Husband has cholangiocarcinoma
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Diane…..venting helps, glad you choose to do so on this site.
I have learned that gastric cancer patients , including CCA patients have a tendency to throw clots. It was discovered by Armand Trousseau, who first describes this finding in the 1860s and he later found the same sign in himself. Trousseau syndrome is an acquired blood clotting disorder that results in migratory thrombophlebitis (inflammation of a vein due to a blood clot). Although not always associated with an internal malignancy, many cases do show an underlying cancer. However; based on the thousands of reports on this site, I estimate (don’t hold me to it)
trombosis affects less than 10% of our patient, hence you never know in advance who will be affected by this syndrome.Stents are a different story in that we know that at one point they will become infected. On the average plastic stents last for 90 days, but here again some people can go longer whereas others need replacement within 6 weeks or less. In this case it’s best to take the temperature (daily) and to head to the hospital once it reads 101 F. Other signs of an impending infection can be a sudden onset of shaking minus a raised temperature. This shaking is called “rigors”. In any case, a physician must be notfied.
I so much understand your frustration, Diane, because we would love to know in advance what to expect with this cancer, but it’s so darn hard to predict as to who get’s what.
Hang in there Diane, you are handling everything in the best way possible.
Hugs
MarionDiane,
Someone needs to teach you how to vent. Here’s a question: Why is just about every doctor a coward when it comes to having a hard conversation with a patient and his or her family given that this is their chosen profession?
Or, How are you supposed to get better inside the hospital when not one person in a position of authority says “We need to let this person rest so don’t come in every 2-3 hours, turn on the lights, make a bunch of noise, carry on a conversation that could be done in the hallway, all to ask a bunch of inane questions that have been answer 5 times today.”
I’m sure there are better ones.
Joe
Hello Everyone,
I wanted to post an update. After my last post at the end of May, my husband Mike started having severe pain upon breathing in. I called the Nurse Triage at City of Hope because Mike wanted stronger painkillers, so they said they could prescribe hydrocodone but I would have to come physically to pick it up (I guess since it is a narcotic). So I did that, and after he got started it didn’t seem to help much. He then began running a fever over the weekend, so I made another call and was told to take him to our local ER. It turns out he had pulmonary embolisms (emboli?) and pneumonia, and was admitted to the hospital once again. He was there about 4 days, went home and is now on blood thinners (Lovenox, twice daily injections).
Mike finally began his chemo on June 6, and has now completed 4 treatments. He seemed to be doing fairly well with rather mild side effects, mostly fatigue. However, after Tuesday’s treatment he ended up feeling pretty bad yesterday, including some very severe abdominal pain, and was running a fever of 102.2 in the early evening.. So I called the nurse triage again to see what we should do, and they told us we needed to bring him in. They did an X-ray, drew blood, all the routine things, but didn’t discover where or if he has an infection, so now he is admitted to the hospital again. I think they suspect it may have to do with his stent or possibly the drainage tube in his gallbladder.
One frustrating observation/question : when doctors diagnose cancer, why don’t they warn you about the increased risk for things like pulmonary embolisms, so that you can be more attentive to some of the associated symptoms? Anyway, just a little vent! Thanks for reading all of my ramblings, and I am grateful for a site like this which is dedicated to such a rare cancer.Regards,
DianeDiane…you are in excellent hands with Dr. Fong and as mentioned by you, if there is any way a surgery is possible, he is sure to acknowledge and perform it.
Numerous patients benefitted from response to treatment and then went on to a resection.
I wish the same for Mike.Hugs
MarionDiane,
I am glad you found a place in which the medical team will work with you, and you feel comfortable with them. That is crucial to connect well as I have found. They listen to your needs and give suggestions and are patient. Are they going to use the standard treatment of gem/cis or is there an alternative?Thanks for sharing.
Hi again. So I took my husband to City of Hope on Tuesday, and we met with the medical oncologist. He spent quite a bit of time with us, answering all of our questions, and explaining the treatment. He was very certain surgery is not an option, because of the spread of the cancer. His nurse was also very involved with us, and we really liked this place. Everyone was very helpful. We did tell the Dr. that we wanted to meet with one of the surgical oncologists in the dept. to see if there was any possibility if Mike would be a surgical candidate. Of course, he was fine with that but felt certain that the surgeon would agree with his assessment. We requested Dr. Fong, whom a dear friend of ours knew of and personally intervened to get us seen by him. Also Dr. Fong is one of their medical team, as they have a wonderful team of doctors that they keep in consultation with for each patient.
So our Dr. immediately checked as Dr. Fong is very busy, but because our friend was with us and had contacted Dr. Fong earlier, the Dr. set us up for an appt. the very next day, Wednesday. We went back Wednesday, and we both liked Dr. Fong very much. I am confident that if there is any way to do surgery, he will find it! He did say that as of now, surgery is not an option, but Mike will start chemo on June 6 and after 2 months they will do a scan to check for tumor shrinkage. We will then go back to Dr. Fong to re-evaluate for possible surgery. He is a forward thinking Dr. and seems very proactive, maintaining on optimism that he will help my husband to have a chance for longer life with quality. We felt more optimistic when leaving that day.
