August 11, 2008 at 9:06 pm #21137wabalsMember
Please get another opinion. If nothing else you will know you did all you could. My husband had surgery at Johns Hopkins a year after we were told he was”terminal” at a DC hospital. Dr. Michael Choti is world known, just did the ASCO conference on cc. He is also a researcher. My husband had 10 mos of Gemzar prior to surgery. He also had diffuse disease. Give it a try.August 11, 2008 at 8:45 pm #21136devoncatParticipant
I dont know what to say or suggest. It must feel terrible to witness your mothers pain. Please stay strong.
KRisAugust 11, 2008 at 8:29 pm #21135
Well my mom has seemingly been turned down by every doctor and hospital now. She still has some good days sometimes, but it seems her bad days are now outnumbering the good ones. She’s always sick to her stomach (especially the first half of each day), and she does well if she eats 2-3 crackers for a whole day. Her pain medicine is becoming less and less effective. They’ve upped the dosage, but it seems to not help so much. This is gut wrenching witnessing her pain, nausea and yellow skin and eyes. I feel so helpless. I want to help more, and want to make it go away, it’s just a bad situation.
MarkJuly 29, 2008 at 8:00 pm #21134carol58Participant
Dr. Benjamin Calvo performed Charlie’s liver resection last year at UNC Hospital. He was great. Thought it wouldn’t hurt to have some specific names while you’re researching.
CarolJuly 29, 2008 at 6:00 pm #21133sophieMember
Dear Wests, so sorry for you and your family.
I started out with the nausea too which finally forced me to go to the doctor. My labwork was good but was eventually diagnosed with cc. City of Hope did a portal vein embolization on me with the intention of getting my left lobe to regenerate and then doing a resection. Unfortunately they couldn’t do the resection, but I do believe the portal vein embolization eliminated the nausea and kept me from being jaundiced. In addition, the doctor did say it might have caused the tumor to shrink a bit. I have a large tumor..over eleven cms. The oncologist needs to refer your loved one to a good liver surgeon. There might be options out there for you..take her home; we can’t do anything is not an option with this initial diagnosis.
Best wishes and prayers
SophieJuly 29, 2008 at 5:54 pm #21132carol58Participant
Mark, Charlie has been treated at UNC hospital in Chapel Hill by Dr. Hanna Sanoff. She is a wonderful and very knowledgable doctor. Kris (Devoncat) on the board has also seen her. I think I know how you feel. I didn’t think Charlie would make it to Christmas last year and here he is still going (not so) strong, but definitely still going. I hope this helps. Wishing the best for your Mom.
CarolJuly 29, 2008 at 5:36 pm #21131
Patty, you are absolutely right. Years doesn’t seem to be an option at this point. I’d be thrilled if she’d make it to Christmas. Next April would be my parents 50th weddign anniversary. Yes, I am glad I found this site…. kind of a support group kind of thing. And I appreciate everyone’s concern. I’ll probably check back in a few days from now.
MarkJuly 29, 2008 at 4:37 pm #21130tiapattyMember
I am so sorry to hear that your mom is not a candidate. I think the worst part of this cancer is how helpless it makes you feel, when you love someone you are prepared to go to the ends of the earth for them and it’s hard to accept it when you are told there is nothing that can be done.
What’s hard, too, is that when people hear the word cancer nowadays, they think of it as something that can be fought for years, I can tell that some people I have been updating on my mom’s condition just don’t understand how she can be in hospice care and clinging to life only 8 months or so after diagnosis.
I am so grateful that the helplessness that Mark Clements’s family felt was channeled into this supportive foundation that has already begun to make a big difference, I know it has been a refuge for me.
PattyJuly 29, 2008 at 12:48 pm #21129
I forwarded all of my mom’s records and charts to the Univ Of Virginia at their request. As it turns out here’s what the doctors reply was:
I have reviewed the chart of your mother.
Unfortunately she has diffuse disease in the liver and comorbidities (pulmonary embolism) making Photodynamic therapy unsafe. I wouldn’t recommend this therapy in her case.
Should you have any further questions, please do not hesitate to contact me.
All the best
Michel Kahaleh, M.D.
Not sure what diffuse means, but I told him in the original communication that she had a blood clot that has been treated for 3 weeks. This has really burst my bubble. Trying not to give up here. Guess I will check with Duke University next.July 28, 2008 at 3:45 am #21128saraMember
You may want to try one of the centers in your mom’s area. I believe Wake Forest in Winston-Salem is the closest location to your mom, but Duke seems to have the most cholangio research coming from their hospital. You can find a complete listing of major cancer centers under the link, “Newly Diagnosed.” Here are the three in NC:
UNC Lineberger Comprehensive Cancer Center
University of North Carolina at Chapel Hill
H. Shelton Earp, M.D.
Lineberger Professor of Cancer Research & Director 102 Mason Farm Rd., CB 7295
Chapel Hill, North Carolina 27599-7295
Tel: (919) 966-3036
Fax: (919) 966-3015
Duke Comprehensive Cancer Center
Duke University Medical Center
H. Kim Lyerly, M.D.
Director Box 2714
Durham, North Carolina 27710
Tel: (919) 684-5613
Fax: (919) 684-5653
Wake Forest Comprehensive Cancer Center
Wake Forest University
Frank M. Torti, M.D.
