jim-wilde
Forum Replies Created
-
Posts
-
Mandy, your Mom should be thrilled she is a possible candidate for surgery, which is the best chance of a ‘cure’ from this horrible disease. I had a resection several years ago done by a wonderful surgeon in the US and have been clean so far. The surgery is a big one, but I survived it in spite of having several cardiac events during surgery. I was wide awake the next morning and talking to the doctor and others. There’s a point when you need to stop worrying and put your faith in God and the doctors.
Best of luck this week and let us know how it all goes.
Debora, I was treated at Columbia Presbyterian in NYC and had a successful resection about two years ago by a brilliant surgeon, Dr. Tomoaki Kato. I’ve been clean so far, and have another CT scan in May. Dr. Kato will offer another opinion if you make the arrangements and send him the medical records and scans. You can count on him to provide an honest opinion. BTW, he has a reputation of operating successfully on ‘inoperable’ patients, but he won’t take a case with no chance of success. He’s very creative with difficult circumstances. There is complete contact info for Dr. Kato under the “hospitals” link below my name.
Because this disease is so rare, you may have to do a bit of traveling for the best care. Where I was treated is nowhere near where I live. Best of luck.
Debora, sorry you and to find us and welcome. I can’t tell you your grandmother will be alright, but I can tell you she needs to be treated at a big city/major cancer to have a decent chance. Where is she being treated? Has she had an ERCP and had stents placed yet? Stents will reduce or stop the jaundice. What other treatment is she getting or is planned? You may need to get more opinions depending on your confidence in the planned treatment.
This is a rare cancer, that’s why it needs to be treated at a major cancer center, where they have the needed experience. See the links below my name, assuming you are in the US. Good luck.
Nick, sorry you had to find us. Where is your brother being treated? Has surgery been ruled out, and if so, why? It’s the best hope for a cure.
As Lainy has suggested, this is a rare disease and the best treatment is typically only found in big city/major cancer centers. Below my name are links to major cancer centers and hospitals.
Good luck.
Lourdes, I had six months of Gemzar (2 wks on/ 1 off) and I had one tired, not too great day/night, then OK until the next infusion. Not sure what Cis adds to the mix. Maybe Marion can add about the support group question, but my guess is there’s probably not enough of us CC people locally to form a group. I’ve exchanged emails and had phone calls with a few people that were sort of local, but none really nearby.
I’m sure others with more similar chemo experience will chime in. Good luck.
Anne, sorry you had to find us. Welcome! I have Medicare and have not had any problems getting treated at NY Presbyterian in NYC for both a resection in 2009 and continuing followup care there with only minimal costs for what Medicare and supplemental BC/BS doesn’t cover. My costs for transportation have been more than the medical care, and there has never been an issue of denial of treatment because of Medicare.
I would expect you should have lots of options, including getting more treatment opinions. I wish you well in your quest.
Swollen ankles are clear sign of fluid retention … I wouldn’t wait a week, especially if there’s any chance she might have any cardiac issues.
I have a few comments. A PET, when used with a glucose IV, will ‘light up’ cancer lesions. I had my first PET in January this year. Also, both CT and PET technologies give the patient a very big radiation dose. MRI gives the patient no radiation. In my case, when I was first being diagnosed, my cardiologist, who was my shepherd through the doctor maze, was upset when she recalled I couldn’t have any MRI’s, due to having an AICD implanted (metal). I can only suspect she felt the MRI was a superior technology for diagnosing cc extent.
It seems like you’ve made good use of some of the best medical resources in the NY area for your mom. Glad to hear of some positive progress.
I don’t know if this is helpful or not, but I have cardiac issues that promote fluid retention, and take a small dose (20mg) of furosemide (also known as lasix) every day. This diuretic works quite fast (I take it early AM) and it works by mid morning latest. This stuff is very commonly used for cardiac patients with a heart failure diagnosis to manage shortness of breath, etc. and may be useful for your mom. In a hospital setting, if the injectable flavor is put in an IV line, you have no more than 10 minutes to be ready to deal with the results.
