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

I am wondering what chemo cocktail will come next.  I just had my MRI about 2 weeks ago to see what my lesions from my recurrence of cc were doing....seems after 6 months of oxaliplatin and gemcitabine they continue to grow roll   My oncologist is on vacation and all I know is that the team will meet and decide what chemo we should do next.   Any ideas what my options are?  What has worked for others and side effects etc?   I was also wondering if the side effects from my recent chemo (numbness and tingling) in my fingers and feet will ever go away?  Although it was said to me that I have 12 to 18 months  to live ,6 months ago I don't believe it for a minute smile  I have way to much left to live for... wink Best wishes to all our family and friends here on the cc board.   <<hugs>> deb

elsyr73...thanks for the positive thoughts and prayers smile

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 smile  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 <3

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 smile

PCL1029....heck of a name smile  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! <3

Marion.....I do recall Jeffs struggle with the guilt...thanks for reminding me.  He was /is my hero <3   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! <3

I have not been on here for a  long time and I apologize...I could not figure out how to log on again.   I think I have chemo brain to the max....seriously loosing it at 50. I found out after several hospitalizations, 911 calls and a false sense of security that so many new sites of cancer have filled my liver.   I am also told there is no CURE and have been given 12 months to live.   Seriously I am devastated...my 13 year old son is struggling with the thought of loosing his mom.  That is really the hardest part for me....leaving my children....I have such guilt over the pain my illness has caused them. sad  I am doing chemo for pain management but I am trying to convince myself that I have longer than just a year maybe 7 yrs or 20?   I'll take whatever I can have and be blessed to have time with my family and friends.   I do have a question to ask about chemo side effects......I get the normal nausea and fatigue but my memory is getting kinda scary like I forgot twice already what side of the road to drive on...what the heck is that all about?   I have an appt with a neurologist in December but by then I might forget who the heck I am...lol      Now that I have figured out how to log in I hope to catch up with everyone...it has been far too long.   I was diagnosed in march 2007,deb

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 smile

Thanks Kate!   I have been around for a while but have not been on site too much sad  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, deb


(4 replies, posted in General Discussion)

Lainy...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 smile  I wish you many more dreams of Teddy. <3  So sorry for your loss  sad  hugs,deb

Definitely 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 smile  Wishing you the best! deb

I did and I will smile  as soon as I can it might take a little bit ok? We should chat someday smile

I know Marion...such a dork huh? smile  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? <3

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 smile   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 smile   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 smile  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 smile ouch smile  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

It's been quite some time since I have visited the site.  I am heart broken to learn about Kris' passing sad  Kris, Jeff and Peter have been my inspiration since the beginning.  That being said it makes me even more nervous that after almost 4 years of clear sailing I ended up in the ER last week with the most intense pain (in my surgical site) I have EVER experienced!     Thank God for diloudid.   The doctors think  it may have been an infection in the biliary tree and even a kink in the intestines .  Whatever it was I see my surgeon tomorrow and will see what he thinks.  You know when you have gone so long without trouble you do get a little nervous.  I thought I was checking out the pain was so bad....severe bloating, vomiting and excruciating pain.  Has this happened to anyone else here? And if so how are things going?   I bet I find out that I have to lose some of the jiggle I may have gained over the last year huh?  I feel 99% better after a week on antibiotics and bile thinners smile  Hope to be able to catch up with the group and share good news smile  hugs, deb

We are so sad,  we were so blessed,  they are so missed...  forever in our hearts. <3


(30 replies, posted in General Discussion)

done...a little late but done all the same smile

Hi Kris,   I don't check in too often but as soon as I do I check to see how you have been .  I think of often and send .prayers your way.  As usual you continue to amaze me with your beautiful spirit!  You go have a fantastic time in Paris come home and kick butt with the surgery and then have another beer with lime for the rest of us followed by an anti nausea chaser!  You continue to inspire the rest of us kiddo...thanks...sending love from the states!

Hi Jill,  I have BCBS and have has many scans including several PET scans that were fully covered no questions asked.  I wish you lots of luck...fighting back helps..not that you need that on top of everything else.  Wishing you the best. deb

Thank you all for your well wishes...they worked!  Just got back from my ct scan and seeing my surgeon ,Dr Jenkins and oncologist, Dr Stuart at Lahey Clinic In Burlington MA!   I don't know who was happier my doctors or myself!   I love my doctors!  My scan was completely NORMAL, actually my oncologist said even more normal than my last scan that looked normal smile  My surgeon said with a huge hug and smiles from  ear to ear that this is why he does what he does...he is my miracle surgeon!!!  I was so happy I kept telling him I loved him and on and on  so goofy but so relieved!  Just think, they could not get all the cancer surgically 3 years ago and had to leave it on my portal vein and I also had multiple positive lymph nodes.  There is always hope...although I did not beleive that in the beginning here I am..I pray that many more of you have positive results too.  hugs to all, deb i.

Hello fellow cc members,   Sorry, I have not posted for quite some time.  Life keeps me too busy it seems...but it is time again for my next CT scan.  This time it has been 6 months since my last scan and I am feeling pretty confident that it will be good news because I feel good smile  Next month will be my three year anniversary  since being diagnosed with Cholangiocarcinoma. I have been blessed to consistently have clean scans since 2007  I see that there are many new members to the cc family and I would just like to encourage others with cc or family members and caretakers that there is always hope.  I am now 48 and feeling better than I have in many years after 9 months on xeloda and the  six weeks of radiation following my roux en y hepatico jujenostomy in March of 2007.   Thinking of you all and praying for each one of you!  God Bless, Debrah I.  smile


(14 replies, posted in General Discussion)

My friend also had extremely painful mouth sores...she was given a script for  Magic Mouth Wash, mentioned earlier ,to rinse her mouth with pretty much as need and I think the doctor also lowered her chemo dose...wishing you the best, deb


(16 replies, posted in General Discussion)

Dear Kris, I have not been here in quite some time but you are always the first person I look to find and pray that you are doing well every time.  I am sorry that your news was not better but honey you are one of the special ones, like Jeff and Peter...you are tough and strong and kind and compassionate and sure as heck you are no quitter! And when you feel scared then I beleive the rest of this board lifts you up in prayer and strength when you are unable.  Honey, you have blessed so very many on this board including myself  that I feel that God will bless you in his own very special way as well.   Keep up the good work Kris...rest when you need, cry when you must and then continue to kick some more cancer @$$.  hugs, deb