June 22, 2010 at 11:36 am #38287marylloydParticipant
All of us understand what you and Nancy are going through as caregivers and patients. I agree with Kris regarding you asking questions. I was actually upset when my husband asked and when the Drs. told him the “statistics”. He had not questioned or read about this disease at all and when they told him 6-months to a year it really shook him up. As you can see by my post yesterday under Good News, they were wrong and that’s what I told him. I told him they were wrong and there was no way he was going anywhere, any time soon! I actually complained to the Dr. about being so negative because everyone needs hope and I think he changed his attitude a little. The only thing my husband ever said was that he needed hope. Nancy needs hope so the best thing you can do is to support her, be positive, share the stories of success on here, get involved in her care as far as her diet etc., if she is agreeable. Just making nutritous juices, giving my husband supplements, cooking healthy meals, etc. made me feel like I was able to do SOMETHING, during a time when I felt totally helpless. MY son laughs that I would have funneled that carrot juice into my husband if he hadn’t been able to drink it , I wanted him to be well so much. So just offer to do what you can for her but don’t worry about time. Just take things day by day and enjoy each other. My husband and I will celebrate our 30th wedding anniversary this August, something I never thought would happen. We are closer than ever since cancer entered our lives and I know there are other couples on here that feel the same. It just makes every day and every hour that much more precious! Take care, MaryJune 22, 2010 at 6:46 am #38290marionsModerator
Steve….I am glad to hear that you were able to meet with Dr. Lenz and I look forward to your report preceding the visit with the surgeon. You also bring up an interesting point regarding Nancy’s seemingly unwilling curiosity about her disease. I suppose this will lead to a major discussion on this board certainly, I hope that it will.
Although, highly educated and respected in his occupation when it came to research of this cancer, my husband also choose to put little energy into finding answers. He left that up to me.
I came to understand that there is no script to guide us when a serious diagnosis enters our life. And, although we believe to know our spouses, certain reactions leave us puzzled. Nancy may need some time to absorb the information and she simply may not want to hear a prognosis. It is quite possible that you may be reading too much into her silence regarding Dr. LenzJune 22, 2010 at 6:21 am #38289devoncatParticipant
I am one of those people who dont want to know, have never asked and will never ask. And to be truthful it would p!ss me off royally if Hans asked how long I would live. NOBODY is a statistic. As an RN, your wife knows that doctors can only predict what might or will likely happen, but not what WILL DEFINATELY happen.
Not to be mean or start some debate or hurt anybody’s feelings, but as a patient sometimes I get so frustrated and annoyed by how some caregivers forget it is the patient who has cc. The patient should decide how they want to procede with treatment (if at all). The patient should set the tone of the journey. Its the patient who gets poked, prodded, hooked up to machines, tested, scanned, and in general treated with pity. It is tiring. And if you think your wife doesnt know the score, think again. CC is rare, but not THAT rare. It also has a reputation in the medical field. My landlord an ear, nose and throat doctor blanched when we told him I had cc. Even my husbands friend who is in 2 yr medical school knew my diagnosis was no good. We nonmedical people might not have heard of cholangiocarcinoma, but the medical field has. Your wife might be in denial, but I doubt she is clueless as to what happens.
Nancy needs you so keep going with her to those meetings. I could not have come this far without my husband. Having an extra set of ears is important and Nancy needs to know she can count on you. Let Nancy lead the way. Now you know she doesnt want to know the answer to THAT question, dont ask again. It is that simple. I can tell you are frustrated over this. Let me suggest seeing a psychologist. Hans and I have one that we meet with regularly…sometimes together, sometimes individually. It really helps and I can tell when we need to make another appointment. It gives both of us perspective and strength to face what we must.
I hope I havent come across as too harsh. I was only speaking as a patient who, like your wife, has chosen not to know what the doctors think. Sometimes I feel that when people are given a number, they count down and not live life. For example if they are given 6 months, they give up the fight at 5 months and then just wait. The psychological battle is as important as the physical one and for me waging that war means not knowing. I hope you understand.
Wishing you and Nancy great news about surgery.