Thanks so much for sharing Diane, and let us know both experiences at COH and USC.
It takes courage and determination for all of us to be here.Thank you everyone for your replies and encouragement. I actually didn’t think the post went through so I hadn’t checked back here. Anyway, my husband has an appointment scheduled with City of Hope next Tuesday. I also have had others I know speak highly of USC, so I will see how next Tuesday’s appointment goes and proceed from there.
Everything I have been reading on this horrible cancer looks so dismal, particularly if diagnosed at stage 4. I assume my husband will probably not be a candidate for surgery (curative) since he is stage 4. Obviously I am waiting to see what the doctors say first, and am hoping I am wrong.
Diane,
Our world was also turned upside down when my husband was diagnosed at age 55. We relied on advice from the wonderful members of this board, and we sought out and found a highly experienced medical center in Northern California, and more than two years post resection, my husband is still cancer-free. You are in for a rough ride, but a team of cc medical experts, such as USC, as suggested by Marion, can offer your husband the best possible treatment options for his specific condition. Hang in there, there is hope!
Debbie
I am so sorry you are going through this, and it is truly shocking how quickly life can change. My 42 year old husband developed pancreatitis after his ERCP in November and was in the hospital for a week. It was frustrating because I wanted to focus on getting rid of the cancer and instead had to focus on recovering from the ERCP. I hope that you are able to find a great oncologist and develop a treatment plan for your husband. Do not hesitate to get 2nd or 3rd opinions.
Diane….welcome to our special group. Please know that there are no restrictions placed on length of postings, hence no apologies needed. We are glad you found us. So sorry to hear of the added pain your husband had to endure. You are so right, along we go with life and within moments everything is upside down. This is how it is for most and I hope for others to share their stories with you as well.
Please try to familiarize yourself wit this cancer. The below link will help:
http://cholangiocarcinoma.org/newly-dx/Additionally, given the rarity of this disease it is of utmost importance to obtain additional opinions from specialist “very” familiar with this cancer. These specialists most often are found in major cancer centers. In your case I recommend contacting USC.
No. 1 – is there a possibility for resection (surgery) to remove the tumor? You may need to get in touch with one, two, or more specialists “very” familiar with this cancer.
No. 2 – tissue sample must be analyzed for molecular alterations
No. 3 – a tumor board (surgeon, oncologist, radiologist, pathologist and perhaps a gastroenterologist) should review your husband’s caseI hope this helps, dear Diane. Our members are “very” experienced with this cancer and I am hoping for many to come forward to share their wisdom with you.
Please stay in touch, we are here to help and are in this together.
Hugs
MarionI totally understand and have been in the nightmare. ERCPs do pose risks, especially if a GI doctor is not exceptionally skilled with this challenging procedure. My mom’s first ERCP caused pancreatitis which added an additional week at the hospital due to the pain, and redoing the ERCP. That was an awful two weeks! I remember City of Hope was quite a lengthy admittance procedure, and decided it was too far for us anyway. Make sure to get several opinions about his condition and take it from there as far as the best decision in his case. Sorry I can’t get into specifics.
Thanks for joining our forum, and it’s a great place for support. Keep us posted.
Hello. My name is Diane and my husband was told he has stage 4 cholangiocarcinoma on May 5, following an ERCP and EUS. These were follow up procedures since they had put a stent in his bile duct last February. After his follow up procedures (which was on a Friday)he was in quite a bit of pain all weekend. I had assumed he was sore from the procedure itself. Then on Saturday evening I noticed he felt feverish, and so took his temp to find it was 101.8. We then ended up at Urgent Care, where he was given two antibiotics. We live in southern California, and several people we know had highly recommended the City of Hope, so on Monday morning I called and got him registered and was told a nurse would call within 24 hours to schedule an appointment. While waiting my husband was still in severe pain, so I called our primary Dr. to see if he could get painkillers. We had to go in for a visit, and after learning everything my husband had gone through, told us we needed to get to the ER YESTERDAY! We went right over to the hospital where he ended up being admitted. At this time City of Hope called & upon learning about his admittance to the hospital said I would have to reregister him after his discharge. So after being discharged this Saturday, the 13th, we are back to square one waiting for the nurse from City of Hope to call and get him in there.
Meanwhile, he was hospitalized due to an inflamed gallbladder which they think was due to the ERCP. Then at the same time his ulcerative colitis flared up. They put a drainage tube from his gallbladder which is still there indefinitely.
To sum up, this has been overwhelming! He is only 52, and just two weeks ago we were living an ordinary life with no medical issues. I can’t believe this is happening and wish that I would suddenly wake up to find this has been a horrible nightmare!
Please forgive me for the length of this post, just wanted to give some background. I am hoping I can get some information from these forums.
Thanks.
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