~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