kap
Forum Replies Created
-
Posts
-
Hi Katia,
My friend was not a candidate for Dr. Canady’s surgery, but they were very impressed with him and his kindness to them. He talked to them for 2 hours and explained many things that had not been explained to them before. I think the problem is that people wait until it’s too late to seek him out, and when the liver is totally involved, there is nothing left to work with. If the patient can see him before the cc has spread through the liver so much, there is a better opportunity for the surgery. My friend has been battlihg cc for 21 months, and he told her that chemo is what has kept her alive this long. She will continue with chemo as long as she can – she is a fighter. Good luck to you and your dad, whichever path you choose to take. There are many out there, and you just have to find what works for him. My prayers are with you as they are with all cc patients and their families and caregivers.
Kap
Well, my friend saw Dr. Canady, and she is not a candidate for his surgery. She has too many tumors in her liver, and there’s not enough healthy liver to work with. It’s probably going to be more of an option for someone who is newly diagnosed – she has been fighting this for 20 months and it has progressed too much. Not the news we hoped we’d hear so it’s back to the drawing board to look for more options. Good luck to you and your fiance, Sonja.
Certainly no offense taken, Sara. I know we’re all trying our best to help all cc patients, and it’s completely natural to question something that’s out of the ordinary like this. I’ll update late next week after she sees Dr. Canady and let you know what they found out.
Sonja, I don’t recognize the name Herceptin, but I don’t know all the drugs she has tried. I know that she has taken Sorafenib, 5FU, Gemzar and several others. You can check them out on her blog. She’s pretty much been on some type of chemo since she was diagnosed. Her problem is that she has allergic reactions to almost all of them. Chemo may have prolonged her life, but the quality has certainly suffered.
Sara, in response to your comments about Dr. Canady, he is in the Pittsburgh area at Monongohela Valley Hospital. I’d like to think of his approach as visionary, and at this point, my friend is about out of options. We’ll know next week if he is the answer, but she’s tried almost every chemo there is for this type of cancer over the past 20 months and is getting weaker by the day. He may be financially motivated by his invention, but who wouldn’t be proud of something they invented that might save lives? I just hope he’s the answer! There’s also a thread discussing Dr. Canady on cancercompass.com.
Good luck to all who are battling this horrendous cancer. It has been an emotional roller coaster the past 20 months, and this is just a good friend I’m watching suffer with it. May God bless all of you whose loved ones are affected – I hope a cure is right around the corner.
Sonja, I have been following this board closely as one of my best friends has been battling cc for 19 months and has tried various types of chemo and has participated in several clinical trials at M.D. Anderson (see Martin blog). Please view the video at http://www.curedoflivercancer.com as an option. I saw this a week ago, told her family about it and they emailed Dr. Canady. He called them the following day and asked for her records. Once he received them, he called again and said he would like to see her next week to run a 3D MRI to see if she is a candidate for his surgery. We are all so excited and praying that this is the answer for her. I would encourage anyone with cc to do the same. I have been studying and researching ever since she was diagnosed, and this is the most exciting thing I’ve seen.
I’m sorry to hear your father is in the hospital and in such pain. He seems to have been doing so well. I hope they figure out the source of the pain soon and he can return home. Tell him to keep up the good fight! I look forward to updates on your blog.
Hi Ann Marie,
You have certainly come to the right place to learn as much about this disease as you can. I think the most important thing you can do is to get second and third opinions and never give up. Resection is the only cure, but most people are not candidates by the time they are diagnosed. You can find out here what others have tried and learn from them. What works for one may not work for another, and it may take trial and error. But never give up hope! Tell your father you’ve found this site and that you are going to learn all you can to help him and that he should fight! Crying is normal because life will never be the same, but once you get over the initial shock, you will want to immerse yourself in research as all of us here have.Good luck to you and your family. Please keep us updated.
Kathy
Liz, I am so very sorry for the loss of your mother. 21 is very young to lose a parent, especially watching one waste away from this insidious type of cancer. We’re all in this fight together and are hoping for better outcomes in the future. By communicating with each other in this forum, we share the newest technologies with our stories, and one of these days we might find something that helps in the long run. Right now, there just isn’t a cure for CC except liver surgery which usually isn’t an option by the time the cancer is caught. All we can hope for is to extend the life of our loved one. But then you eventually have to weigh quality against quantity. After reading what you said about your mother’s healthy lifestyle, I can imagine how hard it was for her to go through chemo and allow the drugs into her body, and I’m sure she only did it for the rest of you so she might be around a little bit longer with you. It is good for you to share your experience with your mom, and you need something like this site to find others who can understand what you have gone through. Everyone here understands your frustrations and your grief. Just concentrate on the happy memories of your mom and offer help to others who reach out – that’s the best legacy you can give your mom.
Best of luck to you in the future!
KathyI’m so sorry to hear about your sister. 33 is way too young to have to fight this insidious disease. When you start reading the family blogs, you will see there are others out there who are also very young. My heart goes out to all of you. Marions was kind enough to post Dr. Jenkins’ info for me to give to my friend who is also battling cc. She is in the process of having her records sent to him to see if there is anything he can do for her. I would suggest that you call Julie and find out what the steps are to get your sister to him. We have heard that he is a miracle worker. Here is his info:
Dr. Roger Jenkins
Lahey Clinic
Burlington, Mass
(781) 744-2500
Julie Doyle
AdministratorThere is a web site for the Lahey clinic (http://www.lahey.org) where you will find more info on Dr. Jenkins and other phone numbers.
Good Luck,
kapI am so sorry for your loss, Kelly. Everyone on this site can relate to your grief and we feel your pain since we are all going through similar situations ourselves. Be happy that he died at home the way he wanted, with dignity, and let your memories get you through the hard days. Cancer is such a dreadful disease, and so little is known about cc. Hopefully what our families and friends are going through will pave the way to knowledge for treating it and hopefully curing it in the future.
Thank you so much for your response, Marion. My friend Pat is at MD Anderson today having a CT scan after 4 rounds of chemo. Depending on what they are told, I will certainly have them contact Dr. Lahey if there is any chance that the tumor has shrunk and she could have the surgery. I find this website invaluable – thanks to everyone for sharing their experiences.
Kap
I’ve heard of Dr. Jenkins before from this board, but I can’t remember where he is. Would someone be so kind to tell me where he is and how to get in touch with him? My friend has been told that she is not a candidate for resection, but after hearing these stories, I would like for her to consult with him. Thanks!
