• From: Oxnard, Ca
  • Registered: Mon, 03 Dec 2012
  • Posts: 20

Topic: Desperate!!!!

Hi anyone who will listen.  I lost my Mom to this horrible disease 5 yrs ago.  Now my 46 yr old brother has it! He was diagnosed in March.  He has been in treatment since March.  This past week he has had some complications.  He is having very bad pain I'm his stomach, his oncologist dismissed it. As the week went on the pain got worse.  He finally went to the hospital and they diagnosed him with a slight touch of colitis.  In addition he had liquid in his stomach.  The hospital told him to follow up with his oncologist. He is supposed to have chemo tomorrow. Does anyone think the fluid is a sign of the end, it was in my moms case.  I'm also so scared they will take him off treatment tomorrow. Is that possible?? Please please someone help me. I am so scared. I need advice from anyone who will offer.

Annie
My momma may she rest in peace after her short but courageous battle with CC.  My brother my hero, may he fight CC with all of his strength.
  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,216

Re: Desperate!!!!

Dear dedicated SIS, WELCOME TO OUR REMARKABLE FAMILY.  This is so rare for 2 members in one family to have CC. I believe we had one case where 2 relatives had it. Our Moderator Percy had a Sister-in-law who had it but they were not blood related.
Have you had a 2nd opinion, we are big believers in that. I don't understand an ONC dismissing pain?  Did he give him anything for the Colitis? I have had Ulcerative Colitis for a year now but have never had pain with it. I know there can be pain. Has the ONC checked out the fluid in his chest?  I believe that can be painful as well. What kind of treatment has your brother been on since March? Has be been on chemo? If so you can go off for a bit and it will still keep "cookin". Only the ONC or Nurse can say if treatment will continue tomorrow. Wish I could be of more help to you. My first concern is the fluid in the chest and the pain.
You must be very strong so your brother can garner strength from you. I am sure it is not easy for him to fight this knowing his Mom had the same thing. Please keep us updated as we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Oxnard, Ca
  • Registered: Mon, 03 Dec 2012
  • Posts: 20

Re: Desperate!!!!

Thank you so much for responding. Yes my Mom had it. He has gotten a second opinion and they think its a genetic cancer at this point.  The fluid was in his belly.  They tested it and it did not have an infection. He complaine about the pain to his oncologist about two weeks ago and told him due to what he was describing and where the pain is located that it was possible acid reflex. 
I am so helpless. My mom had similar symptoms and died so fast once they started to appear. They did a ct scan at the hospital and they said there had been no changes so I am so confused. I feel so alone. I'm so scared my brother is going to die soon. He will not come to terms with what is happening.  It is so frustrating cause I live about two hours from him. I don't know if I have the strength to get thru whatever news we get tomorrow. I'm worried his Oncologist has just given up.. sad
Thanks again for responding! My name is Annie and I have read everyone's posts and I'm so excited I finally started to post, looking for some support!

Annie
My momma may she rest in peace after her short but courageous battle with CC.  My brother my hero, may he fight CC with all of his strength.
  • From: Oxnard, Ca
  • Registered: Mon, 03 Dec 2012
  • Posts: 20

Re: Desperate!!!!

He is on chemo. He has been on cisplatin and gemc...

Annie
My momma may she rest in peace after her short but courageous battle with CC.  My brother my hero, may he fight CC with all of his strength.
  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,216

Re: Desperate!!!!

Annie, if he has been on chemo he can take a break for a bit. I would suggest a 3rd opinion. If the ONC thinks it is acid reflux why didn't he give him something for it? I am agreeing with you, such a simple matter to take care of. We have many on this Board who have gone for 3rd opinions and were extremely glad they did. I take it by no changes it means it has not grown nor has it shrunk? There are other Chemo
cocktails that can be tried. Again I would push a 3rd opinion. You never know how strong you are until "strong" is the only choice you have!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • Registered: Fri, 12 May 2006
  • Posts: 8,168

Re: Desperate!!!!

Anne....I too am sorry to hear of your brother's diagnoses.  Anne, I am wondering as to who is giving you the information?  Is your brother communicating with you? 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Oxnard, Ca
  • Registered: Mon, 03 Dec 2012
  • Posts: 20

Re: Desperate!!!!

