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LOVE Dr Christopher Siegel, University Hospitals, Cleveland, OH. When the Cleveland Clinic expert recommended my brother seek hospice a coule of years ago, Dr. Siegel performed a very successful surgery and my brother was considered cancer-free up til recently. Very easy to speak with and understand, tops in his field.January 8, 2011 at 5:12 am in reply to: When we lose a moderator to the disease of Cholangiocarcinoma, we lose #46428
So many people give so much on this site and each time one passes it is a huge loss to their family and to us. I was so sad when I heard that Kris had passed because she was so brave and she, Jeff and you, Marion, were so much help to me and my brother when he was diagnosed. This site was my constant companion for a while. I learned so much when it was so important. Marion, I know you have been talking with my brother (Mr J) and I’m so thankful for all the guidance and support you give. There is a special place for wonderful people like you.
Hi, I wanted to give an update (I’m Mr J’s sister)..all of the problems Mr J was having were finally figured out. Unfortunately, he has a mass that is constricting the colon. He had surgery Monday to put a colostomy in and this should alleviate some of his issues. The doctor saw some smaller masses as well in his lower abdomen and took samples from several to help give better pathology reports. At this point, he will be returning to the oncologist to find out what the next step is. Keeping our fingers crossed that the docs have some good options. Please send good thoughts his way! Thanks for all your suggestions and support.
I was so sad to see that Jeff has passed, words don’t really come to mind. I haven’t been on the boards in a long time now, so just found out. I was thinking about my brother today and it brought to mind that I wanted to see how everyone was doing. Jeff was one of the first to welcome me to the boards back in Jan 08 when I was desperately seeking info to help my brother. So many people gave comfort and support, but Jeff was so special. What I received from these boards was a tremendous help in our fight against this awful cancer and God Bless all of you. Jeff was a rare person and I’m sure he’s up there still watching these boards and all of you. My sympathies to his family. If he was so special to all of us, I imagine he was the best husband and father that ever was and their loss will be great.
My brother actually switched from the Clinic to University Hospitals in Feb 2008, and we are very happy that he did. While I’m sure the doctor he was seeing at the Clinic was very accomplished and knowledgeable, we found him to be too accepting of the finality of the disease. He was “willing” to procede with a surgical effort, but was very clear that he did not expect it to be successful, and that there was little chance of fighting this disease. We found a doctor at University who never thought twice about doing the surgery, Dr Christopher Siegel, chief of the liver transplant team. Surgery went well, and after a course of chemo/radiation, today, one year later, my brother is considered “cancer free” after his last scan. The statistics still aren’t great for the future, but if we hadn’t switched he might not have had the same outcome. I think if he had had a younger doctor at the Clinic, things would have been better, so if your doctors are younger, that’s great. Just make sure you are comfortable with the team….that means a lot. We weren’t comfortable at the clinic, but that was just our experience.
Best wishes…if you would like to talk offline, send me an e-mail to email@example.com and I’ll give you a call. I’m happy to share any info I can.
Sue, I’m so glad to hear your happy news! I haven’t been on the boards so it’s been a relief to see some familiar people having good news. It gives me hope for my brother and all of you.
Hi Kris, I’m so relieved for you! I haven’t been on the boards recently, good to see happy news for you.
Great news! It does indeed give us all hope when someone is succeeding at beating this!
I would like to send my prayers for you both. Last year, Kris was a wonderful support to me when my brother was diagnosed and going through treatment. I could feel what a wonderful and strong spirit Kris has and I hope that she has a quick recovery from surgery so she can fight this thing full force.
Nice to hear from both of you and hope you are doing ok….we do know that the chances of recurrence are high and that the cancer-free state is “for now”. My brother already has the next 3 month scan scheduled. I was actually surprised that the oncologist would use those particular words “cancer free.” Thanks for the prayers! they worked!
this is late, because I haven’t been on in a while. Great news! I’m so happy for you!
I’m very sorry to hear about your brother. My brother, too, has been diagnosed. You should make sure you are all comfortable with the doctors you see. My brother was told by a very, very respected doctor at the Cleveland Clinic that there wasn’t much hope for him. We went to University Hospital and had a much different experience. He had a liver and duct resection and went through 6 weeks of chemo-radiation and has been declared “cancer-free” at this time. The likelihood of the cancer coming back may be big, but for now things are looking good. I’m so happy we pursued a second opinion.
Good luck to you; you can find so much information on this site. I found it to be a Godsend.April 18, 2008 at 1:43 am in reply to: Found Out About 4 Weeks Ago/Portal Vein Embolization? #19859
sorry you had reason to find this board, but it is a wonderful place for support and information. What were your symptoms that led you to the doctors? My brother was diagnosed at the beginning of the year after same multitude of tests. Only true diagnosis came during surgery where they resected part of his liver, gall bladder and ducts. Before that, the first doctor gave us dismal prognosis although he was willing to consider surgery. We went to a different doctor, who went boom, boom, boom with some tests and had him in surgery within a short time. Big surgery but now he’s got only tiny cancer cells left and is undergoing a 6 week chemo-radiation and the doctors seem pretty optimistic.
My brother was very, very sick before they put a tube in to help liver drain better. We were really scared. After the liver started getting cleared, he did fine and was good for the surgery and came through with flying colors.
Keep praying and keep researching. Knowing as much as you can is really important. If you don’t feel able to (any info you find on this dreadful cancer is tough to read), have someone who’s close to you do the research and planning.
Hi DCP….I don’t know what the possibility is for your Mom to come to Cleveland for treatment, but I’m in Cleveland and my brother has been diagnosed with CC so I can share with you our experiences. First he went to the Cleveland Clinic but weren’t thrilled with them, although the doctor was very experienced with CC. He just wasn’t very aggressive in his treatment suggestions. We moved to Dr Christopher Siegel at University Hospitals and really liked him and his staff.
The staff was very proactive about getting test results and taking a full look at my brother’s situation. In the end, he was a candidate for surgery and came through very well and is headed for some chemo radiation to hopefully finish the bad cells off…we were so glad that we took the extra step to get a second opinion. I would highly recommend Dr Siegel and his staff. Top notch and communicated extremely well with us.
great news! just keep kicking that cc back down!