Director Medical Center Boulevard
Winston-Salem, North Carolina 27157-1082
Tel: (336) 716-7971
Fax: (336) 716-0293
I encourage getting that second/third opinion. Like the others have indicated, you may also be able to forward the tumor blocks to hospitals like Mayo, MD Anderson, Sloan Kettering, etc. to get some preliminary information before sending your mom there.
-sJuly 27, 2008 at 10:36 pm #21127ireneaMember
I just want to echo that advice about taking Time Outs. It may not solve anything, but taking some time to relax/have fun/ and tune out this horrid disease — even if its just a few minutes or hours — is absolutely essential.
In the course of making all the decisions, appointments, doing research, panicking, etc — it is hard to make your self take time like this. But do it.
IreneJuly 27, 2008 at 10:25 pm #21126salsarcatMember
Hello Wests, so sorry your mom has gotten this news….and I see from reading your follow up posts that you are looking a little further into comparing doctors’ opinions. Although the seeking out can be exhausting, with no guarantees, I’d avise looking for a second opinion on the surgery. My husband was given almost exactly the same words…and told no surgery possible, but we did some further consultation in Seattle after I made calls to MD Anderson and Memorial Sloan Kettering…and those were way far from us. But as it turned out whoever was helping us at one of those med centers said try to get in at Seattle Cancer Care Alliance, because actually it is the same kind of comprehensive center. It turned out that the oncologist my husband saw had just moved up to Seattle from MD Anderson in Texas. He took a lot of time with my husand, had more tests done and advised trying one type of chemo…which didn’t make any changes, but then as it turned out a surgeon in our hometown after reviewing his records was willing to give the operation a try. Since every case is different, who knows what could happen with your loved one, but one thing I am 100% sure of is that if my husband hadn’t gotten further opinions, had just taken the first diaganosis, cancer of unknown primary, and had gone from me by now, the thing I would be asking over and over is “what if we’d at least gotten more opinions?” Add to that, each physician has a unique base and may notice something different in the results. If you get a few viewpoints, and they agree on most but with some variations then you feel like you have choices. It’s worth asking for other reviews of the case, and distant places can do some of the reviews of the scans and tests from a distance…you don’t have to go there right away. Keep asking until you are satisfied you have all the info you need to find help for your mom, and also take rest breaks in between. What I remember is the constant questions, that I had or doctors had, and the scheduling and emailing, at one point I thought I would literally come unglued, unhinged….etc. Every moment of my day was about what would the next dr. say. My husband was so stunned he could hardly function. Eventually we started taking day trips/ time-outs, even if just in town or on the back porch. Well I’ve gone on long enough. I sure feel for you and your mom and wish you the best and think you are doing a good job of following up on your questions.July 27, 2008 at 9:32 pm #21125
Joyce, my mom lives in Gastonia, NC (just outside of Charlotte). That sounds like another possible option and can’t hurt to check it out. I’m a little clueless and figuring why they can normally not operate even if it’s spread (a little on bile duct, some on liver, etc). Seems they could try removing some from both areas, but I’m no doctor. Thanks for the info!
MarkJuly 27, 2008 at 6:02 pm #21124jcleggMember
Where are you? I am the University of Pittsburgh Medical Center, in a GI recovery room – my husband had a liver resection last week – was refused surgery at the Mayo Clinic – Dr. Clark Gamlin here at UPMC did it. If you e-mail him – from the UPMC web site – liver cancer – he will probably have you send all cd’s, records, etc. and review them to see if it is worthwhile for her to make the trip. That way – she only has to come if they (UPMC) are going to do something. I wrote an e-mail explaining Butch’s condition, sent everything & he reviewed it & told us to come for an appointment. I am sure there are many other places – depending on where you are – that would review records before a visit.
Good luck and God Bless,
JoyceJuly 27, 2008 at 4:06 pm #21123
Thanks you all! Tiapatty, I really appreciate your article. It sounds somewhat promising, and my mom may be a candidate. I e-mailed the doctor who is over that research, and he has asked me to forward all of my moms records, he thinks she may be a candidate. I will try to keep you all posted. Again, thanks for the kind words of you all and your support!
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