sara
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I did not see that interview. Thank you for posting the link!
It certainly seems like the researchers are closing in on finding the silver bullet. I hope it’s for this cancer, as well as the other GI cancers.
And there is a patent application on file directed toward the administration of dichloroacetate for treatment of cancer:
http://www.wipo.int/pctdb/en/ia.jsp?LANGUAGE=EN&IA=CA2006000548&DISPLAY=STATUS
Another article on the same chemical: http://www.economist.com/science/displayStory.cfm?story_id=8548706
Kate – My thoughts are definitely with you during this time. Going through the slow decline was definitely one of the most difficult journeys in my life.
This is only my perspective, and the patient was young (31). The decline was slow – many doctors/nurses/hospice all said the same thing: the process took so long because she was young. After 6 months of chemo, she was slated to have a resection back in May ’06. However, they found that she had fatty liver and called off the surgery. (I believe fatty liver is common for her chemo) The doctors opted to reroute the blood flow to her liver, hoping concentrating the blood flow on the healthy part would reverse the fatty liver. We waited approximately 4-5 weeks for the next scheduled resection. During this time, she was completely without chemo, and the pain started to intensify. The fluid in her extremities also began to accumulate.
In June, she went in for her second attempt at resection – this time the surgeon opened her up and saw the cancer had metastesized to the abdomen. They closed her up and eventually sent her home. She then began a second, chemo regime.
During this time, the pain lessened, but never went away. And she was always bloated. The doctors put her on diuretics, which seemed to help.
Around late September/early October, her body became weak, causing her to miss out on chemo treatments. They gave her a blood transfusion and magnesium treatments, which worked briefly. A week later, the scans showed that her second chemo regime was not working, and the tumors were spreading. At this point, the ascities had begun to set in. (I can’t recall when it first started, but it was definitely there in September – she looked about 5 months pregant at one point) The oncologist opted to restart her original chemo regime (the one she was on prior to the attempted surgeries) in mid-October. She was borderline for the chemo, but they opted to proceed. She completed her infusion at the hospital, but was not able to complete the infusion from home. She became extremely disoriented, confused, and weak. She went into the hospital for what was essentially dehydration and kidney failure. She was there for 8 days while the doctors slowly rehydrated her, and the kidney function increased. This is the first time they started draining her abdomen. During this hospital stay, we would chat with her every time she was awake. Only towards the end of the stay did she become lucid. She did not remember anything past the chemo treatment.
Early November, she went back for one day of physical therapy, but then decided that she was in too much pain to fight any longer. She knew the outcome would not change regardless of what she did, and she was too tired and in too much pain to go on. I’m not going to lie – the pain was unbarable at the end. From the day she verbally told her husband that she was done seeking treatment (November 3rd), it took her body almost two weeks to shut down. And during that two weeks, she did not receive any food, and only liquids on the first two days. After that, we just watched as the body slowly shut down. At this point her body had accumulated so much water in the abdomen that I think it was able to survive for so long without any fluids. Those two weeks were painful to watch – she moaned non-stop until the last day. Her breathing would fluctuate between extreme labor, and ease. The hospice nurses kept telling us that she was not in pain, but her expression on her face indicated otherwise. She was never comfortable. Sometime around November 7th, the bile started coming out her nose. It was small and runny at first, and easily suctioned. By the end, it was extremely thick, an would clog up the suction devices as we tried to clear her airways. Over that 2 week period, the fluid slowly came off her body, and the urine product dwindled significantly. Her face, arms, hands, and feet finally started to look normal again.
On November 15th, she finally found peace. It was the only day when she was quiet, and appeared restful. That evening, she took her last breath. Something that nobody told me, and I found rather shocking to stumble upon, is that she would be extremely yellow once the blood flow stopped. She had been jaundiced before, but I was not prepared for the color after she passed away.
Something the hospice nurse shared with us that you may find helpful: you look for three things to coincide: (1) the patient stops eating, (2) stop drinking, and (3) urine production stops. When all three coincide, the patient generally has about 3 days left. This ended up being true in our case. I’m sure it’s not absolute – but it did give all of us something to focus upon while we were waiting.
My best to you, Kate.
crider – keep reading this board, as well as anything you can find pertaining to cholangiocarcinoma. I don’t mean to alarm you, but this is a horrible cancer and there is practically no research on the subject. You’ll find that many doctors will recommend many different courses of treatment. If you just look around this board, you’ll see that almost every patient is doing something different. Some caught the cancer early enough to be able to have surgery. I believe the established course of treatment after surgery is just to monitor periodically for any return of the cancer. But some patients want to go a step further and follow up the surgery with chemo. For those who were not diagnosed until after the cancer had already spread too far, surgery was not an option. And you’ll find those patients on here have done everything from altering their diet, to hitting the tumors with chemo and radiation.
The reality is that there is no prescribed treatment for this cancer. Your doctor can throw ideas on the table, but he/she does not really know the best course of treatment because the science just isn’t there yet. In the end, the course of treatment is completely up to your husband. So I highly recommend that you both start reading, and keep up with educating yourselves. And to that end, I’d also recommend getting more opinions from doctors who deal with this cancer routinely. No doubt your oncologist at KU has already contacted other oncologists from around the country to get them to weigh in on your case. But that should not mean that you don’t follow up with more doctors on your own.
