Patkid Posted October 27, 2005 Share Posted October 27, 2005 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 Quote Link to comment Share on other sites More sharing options...
Nancy B Posted October 27, 2005 Share Posted October 27, 2005 Pat and Brian, Thanks Pat for posting, I have been wondering and praying. So glad Brian seems to have rallied somewhat. You guys just hang in there - my prayers are coming non-stop. Love and hugs, Nancy B Quote Link to comment Share on other sites More sharing options...
carolhg Posted October 27, 2005 Share Posted October 27, 2005 Pat, I am praying and trusting right along with you. I hope that this new drug is the one that turns thins around for the both of you. Prayers, Carol Quote Link to comment Share on other sites More sharing options...
Maryanne Posted October 28, 2005 Share Posted October 28, 2005 Praying for a miracle Pat... Brian is so brave. Maryanne Quote Link to comment Share on other sites More sharing options...
jorja Posted October 28, 2005 Share Posted October 28, 2005 I am so glad that the doctors are still fighting for Brian. Pat, just know that you are in my constant thoughts and prayers. love, jorja Quote Link to comment Share on other sites More sharing options...
Ann Posted October 28, 2005 Share Posted October 28, 2005 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. Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted October 28, 2005 Share Posted October 28, 2005 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. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted October 28, 2005 Share Posted October 28, 2005 Pat, I am glad that there are some things to try and that Brian is willing to try them. I pray that one of them or both will work for him. Don Quote Link to comment Share on other sites More sharing options...
Ry Posted October 28, 2005 Share Posted October 28, 2005 He is incredible and brave. I hope the rabbit your onc pulled out of his hat will be the magic for Brian. He is truly amazing to keep trying when he must be so discouraged. Keep us posted when you can....thinking of you both. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted October 28, 2005 Share Posted October 28, 2005 Sounds like Brian will cry "uncle" when he is ready to say uncle... Until, and if then, I am so glad that he has a doc who is willing to go to extremes with him. Count me among your friends who will be whispering Brian's name in prayer for a miracle. Cindi o'h Quote Link to comment Share on other sites More sharing options...
Treebywater Posted October 28, 2005 Share Posted October 28, 2005 Crying here.... I'm so grateful for you both. You teach me so much. I won't stop praying. I am full of hope for you guys. Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted October 28, 2005 Share Posted October 28, 2005 Pat, I'm so glad the doctor is able to pull out another rabbit for Brain. He is very brave - I respect, admire his courage and determination in his continuous battle. My thoughts and prayers are with the both of you, the kids for the best of results. Rich Quote Link to comment Share on other sites More sharing options...
NancyT Posted October 28, 2005 Share Posted October 28, 2005 Dear Pat and Brian, I cant tell you how much I admire you both, such a difficult journey and yet held together with such love and courage.Sending warm thoughts NancyT Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted October 28, 2005 Share Posted October 28, 2005 Pat and Brian,I am glad you have what seems like a dr. who is committed to doing everything possible.You both deserve that very much. Tell Brian he has my utmost respect for his courage,determination,stamina and fight. Quote Link to comment Share on other sites More sharing options...
gail p-m Posted October 28, 2005 Share Posted October 28, 2005 Pat and Brian-- Thanks for the update; I've been watching for it. Sending many prayers that this new drug will be the magic bullet for Brian. gail p-m Quote Link to comment Share on other sites More sharing options...
MilliBr1 Posted October 28, 2005 Share Posted October 28, 2005 Praying this new drug will work. Quote Link to comment Share on other sites More sharing options...
Suzie Q Posted October 28, 2005 Share Posted October 28, 2005 Pat, Brian's onc ROCKS! Boy, he is definately in Brian's corner. Be good to yourself, too. Get someone to relieve you so you can catch a break now and then. ~Suz Quote Link to comment Share on other sites More sharing options...
CharlieD Posted October 28, 2005 Share Posted October 28, 2005 Brian and Pat, Hoping and praying that the new drug and Alimta will do the trick. You are both so brave. Thanks for keeping us in the loop. It must be difficult. God Bless you both. CharlieD Quote Link to comment Share on other sites More sharing options...
stand4hope Posted October 28, 2005 Share Posted October 28, 2005 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 Quote Link to comment Share on other sites More sharing options...
karenl Posted October 28, 2005 Share Posted October 28, 2005 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 Quote Link to comment Share on other sites More sharing options...
Connie B Posted October 28, 2005 Share Posted October 28, 2005 Just wanted you both to know my prayers never stop. ((((((BRIAN & PAT)))))))) Quote Link to comment Share on other sites More sharing options...
Nushka Posted October 28, 2005 Share Posted October 28, 2005 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 Quote Link to comment Share on other sites More sharing options...
Shar Posted October 28, 2005 Share Posted October 28, 2005 You guys are to be admired for all of your courage and your never give up attitude. You really do give hope to others. I'll be sending positive thoughts to you both. Sharon Quote Link to comment Share on other sites More sharing options...
bunny Posted October 28, 2005 Share Posted October 28, 2005 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 Quote Link to comment Share on other sites More sharing options...
Kel M Posted October 28, 2005 Share Posted October 28, 2005 What tremendous courage the both of you have. You remain in my thoughts and prayers. I will wish you many more of Brian's smiles. Kel Quote Link to comment Share on other sites More sharing options...
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