Hi Marion!!!! I get my information from my brother and his wife.  I also spoke to his nurse while he was hospitalized.  She was such a downer.  She kept telling me how bad liver cancer is. I kept saying that I knew what we were up against and yes liver cancer is bad, but, my brothers primary cancer is bile duct located in the liver!!! Not sure if there's a difference but I was so frustrated.  She was so bleak. I realize I should go speak to the doctor but I'm such a coward, I won't go because I'm scared. I went once with my Mom not even knowing what to expect and the diagnosis was horrible it scarred me for life! Wish I could be stronger. I feel so alone. I'm so glad people are responding to me I'm able to connect with people who know how I feel.

Love and Peace,
Annie

Annie
My momma may she rest in peace after her short but courageous battle with CC.  My brother my hero, may he fight CC with all of his strength.
  • Registered: Fri, 12 May 2006
  • Posts: 8,168

Re: Desperate!!!!

Anne....  I understand your fear and anxiety, but you must know that within the last few years, treatment options have changed for the better.  Please, try to stay hopeful that your brother will benefit from these developments.    Crossing my fingers for much better news coming your way than what you fear to receive.
Hugs are heading your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,488

Re: Desperate!!!!

Hi Annie,

I am so sorry to hear about your brother's diagnosis. I know you can be braver than you say you are to help your brother fight this disease. I am sure it is very difficult for you since watching your dear Mom go through this. Just try and stay hopeful and help him any way you can. We are all here for you. Stay strong and keep us posted on how your brother is doing. All the best to both of you.

-Pam

Hoping for a miracle for my daughter, Lauren.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website

  • From: Akron, Ohio
  • Registered: Mon, 11 Apr 2011
  • Posts: 407

Re: Desperate!!!!

Annie,
I am so sorry you are dealing with this disease a second time. Please don't give up hope, every case is different. I have read that many of our family here has had stomach fluid, I know some had it drained. I am not a medical person or an expert but I can tell you there are options to be investigated. I will be praying for your family.
Lisa

Everyday is a gift

lisacraine's Website

  • From: Oxnard, Ca
  • Registered: Mon, 03 Dec 2012
  • Posts: 20

Re: Desperate!!!!

Thank you to so many who replied.  What a crazy week it has been. My brother did not get chemo they took him off for a couple of weeks.  The fluid is due to the cancer. They are trying to control the fluid with his diet and medication.  I got to see him this week. To me he didn't look that great.  His belly was really swollen. I of course started to freak out.  He lives close to Disneyland.  So we were able to spend a few hours with him there.  He was really tired so he headed home early. sad I know that made him really sad.  Today is his next appt.  after speaking with his wife she didn't say a lot but she did say they were not sure when or if chemo would start again.  I am praying that they still treat him with some type of chemo.  We are battling hopelessness and depression along with this horrible cancer.  Does anyone know if its normal to stop all treatment once the fluid is in the belly. It just sounds crazy that considering the cancer hasn't spread, they will stop all treatments??? I know I'm probably repeating myself I'm so anxious I can't stand it... Anyone with any info please respond.. Thank you all so much!!!

Annie
My momma may she rest in peace after her short but courageous battle with CC.  My brother my hero, may he fight CC with all of his strength.
  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,216

Re: Desperate!!!!

Dearest Annie, While I can't answer your question I can advise that any of you who feel hopeless and depressed ask your Doctors for something to take the edge off to help you get through this. Your brother is giving this his best fight so you all need to show a front of strength so he can lean on all of you. Like I have said before go outside if you have to and let it all out before you see your brother. I know it's hard but you can best help him by being strong! I don't know about chemo vs fluid in stomach but CHemo does keep on working a bit after it is stopped. Wishing you all the best.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Washington DC
  • Registered: Wed, 17 Oct 2012
  • Posts: 121

Re: Desperate!!!!

Hi Annie. I am SO sorry about your Mom and now your brother. He is so young. That's also why a second or third or fourth opinion is so, so important. I was basically told to get comfortable and die by three surgeons before the next four all said no way, there's lots they can do and will probably be able to resect after some targeted therapies. I dunno. It is so very depressing to be working with a doc who has written you off. So get out there and get those opinions!! I so hope you can find another doc for your brother because hopeless is not good at his age and general health. I am not a doc so I know nothing about fluid. But I know the hunt for hope and that's the path you want to be on. Reasonable hope, yes, but hope nonetheless. You must be an amazingly strong person. I'm just so sorry about the cc in your family. Mine also has a genetic mutation all our own: father, mother, sister, me. but all different camcers. They also think it is because we grew up in Oak Ridge Tennessee (National Lab Site) with all the radiation in the groundwater....whatever the reason, it is so unfair. Hugs to you and good luck.