KrisJune 22, 2010 at 3:48 am #38288
We met with Dr. Lenz at USC on Thursday 6-10-10. Dr. Lenz is not convinced that Nancy’s tumor is non recectable. He is not convinced the masses in her lungs are cancerous so he encourgaed us to consult with a surgeon, Dr. Yuri Genyk at USC. He said if Dr. Genyk says it is non rescectable then it is non recectable. We are currently trying to get an appointment with Dr. Genyk. As Dr. Lenz said, “surgery is the difference between life and death”. Nancy is getting her 4th round of Chemo (Gemsar & Oxiplatin) on Wednesday 6-23 & 6-24. After that they will do a Pet Scan to see if the Chemo is working.
Dr. Lenz agreed with Dr. Mc Clay’s treatment of Gemsar & Oxiplatin. Dr. Lenz said that Avastin does not work with this type of Cancer, Dr. Mc Clay had mentioned Avastin as an alternate if this treatment didn’t work. As our consultation was coming to an end, I asked Dr. Lenz what was the prognosis for Nancy and he said he would not answer that question unless Nancy asked. I was a little ticked off by that statement but I knew that is what we had been waiting to hear from a Doctor that specialises in CC, but the silence was deafening. Nancy did not ask the question. My sister-in-law and mother-in-law had driven Nancy to USC from our house in San Marcos and I met them there, so I drove home alone. The drive was three hours and the whole drive all I could think was why didn’t she ask the question. It slowly dawned on me that some people don’t want to know. I thought that we were on the same page but I was wrong. Nancy is a RN so she is familiar with Cancer but this is rare and I could not get her to look at the information I had found on this site, Mayo Clinic, MD Anderson, Stanford, etc. I could not get her to fill out an Advanced Directive and they ask you each time you go to the hospital (4 times). I am confused and don’t know what to do. Should I stay away from the consultations with the Doctors so I don’t ask questions Nancy does not want hear?
Steve & NancyMay 20, 2010 at 1:01 pm #38286lainyParticipant
Dear Steve, just a note to tell you that Dr. Lentz is very highly regarded in this field! Very good move, indeed. You can look him up on older posts using our search engine at the top of the page. The CA19 cancer marker is just that. Part of the diagnostics but seems to be so different with everyone. When Teddy started this last round his marker was a normal 17. Then climbed and climbed. He has a 4 1/2 CM tumor that we are working on now but everything else is greatl. He just had a battery of tests with a Liver MRI coming up Monday. We see the ONC next Friday and he said perhaps the surgeon can even remove the tumor with keyhole surgery.
I know it sounds like we are being evasive but this CC is so unpredictable and everyone is so different that sometimes its hard even for the ONC to tell you where Nancy is with this. I have a feeling you will be very satisfied with DR. Lentz and will know more at that time. Hang in, stay strong and know that you are not alone.May 20, 2010 at 10:46 am #38285ashleyParticipant
Hi Steve and Nancy,
Sorry to hear about your experience over the last weeks. I’m glad you are getting a second option because as you have probably recently learned this cancer is somewhat rare and you need to make sure you have an experienced doctor.
As for the CA 19-9 it is a simple blood test. Elevation over 100 is normally considered suspicious. However with that being said, I had read stories of family members with numbers under 100 who are still very sick. My mother’s was almost 400 when she was first diagnosed with a 3CM non-metasticizing tumor. ( and btw – feel free to be pushy and ask for this info). Others have had their markers in the tens of thousands range with no initial sign of a visible tumor ( the cancer was in cellular form). Generally the marker does seem to have a direct correlation to the progression. Right now there are several board members currently having chemo who have had their marker numbers reduced significantly due to their treatment. However, this one marker is only part of a collection of tools used for diagnosis, etc.
The diagnosis is usually centered around several indictors, such as the CA 19-9, visible site of a tumor on a scan, FISH staining of the ERCP brushings, history of PSC liver disease, etc).
Unfortunately the downward progression ( from what I read on caringbridge and various carepages,etc) seems to take the form of high billirubin ( failing liver) levels that do not allow the patient to continue with chemo. You can find this type of info under a separate section of this board dedicated to these specific types of questions.
