• From: Louisville Kentucky
  • Registered: Wed, 07 Jun 2006
  • Posts: 3

Topic: Just wanted to find some info on this type of cacer

Hello, my name is Vicky and i am new to this website. My 63 year old mother was just diagnosed with cholangiocarcinoma in april and she is going down hill really fast. I was hoping that some one on here could talk to me about this awful stuff. I am so mad that i am about to lose my mother. I say that because she is so sick and i feel like i am losing her but i hope i am wrong. She has lived with me for about 22 years and we are so close. I have 2 brothers that are younger than me but she is just closer to me don't get me wrong she loves her boys greatly. She also has non small cell lung cancer. This cancer is different from the liver cancer. I told the dr. how lucky can one be to have 2 cancers. I was just so mad at the world i had to be sarcastic. Well if anyone would like to talk to me please feel free to do so.I will greatly appreciate  it.
                                              Thank You
                                                       Vicky

  • From: Alta Loma, CA
  • Registered: Sun, 02 Apr 2006
  • Posts: 28

Re: Just wanted to find some info on this type of cacer

Vicky--I am on this site almost every day and, while I don't usually write, I  had to respond to your message.  I'm so sorry your mom has this terrible disease.  I can understand your anger and have felt it, too.  My husband was diagnosed with cholangiocarcinoma in August, 2005.  He beat stomach cancer in 1992---non-Hodgkins lymphoma in 1998---and now cholangiocarcinoma in 2005.  All three were primary cancers and not related to each other.  It seems like each time we began to feel safe and to believe we had beat the cancer, he would develop another.  He was 42 when first diagnosed in '92 and has spent the last 14 years dealing with cancer.    Who would think someone could get 3 separate primary cancers?  How can all this happen to one person and why should he, and our family, have to endure so much?  I have had so much anger and yelled, "it's not fair!" so many times. 

But I've learned  not to let anger take over my life.  I've learned, as so many others on this site have learned, to live for the day and be thankful for all we've been blessed with (3 beautiful daughters, 6 wonderful grandchildren, and 39 years of happy memories)--and the hope (there is always hope) of a cure and much more time together. 

Please don't lose hope for your mom.  There is so much out there that may help her.  Read all the info on this site and check out all your options.  Make sure your mother's doctors are helping you fight this disease.  There are some doctors who think that, since there is no known cure, there is no reason to do chemo or any other treatments.  Don't settle for this.  Find a doctor who will work with you to find a treatment that may help your mom--who will cheer your successes, however small, and encourage you to fight.  And stay on this site and read the stories about the amazing people who are fighting the battle and sharing their stories so that others may be encouraged to continue their fight.  They are all so brave and such inspirations to all of us. 

A doctor once told us that he believes that a positive attitude is 99% of the cure.  After seeing my husband battle cancer 3 times, all the while never doubting he would survive, I believe this is true.  That, and our faith in God, has seen us through these trials and will continue to do so.  Do I still get angry?  You bet!  But not for long-- we have too much to be thankful for and lots of life to enjoy to stay mad.

I'll pray for your Mom, as I do for everyone on this wonderful site.  God bless!

Juanita

  • Registered: Fri, 06 Jan 2006
  • Posts: 258

Re: Just wanted to find some info on this type of cacer

I just spoke to Maureen Foley the Chief Operating Officer over Pro-pharmaceuticals.  Dr. Marilyn Pike is no longer with the company.  Dr. Bryan Hamilton has replaced her as Consulting Medical Director but can be reached at the same number (617) 559-0033. 

Maureen said they are in process of getting trials online with Davanat and you can track that at clinicaltrials.gov, there is a link on the general information page of this site as well.  If you want more information on the patient with cholangio that Samantha described above you can go to their website at www.pro-pharmaceuticals.com and you can look at the press release there.  The patient was on this trial because the oncologist felt they had less than 12 weeks to live and this particular patient was on a combination including Davanat for 12 months after this. 

Amazing, but ofcourse a singular success story.  Since the trials have not even begun yet, it will be interesting to see how things work for patients involved.  I hope if you live in one of the areas being considered and participate in one of the trials, you will keep us all updated.

  • From: Louisville Kentucky
  • Registered: Wed, 07 Jun 2006
  • Posts: 3

Re: Just wanted to find some info on this type of cacer

Thanks to all who replyed to me.  I just found out that the doctor is refering hospice to mom.  They will be here on monday.  I called them because i was curios about when and why they come to visit.  Well i wish i would have not done that.  The nurse that talked with me was sooooooo very nice and informative.... but she also so said things that i wasn't expecting to hear. (Not Her Fault) .She told me that hospice gets involved when the doc feels like there is nothing more they can do for the paitent. And when the paitent has 6 months or less left. OMG my heart drop to the floor.  I knew mom was going down hill quick but not that quick.  We just got the diagnos early im may.  But what i did learn is the Cholangiocarcinoma was not the factor here it is the non small cell lung cancer ( very aggresive ).  So i ask the nurse if she knew anything about NSCLC she said yes her mom died from it.  Mom is having very sharp pains in her left temple shooting to her ear so i ask her could the cancer have spread to her head or brain that fast and she informed me yes it can. I was so sick.  Thats why i couldn't understand that if cholangio was slow growing why mom was so sick.... now i know.  Here i thought i would have at least a year and maybe we still will.  I just want to ask everyone on here to pray for my loving mom and i will pray for each and everyone of you.  If anyone on here has experinced the NSCLC please respond and let me know what to expect and if this is painful. thanks to all
                                    Vicky

  • Registered: Fri, 09 Jun 2006
  • Posts: 1

Re: Just wanted to find some info on this type of cacer

Following rash & mild jaundice Jerry's CTSCAN showed tumor in bile duct - Nov., 05.   Bile duct catheter placed in Dec.    Oncologist  suggested chemo,but with only minimal chance of shrinkage of tumor, but with considerable side effects.   He chose no treatment & does not regret.   As of June 9, he is progressively weaker but at home.  Hospice nurse visits once/wk.  His greatest problem is blood clots causing very swollen legs & one arm.  He is now on Lasix, coumadin & methodone.   He is 74 yrs & has always been in excellent health with NO health problems & leading very active life. (Much younger than 74).   I also read about Asian parasite - he served 21 months in Korea during war (1953/54).  He is respected for not choosing treatment.   He does have living will & hospice care readily available.   We are very fortunate to wonderful family & friends.    This has been a catharsis for me - thank you.

  • From: Louisville Kentucky
  • Registered: Wed, 07 Jun 2006
  • Posts: 3

Re: Just wanted to find some info on this type of cacer

Hello to everyone on here just wanted to let evryone know i lost my loving mom on 6-19-06.  She went very peaceful but yet tooooooo soon for me.  I will miss her termendously but i know she is in no pain right now.  Thanks to all
                                                                     Vicky