debrah
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Hi Marions, Dr. Stuart has decided to start me on xeloda and iv avastin however I am having a heck of a time getting insurance to cover it. The copay is $1500.00 insane isn’t it. I am supposed to start the xeloda on wednesday and the avastin iv on thursday…hopefully . Are you familiar with this combination? My fingers are really painful so I will finish up for now. Thanks , deb
Margaret, I too agree about the time frame. I am feeling such guilt because I asked my oncologist who I really respect and even find him to be a funny guy. I put him on the spot and I wanted to hear the truth so I knew what I was up against. I feel like I am insulting him …..that is the last thing I would want to do. He tells me he never knows what to expect with me because my cc has never acted ‘normally’ which is a good thing. When I asked how long he said 12 to 18 months and that was about 6 months ago and if anything I feel better now than I did then. That must be a good sign
I am happy to hear that Tom is still kicking’ cancer @$$! You two must be quite a team! Thank you for reminding me to write to my son….I begin then I cry and can’t see anymore what I am writing. I will continue to write to all my children….I have 2 biological, adopted son and guardianship of my niece but all have grown and moved on except my baby boy….he will be 14 in December. The hardest part off this disease is seeing my children’s fear….because of the ones I love I will fight like a ‘cornered rat’! thanks for the advice 
Jim, you made me laugh out loud with the chemo brain….it is an awesome excuse isn’t it? lol But I especially liked the cornered rat scenario….because I had horses and chickens in my barn and of course a rat or two…..arghh they are nasty and definitely ready to fight! I generally would run screaming the other way but not this time I am gearing up for the fight of my life agin! thanks for the chuckles
PCL1029….heck of a name
I hope you are feeling well between treatment plans. I have no problem sharing what info I can REMEMBER..hahaha Currently I am receiving injection OXALPLATIN0.5mg and injection of GEMCITABINE HCL 200 and ? injection FOSAPREPITANT? in my chemo cocktail every other week. Originally I was on xeloda for 12 months and radiation for 6 weeks. Hope this helps…my cc was in my bile duct and discovered basically by accident. I was a very lucky woman to have the surgeon Dr. Roger Jenkins as he is the most brilliant and kindest doctor I have ever met. OK I am babbling, sorry. Thanks for sharing and I pray for courage and healing for all of us patient or caretakers! Marion…..I do recall Jeffs struggle with the guilt…thanks for reminding me. He was /is my hero
Peter and Kris..they too will always be apart of my heart…such courage and determination. There are many amazing people here I would love to help in any way I can. Marion…thanks for the encouragement! I have BCBS and have had it for years. I have NEVER had to pay for any scans! The only money I pay is for $15 co- payments. Good luck and be persistent eventually someone will wake up and smell the roses
Thanks Kate! I have been around for a while but have not been on site too much
Like many it is so sad and sometimes I feel guilty to be doing so well when others are not. I was dx’d in 3/2007 and as of today am doing just wonderful..Thank God! I will try to check in more often and let others know we can survive this. I certainly am not anyone special but have been blessed with clear scans for almost 4 years now. I agree it would be hysterical if the tattoos showed up….I still cannot believe I actually got one! It hurt like crazy but nothing like what I had already experienced with cc. I am trying to get up the courage to get another bird added to my’ branch of life’. hugs, debLainy…that is such a beautiful dream…I am so happy you were able to feel Teddys presence and comfort. I too had an experience similar to yours. I lost someone I loved very much recently. She was like my own ‘mom’. I cried every night feeling the enormity of her loss in my life and was having a very hard time with it all. I was staying at her vacation home with her daughter / aka my best friend sharing stories and trying to help each other heal. You could almost feel her presence…it was weird. When I went to bed that night..I expected to be very sad but instead I FELT like I was being held like a child wrapped securely in her arms. It was so peaceful…I slept like a baby. Her daughter also felt her moms presence that night. Although it sounds strange we both thank God for showing us that we are truly never apart
I wish you many more dreams of Teddy. So sorry for your loss hugs,debDefinitely NOT stupid. In the beginning I itched all over for weeks! Doctor thought it was contact dermatitis…and I began to do the change soap…detergent, diet etc…until I turned completely yellow did they figure I might be sick. I was also barely able to stay awake for long because I was so tired. Thankfully 4 years later I am doing very well…no serious issues, clear scans etc
Wishing you the best! debI know Marion…such a dork huh?
I almost ran back in but decided I will see him again next month and who knows maybe I can have another? This is called a midlife crisis. You know after surviving this cancer….I feel I can do so many things I would never of considered. I had no idea he was an artist….however that man is next to God for me….nothing should surprise me right? Good news…..Dr Jenkins feels I caught the tummy bug from my family and with the way I am re routed that the ‘bug’ traveled up the intestines directly into the liver and infected the liver bile itself. Let me tell you that if I ever see anyone with the tummy bug again I am heading for the hills with lots of antibiotics and bile thinners
I forgot to show him the chickadee…dah He is setting up an MRI only because I should of done that a while ago…nothing to do with this episode and I have a feeling that will be good news too. MArion….Oh Dr. Jenkins smiled widely and sends his best when I mentioned your name and Julie was so happy she is sending HUGS because she says she always does I also wanted to let you know that I saw The Cholangiocarcinoma pamphlet displayed prominently at his office. Way to go!!OH Marion….I will make a point of saying a big hello from you to the entire Lahey team! Julie included….she is wonderful! Have you met Maria at the desk? She is a crackerjack
Dr Jenkins seems to have more and more young residents? training under him. What a wonderful gift to share…he is the best isn’t he? I wonder what he will think of the chickadee tattoo I have sitting on the scar as if it were a branch…my first real tattoo besides the radiation dots ouch If I get brave enough I want to have other birds perched on my ‘branch’ of ‘life’. Gotta get my son on the bus….hugs, deb
