Why didn’t I come here EIGHT months ago??!
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Dear Mark – This is a difficult time, but you are not alone. We are here. We know what you are going through. We pray for a good result from USC for your wife. On a personal note, my husband felt great on chemo (if that is an option for you). Not everyone feels great on the chemo, but my husband felt good – felt like he had more energy and less pain. Some people get sick, but Randy didn’t. I hope the doctors offer you some good news and treatment options. There are a couple of trials out there if they don’t recommend any of the standard treatments. We considered one at Loma Linda, but it was not exclusive to them. Our best thoughts are with you. Blessings, Susan
Dear Mark, you are making good decisions and USC is excellent. Let’s hope for some encourageing dialog today with the doctors. Please keep us posted.
Hi Mark,
Welcome to the site. Sorry that you had to find us all and I’m sorry also to hear about your wife. But I am glad that you have joined us all as you will get a load of support from everyone here. Feel free to ask any and all questions that you will have and we will all do what we can to help in answering them.
I hope that you get some good news today from your meeting with Dr El-Khoueiry, and please let us know how that goes.
My best wishes to you and your wife,
Gavin
Lainy wrote:Dear Mark, we are glad to have you where ever you post. Welcome to our wonderful family and I am so sorry about your wife. Has the doctor explained everything to you as I don’t understand why he did not give you options. There are always options. If you are not satisfied you have the right to go for a second opinion and a 3rd and a 4th. I really don’t want your post to get lost as I know you will get many more answers. If you go to the First page and post under Introductions more people will see your post. What is the doctor telling you to do at this point? Please keep us posted and you have come to the right place, we all care!We have tried a clinical trial in a pill form Pazopanib for kidney cancer. Dr El said this would be the best to start with due to my wife’s liver.
I understand USC is very good, but the tumor is a little bigger than about 5 months ago, I do not want to just do a trial and loose a lot of valuable time in treatment.
We are being seen by Dr. El-K.
What seems to be the problem is her biliary drains, they do not seem to be working right. In a few hours, the are going to check and see what is going on with them.Dr El is going to talk to us about another treatment today, but have not seen the ducklings from USC. the fellows, resident so on and so on.
Hi Mark….has your wife consulted with Dr. Lenz or, with Dr. Anthony B. El-Khoueiry, both at USC?
All my best wishes,
MarionDear Mark, we are glad to have you where ever you post. Welcome to our wonderful family and I am so sorry about your wife. Has the doctor explained everything to you as I don’t understand why he did not give you options. There are always options. If you are not satisfied you have the right to go for a second opinion and a 3rd and a 4th. I really don’t want your post to get lost as I know you will get many more answers. If you go to the First page and post under Introductions more people will see your post. What is the doctor telling you to do at this point? Please keep us posted and you have come to the right place, we all care!
My fist post, so I do not know where to place this one, also I going to write the very quick version…
Wife is 5, has had since age 13, it looks like she also had primary sclerosis cholangitis for many years too. Had a protocolectomy with internal J pouch.
Turkey Day last year, told that she had CC. USC put 2 biliary drains due to high bilirubin levels & the trial required a steady levels. She was on Pazopanib which was hoped to work for a patient with a compromised liver.
It has not worked, the tumor has grown a little more.
So here we are… the cancer has moved outside the liver, can not have a transplant. No treatment that I have of for the wife, or am I wrong?Sorry for the manic post, I have to think of option B, another trial at USC?
What are other options?
Mark
Welcome Jenny. I cannot comment on liver transplant, but I can welcome you to our family and let you know that we will do all we can to provide support, encouragement, and a place for you to vent. Our thoughts and prayers are with you and your husband. I hope the liver transplant donor is a perfect match (as perfect as they get) and that you have a wonderful experience. Blessings, Susan
Hello Jenny. I would also like to extend my welcome to you. Anytime is a good time to join us and I m thrilled to see you here.
Jenny, in addition to Cathy who will be a great resource to you, we also have a few transplant blogs. One is ScottG, who is in the process of being evaluated and accepted; the other is jennej who’s husband is doing fine post transplant, and Kim Kircher who’s husband received a transplant 2 years ago, and bbfranson’s husband also had received a liver a few years ago. You may find the blog by scrolling down to External links: blogs.
Again, I am thrilled to see you hear and please, continue to share with us.
All my best wishes,
MarionWow Jenny, I am a CC survivor due to a liver transplant!! I had 2 “fake calls” before I got the real thing. I will be transplanted 2 years May 24!! I had mine at Barnes- Jewish in St. Louis MO. If you would love to read an amazing story about it go to thetelegraph.com under christmas miracle.
I will be celebrating my first vacation since my diagnosis this year buy heading to your great state for Sturgis!! (Still have issues about motorcycling and my new liver)
I have found that cancer does rule your life and that is ok. At first it is the fight and then when you get to the survivor stage there is oh my gosh what just happen and finally the pay it forward by sharing your hope. It can’t help but define who you are.
Please email me if I can help and give you some info about post transplant. I am down to minimal immune-suppresant meds. I went from 38 pills to 12!!!
Good luck and lots of prayers-Cathy jrdunnagan@gmail.comHi Jenny and welcome back! This much I can tell you, you are in the best of hands at Mayo and that is most of the battle. I am crossing everything I own in hopes this 3rd liver is a match! One other good thing is your husband has his age on his side. Take some deep breaths and know that you are now among friends who care. Don’t be a stranger now and please keep us posted.
Hi Jenny,
Welcome to the site. Sorry that you had to find us all but I am glad that you have joined us. And it is nice to meet you too! You have have certainly come to the right place to find out all you can about CC and meet new friends and prepare to be lifted up! I know that pthers will also be along soon to welcome you.
Feel free to come here as much as you want to let off some steam, have a vent or ask any questions at all that you may have and we will all do what we can to help in answering them. I was my dads carer during his fight with CC and I came her back in 2008 after his diagnosis, and it was the best thing that I could do at the time. Everyone helped me so much and I know that all the great members here will do the same for you.
How is your husband doing on the chemo and what chemo is he on? I know what you mean about cancer being a major player right now and I guess that we can all relate to that. That is good that you husband is being treated at the Mayo clinic and also that a liver transplant is an option.
That is great that you have joined us all once again and I look forward to hearing a lot more from you.
My best wishes to you and your husband,
Gavin
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