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Brian's Onc Appt ~ Oct 27


Patkid

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Friends,

Here is the scoop:

Doctor and Brian went over all his current symptoms. Doctor said all of them are results of tumor activity in his body. He told Brian that there is very little left to throw at his tumors. The cell structure is so atypical and is so difficult to treat.

He explained that he would like to try Alimta if Brian would be willing to give it a go. He also told Brian that the weird cellular structure of his tumors made him think that a drug used to treat carcinoid tumors may work. It is called Sandostatin. I still have to look it up. Onc told us that he lied a bit to get it approved for Brian, but anything that could help was worth a white lie. Brian's dx doesn't warrant the use of Sandostatin, but it can be used for extreme diarrhea in chemo patients, so doc just worded things to get the drug approved. He said it is very expensive........

Brian got that new drug IV today, and tomorrow he gets it IM.

He got Alimta today and will get it again in 20 days. He got Aranesp, B12, Folic Acid, Aloxi, and Decadron.

He has been in bed most of the time since Monday night. He is on an endless cycle of chills/fever/sweats that keeps me very busy. He gets confused and has no interest in food, conversation, or current events.

Now, all that was true till 5 PM. He has gotten a burst of 'brianitis'. He asked for dinner and then ate it. He is reading is latest David McCullough book and smiling at me. I think it is the Decadron that is giving him some energy but I don't care. He is back with me for a while and he is smiling and I love it.

Brian melted my heart when he told doctor that he wanted to give treatment one or two more chances before he gives up. He told doctor he wants me and the children to know that he really really tried to stay with us and to be proud of him. He told him that he was really getting to the end of his tolerance for chemo side effects.

My husband is incredible. He is strong minded, strong willed, strong hearted and brave. I love him like fire.

I have filled out the paperwork for FMLA and plan to just 'be' with Brian now. ~ Good thing ~ I can't keep up w/ the laundry for all the soaking sweats!!

Well, I know this is long. Sorry for being so wordy. I really love you guys and feel so blessed for your understanding, support and concern.

Thank you for all the phone calls, pms, emails and notes.

I will try to be more faithful w/ posting as we get into a routine around here.

Onward

Pat

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Pat, I am so praying that this new combination of drugs will work magic for Brian. I am so glad you are able to take FMLA and devote all this time to just the two of you. You are both very strong and I'm sure you each draw your strength from the other. Now that Brian is more like himself, things will be much easier for you. The two of you always remain in my thoughts and prayers.

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I have such admiration for you both. I have never seen two more brave, courageous, devoted and determined people in my entire life. God is with you both, that's for sure. Brian, you keep up the fight and Pat you stand fast by him. God bless you both. (((())))

Spunky (Boy Brian, that should be your nickname!)

Love to you both.

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Dear Pat,

There's not much I can add to what the others have said. You two really do ROCK and God has blessed you with the most incredible love for each other. You are amazing.

Don had those horrible soaking sweats, too, from the Decadron, and the Decadron also gave him great energy that I really enjoyed, even though he did talk nonstop. :)

You both are in my prayers.

Love,

Peggy

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Hi Pat and Brian

So glad to hear that there are treatment options for Brian. With regard to the sandostatin, I'm pretty sure that Keith (of Carleen and Keith) has used that one, so you might want to search their posts for some info on it.

Thinking of you both,

Karen

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Pat and Brian,

Brian, I think you are so brave to keep on fighting like you are. The miracle we all pray for may be just the combo that your doctor has ordered.

Pat, I am glad you took the FML so that you two can be together. You know that you are both in my daily prayers. Keep in touch as much as you can. We all love you both so much.

Nina

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Pat, I am so happy to hear you sounding so heartened by yesterday's doctor visit. I truly adore this doctor, he's been such a caring advocate and devoted fighter for Brian. it's incredible.

your man is wonderful, he's one of my heroes. as are you. lean on us, hon.

love and prayers, as always.

xoxo

amie

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