jim-wilde
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Blood chemistry can get really hammered during and especially at the start of chemo. I had begun a 3 weeks on / one week off program, with the week off mostly in the hospital getting the blood chemistry right again. The onc decided to try a lower Gemzar dose and 2 weeks on / one off regimin, which we stuck with generally w/o problems.
pgaska, sorry you had to find us. CC is a rare cancer and there are relatively few doctors and hospitals with adequate experience to come up with a good treatment plan. The only ‘cure’ for cc is surgery. Chemo is sometimes done following surgery, if surgery is an immediate option. Sometimes it isn’t. And in some cases, chemo is done prior to surgery to try to reduce lesion size to make an inoperable cancer operable. You may have to sacrifice convenience for good care. In my case, I went to NY Presbyterian in NYC. They have exceptional cc care and experience. Note that I live in MD, nowhere near NY, but I felt it gave me the best survival chances.
Note that their are about 2000 cases of cc diagnosed per year in the US, so no hospital sees a huge number of cases. Time is not your friend here. Finding a solid treatment plan sooner rather than later is important and be prepared to get additional opinions if you’re not comfortable with what you’re hearing. And ask lots of questions and take notes. We still refer back to my wife’s notes from more than two years ago, when I had a resection done at NY Presbyterian by Dr. Tomoaki Kato, a brilliant and compassionate surgeon.
I wish you well in finding good care.
I don’t think there are any identified genetic links with cc.
In my case, I had no identifiable symptoms. But my cardiologist, Dr. Sun Hi Lee, had ordered a quarterly liver function test because I was taking a large statin dose in combination with Tricor. She immediately noticed a very slight increase in liver enzymes, just over the minimum trigger for reporting. She initiated a number of steps which lead to rapid diagnosis. She had me suspend the statin for a month, and retake the liver function test (same result). Then she had me see a local gastroenterologist. He ordered an echo of the abdomen, the a CT. He then said there was a need for an ERCP, which must be done at a big city hospital. As fate would have it, the person he trusted for the test was on vacation and no clue as to schedule. Long story short, called Dr. Lee, who got me scheduled for an ERCP at NY Presbyterian the following Tues with the director of endoscopy, who sent me to Dr Kato, the brilliant surgeon who performed a resection. That was in May of 2009, and so far, still clean.
No symptoms showed until well into the diagnostic process (whole body itching w/o rash, yellow man). All that went away fairly soon after the ERCP, since three stents were placed.
This disease is very uncommon (<2000 cases per year in the US), but strange things can happen. Not many months before I was diagnosed, a girl we knew from infancy, and now married, had he husband diagnosed with CC. She had grown up across the street from us and lived there for over 20 years. I had never heard of CC before that, and probably didn't know the name when he died. By the time he was diagnosed, palliative treatment was the only course and he succumbed within months of diagnosis. When I was diagnosed, Sherrie could hardly believe it, since she was very aware of how uncommon cc is.
Where is your dad being treated?
If it were me, I would have gone orbital early on with what you’ve had to deal with. So very different than my own post op experience. I’ve seen my surgeon four to six times after surgery, met with him for about an hour pre-op, and always a caring, compassionate attitude.
I had a little problem during the hospital stay after surgery, where the liver folks failed to recognize cardiac symptoms (fluid retention, shortness of breath) even after I, on my own, summoned cardiologists to tell them that. I was so mad I could hardly speak by the time I was discharged. The head of the surgical group tried to calm me down in the last hour before I left, but he knew I was really honked off at the liver PA’s. Since, I’ve realized the issue was they were too focused on ‘their’ body part, which excluded anything else going on.
Both the nurse and surgeon’s behaviors are appalling, to say the least. This is why it is critical for every patient with anything serious going on to have an effective advocate.
I would be inclined to seek out additional care opinions from some of the excellent surgeons in the field.
Good luck in guiding your Dad’s care.
Suzanne, sorry you had to find us.
