August 7, 2010 at 4:15 am #38305
The last month has been very hectic. We found out that the Gemsar & Oxiplatin did not work. Nancy’s scan showed the cancer has spread to her stomach lining. At the same time, Dr. Genyk was chercking into the possibility of surgery, but after additional CT scans, he he told us last week that was not an option.
Nancy started her first round of Chemo using Cisplatin, Xeloda and one other drug ( I Forgot the name, starts with an E) last week. She takes Cisplatin & (E) infusion on day 1 and Xeloda 14 days orally. Nancy has not been able to keep food down and now liquids. Since Nancy got out of the hospital in June she has had to go to Dr. McClays office a couple of times per week for IV liquids to keep hydrated. In mid July Dr. McClay ordered IV liquids to be given at home daily. On Thursday 8-5-10 they changed the liquids to TPN due to Nancy not being able to eat or drink and she could not get out of bed. My daughter Stephanie and I were given 2 lessons on administering TPN. In a few weeks we may apply to be LVN’s.
Nancy vomits 8 to 10 times a day. We have tried Emend, Compazine, Zofran, Sancuso Patch, Marinol and a few others but nothing works. We are discussing if Nancy should continue with Chemo or not. I don’t know if Nancy can survive the next 8 weeks of Chemo.
Steve & Nancy St.Germain
(49) (49)June 28, 2010 at 4:30 am #38304lisaParticipant
Steve & Nancy,
I’m 47 and was diagnosed nearly 3 years ago with a Klatskin tumor. In March 08 I had unsucessfull resection attempt. I’ve been in and out of the hosptial a few times with blood infections. I’ve had about 5 different forms of chemo. I’m at stage 4 with mets to the lungs.
Ok, that’s the bad news.
The good news is that I’m still here. My youngest daughter just graduated from high school. All three of my kids will be in college this fall. I am feeling great – that is as good as I possibly can with cancer. Don’t give up! I feel that I have years left, God willing. I’m not giving up and neither should you. The good thing is that Nancy is still relatively young. That helps when fighting this cancer. We like to say that no one has an expiration date stamped on their butt. So keep the faith! You have a lot to live for.June 28, 2010 at 1:26 am #38303ashleyParticipant
Steve and Nancy,
I think the likelihood of having a whipple is greater, but the surgery is one of the toughest for a patiernt ( from reading posts on this site). The reverse with the Klatskin tumor – based on where it is located, surgery cannot always be a sure bet since the tumor is near the bifurcation of the bile ducts and can grow into vessels and duct walls making it harder ( and sometimes impossible) to resect. I urge you to get many opinions about resection.. what many docs may not touch one doc may see as a doable surgery.
Good luck on your upcoming appointment.
AshleyJune 26, 2010 at 11:09 am #38302marylloydParticipant
My husband had a klatskin tumor. I think it is more difficult to remove because of it’s location and involvement with blood vessels. My husband had an attempted resection but they felt they would have to take out too much of the bile duct to have clear margins. It just really depends on location of the tumor. His was very high up in the bifurcation area. MaryJune 26, 2010 at 12:37 am #38301
We are still waiting to see the Surgeon, Dr. Genyk at USC. I have a question about the surgery. From the posts I’ve read on this site, it sounds like surgery for a Klatskin’s Tumor is more difficult than a Whipple Procedure. Is this true and if so why? Nancy has a Klatskin’s Tumor.
Steve & NancyJune 24, 2010 at 6:26 pm #38300cherbourgParticipant
So sorry you’ve had to find us. I’d like to weigh in on the issue of your wife not asking for a prognosis.
I am a Cytologist and was in the unenviable position of diagnosing my Mom with Stage IV CC with mets to the lungs. Obviously I knew immediately what we were facing and how rare this cancer was.
I was upset and somewhat annoyed that she would not ask the prognosis and a few other questions when meeting with the oncologist. She was on her third visit before she told the oncologist to “hop up on the exam table” and then surprised me with a list of questions she produced from her purse.
As her illness progressed, I was cleaning up her computer one day and discovered after her inital CT scans when CC was first suggested, that she had bookmarked pages about CC. I also found note papers in her desk that she had scribbled on while learning to spell cholangiocarcinoma.
I finally asked her about this. I asked if she already knew the information and the prognosis why she didn’t confirm with the doctor until after the 3 visit? Her answer was she didn’t want to make the diagnosis “real” for my Dad, sister and me. She said she felt as if she could protect us from reality for just a while longer until we had grown comfortable “dancing” with cancer. Mothers!!!
You mention your wife is a nurse. Speaking as one in the medical field I guarantee your wife has someone (probably a Pathologist or Surgeon) she trusts and has run this by. I can promise you she more than likely knows everything she doesn’t want to know about CC.
My Mom was very computer savvy at age 76 and was still working full time by choice at a demanding job. I’m sure your wife has checked all of this out on a computer somewhere.
