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.
Re: When we lose a moderator to the disease of Cholangiocarcinoma, we lose (18 replies, posted in In Remembrance)
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.
I will be thinking about and praying for your family. Jeff has been a huge inspiration to me, and really helped me when my brother was diagnosed. This website has so much of Jeff in it and I credit it with saving my brother's life (and probably many more!). Without inspiration and information, we might have accepted the initial diagnosis and directions that the medical community was giving us...instead we gained hope and today is very different and brighter than it could have been. I hope that knowing he's loved and appreciated by so many brings some peace to Jeff and his family.
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 firstname.lastname@example.org 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.
My brother recently had an MRI to see if everything was "OK" (he's having digestive and discomfort issues) and the doctor said he is still clean, no sign of the cancer. His digestive issues are more likely to be from insufficient enzymes and scar tissue and treatable, thank goodness. I wanted to post this because when I read the good news messages, it does make me feel more optimistic about the future for all of you who suffer with this. Good health to all of you! I know my brother is still living under that dark cloud where he believes the cancer is lurking, but he's starting to believe at times that there is a future for him! So, YEA!
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!
Hi all, I haven't posted in quite some time. After my brother's successful resection early this year he felt really lousy for a long time but had 6 weeks of chemo/radiation. He had a scan a couple weeks ago and the doctors have declared him cancer-free!!! He still has pain and I'm not sure why, but think it's more to do with his body being all switched around as well as his RA and Osteoporosis. He's looking good and I'm so happy for him and for all of us. Thank goodness we didn't stick with the doctor who said his next step was hospice!!!! Note to all-get a second or third opinion. If we hadn't, my brother might not be with us today. God Bless all of you who struggle with this. Candy Z
this is late, because I haven't been on in a while. Great news! I'm so happy for you!
Re: New to site, my brother was recently diagosised (6 replies, posted in Introductions!)
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.
Re: Found Out About 4 Weeks Ago/Portal Vein Embolization? (5 replies, posted in Introductions!)
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!
thank you everyone for the great feedback! as always, I find these boards so filled with support and hope that it has helped immensely in so many ways.
Re: Surgery unsuccessful :( (15 replies, posted in Surgery, Resection & Transplant Treatment Options)
my prayers are with you, I wish the news was better for you. Take care of yourself and focus on healing from surgery. Do you have help?
does anyone have experience or input on post-surgical treatment with xeloda used as a way to enhance radiation treatments? side effects? results? is it worth it? your opinions would be greatly appreciated!
Mary, great news about your husband. I know a bit how it feels when you suddenly don't have the tests that you worry about but that give you some sense of control and comfort...I had a bout of Ovarian cancer and they were watching me closely after they took one side of my tubes and an ovary but then I had another tumor and they did a full hysterectomy. Suddenly they determined that they had removed any potential problems and I no longer needed tests regularly. I wanted those tests! but it's been almost 3 years and all is ok.
Please tell your daughter to hang in there...I had 2 miscarriages and was feeling pretty pessimistic about the chances of making it through a pregnancy, and then had my twins without any problems at all. It's not for everyone, but I'm a gardener and it helped me to plant a rosebush in memory of my losses. I believe someone up there had decided the time wasn't right and wanted me to wait for the twins..
Re: Green light on surgery! (15 replies, posted in Surgery, Resection & Transplant Treatment Options)
Lisa, I'm thinking of you and wishing you a successful surgery and speedy recovery!
Kris & Sue,
such great news! time to put the tests aside and live your lives! have fun!
Re: Green light on surgery! (15 replies, posted in Surgery, Resection & Transplant Treatment Options)
good luck with your surgery...passing on some good news, my brother just had his surgery Tuesday and I think it's the exact same surgery you're going to have. He's doing beautifully, came through it very well and is now getting bored in the hospital. Was up next day and didn't really have much pain. Could have been the heavy drugs, too, though (ask for Dilaudid). Probably will be sent home in another day or so.
So, hoping your surgery is just as trouble-free and you're on the road to healthy days!