Recurrent Cholangiocarcinoma
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- This topic has 8 replies, 9 voices, and was last updated 13 years, 5 months ago by kavita1.
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July 13, 2011 at 8:57 am #50017kavita1Member
Hi heartdoc,
My situation unfortunately parallels yours.
My mom had a partial hepatectomy in July 2010, a year ago, with a Roux en Y repair, and she had complications of biliary peritonitis, sepsis and massive intraperitoneal fibrosis which require a second adhesion removal surgery in August 2010. she was finally strong enough to go through 2 months of xeloda and gemzar iv before she started getting episodes of recurrent cholangitis. The horrible part for us has been to watch her suffering.
Last night she went in for what was supposed to be a bile duct repair due to the recurrent cholangitis, and they found a recurrence; a 2 by 2 cm tumour which wasn’t seen on any of her pet CT scans, or her CT or her ultrasounds. Her tumour markers were very low to start with and were coming even lower as they treated her with iv pip tazo and then moved onto imipenem since she developed resistance to the pip tazo. We are in Canada, doing some hybridized care between the US and here. Her oncologist is at the Seattle Cancer Care Center, because that’s where she chooses to be, even though we took her to NYC last fall to memorial Sloan Kettering with Dr Goodman who was great. She offered my mom targeted radiation therapy at that time and stated there is a crucial three month window post resection where you should do something if you’re going to do anything at all. My mom refused at that time, we struggled as a family of physicians, my husband is a radiologist, Dad is a doc, Sis is a doc, and myself albeit we are in different specialties, it truly has been a nightmare for us because as we help our own patients beat and maintain their chronic diseases on a daily basis, we endure the physical and deeply emotional suffering of my mom. Her fighting spirit has deteriorated, and she is post op right now, and doesn’t even know that the so called bile duct stricture as seen on HIDA scan and cholangiogram is actually a 2 cm tumour.I am awake at 4 am on this forum because this is a site which has been an invaluable resource to myself and my family. My husband keeps asking why they never did any MRIs on her over the last 6 months; she’s had multiple CT scans but he says that MRIs are more sensitive a specific, and can highlight the biliary tree very well. We live thousands of kilometers away from my family, that also makes it hard. I try to keep the hope for my mom, and try to ask her to treat it like a chronic disease, diabetes, asthma, etc. But she has trouble understanding this approach and has a huge amount of comorbid depression, understandably. She has been seein a counsellor and a neuropschiatrist with mixed results.
All she can tell me is ” when I get better, I won’t be depressed anymore.” It is painful and heartbreaking for all of us, but especially her. They say half the battle is psychological, I wish she would take on a more positive and fighting spirit. We all need to be strong and band together for our loved ones.
Goodluck with her progress, I agree you should always seek a second opinion.
May 19, 2011 at 11:39 am #50016mlepp0416SpectatorHeartdoc:
My husband Tom was diagnosed with CC when he was 61. Three months later he had a successful left lobe resection (70% of liver removed) and his oncology team at the VA Medical Center in Milwaukee said he did not need chemo since they had gotten clean margins. (Mistake) He presented with an inoperable tumor 18 months later. In Dec. ’09 his then oncologist gave him 6 months and said radiation/chemo would not help. We did not listen to that, and found other docs who were willing to take a chance to help.It is now 20 months later and Tom is still here with me, and turned 64 in Feb. 2011. After 28 rounds of radiation, a few courses of oral chemo (Xledoa) and a few courses of IV chemo (Gemzar and Cisplatin) his inoperable tumor is dead and all of his numbers are coming down nicely. Still high but much better then they were.
During the past 20 months we have always remained positive and taken it one day at a time. I do not know how much longer he will be here with me, but I do not that keeping a positive attitude and that the power of prayer can do wonders, not to mention having doctors who ‘think outside of the box’!
Go with God and prayers are coming your Mom’s way.
Margaret
May 19, 2011 at 10:34 am #50015gavinModeratorHi Heartdoc,
Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your mum. I can’t really add anything to what the others have said to you but I just wanted to come here and welcome you here.
You are not alone here and we know what you are going through. I came here back in 2008 when my dad was diagnosed with inoperable CC and everyone here was such great support to me, and I know that everyone will also be of great support to you as well. My dad chose not to have chemo at first as he wanted to have a good quality of life for the time that he had left, so he had PDT as his first treatment with the possibility of chemo to follow. But as things turned out he couldn’t do the chemo. But he made the most of the good time that he had and he evn learned to ride a horse. I too hope that your mum will make the most of this time and enjoy life as best she can, and I am sure also that you and her grandkids will indeed make many happy memories for your mum.
