jim-wilde
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Marion, I added my daughter’s advise (she has a six year old, plus a 17 and a 19) to Dr Lee. My daughter said little kids are really easy, compared to teenagers … their issues are way bigger and harder to handle. She (Dr Lee) muttered something about being too old for this (she’s just 50) …
I think I may have sent poor Dr Lee into terminal depression!
Pancreatitis has been ruled out. 10/12/11 PET/CT scan head to mid thigh showed no lesions at all. CA 19-9 from 10/12 also is now 59, so that is moving in the right direction. Bili numbers still slightly elevated but appear stable for the time being. We will probably go back to quarterly scans and monthly blood tests. Still some mystery, but may take just careful monitoring for the next six to 12 months. I was hoping to start a new thread, i.e. Part 2, but I think I’ll wait for the current smoke to clear. At least there doesn’t seem to be anything immediately ominous, which I guess is very good.
On a lighter note, my dear onc, Abby Siegel recently adopted a little child, which has been no problem at all for her. My cardiologist, Sun Hi Lee also adopted a little girl, Adela almost 2 years ago. Adela is going through the ‘terrible twos’ and has been a real challenge. I suggested to Abby that maybe Dr Lee had gotten in the wrong adoption line (i.e. returns). When I saw Dr. Lee the next day, I told what we had concluded, and she had an aha moment and a really good laugh! Life is too short to miss these opportunities!
Robert, the only safe assumption for doctors to make is that all cc instances are aggressive and fast growing. In my case, most of the resected lesions were not aggressive, but the final pathology report noted that some very aggressive tissue had been removed, and that was justification for the onc to recommend adjuvant chemo for six months right after the resection. From a treatment perspective the fast and aggressive assumption should always be made. I believe that some slow growing causes may transform into very aggressive ones with no warning and very little in the way of observable symptoms. My doctors at NY Presbyterian all assumed aggressive and fast growing cc.
From what I’ve read, Thailand is the country with the highest incidence of CC, and I believe the thinking is it is, in fact, related to liver flukes. I think most of Asia has high incidence of cc than elsewhere in the world.
Shari, where are the mets resident?
I too, had a resection some time ago, and in May this year, also had a lung nodule removed. I was very interested in the lung lesion pathology and a very experienced pulmonary specialist reviewed the path report with us in great detail. As it turned out, the lung lesion was totally unrelated to cc, and is very unlikely to recur. I’m a little mystified by the mets with you having no signs of cc in the liver and the lung surgery presenting clear margins.
I would be inclined for additional opinions, if there’s any doubt at all. BTW, I’m going through a time of some uncertainty. All my scans have been clean, including a PET/CT done three days ago. The uncertainty comes from blood test anomalies (I had perfectly normal CA 19-9’s and liver function panels for two years following surgery). In early August I had a CA 19-9 that was 88 (normal is < 37), followed by 133, 73 and 102 over the past few months. Had another Wed., but results not yet available. Also, bili direct and total have trended upward and slightly above the reportable triggers over the last nine months. All doctors seem in agreement that something is going on, but so far, it's eluded detection. From what I understand, the PET/CT tumor size resolution is in the range of 1 to 2 mm, and my most recent scan was head to mid thigh. So, the mystery continues. I hope the doctors can come up with a good strategy for you. Saying a prayer for you.
Kris, glad to hear the pump has been effective for you and also for the Gem/Ox working. Nice to have hope that surgery or other techniques are being discussed also. Months back that was just a hope.
Wishing you the best.
Ken, I had a resection 5/09 followed by 6 months of Gemzar, and still get twitchy with when the scan ‘scanxiety’ times roll around. I have been blessed with exceptional doctors at NY Presbyterian, which is a continuing source of comfort. Tomorrow is a PET scan to try to resolve some persistent blood test anomalies. I should know by early afternoon whether to worry or not!
As others have suggested, more opinions from really good sources is never bad, especially if there’s doubt. Good luck!
sowfi, you don’t have to apologize for the length of your post and feel free to rant if you have the need. I feel your pain in dealing with an uncooperative patient. I can’t give you medical advise, other than to find the very best doctors with cc experience and hope mother gets cooperative. In my case, the diagnosis was confirmed after CT scans with a special endoscopy called an ERCP. During that procedure, stents were placed to relieve bile duct blockage, which in turn removed the yellow man look and fierce itching. This procedure has some risk and you want a good doctor doing it. For someone experienced in dealing with cc, it’s not necessary to remove any tissue.
I wish you good luck with a challenging patient! Keep us posted.
Sissy, I would suggest getting opinions from a major cancer center where they have significant cc experience, especially if you’re not happy with what you’re hearing. As I’m sure you probably know, this is a pretty rare disease (< 2000 new cases per yr in the US), so even major cancer centers don't have huge amounts of experience. There are some major cancer centers that have lots more experience than others. I would look at the "Hospitals" thread here to see what experience others have had with cc here. I find it painful to read of some experiences patients have related here where it was clear to me their doctors/hospitals were clueless. One of my cancer friends was told by four major hospitals to just go home and die. Well, she's still very much alive well over a year later and still fighting, after going to a fifth hospital quite distant from home. And that's where she's continued to go for followup treatment and diagnostics, BC she trusts them. Wishing for the best possible outcome for you, Sissy.
amangeloff, we are blessed in this country with some extraordinary doctors and sounds like you have found several. With cc, there aren’t that many surgeons with both the experience and skills, plus the creativity to handle some very challenging patient situations. I too was blessed with finding Dr. Tomoaki Kato at NY Presbyterian. He’s also a very creative and brave surgeon, who has taken some very difficult patient situations and achieved successful outcomes. He took me as a patient, when it was unlikely any other surgeon would.
As you probably know by now, surgery is the only hope for a ‘cure’ with cc. I hope your husband has many clean scans in his future. Bless you both.
BTW, you may want to add your doctors to the “Hospitals” thread (link below my name), where we post our experiences with various doctors/hospitals. There have been over 10,000 views of that thread … one of our most visited places and a unique patient centric view of those doctors and hospitals in the cc context, a very unique resource.
Dawn, CT scans usually tell the story about possible recurrence of cc. I’m about 2.5 years from a resection and also going through some uncertainty regarding elevated CA 19-9 results over the past several months (3 tests, all over the trigger value), gradually increasing bili numbers over the past six months. I’m not able to have MRI’s, so it’s off to get a PET in a few weeks, and perhaps other tests if the PET is not conclusive. I had a series of CT’s mid-August and all clean and reviewed by some very talented eyes at NY Presbyterian. These are clearly times of high anxiety for patients and their friends/families. Just a nasty byproduct of cc.
I hope Theresa has nothing of great consequence. Good luck to both of you.
Having been a caregiver for my stepfather, who had widespread internal cancer, morphine was the only effective pain med for him in the last several months. He had made me promise to let him stay at home to the end, which we did. It did create some problems getting morphine at times, but we managed. I can certainly empathize with what you’re going through.
Nancy, bless you for being there for your mom.
Ceusita, it sounds like your husband has had a rough time. You asked about multiple cancer types … I had a cc resection ~ 2.5 years ago, and this May, had a small lung cancer lesion removed in a tricky surgery. What’s ironic is the lung cancer was found because of the many CT scans I’ve had over the past few years. The lung cancer was totally unrelated to the CC, which is a very good thing. Most lymphomas have a better potential outcome than CC, which is the bright side.
I wish you and your husband well.