My suggestion, would be to find the best surgeon you can, who has lots of CC experience. They are typically only found at major cancer centers, and not all of them either. I would consider convenience way down on the list of priorities here, since there’s only about 2000 new cases in the US per year, and even the major cancer centers don’t see a whole lot of cases in a year.
I ended up at NY Presbyterian in NYC with a brilliant and compassionate surgeon, Dr. Tomoaki Kato, who did a left hepatic lobe resection on me in May of 2009. BTW, I live in MD, nowhere near NYC. If your Dad is a resection candidate, I would think you would want that done very soon, since time is not your friend with CC. There’s a great list of hospitals and doctors in the link below my name, besides other resources on this site.
My understanding is that surgery is the only ‘cure’ for CC.Good luck in finding great care for you Dad.
I would suggest having the doctor talk to the insurance company’s medical director. The procedure is clearly not experimental, but uncommon, since CC is so uncommon. It should be covered. Some carriers will do almost anything to weasel out of paying a claim!
I would not consider second best in cc treatment. There are major differences between the major cancer center hospitals and local regional hospitals. I would try to get the best payment arrangement from the carrier and stick with JH. Sometimes it’s just one more battle to be waged. Sad, but true.
Richard, be very glad that your wife is a surgery candidate … it’s the only cure that I’m aware of. I had a resection about two years ago, and am still clean.
Good luck with your wife’s treatment.
No, but I learned recently why Cisplatin wasn’t even considered for me. Gemzar is one of the more ‘benign’ chemo agents. Cisplatin clearly is not. With my cardiac issues, etc., the oncologist decided Gemzar only. I was started on a 3 weeks on/one off cycle, but that had be be changed to two on/one off after my blood chemistry got hammered, along with some other nasty side effects that had me in the hospital for three days. The balance of the six months went OK Cisplatin is some nasty stuff!
katielinn, if Hopkins doesn’t work out, there are three NYC hospitals that may. I was treated at NY Presbyterian (Dr. T. Kato, surgeon), who is fantastic. There’s also Memorial Sloan Kettering (Dr. Fong) and Mt. Sinai Hospital (Dr Myron Schwartz). All have gotten positive reviews from patients here.
Good luck.
Kris, I had Gemzar (only) for six months on a two on/one off cycle. We started with a 3 on/1off cycle, but blood chemistry got really hammered and had to back off to 2 on/1 off. Platelets and white cells were depressed most of the way. Mostly wasn’t too bad, but the anticipation started to build, and in one of the last few infusions I tossed my cookies very suddenly. I had minimal hair loss, which reversed once the chemo stopped. You’re on a tougher regimen, so I would expect more side effects. I hope the side effects get no worse.
Good luck.
Tracy, cc does not always progress rapidly, but it is rare (~ 2000 new cases/yr in the US). BC of that, convenience must be pretty far down the list of criteria, since the best care is almost solely available at major cancer centers. Don’t get me wrong, cc CAN progress very quickly, so time is not own friend here.
In my own case, I was treated in NYC at NY Presbyterian and operated on by their brilliant surgeon, Dr. Tomoaki Kato. BTW, NYP is about a 6.5 hour trip from home and I would do it again if needed. I now go there every six months for onc followups. In my mind, it’s all about who you trust with this nasty disease.
Why is surgery not an option? My surgeon, Dr. Kato, has operated on successfully on a number of ‘inoperable’ patients. Certainly, there are some patients who are inoperable, but I would seek a second and maybe a third opinion from the very best you can find.
Good luck getting treatment for your mother.
Kris, I’m hoping for a good CT for you later this month. I know you’ve been through a lot this year and you really deserve a break. I’ll be thinking of you on the 27th.
Oh, and keep asking questions. Doctors are especially interested if they think you’re bright enough to understand the answers, particularly those in teaching hospitals. I have learned a lot that way about my cardiac condition, and more recently about cc. When I was hospitalized for observation several years ago in a cardiac unit, I told my cardiologist that I was visited by a group of med students for about 45 minutes. When I told my cardiologist about the visit, she said “only 45 minutes?” I think cc is a bit more challenging.
Good luck!
