Topic: Mom just diagnosed

Hello.  My mother started feeling a little nauseated about two weeks ago.  Then some pain on her right side.  After a couple of days, my dad took her to the ER.  They found a blood clot on her lung, then spots on her liver.  After finding out the colon was free of cancer, they did and ERCP and found that she had bile duct cancer.  Since it was already in her liver, they said that they cannot do surgery or radiation and said that there is no proof that chemo would extend her life.  Her appetite is gone and she only eats a bite or two of food, still feels nauseated and pain on her right side.  She also has jaundice, which when they did the ERCP, they put a stint in that is supposed to help with the jaundice.  The oncologist said there is nothing else they can do for her and will be sending her home from the hospital today.  With the symtoms that she already has, we wonder if it is even too late for a second opinion and the travel involved.  She has to have pain medication fairly regularly already.  The doctor said she has weeks, maybe a few months.  We would like to get that second opinion, but not sure if she would be up to it.  She's already tired of hospital stays.   

So, if anyone has experienced a similar diagnosis, I sure would appreciate any input as to what we can expect and what our options may be, if any.

Thanks,  Mark

2 (edited by marions Fri, 25 Jul 2008 10:15:15)

Re: Mom just diagnosed

Mark,
So sorry to hear about your Mom.  Definitely, search out more opinions in re: to the further treatments as physicians vary greatly in their approaches of combating this cancer.  Gather everything pertaining to her diagnoses, scans, physician

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

Re: Mom just diagnosed

Mark,

I know what you mean about the travel, my Mom was also too weak to go far, what is your location?

Maybe she can do photodynamic therapy (PDT), which has minimal side effects compared to chemo/radiation and has shown promise and is accepted treatment in Europe, there is an article in Medical Updates, here is the outside link:

http://www.eurekalert.org/pub_releases/ … 041508.php

Patty

Re: Mom just diagnosed

Mark,

Sorry to hear about your mom but don't give up and definitely get a second opinion. Even if your mom can't travel, you may be able to send her information to another doctor to get their input.

My mom was diagnosed last month with similar symptoms - pain on her right side, no appetite and only eating a bite or two of food. They did the same thing - checked her colon etc, found tumors on her liver and eventually decided on cc.  The only difference is my mom had no jaundice.

We got her some Boost which she would drink even though she didn't want to, (sometimes two a day) to help with the calories she needed. She just started chemo - this was her third week. She is on Tarceva and Gemitabine and actually has eaten more this week and feels better this week than she has since she was diagnosed. However, we are still getting a second opinion next week by sending her records to another place. We just feel that it is important to do so.

I was where you are just about a month ago. Don't give up hope.

Best Wishes,
Dawn

Re: Mom just diagnosed

Mark,
So sorry your mother has this terrible disease, but welcome.

Scott took marinol to stimulate his appetite. He still lost 40 pounds throughout the year, but he couldn't eat anything without it. I think it helped mellow him out a bit (I'm a bit tempted to snarf the leftovers, but......... )

Anyway, I hope things are the very best they can be under the circumstances.

God Bless,
Brenda

6 (edited by Wests Sun, 27 Jul 2008 09:06:58)

Re: Mom just diagnosed

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!
Mark

Re: Mom just diagnosed

Wests,
   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,

Joyce

Re: Mom just diagnosed

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!
Mark

Re: Mom just diagnosed

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.

Re: Mom just diagnosed

Hi --

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.

Irene

Re: Mom just diagnosed

Mark,

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.

Big hugs.

-s

30-something caregiver

Re: Mom just diagnosed

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.

13 (edited by tiapatty Tue, 29 Jul 2008 09:38:27)

Re: Mom just diagnosed

Mark,

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.

Patty

Re: Mom just diagnosed

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. 
Mark

Re: Mom just diagnosed

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.

Carol

Re: Mom just diagnosed

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

Sophie

Re: Mom just diagnosed

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.

Carol

Re: Mom just diagnosed

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.
Mark

Re: Mom just diagnosed

Mark,
I dont  know what to say or suggest. It must feel terrible to witness your mothers pain.  Please stay strong.

KRis

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Mom just diagnosed

Mark,
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.

Re: Mom just diagnosed

My mom's speech has been slurred, she's been a little confused and agitated.  The hospice nurse says she's got a build up of ammonia from Hepatic Encephalopathy which damages the brain.
1-Is this common for this kind of cancer?
2-If so, what else can we expect?
3-Is this a sign of things coming to and end?
If anyone has experience with this, I would like to hear from you about it. 
Thanks
Mark

Re: Mom just diagnosed

Mark,

Take a look at these prior posts, the second one suggests lactulose as treatment for the hepatic encephalopathy:

http://www.cholangiocarcinoma.org/punbb … hp?id=1661

http://www.cholangiocarcinoma.org/punbb … php?id=806

http://www.cholangiocarcinoma.org/punbb … php?id=635

Patty

Re: Mom just diagnosed

Hi Mark

What your Mom is going through is the same as what mine suffered.  My Mum was diagnosed after the jaundice appeared and tests were carried out, and although she was able to have a stent which cured the jaundice she was never able to properly eat again.   Sadly she lost her battle a few weeks ago.  We too were at a loss at what to do and where to turn, all I can say is take heart in knowing that many of us understand what you are going through.

Re: Mom just diagnosed

Just wanted to let you all know that my mom left us during the early morning hours of Wed. Aug. 27th.  She was in a great deal of pain for about the last week or so, slipped into a coma early Sunday morning, then left us a few days later.  She was with me, my father and my other brother and no longer has to deal with this earthly disease.  I appreciate everyone's help and input on this awful cancer.

Re: Mom just diagnosed

I'm so sorry for your loss - all my sympathy to you and your family. Please feel free to keep coming here to chat if you need to.
Joyce M