Patkid Posted August 4, 2005 Share Posted August 4, 2005 Bunny, Thank you so much for posting for us. You guys, I am so very tired and we are so very bummed, but we are drawn to this site. We have been home just a bit and needed to sign on to gather our strength for continuing on our journey. Thank you thank you thank you for the prayers and support and encouragement. Please continue prayer as we do for all of us. We went in to see doc a bit concerned about the Tarceva side effects. Brian's skin is splitting around his nail beds and his feet and one remaining hand are numb (doc was shocked to see this.......neuropathy is not usually associated w/ Trarceva......so ??? is it a residual effect of Cisplatin, VP 16?????) anyway, he has been very tired and running random fevers and having night sweats and chills..............We just were hoping the Tarceva dose could be lowered. The least we were hoping was that the tumors had stopped growing. And he could continue to gather strength for the fight. Well I could tell that doc was trying to find a way to shift the topic of conversation from side effects of Tarceva. He was looking at Brian's rash (which was really prominent today) and without looking at Brian's face he said, "Well, no more Tarceva for you, all it has done for you is give you side effects." He left that hanging out there to sink in. It did sink in and Brian said: "Then the scans weren't so good?" doc didn't say anything. He had the scans all sorted out and put Tues's up on the viewer on one side and the ones from June on the other. He went through several sheets till he came to the "ONE" . Brian and I both ~ even with our uneducated eyes ~ could see the concern! His lung tumor has grown like mad. Every bit of progress we had against it w/ Cisplatin/VP16's first two rounds is undone. The tumor is now closing off one of the 2 main bronchi.........I have a lot of studying to do!............ It is really really big. I can't describe it. The liver tumor has grown and 'brightened' as well, but not as remarkably as the lung/mediastinal. We just could not catch our collective breath. Anyway, Doc would waste no time. Bri is to stop Tarceva He began Carboplatin and CPT-11 today (4.5 hours total) His bloodwork was worrisome so he got some blood products, not sure just what? He gets another infusion day 8. weekly bloodwork and arenesp and so on........ then start over after one week off. Then scans right away cuz doc said WE MUST STOP THIS GROWTH..........so if this is not working he will throw something else at it. So I guess the symptoms were not Tarceva induced, but progression induced. Doc took Brian's hand and said "We are not done fighting" 'We have more guns in our arsenal, you are doing a super job of doing your part, I just have to get the right combo for you" . I am so scared. Brian is apologizing, fer cryen' out loud.........What a dear dear man.......... We are like deer in the headlights. I missed you all day. I usually have this site up most of the day on my work computer while I sell those fasteners..........and I needed you guys. Bunny Girl, thanks for taking my call in the middle of your day and for being a dear friend.........I needed my LCSC family and you brought them to me. Sorry this is so long........... thank you for reading it Brian said to remind you that August is the month for good news per our Tina, and that he is not going to be the one to mess it up..........so he plans on the new protocol doing a number on his tumor. We love you Now I want to read how the rest of us are doing. P Quote Link to comment Share on other sites More sharing options...
LynneH Posted August 4, 2005 Share Posted August 4, 2005 Pat and Brian, I just signed on and looked for your post. I am so very sorry for this news. In reading through your post and your agonizing pain, I get to the end and see that you both still have such love and spirit and fight! You two are definitely two of a kind. And a kind we all strive to be. I am thinking about your fight every day and am with you in spirit as you once again put the armor on and go to war and kick it's butt. Your doctor sounds wonderful and so supportive in finding the right agent. Thinking of you every day (and all day today), Lynne Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted August 5, 2005 Share Posted August 5, 2005 Hi Pat. There are a couple of wonderful "things" I can glean from your progress note.. one... your doc is there fighting right along with you, and wants to work to find the right bullet. And two, your attitude. I certainly can understand how emotionally drained you two must be. You will sleep well tonight. Hang in there you two. We are always here for you. Which reminds me...didja get my scratchy message? Thank you for thinking of me as a resource to call. Sorry I gave the wrong #! I emailed the correct one now. love you kids. Cindi o'h Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted August 5, 2005 Share Posted August 5, 2005 You are such incredible people... I will pray for Brian tonight. Quote Link to comment Share on other sites More sharing options...
terriep Posted August 5, 2005 Share Posted August 5, 2005 I have been waiting to hear your news all day. I wish it were better, but you know we are all there with you. Your doc sounds incredible - I will keep you both in my prayers, surrounded by love, Quote Link to comment Share on other sites More sharing options...
annjael Posted August 5, 2005 Share Posted August 5, 2005 Pat and Brian,,,,Sorry for this news. However, as you have said,,that your doc wants to continue to find the right chemo that will do the trick,,,,,that your doc is not giving up,,,,, That is very positive news! I will continue to pray for both of you. Peace and hugs Annjael Quote Link to comment Share on other sites More sharing options...
finster Posted August 5, 2005 Share Posted August 5, 2005 Well, I can think of several four letter words to say, but that won't help any. Just know that you are both in my thoughts and prayers. I really hope that we see some shrinkage with the CPT-11 and carboplatin. Quote Link to comment Share on other sites More sharing options...
