May 9, 2012 at 9:55 pm #60782marionsModerator
Biscuit….I would like to follow the others in welcoming you to our site and would like to add that you might want to encourage your Mom to drink plenty of fluids, as it aids her kidneys by flushing the chemo our of her system. You might also want to add some protein drinks to her daily diet.
Good luck – we are rooting for you.
MarionMay 9, 2012 at 7:31 pm #60781gavinModerator
Welcome to the site. Sorry that you had to find us all and I’m sorry too to hear about your mum. But glad that you’ve joined us here as you have come to the best place for support and help, and I know that you will get loads of that from us all here. I can’t really add much to what the others have said to you, but I just wanted to welcome you here. And also, I so agree with what they have said regarding seeking opinions from doctors who have experience in CC and treating and diagnosing patients with CC.
I can so understand how this will have come to you as such a shock, especially so as you say that your mum was not showing any sypmtoms. It was quite similar for my dad also, He was showing no symptoms at all until the jaundice appeared, yellowing of the eyes and skin. Then he went into hospital for all of the tests and over 3 weeks later we got the news that he had CC and that it was inoperable. Hearing this news was a copmplete shock to us and totally came out of the blue, so I so know how you feel right now.
Please know taht we are here for you and know how you are feeling. Keep coming back here and let us know how everything goes for your mum. We care.
Best wishes to you and your mum,
GavinMay 9, 2012 at 7:10 pm #60780pamelaParticipant
Hi and welcome to the site. I cannot tell you how important it is to find a medical facility that is very experienced with Cholangiocarcinoma. I know it seems like such a pain to have to travel a long way, but if a facility can help your Mom, it will be so worth it. We travel over 200 miles each way to what we feel is the best place for our daughter and I am so thankful there is such a place available to us. It does not feel like a burden to us at all. It is just part of our life now. I hope you will seek such a place and do not listen to what doctors say about how much time your Mom has. Only God knows how much time your Mom has, and you have to make the best decisions to help her. We could’ve chosen to take Lauren to a facility close by, but I shudder to think of what might have happened. I’m sorry to be so blunt, but the right treatment is so important. All the best to you and your dear Mother.
-PamMay 9, 2012 at 5:53 pm #60776ccfighterParticipant
Biscuit, I would like to encourage your mother, if she is not doing it too… Look into Dietary issues… IE Juicing Greens and roots and naturopathic treatments as well. Many Doctors scoff at the benefits, However… I have been taking everything they have suggested… Vit C, Fish Oil, Vit D, Melitone, B2complex, Astraguline, Cummin, Shataki mushroom root (I know I mis-spelled most them).
CC is much more common in Asia for some reason and the mushroom root is used in almost all cases. (so I have heard)
I know this is crazy too… but Pepper… Black Pepper, Green Pepper, Halopino… Amazing cancer fighting agent. And I eat it like crazy. Drivers my wife nuts as she hates pepper!! lol!!
Lastly… Laughter… Joy… James 1:2 “consider it pure Joy when we face trails”… verse 1-8… I love them…
And then Worry not… Luke 12:22-26… key 25th verse “Which of you by worry can add a single minute to his life”
These verses… Prayer and encouragement has been my key!May 9, 2012 at 3:09 pm #60779
Hi thanks for replying to my post. We have been told that it started in 2 different places, the original dr who found it says it started in the gallbladder and her oncologist says it started in the bile duct. Her cancer is inoperable because it has spread everywhere, pancreas, liver, stomach all throughout her abdomen. Her oncologist says it is that the tumor started in the bile duct and spread everywhere else, that it “grew fingers” and attached to other organs. They say she is in stage IV and with treatment, we have heard 4-6 months and up to a year. She is not in any pain right now, just tells the doctors that every now and then she might get a little twinge here and there and thats it. The only symptom that she is having is that she says she does not have an appetite. We have been researching and researching all types of treatments. We have called cancer centers of america (the one in IL) and they say they are not taking any new medicare pts that live out of state, we have an appt with OSU this month, and she is getting 3rd opinion from another dr this friday to whom she was referred to by her doctor who did her double mastectomy (she went for a yearly check on monday to her) and my mom had told her about her new diagnosis. Last friday we went to First Dayton Cyberknife to see if she was a canidate and that dr said that because of the location of the cancer (some being in the fatty lining of the stomach that, it would be to hard of treatment on her) After my mom left the room , we had asked him what he thought and he said 4-6months with treatment and to get her affairs in place. We are hoping that the chemo that she is on Gemzar will work, we will no after 6 wks of treatment if it is working she will be getting her 3rd treatment today. If you dont mind me asking what type of chemo did your husbanc have? I am so glad to hear that his chemo was successful, and hope that all continues to go well… Keep me postedMay 9, 2012 at 1:29 pm #60778
Thanks, I understand that, Im not asking for medical advise just want to hear personal experiences that someone has had that is similar to my moms, just for hopeMay 9, 2012 at 1:24 pm #60777lainyParticipant
Dear Biscuit, welcome to our remarkable family but sorry you had to find us. I am especially sorry about your Mother. IF, in your gut you feel something is not right, please do seek another opinion. You really need to inquire at a major Cancer center like Mayo in Rochester, MD Anderson in Houston or Sloan Kettering. If you send her test results some will give an opinion by phone. Oh, also Barnes Jewish Hospital in St. Louis. On our home page we have a Category of Hospitals. We have quite a few members from Ohio who are being seen in Michigan. You have come to the right place here and I know others will be chiming in soon. Be strong and please keep us posted, we truly care.May 9, 2012 at 11:26 am #6799
My mother was just recently diagnosed with stage 4 cholangiocarcinoma. She has had three treatments of Gemzar, and we have been to other doctors seeking more treatment options, hoping for a better answers than we’ve got. Doctors say she has a year at most with treatment, another doctor said 4-6 months with treatment. This all has just come as such a shock to us all, she has no symptoms, other than she says she doesn’t have much of an appetite, which we thought it was from her not eating for the week she was in the hospital. That is when we found out she had cancer, she originally went in for gall stones, had testing done, nothing was abnormal, other than gall stones, they went to take her gallbladder out and thats when they saw the cancer.
Any advise ot suggestions? we are so desperate to get better answers and help our mom, we love her so much and I can’t bare the thought of loosing her :'(
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