jim-wilde
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Ellen, I too had the 100% itching, but it went away completely about ten days after an ERCP and stents placed at that time. The gastroenterologist I saw gave me several Rx’s (can’t recall what they were , but neither was helpful).
How long ago were the stents placed?
Good luck.
Kris, I wish you well on your upcoming surgery and hope for the best possible outcome. Intuitively, one would think applying chemo agents directly into the tumor would be more effective than in an IV. After we’ve found a doctor we think has what’s needed in skills, we just have to trust their judgments.
Let us know when your up to it.
Tansey, sorry you had to find us.
Tansey, what diagnostic procedures have you had to date (i.e. PET or CT scans, echos, ERCP, blood tests, etc.) While CC is rare, it isn’t that hard to nail for experienced people. Experience, however, is the key. I can’t speak for Dana Farber, but in NYC there are several good places (NY Presbyterian, Memorial Sloan Kettering, and Mt. Sinai.) I was a patient at NY Presbyterian several years ago and had a good outcome.
I hope you get a plan in place soon and hope for a good outcome for you.
Val, if you haven’t already, bring these issues up with your doctor. Pain is not normal following surgery, especially 5 months out. I don’t know enough to suggest any solutions, but there must be ways of dealing with the pain and discomfort.
Sorry you had to find us. I don’t have any personal knowledge of Dana Farber, but it is a major cancer center, so not a bad place to start. NYC has several excellent hospitals. I was treated by NY Presbyterian by surgery with Dr. T. Kato, who has operated successfully on many patients who were judged ‘inoperable’ by others. I would have likely been in that category, but Dr. Kato was my first stop. I would question why your daughter is considered inoperable and consider seeking additional opinions. In the link below my name are a number of hospitals we have experience with. I have posted complete contact info for Dr. Kato in the 4th section of that thread. Other hospitals in NYC that have experience with CC are Memorial Sloan Kettering and Mt. Sinai.
I know Dr. Kato would give you an honest opinion of your options.
I wish you good luck in finding care for your daughter. Keep us posted as to how you make out. You will find a lot of caring, helpful people here. Time is important, so try to have a plan in place soon.
JennyLou, my recovery following surgery was pretty uneventful and pain free. I was sent home with an Rx for morphine tabs, of which I used two the first few nights to make sure I slept OK. I did end up with a few infected incision areas, which took a long time to heal because I had six months of Gemzar following surgery. The chemo stopped new cells in their tracks. For me, surviving the surgery was the big part.
Good luck to your Dad.
Minnie, I had no pain right up to when I had surgery (resection) and none since. My understanding is a lot has to do with tumor size and location. Some instances of CC are very slow growing, some quite fast. Not sure why in either case.
Good luck with Karl’s treatment.
Ginnie, sorry you had to find us, and welcome. I think you will find a lot of caring, compassionate and very knowledgeable people here. I didn’t find this site until well after my adventure with CC began, and could have used the support.
Where are you located (we get people from all around the world here) and where are you being treated?
Good luck with your treatment and I hope for a good outcome for you.
Kris, I’m glad you are well organized. It’s important for doctors and patients, and so many patients are so caught up in the confusion and fear, that they are totally disorganized.
Kris, I can’t comment about Dr. Fong, since I have no personal knowledge of him. But there is no harm in seeking more opinions until you are totally comfortable with where you’re headed. If you are already in or near NYC, I would recommend getting a second opinion from Dr. Kato. He’s a really caring, humble surgeon with unbelievable skills and courage, and has a reputation for helping ‘inoperable’ patients. I was, as I found out later, likely to be in that category, save for Dr. Kato, who I found through remarkable good luck and fate. If you go to the 4th section of the thread “Hospitals” under my name, you will find complete contact info for Dr. Kato. You can count on him to give you his honest opinion.
No doctor should be offended because a cc patient is seeking additional opinions. This is a very challenging disease and it requires patients to be resourceful because it is also rare, and no one in the field has huge numbers of patients, given only about 2000 new cases per year in the US.
Again, good luck.
Kris, you can take some comfort that you are being treated at one of the best places for cc. I was treated at NY Presbyterian and operated on Dr. T. Kato with a resection two years ago, and so far, am still clean, but looking over my shoulder when CT scans come up. I can understand the anxiety (I had a couple of cardiac events while awaiting a pre-surgery meeting to be scheduled). There are only three places in NYC I would have considered for myself, MSK, NY Presbyterian and Mt. Sinai. Most other places have way too little experience with cc.
It would be nice if one of your friends would volunteer to be your “advocate”. In any case, I would suggest starting a notebook and jot down significant stuff, BC your mind may play tricks on you regarding accurate recollection of events.
I hope the infusion pump has a good outcome for you and you become a surgical candidate. Has the doctor given any time range expectation for results from the infusion pump? BTW, ‘normal’ kind of changes once we have a cc diagnosis.
Try to stay positive and keep us posted on your progress. Good luck.
Dick, I can’t help with your medical questions, since my knowledge is limited to my own experiences. I never experienced any significant pain in my CC adventure, but Dr. Kato may have some thoughts. You are doing the right thing, as Dr. Kato will give you an honest opinion regarding possible options.
My thoughts are with you during this difficult time.
Tim, you can trust Dr. Kato to give you his honest assessment without any ego involvement. About speaking with your Dad, I feel I owe at least that to anyone I can be helpful, given my own good fortune. You should know and I tried to tell your Dad, that Dr. Kato has operated successfully on many who were deemed ‘inoperable’ by many other doctors. I can’t offer any medical opinion and you need to be realistic, but Dr. Kato is able to things others aren’t. My offer regarding the CD still stands if you want it. Just send me your mailing address by email.
I can relate to the waiting … it certainly caused me some angst about two years ago and even caused my AICD (pacemaker/defibrillator) to fire twice in 24 hours for the first such events in five years. As fate would have it, it hastened my first meeting with Dr. Kato, since a very cooperative doctor in NJ had me transferred to NY Presbyterian ‘for observation’ as an inpatient. I saw Dr. Kato for a pre-surgical consultation the next day. This whole deal is very stressful, especially until you have a clearly defined game plan in place and you’re comfortable with it.
Good luck and try to remain hopeful, hard as it may be. It’ll rub off on your Dad. You or your Dad can call me anytime.
Ritchie, I had a left lobe hepatic resection almost two years ago, and I didn’t have much pain at all, in spite of some impressive incisions. The sent me home with morphine tabs when I was discharged, and I think I might had used two, just to make sure I slept OK the first two nights home. Other than infections in the incision lines, my recuperation was entirely uneventful and painfree. Just some minor digestion problems in the first week and limitation on food volume.
I can’t comment on laproscopic surgery, since I haven’t heard anything about it, and it clearly wouldn’t have been possible in my case, given all the plumbing changes. I would be inclined to ask how many such procedures have been done successfully by your surgeon.
Good luck to you.