Give her some time. She may be protecting you in her own way. Cancer is insidious in that you are no longer in control of anything. She may be exerting control over what she can. Nurses are realists and intelligent. She will find her own way in dealing with this. Be supportive and by all means be there. Kris’s idea of a psychologist or therapist is an excellent one.
We are all here for YOU. You can always vent, unload, and anything else you want to do here. We have VERY broad shoulders and someone is always on the board. We are all on this journey together just at different “stops” on the way.
Hugs to you and Nancy.
PamJune 24, 2010 at 11:06 am #38299devoncatParticipant
My first doctors never used the term cancer with me either. I think it is their way of making it less scary. I dont think it actually works, but bless them for trying.
Marion is right, knowledge is power. The more you know, the more frightening it becomes, but then you see the miracles on the board and it gives you hope. There are so many different treatment options besides chemo, radiation, and surgery. From my perspective, it looks like the people who branch out more get better results. Not all treatments can be given to all patients. It depends on size and placement of the tumors but you can ask your doctor about RFA, cyberknife, Proton Beam radiation, Photodynamic light therapy and I am sure there are others but my chemo brain is drawing a blank.
I hope I didnt come across as too harsh. If so, I am very sorry and I do apologise. I just feel that doctors dont know everything and they can only guess. We have a wonderful member named Sophie who has been having severe problems with ascites and had to have them drained weekly. She has been doing this for a year. If you would have asked a doctor, they would not been as positive. Our Jeff lived 10 yrs after diagnosis and Suzanne’s doctors bent all kind of rules and did all sorts of procedures and she is doing fine. Doctors are people that know about cancer, they dont know about your wife.
You are doing your best in terrible circumstances and in that you should take comfort. Your fighting spirit will help Nancy find and keep hers.
KrisJune 24, 2010 at 5:44 am #38298marionsModerator
Steve…..This cancer affects everyone including, a loving, caring, and concerned spouse like you, Steve. I remember that when my family was confronted with this disease, the familiar, personal traits of each member stayed quite consistent however, many new and at times, quite unexpected reactions occurred. In fact, some close relatives choose to stay in denial re: the severity of this disease whereas others became overly negative. Our Kris has thought us to stay positive and realistic; coupled with a good sense of optimism. And, many others have shared their wisdom and experience in order to help those needing clarification and support. We have witnessed, on this board, responses bordering on miracles. We have also seen the opposite come true. Knowing that might help you understand that although, a prognosis might appear to be quite grim; we really do not know the individual response of each patient. You are doing everything right Steve. You are researching this cancer and therefore; you are empowering yourself with knowledge. And, you are allowing Nancy to make the decisions she feels most comfortable with.
I also would like to attach the Caregivers Bill of Right with the hope that it might help you find some answers and address some of your concerns. Certainly, it worked wonders for me.
I believe, many of us have found comfort with it.
I have the right:
To take care of myself. This is not an act of selfishness. It will enable me to take better care of my loved one.
I have the right:
To seek help from others even though my loved one may object. I recognize the limits of my own endurance and strength.
I have the right:
To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things for myself.
I have the right:
To get angry, be depressed and express other difficult emotions occasionally.
I have the right:
To reject any attempt by my loved one (either conscious or unconscious) to manipulate me through guilt, anger or depression.
I have the right:
To receive consideration, affection, forgiveness and acceptance from my loved one for as long as I offer these qualities in return.
I have the right:
To take pride in what I am accomplishing and to applaud the courage it sometimes takes to meet the needs of my loved one.
I have the right:
To protect my individuality and my right to make a life for myself that will sustain me when my loved one no longer needs my full-time help.
I have the right:
To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made toward aiding and supporting caregivers.
Please, stay in touch. We are in this together.
MarionJune 24, 2010 at 5:11 am #38297lainyParticipant
Steve, it is hard to comment here as we had such a different experience. The doctors told Teddy after his Whipple that he may not survive 1 year and that chemo would never help him. Well he got 5 years so far and now we were told by 3 doctors that there is no more they can do for him and told us as much. When he asked how long 2 of them said about a year. It is very hard to tell with CC. The other difference is, we wanted to know. He doesn’t get on the computer but I tell him what is going on, I do the research and I do most of the questions at the doctor. He trusts my decisions and like I have said before, I practice gut medicine and so far it has worked. Everyone has to work it through for themselves. Each one is different. The best you can do is what you are already doing, by being a loving husband and very supportive. Not sure if Nancy would let you do this but, I get copies of the tests and LABs take them home and the words I don’t understand I look up on the WEB. It has helped me a lot.
