Adventure started in 2009, hello all –
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Kim, we live in Ocean Pines and have been here for the past eight years. We love it here, especially the quiet time of now through Memorial Day. Pretty soon the winter diving ducks will show up and entertain us through the cold weather. So sorry to see CC took your mother recently.
marions, I was blessed to have some very special doctors caring for me, especially Dr Lee, the cardiologist. I don’t see her all that often, but she’s always been there for me. She said after the surgery last year that someone was watching over me. I learned after the surgery from the OC, that no one else in the Digestive Diseases surgery group at NY Presbyterian other than Dr Kato would have taken me as a patient and he had only been at NY Presbyterian for six months when I encountered him. The more I learn, the more I realize how few Dr Kato’s there are in the world!
Congratulations Jim, what a great outcome to your ordeal.
I’m waving to you from just across the Bay Bridge in Annapolis – where on the shore are you? My husband commutes to Chestertown each day, he loves the drive and what a great little town.
Jim…I also would like to welcome you to our site. Congratulations on being in the right place at the right time regarding the detection and consequent treatments of this cancer. You are in good hands with your follow-up care. I hope for you and your wife to be able to relax and enjoy the calm after the storm.
Best wishes,
MarionMargaret, so sorry to hear of Tom’s recurrence. This CC is insidious and truly nasty. It sounds like you’ve been able to stay pretty positive through the whole mess.
I wish you all the best. Bless you.
Jim
Jim: welcome to the site that no one really wants to join. My husband was diagnosed with CC in March 2008, had 3/4’s of his liver removed. His liver did regenerate, but about 18 months later presented with Jaundice. New tumor, inoperable. Treated with radiation and chemo. External Drain tube/bag put in to lower bili level. Now has 5 new tumors and a mass in the pelvic area. Bili currently climbing, up to 22 at last blood work. Started IV chemo and now on hold because of low blood counts. What a roller coaster ride we have been on the past almost 3 years.
Tom had been on cholesterol lowering drugs prior to CC….
Don’t know for certain what we will be hit with next, but planning for the worst, expecting the best.
Here’s to hoping you have clean scans for a long time to come!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Patty, no one has suggested Zocor had any role in the development of CC, and in fact, the OC and cardiologist at NY Presbyterian who re-prescribed it following chemo both were in contact before and after the chemo protocol was completed. The dosage now is way lower however @ 5 mg/day, since my liver never regenerated. It’s 50% size, working just fine, but we don’t want to stress it. By the way, the OC I see at Presbyterian, specializes solely in digestive diseases, nothing else and is a very sharp lady (as is my cardiologist).
One thing to keep in mind about CC is there is very little useful clinical data, largely because it’s so uncommon (< 2% of all liver cancers). Because millions of people are taking Zocor, there's a pretty good chance of lots of CC sufferers taking it. Even the chemo agent Gemzar, routinely used for CC patients, has little data showing it's effectiveness. Jim
Jim,
Thanks for joining us. After reading of your experience I do have a question– was it ever suggested to you by any doctor or do you feel that your developing cc was related to taking Zocor? I ask because my mother also took Zocor.
Patty
Lainy, thank you for your kind words. The only thing I fear with this pernicious disease is that it will return. I’m not sure how one deals with that, but I have to be very grateful for what I have now. Your signature “ATTITUDE is EVERYTHING!” says it all.
Hi Jim, that is a great story and here you are! Glad you found us. I agree with you that “us wives” are pretty special! We are so happy that you are doing so well and welcome your input. It sounds like you landed in the best of hands and that’s is how to win the battle. Keep up the great news, we love it!
Let me begin stating I am very lucky to be here. In January of 2009, a cardiologist I’ve been seeing infrequently saw a slight change upward in liver function blood test results. She had me stop taking Zocor and retake the blood test, with same result. The cardiologist (in NYC area) told me to see a local gastroenterologist (in Eastern Maryland). Had a CT and ultrasound, which lead to the need for an ERCP. The local doctor called a colleague he trusted in Baltimore to try to set up test, but he was on vacation. We then called the cardiologist (at NY Presbyterian). Long story short, this began on a Friday, and I had the ERCP the following Wednesday at NY Presbyterian. The test confirmed CC, with full extent of involvement not exactly known. The doctor who did the ERCP, Dr Peter Stevens, had a single choice of surgeons, Dr. T. Kato, to perform a left hepatic lobe resection.
I had the procedure done April 2009, with 50% of the liver being removed. Because of a number of factors (age, cardiac condition being the most significant), my cardiologist had to do some serious lobbying with Dr. Kato. As fate would have it, I had two VT (tachycardia) events during the surgery, and was lucky enough to have a former cardiac anesthesiologist as one of the surgical team. This was survived without permanent damage, and I was wide awake the next AM when Dr. Kato came to visit. Most patients are kept under anesthesia for a full day or more, but I did well enough to come off much sooner. The pathology report showed clear margins and Dr Kato recommended no further treatment. The cardiologist (our wonderful pathfinder through all of this) insisted on me seeing an oncologist. The oncologist read the path report a little differently than the surgeon: very aggressive tissue removed. After the surgeon met with the oncologist, they agreed chemo should be considered.
I had six months of chem (Gemzar) beginning in June 2009, and have had a number of oncology followups at NY Presbyterian. So far, I’ve been clean of any hot spots.
This whole deal has been at least as hard on my dear wife as it has on me.
I often think about the series of chance events that lead me to NY Presbyterian. For me, I think another choice probably would not have had the same outcome. I hope this disease get wrestled to the ground soon. It’s a truly malicious illness.
I want to make myself available to share my experiences in whatever way may be helpful to others.
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