ashley
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If the procedures you are questioning are done at the hospital your wife is working with now, their financial aid department should be able to tell you what medicare covers ( I would hope)?
While my mom has not dealth with resection, after being on this discussion board for several months and reading what others have submitted, it seems like scans are done much more frequently than on an annual basis. I think a scan every few months is normal with any cancer, not just this one.
Best of luck with the resection,
AshleyKristi,
My deepest sympathy to you and your family. I’m so sorry to hear about your precious sister.
You are all in my prayers,
AshleyHi Raye,
I’ve been thinking of you and your daughter and smiling! I will have to email you when I get home from the Mayo next week. Thank YOU for sharing your story with me several monthly ago via email and phone calls – you helped prepare us well!
I’ll be in touch,
AshleyI have some good news!! My mother was able to have her transplant surgery today at the Mayo in Rochester with my brother as the live donor. Both surgeries went well per our discussions with the amazing doctors ( Dr. Heimbach and Rosen) that made this miracle happen. My mom will have a long road to recovery with many ups and downs I am sure, but we are headed in the right direction.
Of course, I didnt go through the surgeries myself, but I have to say that even compared to the actual transplant surgery, it was the staging surgery yesterday (to see if the cancer spread) that was the most emotional part of this entire journey for me. We waited almost 8 hours for my mom to get into the surgery and get results that today would even happen. If you would like to follow any of the updates my mom has a carepage: http://www.carepages.com ( search: joanjackson)
I wish you all a Happy thanksgiving and thank you all for your support since I joined here back in July. I think about each and every one of you on this board either fighting this monster disease physically yourself or the caregivers that have the emotional battle. I just hope someday there will be a cure. Keep fighting – it’s all we can do.
AshleyHI Heather,
I’m very sorry to hear about your sister. Since you are at Duke – microsphere treatment comes to mind. I don’t know all details about it, but Wake Radiology ( Dr. Kennedy) may be an option she can look into. They are in Cary, NC.thinking of you,
ashleyunfortunately all I do know about medicare is that it would NOT pay the cost of a transplant for CC. They consider the transplant experimental. Luckily my mother has another full insurance policy that will pick up the bill if the surgery takes place next week. I believe Medicare has paid for everything prior to transplant, including chemo and radiation, etc.
Best of luck.
AshleyWelcome to the site and I’m very sorry to hear about your wife. It may help if you can provide us with more information ( tumor size, type ( Klatskin?), etc. ) and we may be able to provide you with more information.
My mother is potentially in the process to receive a liver transplant for CC. The transplant protocol follows strict guidelines, mainly tumor must be under a certain size and has not metasticized to other areas. I encourage you to look into this avenue first. There are only a small number of hospitals in the US that do this. IF ( big IF) successful the long term survival with transplant is generally better than resection.
You can search under this site for Mayo protocol and I believe Wayne Parsons had a great summary of the protocol.
Additionally, if it has not already been done, please do not have them biopsy your wife’s tumor with a needle. I now know of two individuals who were denied transplant because the CC had seeded at the site of the biopsy needle. Many doctors have not dealt with this cancer enough to know this. CC is generally diagnosed through a combination of factors, ie: visible tumor on a CT scan, CA 19-9 blood number over 100 and/or FISH staining on the ERCP brushings for poly and trisomy mutations.
I know of one young man going for a transplant this month at a Chicago hospital for CC. ( I think you are in Illinois?) If you would like more information ( his doctors, hospital, etc) please contact me at ajackson0@snet.net and I will try to pass along all of the info that I can.
Lastly, my advice is to get MANY opinions prior to making your decisions. This is not an everyday cancer and unfortunately for the victims and caregivers that means that you have to really search for someone experienced to treat this disease. Where one doctor may resect, another may not.
My best to you and your wife.
AshleyHi Kris,
I understand what your psychologist is saying – but please don’t be too hard on yourself!!! I disagree that you are wasting time sitting around.. how about that wonderful vacation you just took! I think you are a huge inspiration to many on this board because of your fighting spirit. Of course if this means the red coat or ANOTHER vacation by all means – go for it!
AshleyHello.. and welcome
I ‘m reading these recent posts and it makes me wonder why an external drain cannot be internalized? My mom’s first hospital had her with a bile bag ( leaked also) and it was internalized as soon as she switched hospitals. Granted she still got infection, but her spirits perked right up not having to carry it around outside her body.I’m wondering if your doctors are discussing internalizing it?
Ashley