Kris – Dr. Vauthey was my friend’s surgeon and she loved him for his sense of humor, and his willingness to fight with her for her life. He’s considered “one of the best liver surgeons.” I always take that with a grain of salt. It’s hard to judge – there are so many doctors out there who are considered “the best.” The reality is that MD Anderson attracts the top tier of surgeons, oncologists, etc from all around the world. I think you’ll be in great hands with any one of them. I know that Dr. Vauthey’s boss is also extremely well regarded, but I do not know his name off the top of my head. I’ll make a call and post the name up later.
I don’t know Dr. Curley, but Dr. Cathy Eng at MD Anderson is fantastic. MD Anderson is a little goofy with how they assign doctors, so I don’t know if you’ll be able to request a particular doctor or not, but I highly recommend her. She’s so nice, and on the fast track in the oncology community.
Please see the General Discussion section of these boards. The family of Mark Clements not only started this website, but they also started a non-profit foundation dedicated to increasing research and awareness of cholangiocarcinoma. It may appear that there is not much work going on because much of it is behind-the-scenes. However, it took a great deal of effort just to get the non-profit established, and a large portion of the board is understandably preoccupied at this time with the loss of their son/brother/best friend.
There is so much to do, and the foundation will need as much help as possible. I’m fairly certain the foundation plans to have events for raising money, as well as other means of fundraising, and also patient advocacy. The board is meeting in a few weeks to finish up with the remaining start-up details. After that, you will undoubtedly begin seeing numerous updates in the General Discussion thread. Feel free to email me and I will do my best to keep you updated. sara.hinkley@gmail.com. It’s wonderful to know so many wish to be involved. We will change the face of this cancer.
Words are never enough, but please know that you and your family are in thought thoughts and prayers of so many in this community. My heart goes out to you – no one should have to walk this road. I hope you can take some solace in the fact that so many of us are struggling to pick up the pieces and move forward. You are not alone, and you will one day be able to go on.
I was extremely overwhelmed by the sheer number of passionate, brilliant minds all collected in one room, sharing their research. I spent all day Saturday listening to the various talks on pancreatic cancer, hepatocelluar carcinoma (HCC/primary liver cancer); and cholangiocarcinoma. I didn’t hear any “new” treatments per se. However, there appears to be a good debate surfacing regarding conflicting research on the effects of radiotherapy on HCC. I am sending out a few emails today to get some cholangio specialists to weigh in on the conflicting research, and whether these doctors believe the data can be applied to cholangio.
It’s going to take me time to pour through the hours and hours of notes and audio recordings. I’m hoping to either post the recordings on the website, or to slowly post transcripts from the talks. And, in about 60-90 days, the slides from the presentations will be available to the public.
David – before Kelly’s aborted surgery, she directed us to Greg Hewlett’s website to get an idea of what to expect from a liver resection. I’m pasting the link to the website below, starting on the day of surgery. (back in 2003) Hopefully this will help you ascertain what you can expect.
http://hewletts.org:8080/archives/_surgery_good_news/000230.html
David – My friend, Kelly, was treated at MD Anderson. They were able to shrink her tumors small enough so she would become a candidate for the surgery. Her surgeon, Dr. Vauthey, was Kelly’s favorite doctor. When they finally opened her up for the liver resection, they discovered the mets to the abdomen and could not proceed with the surgery. So, I cannot share any details regarding recovery, pain, etc for the actual resection. But I can say that Kelly loved Dr. Vauthey, and he is regarding as one of the top liver surgeons. (this opinion comes from doctors I know at other top cancer hospitals) He did his surgical oncology fellowship at Sloane Kettering, and is now at MD Anderson. http://www.mdanderson.org/Departments/Pancreatic/dIndex.cfm?pn=7FA30D57-7A03-11D4-AEC700508BDCCE3A
A great oncologist at MD Anderson who comes highly recommend is Dr. Kathy Eng. She’s actually giving a talk at the GI Symposium later this week. More importantly, she’s a great caregiver.
If you do make it to Houston, please page me. Kelly’s friends and husband are all here, and we’ll do what we can to make your time here as pleasant as possible.
Oh, gosh. I’m so sorry to hear that. We endured a similar experience with my friend, Kelly, when she had her last chemo treatment. She was borderline for the chemo, but she elected to proceed. It took a huge toll on her body – she was in the hospital for almost 2 weeks after that treatment.
It’s hard to say what will eventually result in the passing. A big indicator that the body is shutting down is ascites (fluid retention in the abdomen). Once this begins occurring, it’s a sign that the kidneys are having difficulty processing the water in the body. Sometimes this can be helped with diuretics. Once the diuretics stop working, the doctors will resort to draining the abdomen to increase comfort of the patient. But at this point, all signs are pointing towards kidney failure. Once that occurs, the passing is not far away. I’m not sure how adema plays into this. As I remember, Kelly had adema for months before she started retaining considerable amounts of fluid in her abdomen.
A large number of patients also succumb to infections. The body is in a weakened state, so the infection can really take hold and be difficult to fight off. I’m sure you’re well aware that an infection can develop instantaneously, so that’s a situation that can definitely catch you off-guard, and hasten the passing.
I spent a lot of time at the end focusing on the signs that would indicate that my friend was about to find peace. But, in retrospect, I wish I had taken another friend’s advice to ignore those thoughts and just “soak Kelly up.” Figuring out the moment of the passing was not important. However, spending as much time with her as possible was important.
I wish you my best during this time. I hope your mom is comfortable and at peace.