Glad your are headed for the second opinion. Please keep us posted as we are hoping the best for Nancy.
Ashley from CTMay 20, 2010 at 4:40 am #38284
Nancy and I thank you all for your support. By the way, my name is Steve. We do have some questions. I have read other posts that refer to CA-19 Tumor Markers. What is normal and what is extreme? Do these markers tell you how the cancer is progressing? We have not been informed what Nancy’s CA-19 is.
How does this disease progress? What are the signs that we need to be aware of that Nancy is in danger of losing this battle. When we asked Dr. Mc Clay what the prognosis is, he would only say that he trys to achieve a cure with every patient. We appreciate his optimism, but we also would like to know how severe her cancer is and what we can expect. Nancy has had difficulty eating and keeping foods and liquids down since this started.
We have a second opinion scheduled with Dr. Lentz at USC next month. Is there any other doctors in the San Diego area that are experinced in Chalangiocarcinoma?
Steve & Nancy St.GermainMay 20, 2010 at 2:08 am #38283mlepp0416Participant
Welcome to the site that no one really wants to join, myself included. With that being said, this is the best site on the internet that I have found to date where one can get good, honest information and real life situations.
Since you will become Nancy’s main caretaker, don’t forget to take some time to take care of your self as well. You will need some time each week just for you. I have been my husband Tom’s main caretaker since he was diagnose in early 2008. There are going to be times when the road is going to be rough, there are going to be many twists and turns. There will be tears along with moments of joy.
Tom’s Cholangiocarcinoma was totally unexpected, and I to, like you and Nancy had never heard of this type of cancer before he was diagnosed. Since he was on a Cholesterol lowering drug, the Veterans (VA) doctors did blood tests every three months to watch his liver function. In January of 2008 they were normal. In March of 2008 the liver enzymes were 10 times elevated. After the doctors at the VA tried various things such as stopping the Simvastatin, changing his diet, etc. we went to civilian doctors and they did an ERCP and found the tumor and diagnosed him in May of 2008 with Cholangiocarcinoma. He had a resection in June 2008 and things were going very well. In Nov ’09 he (like Nancy) started turning yellow. Back to the doctor where it was discovered that he had an inoperable tumor in the remaining right biliary tree. He was given 6 months and we were told that radiation / chemo would not help.
Needless to say, we did get radiation (28 rounds) and chemo (Xeloda) and now he is considered to be in remission. Throughout his journey, we have never given up hope and our saying is that no one has an expiration date stamped on their butt.
My husband was 61 when he was diagnosed and is now 63. We do not know how much time he has left but each day we make new memories and we are still fighting!
You and Nancy need to continue to make memories for yourselves and for your children. You have a lot of people pulling for the both of you.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)May 19, 2010 at 6:33 pm #38282kathybMember
I’m sorry you have to take this journey. Cancer sucks! That being said, I was diagnosed with Stage IV iunresectable Cholanigiocarcinoma last July and had two bacterial blood infections during the following two months. I’m still here.
Your wife has had such a hard time recently. I was ready to give up when I went to the hospital for my first blood infection and then again during my first treatments, BUT I actually feel great right now. So don’t loose hope.
Ask your doctor how many patients he see’s with bile duct cancer. I first went to the large university hospital in our state. When they told me they only see 2-3 patients a year with bile duct cancer, we requested a referral to Mayo Clinic in Rochester as they are quite familiar with this type of cancer.
Hope this is a better day.
