jim-wilde
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The theme for the Christmas show on Thurs. 12/22 @ 12:30 PM, where Kim and Denise will be sharing cancer miracle stories … don’t want to miss that one. One guest will be a young boy (in studio with his Mom) and another will be a regular contributor (and cc patient) to this board. It should be another wonderful program. Thank you everyone for your support!
So sorry you had to find us. I was treated at NY Presbyterian several years ago with a resection done by Dr Tomoaki Kato, who was the only hepatic/biliary surgeon who would have taken me as a patient, due to a number of risk issues. I would suggest you get a treatment plan in place promptly, as time is not your friend here. I would also put convenience way down on the list of priorities, since there aren’t that many doctors/hospitals with significant CC experience, because of its rarity. I live on the Eastern Shore of MD, nowhere near NYC, but don’t regret my choice for a minute. Surgery (transplant or resection) are considered the only ‘cures’. I have nothing but good things to say about Dr Kato and NY Presbyterian, but you need to make your own choices. I have posted complete contact info for Dr Kato ( see the link under my signature). I don’t think you would be disappointed if you get an opinion from Dr Kato.
For anyone interested in supporting the program financially, it’s incorporated as a NJ non-profit and contributions may be sent to:
Let’s Talk Cancer
PO Box 73
Sewell NJ. 08080Checks should be made payable to Let’s Talk Cancer.
Life has a lot of seemingly inexplicable mysteries. A girl that grew up across the street from us moved to PA and married. Her husband died of cc within months of my own cc diagnosis. She was aware of how rare cc is (approx. 2000 new cases per year in the US) and she was just floored when she learned of my diagnosis. There just isn’t any way to explain, any more than two slot machines across the aisle from one another having jackpot payouts within 15 minutes of each other, with very high odds against either having the big payout. So far, I’ve yet to see any carefully written treatise detailing the specific causal factors associated with cc, but have seen lots of speculation.
This week’s show theme is “Things not to Say to a Cancer Patient” and will air on 12/15 @ 12:30 PM. For any of you inclined to call in, the number is 610-664-4100. The show has listeners across the country and at least one I know in Peru!!
Missy, I know of you through my friendship with Kim, and was so saddened to hear of Kevin’s passing. Words are just not adequate at times like this. I saw the picture you put up on FB of three of your handsome youngsters. Very special indeed. And you are a very special young lady. Bless you.
12/8 show’s theme is diagnosis and prevention. The following is a repeat of how to listen from anywhere there’s internet:
Listen to Let’s Talk Cancer with Kim and Denise over the internet from anywhere
1. Go to http://www.wwdbam.com/
2. If it’s 12:30 PM, you may listen live by clicking on “listen now” just below the ON AIR sign OR
3. Scroll down to Thursday programming and Let’s Talk Cancer
4. You may select the ‘>’ to listen or download to download and listen at any time convenient to you.. Download is available about 6 to 8 hours after each live broadcast.The show airs every Thursday at 12:30 PM. The Xmas show will feature a guest who’s a regular Cholangiocarcinoma.org contributor!
I had three stents placed a month prior to a resection. They all disappeared following the surgery. That was in April of 2009. So, clearly stent placement is not a sign of giving up. In my case, it was to get bilirubin levels to an acceptable range prior to surgery. They also caused the awful itching to go away. Both effects were nice indeed!
peony wrote:He is on the coumadin to thin his blood due to the effects of the avastin. He takes it daily and his INR is also checked daily while on chemo.
It’s usually 1.5. He does have nose bleeds often.. His blood pressure is normal.Peony, I have been a cardiac patient for over ten years (I had an emergency CABG [by pass] and mitral valve repair 5/2001) and I know coumadin is a last resort blood thinner, with a lot of potentially dangerous effects. I also have cc. I would suggest having your husband evaluated by a really good cardiologist.
I had a local cardiologist recently suggest coumadin might be appropriate for me for stroke prevention. This cardiologist knows I am unwilling to make any cardio med changes without my dear Dr Sun Hi Lee from NY Presbyterian sprinkling some holy water on the idea. So far, she has rejected several local brainstorms, such as Plavix, etc. and explained why in detail. Dr. Lee has kept me in decent shape for over ten years with 35% of my heart muscle gone and I trust her judgment in cardiac matter without question. She also acted as our “tour guide” in getting the cc diagnosis nailed and surgery lined up.
A good cardiologist could also find out why your husband’s heart rate is so elevated. I won’t even hazard a guess on that one. I wish you well in getting the best possible care for your husband.
Kris, glad you’re feeling a little better. I’m also glad you got to hear Kim’s first program. She’s a little girl, but has the heart of a lion. She’s decided to dedicate her life to cancer patients and the radio program gives her an effective way to spread her positive attitude and her way of dealing with a potentially crushing illness. I’ve learned a few things from her!
I hope the blood deal gets straightened out pronto. You’ve had to deal with too many bumps in the road.
The first program aired today and was very well done, had a few callers, and I think will be very successful over time. Anyone interested in hearing the show can go to the station website < http://www.wwdbam.com/ >, scroll down to Let’s Talk Cancer, and select ‘download’. The download format is mp3, so almost any media player software will play it. The show will air every Thursday at 12::30 PM. I think Kim has hit a home run with this!
There are a number of regular posters from this website who were listening today or whom have downloaded the program! The Cholangiocarinoma Foundation even got a mention when one of the site members called in, since that’s how many of us have ‘met’.