Maryanne Posted August 5, 2005 Share Posted August 5, 2005 Hi Pat & Brian, The news may be dismal but your attitudes can move that mountain!! Put on those boxing gloves as Brian is up for the count. You have to spit in your opponent eye and just keep punching and fighting until that nasty beast is knocked down and out. You guys are amazing. You strength and belief is unyielding. You are also so lucky to have a wonderful person on your side who is going to fight with you all the way and that is his doctor. With a team like you guys and the doctor and all the prayers, you are a winning combination. Hang in there, you are both doing a tremendous job of coping through all of this. Your special bond and love for each other really shows with all your posts. Sending meditation prayers and will light a white candle for healing for Brian, I will put it next to Peggy's Don and Justakid (Beth). My room will be glowing... Please get some much need sleep and know you are in so many peoples prayers. Maryanne Quote Link to comment Share on other sites More sharing options...
Shar Posted August 5, 2005 Share Posted August 5, 2005 I know I am new on here, but I have been thinking of you guys all day today. I am just so sorry about the tarceva not working, but I really do hope this new combo works for you. I will be thinking of you both. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted August 5, 2005 Share Posted August 5, 2005 Brian and Pat, prayers continue. Don Quote Link to comment Share on other sites More sharing options...
nancy c Posted August 5, 2005 Share Posted August 5, 2005 Guys, i am so sorry for your news--but you have a doctor that is just yet begun to fight---so hang in there. I am praying for you. Pat, I am going to pm you. God bless and lots of hugs and prayers coming!!Nancy C Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted August 5, 2005 Share Posted August 5, 2005 Remember that quote"we have more guns in the arsenal" and don't EVER GIVE UP HOPE, NO MATTER WHAT. What a horrible day you've had. (((()))) Praying for strength for you both. Love ya' Spunky Keep smiling Quote Link to comment Share on other sites More sharing options...
SBeth Posted August 5, 2005 Share Posted August 5, 2005 {{{{{{{{{{{{Pat & Brian}}}}}}}}}}}}} Quote Link to comment Share on other sites More sharing options...
Addie Posted August 5, 2005 Share Posted August 5, 2005 I'm so glad to hear that Brian's doc is a scrapper too...and willing to keep fighting on Bri's behalf. He'll find the right chemo combo to turn things around.......BELIEVE in that, Brat. And know we're behind you both. I wish the news had been better...but at least now you know exactly what you're dealing with...and that is always a plus. Winging all good thoughts the way of my favorite "Brat-ty" couple! Quote Link to comment Share on other sites More sharing options...
Leslie221 Posted August 5, 2005 Share Posted August 5, 2005 Pat and Brian, After I read Bunny's post, I just sat here shaking my head. It's not fair. I don't have the words to explain how disappointed I am for you both - many of the words that come to mind can't be written here. But everyone's right - you have a great doctor who is committed to Brian and obviously DETERMINED to find the treatment that will work. That's a big, big plus in your favor! Try to get some rest. Sending all caring thoughts and strength your way. Will say a prayer for you both before I go to sleep tonight. Leslie Quote Link to comment Share on other sites More sharing options...
Ry Posted August 5, 2005 Share Posted August 5, 2005 There are a lot of days left in August...plenty of time to turn this into good news. I am so glad your doctor is being aggressive...hang in there. We're all here with you. Quote Link to comment Share on other sites More sharing options...
shineladysue Posted August 5, 2005 Share Posted August 5, 2005 Pat and Brian, As Ry says, there are a lot of days left in August. I am at a loss for words to tell you how I feel. Reading your post, I felt I was sitting there in that office with you. It was scary and I didn't like it there, but then when the doctor started talking about a new plan of attack, I felt better. You have my prayers, you know that . Try to rest easy tonight and put it in God's hands. Love and Prayers, Sue Quote Link to comment Share on other sites More sharing options...
bunny Posted August 5, 2005 Share Posted August 5, 2005 whew. I am so glad to hear that fight back in your voice, lady. and Brian! you're my hero, and I have no doubt you'll be King of August, the Month of Healing. Love you guys, please keep leaning on us. and god bless that doc! what a perfect match for your fighting spirits. xoxo amie Quote Link to comment Share on other sites More sharing options...
bbays Posted August 5, 2005 Share Posted August 5, 2005 I don't know what to say. I am so sorry, but as others have stated, you do have a great doctor that will do what it takes to fight that beast we all hate so much. Please know that I am saying special prayers for you. Loving you both, Barb Quote Link to comment Share on other sites More sharing options...
MilliBr1 Posted August 5, 2005 Share Posted August 5, 2005 Sounds like you have a good Doc and with your attitudes I'm sure you will turn this around! I will continue to keep both of you in my prayers. Quote Link to comment Share on other sites More sharing options...
Treebywater Posted August 5, 2005 Share Posted August 5, 2005 Brat-- You are so very, very much loved. I'm here fighting with you and praying for you. Quote Link to comment Share on other sites More sharing options...
NancyT Posted August 5, 2005 Share Posted August 5, 2005 Dear Pat and Brian, I have been looking for a post to see how things have been going. I am so sad to here this battle has gotten so very difficult but Brian has amazing strength.......sending prayers to both of you NancyT Quote Link to comment Share on other sites More sharing options...
Tiny Posted August 5, 2005 Share Posted August 5, 2005 Praying for you guys and for the onc to find the right combo in his arsenal. Know that you are loved and cherished. Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted August 5, 2005 Share Posted August 5, 2005 My thoughts and prayers are with you Brian/Pat in this most difficult of times. Hang in there. Rich Quote Link to comment Share on other sites More sharing options...
Eileen Posted August 5, 2005 Share Posted August 5, 2005 Pat and Brian I am so sorry for the progression, thank god you have a great Doctor that is willing to fight with you. Brian is correct, August is now designated as Good News month and I am hoping that your next post will be in that forum. regards, Quote Link to comment Share on other sites More sharing options...
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