of hope

Hope this helps!

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Marie,

Ed it lucky to have you. I don't see how you manage sometimes to keep up. You're both in my prayers that the tumor markers will continue to get lower with the treatment.

Lots of hugs,

Joan

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

I am so glad to read this updte before we leave (in about 10 min!) for 10 days vacation where internet will be spotty. Sounds like things are going as well as they can and I am praying with all my heart and soul for you both. Two stronger people are hard to find...MIGHTY OAK and his mightier watering can!!! I love you both!!! XO Suzan

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Marie, you and Ed are such tremendous warriors! You inspire so many of us, and you are definitely in many daily thoughts and prayers, mine included. Please let us know how all the tests turn out. We are praying for more good news. Markers down is definitely good! Love and prayers, Tricia

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Thinking of you both.

Janie

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Cheers to Mighty Oak on the reduced tumor markers. Hopefully that will give him hope to keep putting one foot in front of the other and keep going.
Admitting him and doing tests sounds like a good plan.
I hope it works out. Maybe a change in chemo will help.
I will keep my fingers (and toes) crossed for that.
Sometimes men need a little push when it comes to health care. Smile. Keep pushing !!

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Marie,

I am so happy to hear Oak's markers have fallen in response to the treatment. He's one tough acorn, that boy of yours!

As always I remain inspired by you both. Good luck tomorrow. I will have your backs in prayer. Please keep us posted!

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Marie,
I continue my prayers for Ed and your family. Praying for a comfortable next treatment and that you won't have to lasso him. Hehe. Take care and sending you lots of love and blessings.

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Marie,

Great news on the tumor markers since they seem to be a good indication for what's going on with Ed. Sounds like he still has some spunk left in him - channel it, channel it. Best of luck to you both with the next bend in the road.

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Marie,
hang in there my friend. A little bit of good news is good medicine.

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Marie - Joan has stated my thoughts - Ed is so luckly to have you and your constant love care and fight. I know you are fighting for both of you. You are amazing. I'm praying you will get ED to the hospital for the tests so with those results the best treatment plan can be started. Wish we could all come there and walk with you two to that appointment - picture us all there with you surrounding you.

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Dear Ed and Marie,
I'm sending you lots of love and prayers! flying kisses,too.

Hugs,
Gemma

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Marie, just wanted you to know you're both in my thoughts..hang in there :)

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Dear Marie,

Sending lots of prayers and positive thoughts your way. Ed is indeed fortunate to have such a loving wife and friend!

I am so happy to hear about his tumor markers going down! Keep the good news coming!

Love,
shobha

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

You and Ed are in my prayers, those prayers are for strength for you both, and healing.
Hugs,
Diane

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

There's a lot to be said for getting all the test over at once. Good news about the markers. Take care of yourself, Marie.

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Just adding my thoughts and prayers to you. You
just have to keep on keeping on and you are doing
a great job. Love and Light
patb

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Marie,

Glad to hear about the Temodar. That's what I 'picked' to stay with, since it is the only brain specific chemo. My onc went and chose Avastin for me for now... to see how that works. In a month and two we'll do more MRi and TM test. It was at my all time high of 357 or some such. First out of the norm these past near 7 yrs of brain mets only.

I was just thinking again today about needing my OLD cane. Went in a garage sale I think...

I'm also on 12mg decadron, 4mg 3x'x per day, since Wed. and hit and miss since last Fri. Plan to change to Irinotecan/Temodar (new dose or schedule) should the Avistin not do the number...or maybe even add it to tx.

Still not doing well. My brain stem pons tumor is 11mm - another in cerrebellum @ 12mmx16mm. Others of 1cm in size. Nothing over 6 in number tho'. Yet, these are causing the vomiting, headaches, confusion, bumbles, shakieness all over, inside and out...

Wish Lyle could sit with you and visit... so glad to hear that laughter coming down the pipe, too :o)

Sending the love and bits of hope,
XOXOXOXpatty

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Marie and Mighty Oak,

I am thinking about you again today. I'm still asking God for that miracle for Ed. I like that his markers are lower. Keep us posted please.

Re: ~Mighty Oak Update~7-29-09! Uggh!
 

Just wondering. Has Ed every tried Tykerb with Herceptin? Tykerb (Lapatinib)passes the blood brain barrier and circulates in the brain. I am still cheering for you guys. Take care.

Re: ~Mighty Oak Update~7-29-09! Uggh!