jim-wilde
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My wife acted as my advocate and kept a detailed notebook with Q/A’s etc. It’s amazing whenever we now look back at the notebook how many details have disappeared from both our memories in less than two years from the events. I would also suggest requesting/retaining copies of all test results. I became pretty good at reading most blood test results over time. My preference is the notebook, BC it automatically keeps stuff in chronological order, and is compact. Whenever I have a followup appointment, we always note any questions ahead of time … it saves the doctor’s and our time, and allows more useful appointments. Kind of like going to your accountant with everything organized, rather than a shoebox full of receipts.
Pam’s thought about a spreadsheet for meds is great. I keep two. One is meds history showing all, and adding new with the date/dosage. I keep all old entries, just format them with a line through the text if canceled or modified. The second one is only current meds, with Rx number and dosage. When you’re taking more than a few meds, it’s a real convenience for me and the doctors.
As you move through time, you can count on support here and some questions and concerns answered. Good luck.
Missie I really feel for your circumstances. CC for anyone is a terrible blow, but I can’t imagine what it’s like for a young family like yours.
You will need to act as Kevin’s medical advocate and help find the very best care available, which is almost solely at big city major cancer centers. You haven’t said where you are located, but people here are willing to share their experiences, good and bad, at many facilities. I’m assuming you’re in the USA. Major cancer centers:
http://www.cholangiocarcinoma.org/majorcancercenters.htm
Experiences some of us have had at various US facilities:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126I wish you the best and God bless you and your family at this most difficult time.
Welcome, Aida. A second or third opinion is warranted in my opinion. Has any other treatment been considered (I. E. surgery)? CC is a rare disease, and because of that, the best treatment is almost always found in big cities and hospitals that are NIH major cancer centers like Sloan Kettering, Johns Hopkins, etc. There are just too few cases for smaller facilities too have enough experience. In my own experience with CC, I had a resection done at NY Presbyterian by Dr. Tomoaki Kato, a very gifted surgeon.
I wish you well in your search for alternate opinions and don’t let convenience weigh too heavily in where you seek it. I would zero in on the very best places, and don’t limit the direction the opinions may take you in the adventure.
God bless you and good luck.
Jenny, glad to hear Josh is doing well following a transplant. Keep the good news coming.
Good luck.
Kelly, has your mother offered any reason for not wanting another opinion? Does she realize that CC is only diagnosed in fewer than 2000 patients a year in the US and the best treatment is almost solely available at one of the major cancer centers, and that this is a really nasty cancer? Has surgery been considered? (My understanding is it offers the best hope of a ‘cure’.) For myself, I approached cc as though it was a war … and it is!
I really feel for you, being the good daughter and your mother resisting common sense ideas. I suspect she’s probably terrified, and doesn’t want her fears confirmed, but that’s just a guess. It’s very hard being an advocate for a difficult patient. My wife and I play that role for each other, but unfortunately I’ve been the recipient way more than her. Many years ago we agreed that if either of us had something serious medically occur, that we would seek a serious treatment facility. I think all you can do is offer helpful suggestions and hope for the best. Kind of like ‘you can lead a horse to water …’.
Let us know how you make out. God bless you and children like you.
jpo98056, good MRI … very nice. Keep ’em coming, it’s certainly the news we all love to hear, and I sure you were delighted.
Kathy, I would be inclined to get at least one more opinion from one of the major cancer centers. This cancer is fairly rare, so most smaller cancer hospitals/doctors have limited experience with treating it. I had my surgery in a hospital that has a large liver transplant program and a large digestive diseases surgical group. With fewer than 2000 cases diagnosed annually in the US not many facilities has deep experience with CC. My surgeon, Dr. Tomoaki Kato, has done many surgeries on ‘inoperable’ patients. I’m sure there are other superb surgeon as well in the US.
I wish you the very best in your quest. God bless you for helping in you Dad’s treatment.