I do hope that you will keep coming back here as we do know how you feel and what you are going through right now and we care.
My best wishes to you and your mum,
Gavin
May 19, 2011 at 6:12 am #50014slittle1127MemberDear HeartDoc – You, more than most, know how difficult it is to give or receive such a serious diagnosis. I am so sorry that you must take this journey, but your mom is blessed to have you because who better to be in her corner than someone who “speaks the language.” Please come often, let us know how your mom is doing and how your family is doing. We have walked the walk or are walking the walk so we really understand. May you make wonderful memories to cherish forever.
My 18 month old grandson still asks for his papa every single day. He lays on a blanket (with Papa’s picture on it) and kisses it over and over. Who would have thought that almost 4 months after Papa’s passing, that this little guy would be so connected? I am happy that they were able to have that much relationship in Noah’s short little life. His Papa would be very happy and very proud.
Blessings, Susan
May 18, 2011 at 1:39 pm #50013cherbourgSpectatorHi HeartDoc,
I understand what you are feeling. I am a Cytologist and was the one that diagnosed my Mom. I can’t tell you the range of emotions that passed through me when I saw those cells under my microscope. I’d seen CC once in the 30 years I’d been in cytology.
My Mom was treated at Duke and she was Stage IV with mets to the lungs when diagnosed. She was 76 and still working full time (by choice) and walking 5 or 6 miles a day. She had a bout of pleurisy and the cancer was found when doing a CT scan to r/o a blood clot.
Please make all the memories you can. My Mom lived almost exactly one year from diagnosis to her death. She danced at her only Granddaughter’s wedding and saw the birth of her second great grandchild. She was an amazing woman and I miss her every day.
You will get through this and you will be an advocate and a legacy for your Mom. Come here often….we are knowledgeable and caring.
I’m sending hugs and prayers for strenght,
Pam
May 18, 2011 at 7:19 am #50012marionsModeratorheartdoc…..welcome to our site. I am sorry to hear of your Mom’s recurrence. As you may know depending on how much radiation had been administered initially, a second treatment may be applicable. Also, you are mentioning that the recurrence appeared in a different location. Have you spoken with an radiologist re: another type of radiation?
All my best wishes,
MarionMay 18, 2011 at 3:44 am #50010lainySpectatorDear Heartdoc, welcome to our wonderful family. I cannot even imagine how tough it would be to be in the medical profession and still try to be positive and strong about your Mother. We have a saying around here and that is we try to be realistically optimistic. This is strange to ask a doctor but have you sought out an other opinion? We have had some good success stories here because of 2nd opinions. Also where is your Mother being treated? Please don’t listen to statistics, we seem to make our own. You have come to the right place to ask, vent or advise with the most caring, loving and knowledgable people. Please keep us posted on your Mother.
May 18, 2011 at 2:46 am #50011highsmithMemberheartdoc,
I am sorry for the progression. My dad was 62 and in otherwise fabulous health, although retired for seven years. He had a success Whipple, but only made it 13 months, 1 week. We had five opinions and looked for every option possible. We never gave up hope! We were so lucky and only had 68 hours of hospice, which was a blessing to us and my dad.
All the best to you and yours. My daughter, who is 5, understands Papi is no longer here on Earth but stills asks about him…
Stacey
May 18, 2011 at 2:34 am #5075heartdocMemberHello. My mother was diagnosed with cholangiocarcinoma last year. At the time, she had no evidence of spread of the disease. She underwent a partial hepatectomy with removal of the extrahepatic biliary system. One of her surgical margins had some atypical cells, so she had radiation and chemotherapy with 5-FU and gemcitabine. She completed chemo at the end of January, and her scan at that time didn’t show any recurrence. Unfortunately, her scan this month showed a met in another part of the liver as well as ascites, which looked malignant. She was started on xelota for palliative chemo, and she is going to get another scan in early July.
It’s really hard, for several reasons. She’s in her early 60s and she’s always been very healthy. She had been so hopeful for a cure, although I had warned her that the risk of recurrence was high. I’m a physician, although not an oncologist, so I realize her prognosis is poor. The cancer is very aggressive and came back so quickly despite amazing care. It’s hard trying to balance between being upbeat for her and knowing how serious this is. She’s still working, although I finally got her to agree to retire. I’m hoping she can enjoy herself now while she feels good. I have children and she is their only grandparent, and I hope they can make some good memories. We haven’t told them yet, since she wants to wait.
It’s tough to be in medicine and see her go through this.
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