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Anyone waiting for liver transplant and diagnosed with liver cancer?

Posted by parrot53 @parrot53, Nov 8, 2022

Good Day All,
I am wondering if anyone is in a similar situation. I have cirrhosis with good liver function. I was diagnosed with HCC and the tumor was treated with ablation. It has not recurred, at least not yet. It is my understanding that there is a 70% chance there will be more cancer due to a Cirrhotic liver. I am currently status 7 on the transplant list for a liver as I need to wait the required six months to gain MELD score exception points for the HCC. I feel very fortunate to have this time as this has been going on for the last three years now. However, I am worried about the cancer coming back and also unsure about a transplant if it does not come back. Just wondering if any of you are in or have been in a similar situation and have some encouragement. Thanks for listening.

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fontanhccmom | @fontanhccmom | Jul 20 7:25am
In reply to @tomrennie "@fontanhccmom What preparations are required for both you and your son for the July 23rd transplant?..." + (show)
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@fontanhccmom What preparations are required for both you and your son for the July 23rd transplant? I am unfamiliar with the living liver donor process. Thank you.

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@tomrennie we both went through the very extensive evaluation process. CT, MRI, ECG, labs, stress echo.

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Turkey, Volunteer Mentor | @tomrennie | Jul 20 9:16am
In reply to @gigi32 "@tomrennie he’s been back twice for more tests so I’m thinking he probably will not be..." + (show)
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@tomrennie he’s been back twice for more tests so I’m thinking he probably will not be a match either. Thank you for asking. Trying to wait patiently until our next appt👍🏼

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@gigi32 Sorry to hear that. When is the next appointment?

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Turkey, Volunteer Mentor | @tomrennie | Jul 20 9:19am
In reply to @fontanhccmom "@tomrennie we both went through the very extensive evaluation process. CT, MRI, ECG, labs, stress echo." + (show)
Profile picture for fontanhccmom @fontanhccmom

@tomrennie we both went through the very extensive evaluation process. CT, MRI, ECG, labs, stress echo.

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@fontanhccmom Good luck with everything this week. How are you folks feeling physically? Emotionally?

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gigi32 | @gigi32 | Sep 6 7:30am

@tomrennie @colleenyoung just wanted to update. My husbands cancer came back in August. His AFP number jumped back into the 600 range. He is still listed and was just bumped up to being “on call” this last Friday. They added the exception points to his MELD number. He is having the SBRT radiation next week and then hopefully the new liver in the coming months. It is so hard to do the waiting as you all know but everything Mayo told us from day 1 has been almost spot on. Any one with any suggestions on what we do now that we are on call or how long it took you to get that new liver would be appreciated. Thank you!

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craigcraig | @craigcraig | Sep 6 8:32am
In reply to @gigi32 "@tomrennie @colleenyoung just wanted to update. My husbands cancer came back in August. His AFP number..." + (show)
Profile picture for gigi32 @gigi32

@tomrennie @colleenyoung just wanted to update. My husbands cancer came back in August. His AFP number jumped back into the 600 range. He is still listed and was just bumped up to being “on call” this last Friday. They added the exception points to his MELD number. He is having the SBRT radiation next week and then hopefully the new liver in the coming months. It is so hard to do the waiting as you all know but everything Mayo told us from day 1 has been almost spot on. Any one with any suggestions on what we do now that we are on call or how long it took you to get that new liver would be appreciated. Thank you!

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@gigi32 It sounds like it could be any time ? Hopefully not too long. Have your go bags packed. Your transpiration (getting there in 24 hrs) and lodging figured out. My case was very similar and Mayo said "months" but they found a liver for me in 18 days . Have heard others getting them sooner than expected. It could happen to you. Very best of luck. Prayers up.

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Turkey, Volunteer Mentor | @tomrennie | Sep 6 11:05am
In reply to @gigi32 "@tomrennie @colleenyoung just wanted to update. My husbands cancer came back in August. His AFP number..." + (show)
Profile picture for gigi32 @gigi32

@tomrennie @colleenyoung just wanted to update. My husbands cancer came back in August. His AFP number jumped back into the 600 range. He is still listed and was just bumped up to being “on call” this last Friday. They added the exception points to his MELD number. He is having the SBRT radiation next week and then hopefully the new liver in the coming months. It is so hard to do the waiting as you all know but everything Mayo told us from day 1 has been almost spot on. Any one with any suggestions on what we do now that we are on call or how long it took you to get that new liver would be appreciated. Thank you!

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@gigi32 It seems like the transplant is moving forward. There are others here like @craigcraig that can also help you prepare for it through their experiences. He gave some great advice. How are you folks feeling about everything?

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Colleen Young, Connect Director | @colleenyoung | 1 day ago
In reply to @gigi32 "@tomrennie @colleenyoung just wanted to update. My husbands cancer came back in August. His AFP number..." + (show)
Profile picture for gigi32 @gigi32

@tomrennie @colleenyoung just wanted to update. My husbands cancer came back in August. His AFP number jumped back into the 600 range. He is still listed and was just bumped up to being “on call” this last Friday. They added the exception points to his MELD number. He is having the SBRT radiation next week and then hopefully the new liver in the coming months. It is so hard to do the waiting as you all know but everything Mayo told us from day 1 has been almost spot on. Any one with any suggestions on what we do now that we are on call or how long it took you to get that new liver would be appreciated. Thank you!

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@gigi32, I appreciate the update. How is radiation treatment going?

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gigi32 | @gigi32 | 1 day ago

He has done really good with it! His last one is this afternoon. Thank you for asking.

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