jim-wilde
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Grover, I had a resection 4/9/09, and it’s not too bad. I was on the way home on Sunday the same week as the surgery. Not much different than any abdominal surgery, although this is a little more involved. Recuperation and discomfort wasn’t too bad either.
You’ll do fine. Looking forward to your giving us feedback after your surgery. Good luck!
Byron, I would hope your doctor would present your case aggressively to BC/BS’s medical director. Y90 has been used for quite a few years and is not considered especially novel now. If you get much more stalling, I would consider getting some media involvement to plead your case. I can’t believe BC/BS of Utah is that different from other locations.
Percy, thank you for the kind comments about the radio program. It’s unique and has had a growing audience and growing sponsorship. I just hope Kim has the continuing energy to keep it up.
The next program, Thursday March 1 will focus on “Pediatric Cancers“. I will post more info as we get closer to air time. The recent benefit in Phila raised enough money to keep the show on the air for another twenty six weeks, if Kim can stand it. She been up late every night responding to loads of emails, FB messages, etc., and she really can’t delegate any of it to someone else. The really good news is it’s given her a compelling reason to go on. I just love her attitude.
To those who have supported the show, thank you so much.
As a general comment, I see my onc every four months, and she typically orders eight to 12 panels (Chem 20, CA 19-9, liver function panel, CEA, etc., etc.). BC I’ve had some blood test anomalies, I’m getting most of them monthly when I don’t see the onc. During chemo, I had a bunch of tests weekly, and the local onc decided go or no go on that weeks infusion based on the most recent blood work. Any time there’s any reason for uncertainty is time to increase the blood test frequency. BTW, I wouldn’t read too much into one or two CA 19-9 results. I would just be happy it’s < 37.
Diana, you should know Derin’s experience, at least amongst the resection patients I have talked to, is unusual. While some infections are not too rare, going home with a bunch of drains with the ensuing complications is. I think my own experience is much more typical of resection patients. You can’t worry too much about what you don’t know, and in any case, you’ll probably worry about the wrong things anyway. Have faith your doctors know what they’re doing and just roll with it.
Good luck again.
Derin, Gemzar is pretty benign stuff. Cisplatin is the real butt kicker, however, in terms of toxic effects. I asked why I only got adjuvant Gemzar, and my onc said, given my cardiac history, she knew I wouldn’t tolerate it at all. Your onc should be experienced with cc, if not I would find one pronto. This is why cc patients should always try to seek out a major cancer center with cc experience. I had an onc at the hospital where I had my resection, but all chemo was done locally (I live about 6 hours from the hospital). I have continued to see the onc at the resection hospital for all followups and scans. She has extensive cc experience, which is seldom the case with smaller or regional hospitals. Even at that, I doubt she sees more than 30 to 50 new cc patients a year, given that there are only ~ 2000 or so new US cases per year.
BTW, Gemzar kicked my butt early on until they got thr dosage and cycle right. After the first months or so, it wasn’t too bad, other than the 24 hours right after infusion.
Once you have an onc you completely trust, you just have to go with his judgment. Good luck.
Tiff, you already know how I feel about Dr Kato. He’s a brilliant and creative surgeon and is willing to take on challenges other surgeons walk away from and has the skills to pull it off. He has a reputation of helping those considered ‘inoperable’ by others. I’ve had a few surgeries at NY Presbyterian, and being a devout coward, go only to the superstars … Dr Oz for heart surgery, Dr Kato for the liver mess and most recently Dr Josh Sonett for some pesky little lung deals. For digestive diseases, NYP is organized around the disease, not the doctor’s specialty. The onc’s and surgeons are in the same dept., which is very good for patients.
I know of Kris’s Dr. Fong @ MSK by reputation and he is highly regarded also. As I mentioned to you, I think there is only one other surgeon in the US that does ex-vivo procedures besides Dr. Kato, which puts him in a very special category. One thing you can count on with Dr. Kato, is he will give you an honest opinion.
Good luck.
Derin, I’m really surprised you have not had monthly CA 19-9 tests, along with liver function panel, etc. For nearly the first year after my resection, I had lots of CA 19-9’s. You should be getting that one at least quarterly, along with an occasional CEA marker test. About the only reason to not prescribe the CA 19-9 is some patients with cc don’t have any meaningful response to it (I have a friend in that category)
Derin, your surgery was a real mess compared to mine. I had no drains, just got infections in three spots in the incision wounds. The chemo got in the way of healing and I ended up going to a wound care practice for about 14 months. I ended up with three really big hernias, which I’m not considering getting fixed. In spite of any post surgery problems, surgery is a great thing, if you qualify.
Diana, good luck and I’m expecting you to have a good outcome.
The surgery isn’t that bad, at least it wasn’t for me. I had six months of chemo right after surgery, and that was more unpleasant. Good luck with the upcoming surgery.
LeeAnn, I’m going through something very similar. I had a successful resection 4/2009 with clean margins, followed by six months of Gemzar. Blood tests were all unremarkable and normal through 8/2011, when I decided to use my standing order for blood tests. CA 19-9 and bili numbers were high, and have continued to be high (CA 19-9 highest was 160ish and total bili ~ 1.4).
The approach my onc has decided upon is to increase the frequency of PET/CT and followup visits to 4 months from six months. You should be aware that the CA 19-9 marker test is subject to some amount of random variation and is influenced by any inflammation or infection you may have. So far, all my PET/CT and CT’s have not shown any recurrence of cc. I’ve decided to just not worry too much about the blood tests, as long as the PET/CT do not light up. I’m putting myself in the hands of some pretty smart people and I just have to trust them.
BTW, a PET/CT is particularly good to find recurrence of cc, since active cancers growths illuminate green on the scan (areas the have significant glucose uptake). The blood tests are bothersome, though.
Good luck with the scans.
The next program, Thursday February 23 will focus on “Caregivers, with a special guest from Florida” Call in number is 610-664-4100 between 12:30 and 1:00 PM EST. I have often said cancer is almost harder on the blessed caregivers than the patients. This should be a very interesting topic.
The show’s benefit in Philadelphia last night was a great success and will ensure the show can stay on the air for another 13 weeks, with the contract being signed next week.
Jhagopoian, nice to hear you have stayed clean. I’ve had CT and PET/CT scans. Over the past year, mostly PET/CT. Glucose uptake causes cancerous area to light up or illuminate and is very useful in detecting recurrence of cc. A PET/CT combines most of the benefits of CT with the added cancer illumination of a PET. A CT only will have somewhat better resolution, however. The sharp eyed radiologists at NY Presbyterian have been able to see growths as small as 4 mm in my right lung. I’m having that little sucker removed 3/7/12 @ NY Presbyterian BC it grew to 9 mm as the lung surgeon’s take was if it grew, it needs to come out. These adventures are becoming all to frequent, however.
I live on the Eastern Shore, but had surgery at NY Presbyterian in NYC and all my onc followups are there also. Let us know where you live, and I’m sure someone will recommend an onc with cc experience. Mine is great, Abby Seigel at NY Presbyterian, but you may not want to travel to NY. BTW, in my opinion, you should only see an onc with extensive cc experience for followups. Too much at risk to do otherwise.
Good luck and welcome.
Cathy, good luck tomorrow!