That’s just nonsense (about the bile ducts). I’ve not had bile ducts for two years and doing just fine, thank you. I had surgery at NY Presbyterian (don’t live anywhere near there). You will find, because cc is pretty rare, the best treatment is almost exclusively in large city/major cancer centers. There are fewer than 2000 cases of CC diagnosed per year in the US, so no one has huge amounts of experience with it. I was operated on by a surgeon (Dr. Tomoaki Kato) who gets lots of ‘inoperable’ cases and successfully operates.
This is just one resource here under “Hospitals”:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126There is also a list of the major US cancer centers elsewhere:
http://www.cholangiocarcinoma.org/majorcancercenters.htmYou will have a much better chance of good care in one of these places. Good luck.
Kathy, where is your Dad being treated? Why is surgery too risky? My understanding is that surgery offers the best chance for long term results against this pernicious disease.
I was a high risk patient from a surgery standpoint (age + cardiac condition), but surgery was successfully done anyway. As others have pointed out, gem/cis is a common CC chemo protocol. I had Gemzar only for 6 months following surgery.
Best of luck with your Dad’s treatment.
Rhoda, welcome. Cholangiocarcinoma ((CC) is an uncommon cancer (< 2000 cases per yr in the US). BC there are such small numbers of cc cases, there's not too any hospitals/doctors with a lot of experience. If you're comfortable with the doctor and hospital and the treatment plan they propose, that's great. But do not hesitate to seek a second or third opinion if your not OK with what they tell you. I had surgery with a doctor who's successfully operated on patients that were told by others they were 'inoperable'. In my case, I had a left hepatic lobe resection, had clean margins and have been clean since 4/09. No one likes to have to deal with these ‘surprises’. I fully understand your worry. This cancer has all of us diagnosed, and family members like you, looking over our shoulders. There’s a great bunch of people here that both understand and are compassionate. I only wish I found this site much earlier than I did, which was way after I was diagnosed. Good luck with the Tuesday appointment at Barnes, and I hope they come up with a good treatment plan. Bless you for being a good niece.
Welcome. I too had a resection 4/8/09 followed by six months of Gemzar chemo. I lost ~50% of the liver, gall bladder always goes (doesn’t fit with the new plumbing scheme), and so far, I’m still clean. BTW, don’t knock a resection. A transplant has it’s own set of negatives, like becoming instantly diabetic and having to learn to give yourself insulin shots. My last hospital roommate had a transplant. The worst for him was the lifelong anti-rejection medication. Quite frankly, I considered myself fortunate to have had a resection.
Chemo was the least fun part of the whole deal, but tolerable. The best part of chemo is it usually has an endpoint you can look forward to. I had a rough spot or two during chemo, but it wasn’t that bad, especially 24 hours after an infusion.
I wish you well on your CC adventure and hope for lots of clean scans for you. Good luck!
ChezWright, we have a specialized wound care practice nearby which has several surgeons and a bunch of nurses skilled in wound care. They have all kinds of specialized dressings, synthetic skin materials, ointments, etc. For a while (say 2 mos.), they used a vacuum device with a carry around battery pack with a very specialized dressing. This place had stuff no hospital would have and the knowledge to deal with especially difficult wounds. I had a problem (infection) with the vertical incision, which required early staple removal. I’ve provided a link to the service I used … you may be able to find a similar facility.
http://www.atlanticgeneral.org/Main/CentersofExcellence/Wound_Care_Center_Inc_35.aspx
Good luck!
Welcome, Suzan. My experience is very similar to yours. I had a left lobe hepatic resection done 4/09 with clean margins, so I think I’m a little further along. I also had six months of Gemzar following surgery, as you had. Now I have a very convenient excuse for memory lapses … chemo brain. It’s really been quite handy at times. I am almost two years from surgery and so far, so good. The tough part now is the anxiety coming up to the next CT, and fretting over some real and imagined ‘new’ symptoms. All of us have learned at lot about subjects we never would have volunteered for.
I asked the surgeon about regeneration for a lot of visits, and there’s been little or none. He said what’s left is working well, so I shouldn’t worry. I do watch the liver function test results like a hawk, though. You, having the same sequence of events, probably had the chemo inhibiting the liver regrowth. I needed about a year of special wound care for the incision to finally close up properly.
Good luck with your recovery journey and hope you continue staying clean.