Again, glad to hear your mom is making some positive headway.
Bob, glad you found the ‘right’ doctor. My circumstances were a little different, but I found the ‘right’ doctor through a fortunate and fateful phone call to a doctor to get an ERCP done, after the local gastroenterolgist called someone in Baltimore he trusted, and the endoscopy doctor he called was on vacation. I called a cardiologist I’ve known at NY Presbyterian for years and she got me scheduled for the ERCP the following Tues (my call was on Fri). There were a few more bumps in the road, which I won’t bore you with, but I was operated on 4/9/09 with a successful resection. As the cardiologist told me after the surgery, “God hasn’t decided to call you quite yet.” As this all turned out, I ended up with a brilliant surgeon, Dr. Tomoaki Kato.
I still reflect on how my case might have unfolded were it not for that fateful call on a Friday afternoon to Dr. Sun Hi Lee, the cardiologist. I’m sure Dr. Lawrence Koep occupies a similar place in your mind. I hope your recovery proceeds well. God bless the wonderful caregivers, whether they be doctors or family or friends.
Vanessa, sorry you had to find us. This is a rare cancer (cc), and the very best care is typically only found at big city major cancer centers. I was treated at Columbia Presbyterian ( known as NY Presbyterian), which is nowhere near where I live. You want to make sure whomever is treating your grandfather has significant CC experience. There’s only about 2000 cases per year in the US. I was operated on several years ago by Dr. Tomoaki Kato, and so far am still cancer free.
Best of luck with your grandfather.
Sorry to hear of your loss. Charlet, I don’t know where your grandfather was treated, but there is good treatment available, but almost solely in big city cancer centers because this is a rare cancer (~ 2000 cases diagnosed per yr in the US). Right now, my understanding is if the cancer is detected early enough, as it was in my case, surgery is the best chance for a ‘cure’. Smaller hospitals have almost zero experience with cc. It may have been in your grandfather’s case, the disease had progressed too far and the doctors may not not have had experience with it as well.
This website provides good support for patients and their families, and a number of us have corresponded with patients and their families when it makes sense. I know I have had several phone conversations with family members and I know many others here had as well. This isn’t just a website. Because of the rarity of the disease, patients are often scattered all over.
Good luck with your research.
Joe, it is not clear whether you have been able to contact Dr. Kato. I too was a patient of his and have the following info for you:
Dr. Tomoaki Kato, Chief, Division of Abdominal Organ Transplantation
Columbia University Medical Center
PH Room 14-105
622 West 168th St
New York, NY 10032
Phone: 212-305-5101
Fax: 212-305-5124
Secretary: Delia GarciaI would suggest contacting his secretary, Delia first, and I’m sure she will give you complete instructions about how to send the scan and report data.
By the way, I would have been considered ‘inoperable’, but for Dr. Kato. He’s operated on many patients that were considered ‘inoperable’ for a variety of reasons. In my case the primary reason was cardiac condition. I had several cardiac events during my 12 hour surgery, but the surgical team handled them with aplomb. No harm done! Don’t be too quick to accept inoperable without additional opinions for Debbie.
Sorry you had to find us and best of luck in your wife’s care.
John, there are several hospitals in NYC that have lots of cc experience. I was diagnosed and treated at NY Presbyterian several years ago with a resection done by Dr. Tomoaki Kato. I know he would give an honest opinion regarding your Dad’s diagnosis. Memorial Sloan Kettering and Mt. Sinai also offer excellent CC services. As pointed out, this is not always easy to diagnose, and you don’t want an unclear diagnosis, because treatment can’t correctly begin until it’s clear what is being treated. Morristown Memorial is a great hospital, but I’m not so sure for cc. During my cc adventure I was a patient with cardiac issues at Morristown, prior to being transferred to NY Presbyterian.
I’d be happy to discuss my experience with NY Presbyterian with you. Just shoot me an email if you’d like to talk.
Good luck.