God bless you,
KathyMay 19, 2010 at 2:18 pm #38281nkParticipant
Hi St Germain,
Welcome, I went through similar situation with my Saj. We had just come back from Vancouver-Alaska,unfortunately I lost him in 3 months, after being together for 30 years.Please do everything you can for Nancy.I pray for the BEST for her & you.
nkMay 19, 2010 at 2:18 pm #38280lainyParticipant
Hello Nancy’s husband and welcome to our family! We are so very sorry to hear what happened to Nancy in Las Vegas. That is exactly how my husbands started but we were 2500 miles from home. Welcome to our world but we know you would rather be anywhere else. PLEASE do not give up hope as we have had others on our site diagnosed with Stage IV and they are still busy posting notes to us. Thank goodness they got the stent in and that alone should make a big difference. Blood infections seem to go with the territory of stents. Unless one is in the Medical field they have never heard of CC. Learn as much as you can by reading CC sites and our past posts. To be informed will make you the best advocate you can be for Nancy. Honestly, once the shock has worn off and a game plan is in place you will then charge forward and do what has to be done. Please keep us posted and feel free to visit often to ask, vent or advise……we are a very caring family.May 19, 2010 at 8:58 am #38279gavinModerator
Hi St Germain,
Welcome to the site but I am sorry that you and Nancy had to find us but glad that you have joined us here. And I am sorry to hear of your wifes diagnosis. Like you, I had never heard of cholangiocarcinoma until my dad was diagnosed back in 2008. His cc was also deemed inoperable from diagnosis and he also had a metal stent inserted. Like Nancy, the first symptom we saw was his jaundice, and yes CC also took over his and our lives. He never had chemo or radiation as treatment, he had PDT.
I hope that you will keep coming back here and asking lots of questions, as you will find a ton of suppport from all of us here and we have been in the position that you are in now. We know what you are going through and how hard all of this can be to deal with.
Like you, we all wish that we had never heard of CC, but we have so that is why we are here and help one another.
My best wishes to you and Nancy,
GavinMay 19, 2010 at 7:03 am #38278marionsModerator
Hello St. Germain and welcome to the club no one wants to belong to but, is glad to have found. Similar to your experience, I can’t think of many on this site who have ever come in contact with this cancer before the diagnoses was made. And. You are so right, it is life changing. The good news is that Nancy has been able to fight off the ugly blood infection and that the metal stent is allowing for plenty of drainage. Metastases to the lungs are quite common in fact; several of our members are able to keep the lungs stable. Our search function will lead to to many discussions about this issue. How is Nancy feeling now? Will she continue with her Chemotherapy of Gemzar/Cisplatin? This combination has become the standard of treatment and has shown to be quite promising for those people responding favorably. Also, I do not recall anyone mentioning Dr. MClay however; someone else may have had some experience with him and might be able to share some information with you. Again, I am glad that you have found us. Please, continue to share with us and put out your questions because, you are not alone with this disease. We are here to help each other.
I am sending all my best wishes to you and Nancy.
MarionMay 19, 2010 at 5:09 am #3561
My wife, Nancy and I took a trip to Las Vegas to celebrate our 27th aniversary on 3-26-10. We were having a great time, however on Sunday I noticed her eyes were yellow and her skin was jaundiced. She said she felt okay, but by Monday she was really yellow. We drove from Las Vegas straight to the emergency room at Scripps Encinitas (San Diego area). The emergency room doctors were hoping it was stones. On Tuesday they did a CT scan and Ultra Sound. The results were not promising, they suspected Cancer. On Wednesday they tried unsuccessfully to place a stent to relive the bile. They also took a biopsy of the tumor. On Thursday, 4-1-10 we were informed that Nancy had unresectable Cholanigiocarcinoma Stage 4 metastisized to her lungs and lymph nodes. On Friday they went back in and successfuly placed a metal stent which allowed her bile to drain properly. Her bellirubin had reached 26 by this point. During our trip to Las Vegas we had discussed where we wanted to retire, when our kids would get married, etc. I still can’t believe how fast our lives have changed in less than a week. Nancy and I are both 49. She was in the hospital for 10 days. She was out for 4 days before having to go back to the hospital with a blood infection. That stay lasted 9 days. She has had 1 round of Chemo (Gemsar & Oxiplatin) followed by another stay in the hospital for an infection. Her white cell blood count reached 45,000. That stay lasted 8 days. Until April 1st, I had never heard of Cholangiocarcinoma, I wish I never had. Nancy’s Oncologist is Dr. Mc Clay with Pacific Oncology. Has anyone used him for this type of cancer?
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