jim-wilde
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Mark, different doctors prefer different imaging technologies, depending on what they are looking for most. I have have mostly CT scans,one PET, but cannot have MRI’s, although pre-surgery that seemed to be the preferred imaging in my case. Gemzar and Gemzar+Cis are two commonly used protocols following surgery. I guess you have to find a doctor you trust and go with that suggestion.
Kelly, I’m so sorry to hear of your mom’s passing. She’s now in a better place with no pain and suffering. And you can rest assured you did all you could possibly do to help. This horrible disease is so unpredictable. Some fight on for years, others only have weeks. It’s such a shame when a relatively young mother like yours is taken from us.
Think of the good memories of your mom … they will be with you always.
The link above doesn’t work. Try this:
http://www.cancer.org/Treatment/SupportProgramsServices/HopeLodge/index
This is wonderful, and I was totally unaware that this existed. Thanks for putting it up here Kathy.
For reasons I don’t fully understand, CC is much more common in Asia. Only about 30% of cases diagnosed are surgical candidates, and not all surgeries are successful. My onc asked me if I’d spent any time in Asia. I had surgery 4/8/09 and began chemo ~ 6/1. CA19-9 were up over 200 for me and came down fairly consistently and finally settled out < 20. That test is subject to a fair amount of somewhat random variability, so the trend over time is more important than any single result. Be glad the VA didn’t do the surgery. There are relatively few places to have this kind of surgery done, because cc is pretty rare (~2000 new cases per yr in the US). Best of luck going into the future.
I had a resection done at NY Presbyterian 4/09 and six months of Gemzar following. While my final path report didn’t show any remaining cancer, the oncologist recommended the Gemzar chemo protocol, based on the pathologist’s comment about the aggressive nature of some of the removed tissue. The onc said there is very little data (this is a rare cancer … < 2000 cases per yr in thew US) and no definitive chemo protocol for cc, although Gemzar and sometimes another agent are used as well. This is a nasty cancer with a proclivity to return. I’d be inclined to go with what the doctors recxommend. I wasn’t too cuckoo about chemo either, but several doctors I trust recommended toughing it out. It wasn’t exactly fun, but not that bad either. Now I can use the ‘chemo brain’ excuse for memory lapses. Good luck with whatever you choose.
Welcome to this site and sorry you had to find it. I likewise found this site well after surgery (I had a resection done 4/09 aT NY Presbyterian). Quarterly CT’s are usually ordered for the 1st yr or two. CC has a tendency to recur but I’m not sure what the ONC is basing her prediction on. Does she have lots of CC experience, BC most don’t. Were the positive lymph nodes removed? Was there any spread elsewhere?
The nature of this disease has us all looking over our shoulders, unfortunately.
Hopefully, the chemo will knock down any residual bad cells. Good luck and try to stay positive.
Mark, I had similar circumstances. I had a left hepatic lobe resection @ NY Presbyterian 4/09, and still showing no new signs of CC (I think). Following the surgery, at the strong recommendation of my long time cardiologist, I saw an oncologist, who read the final path report a little differently that the surgeon, who recommended no further treatment, given clean margins. The pathologist noted the aggressive nature of some of the removed tissue and the oncologist, based on that recommended six months of chemo (Gemzar), 2 weeks on/1 off.
I would be inclined to go with what the doctors recommend, especially given the likelihood of cc recurrence. Chemo wasn’t all that bad for me, but there were certainly a few low points. The good thing, it has an end in sight, and it may help prevent recurrence. I’m a little over two years and counting from surgery, but still looking over my shoulder.
Good luck with whatever path you choose.
So far, so good. Let’s hope she is a surgical candidate. That’s the best hope for a ‘cure’. Good luck.
I don’t think Hormel will ever reveal the secret of Spam ingredients. It’s like the Coke formula, but I think it includes toenails. I’ve actually eaten the stuff and that’s scary.
My wife was my note taker. All Q & A info from doctor dialogues, future things to do, etc., etc. and any other reminder info This deal transpires over long time windows and even good memories get hazy. We often consult the notebook to recall info covered with a doctor six months ago. It prevents a lot of wasted time for all. I started a notebook ten years ago, when I was just a cardiac patient, now I am over two years with CC. We are in the periodic followup phase now and appointments are 4 to 6 months apart. I have also maintained a current meds spreadsheet, which is a real time saver for all, since I take a bunch of cardiac meds on a regular basis. This was useful when I was a chemo patient. Some people bring a tape recorder to doctor meetings instead, but I prefer a notebook. Save the venting for here or at home or keep a separate notebook for if it winds your watch.
The endoscopy was likely an ERCP and they often place stents during it to get bile moving and eliminate the yellow man look.
This organizational stuff just saves everyone time and eliminates errors.
Every time I’ve seen spam here, I’ve added a post:
“SPAM
delete”
and someone magically has ditched it.I like the spam genie!
I saw your other post on this topic. Both Dr. Emond and Dr. Fong are very experienced with CC. I was treated at Columbia Presbyterian with surgery (resection) by Dr. T. Kato, a brilliant surgeon, who works with Dr. Emond. I don’t have any direct experience with Dr. Fong, but know of him by reputation. They do many liver transplants at Columbia and a lot of other liver/billiary surgeries as well. Good luck. It would be hard to select two better surgeons to consult with.
Debora,that’s a good question for your grans doctors. It may be true, but my knowledge is limited pretty much to my own circumstance. I think there have been some successful transplants done for cc patients. My understanding is that surgery generally (resection or whipple) presents the best hope for a ‘cure’. But, ask this of the doctors.
Debora, the only Comprehensive Cancer Center in WI is UW Paul P. Carbone Comprehensive Cancer Center in Madison. I assume that’s where your grandma is going. This is a rare disease and the best care is almost only found at the major cancer centers. Ask lots f questions, both here and of the doctors.
Who will be your grandma’s advocate? I would suggest that person start a notebook, if you haven’t already. Good luck.