Good luck to you both and hang in there and give Nancy your best positive attitude.June 24, 2010 at 4:31 am #38296
When Nancy was diagnosed with cancer, the word cancer never came up when we talked with her doctors. We heard words like malignant, metastisize, stage 4, leasions, tumors, cholangiocarcinoma, words Nancy was familiar with, but not me. The doctors never even said it was life threatening. I had to go online to find out those words meanings and the poor outcomes of patients with CC stage 4. I searched Mayo, Sloan & Kettering, DJ Anderson, Stanford, UCLA, USC, UCSD, UCSF, American Cancer Society and my Oncoligist’s own web site which tell you to get your prognosis from your doctor. I know some people do not want to know their prognosis, but I do and I thought Nancy did to. We discussed it prior to going to see Dr. Lenz, but when it came time to ask, she did’t. How can you make treatment decisions if you are not fully informed? But if Nancy doesn’t want to know, we will not ask. The ultimate decisions for her treatment will be her’s. The ironic part is prior to this, it was Nancy who grilled me about what the doctor said, what medicines were prescribed, etc. Now I’m in her shoes and their tough to fill.
I’d also like to thank you all for your input, I’ve learned alot on this website.
Steve & NancyJune 23, 2010 at 3:01 pm #3829532coupeParticipant
My wife Donna would usually ask me a bunch of questions when ever I would return from a meeting with my Onc. You know… “what did he say about…” and so forth. I typically had few answers. So… frustrated, she decided to go along and ask the questions. After one such doctor visit, she was very quiet on the trip home. She didn’t like the answers. I think she finally understood that I hadn’t asked the questions because I frankly didn’t want the answers. Some times, reality SUCKS! One of my pet sayings is: “You people talk about denial like it’s a BAD thing”. For some people, all the “knowing” doesn’t change the outcome; it changes the journey. Please allow Nancy to direct her journey and to ask the questions when she is prepared to hear the answers.
You and Nancy will be in my prayers. God Bless!
bobJune 22, 2010 at 7:56 pm #38294kayMember
I am so sorry about the news you have received. Just wanted to give you the surgeons website that operated on my father almost three years ago. He is pretty aggressive in surgery and we were told there was no way any surgeon would have attempted the surgery that he did. He was successful and cleared him of the cancer at that time. Maybe you can send him the scans if USC doesnt think they will operate. He is located in Scottsdale, AZ which is fairly close for you.
Thoughts and prayers are with you.
KayJune 22, 2010 at 6:55 pm #38293pamParticipant
My family and I are new to this site since learning our dad has cc. He is 75 and in a month and a half has already gone through an attempted resection and an infection that has had him hospitalized for a week. We are meeting with an onocolgist next week for him to begin chemo. In the beginning he was told he had six months or less and after several conversations we have decided not to worry with that number and take it day by day. He is a true fighter. He said he likes it here on earth warts and all. He touches someones life everyday and that is what matters. He can’t wait to get back into his caddy and go on down the road.June 22, 2010 at 6:20 pm #38292cinnaminParticipant
I’m so sorry Nancy and you are going through this. My 78 year old Dad was diagnosed in November last year, and has since gone through resection surgery and started chemo. We are in San Diego also, and have the most tremendous Drs at UCSD. As for how Nancy feels about asking questions, I get it. My Dad was the same way. The first time he looked up cc on the internet, he was so depressed. He refused to look again, and left all research up to me. All along I tell him what I’ve discovered, but always with a positive slant. I go to all of his appointments with him and my Mom, and always tell them ahead of time what questions need to be answered. I AM on his directive and I’m his medical proxie, so his Drs are used to me asking questions.
Dr. Hemming is truly a miracle worker at UCSD. My Dad was initially told no surgery, then Dr. Hemming stepped in and said yes! He and his main nurse Doug Elmore have always gone above and beyond. They spend as much time as you need answering questions, and are always reachable. Doug even returned a phone call within 5 minutes when he was out of town doing army reserve duty!
You can read our journey under my name. Bottom line is….NEVER give up hope. Don’t stay away from consultations, she needs you! Let Nancy be your guide. She’ll let you know when, or if she’s ready for the tough questions.
Feel free to contact me. Take care, and know that a whole bunch of people are pulling for you and Nancy
JanetJune 22, 2010 at 6:08 pm #38291gavinModerator
I hope that Nancy manages to get an app sorted out soon with Dr Genyk and I will keep my fingers crossed for a positive outcome from that meeting. I know what you and Nancy are going through right now with this and asking questions etc. I went through the same with my dad after he was given his diagnosis. He didn’t ask how long he had after his diagnosis, and he never asked at any of the later meetings we had with the specialist and the onc.
My dad discussed with me if he should ask that question, and we debated it a few times. In the end, he decided not to ask but I would have supported him if he did as it would have been his decision to do so. I went to every meeting with dad when he had to see docs, specialists or the onc, as he wanted me there to listen to what he was told and also to ask any questions that I thought should be asked, apart from the how long one. I was the one doing the research for my dad as that is what he wanted, so he said if there was anything I thought should be asked then to do it, but that was what he wanted and we discussed things before every app.
I guess there are no right or wrong answers with all of this. What is right for some will not be suitable for others. Perhaps you could speak with Nancy about going with her to future meetings etc and ask her what she would like to discuss with the doctors?
I do agree with what Kris says about how if some people are given a number then they might start from there and work down. I think that if my dad had asked for a time then he might have done that, so I was sort of glad that he didn’t ask.
My best wishes to you and Nancy,
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