"Hi Dr. Schiano,
I hope you and your family had a good Thanksgiving.
I met with my lead oncologist, Dr. Pippa Newell, recently. She spoke very highly of you.
My latest AFP, taken 11/21/2013 was 9.5, virtually the same as my 9/2/2..."
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likes this quote: "Be humble you are made of earth, Be noble you are made of stars "
About Me: Male, Portland, OR, member since Jul 2011
UPDATE 9/23/2014 - Got "the call" and received my new liver on August 23, 2014.
Surgery took 5 hours and went very well. 2 days in ICU and then into transplant recovery u ... [More] nit. Released to go home on August 29th. Feeling better every day and hope to return to work (at least part time) next week. I have been truly blessed indeed.
Thank you to all the amazing people here who have been so supportive and helpful - you are the best !!!! And of course a special shout out to Hector !!! You continue to be a role model and hero.
It's official !!! SVR confirmed 8-23-2013, 48 weeks was a long haul but the end result was worth it !
Completed triple treatment 2/22/2013
3/26/2014 - Still virus free and all side effects of treatment seem to be gone.
Stage 4 Grade B Cirrohotic
Diagnosed with HCC 3/27/2013 - single 4cm tumor
AFP reached a high of 281 in May, 2013
Referred for liver transplant evaluation May 2013
1st DEB-TACE Treatment completed on May 8th
TRANSPLANT DECLINED (not listed) 5-10-2013
Possible Re-Eval pending results of 1st DEB-TACE In 6 Months
5/6/2013 AFP = 281
5/22/2013 AFP = 54.7
7/1/2013 AFP = 106
9/2/2013 AFP = 11
11/21/2013 AFP = 9.5
2nd TACE Treatment July 19, 2013 - largely ineffective - scheduled for gall bladder removal on August 6th and also RF ablation or ethanol injections at the same time. We are hoping this will knock it down for a while, hopefully a long while.
Gall Bladder removed 8/2/2013. This was followed by my first RF ablation, and then by ethanol injections. Surgeons seem pleased with results, but of course it is way too early to tell.
9/17/2013 - First AFP after GB removal and RF ablation and ethanol injections is down to 11.5 - this is good news !
Also my AST is 36 and ALT is 48 - record lows, lowest in decades, and....
" MRI shows no areas of viable tumor and all veins are patent (no tumor thrombus).", this from my surgical oncologist, Dr. Pippa Newell !
Of course, what happens next will be equally important - will the AFP stay down, will the tumor stay gone. But I am grateful for this good news right now.
11/27/2013 UPDATE:
AFP = 9.5
Bilirubin and ALT rising from previous values, everything else pretty good -
Evaluation of latest imaging shows no sign of original tumor.
Possible trans plant re-evaluation Feb/March 2014
Update March 26, 2014 : February Labs remain good AFP still at 9.5. New 1cm growth detected in right lobe (original tumor in Left lobe). Oncology team believes it benign.
They also propose I be reevaluated for transplant and OHSU has agreed. This will occur the middle of April.
If I can get through this with just a fraction of the grace, dignity, and courage that HectorSF has shown to so many of us for so long I will be satisfied.
On the fence about treating ?
Don't delay - be proactive - stay proactive !
Seriously folks, I delayed treatment and look where I am now...
[Less]
Surgery took 5 hours and went very well. 2 days in ICU and then into transplant recovery u ... [More] nit. Released to go home on August 29th. Feeling better every day and hope to return to work (at least part time) next week. I have been truly blessed indeed.
Thank you to all the amazing people here who have been so supportive and helpful - you are the best !!!! And of course a special shout out to Hector !!! You continue to be a role model and hero.
It's official !!! SVR confirmed 8-23-2013, 48 weeks was a long haul but the end result was worth it !
Completed triple treatment 2/22/2013
3/26/2014 - Still virus free and all side effects of treatment seem to be gone.
Stage 4 Grade B Cirrohotic
Diagnosed with HCC 3/27/2013 - single 4cm tumor
AFP reached a high of 281 in May, 2013
Referred for liver transplant evaluation May 2013
1st DEB-TACE Treatment completed on May 8th
TRANSPLANT DECLINED (not listed) 5-10-2013
Possible Re-Eval pending results of 1st DEB-TACE In 6 Months
5/6/2013 AFP = 281
5/22/2013 AFP = 54.7
7/1/2013 AFP = 106
9/2/2013 AFP = 11
11/21/2013 AFP = 9.5
2nd TACE Treatment July 19, 2013 - largely ineffective - scheduled for gall bladder removal on August 6th and also RF ablation or ethanol injections at the same time. We are hoping this will knock it down for a while, hopefully a long while.
Gall Bladder removed 8/2/2013. This was followed by my first RF ablation, and then by ethanol injections. Surgeons seem pleased with results, but of course it is way too early to tell.
9/17/2013 - First AFP after GB removal and RF ablation and ethanol injections is down to 11.5 - this is good news !
Also my AST is 36 and ALT is 48 - record lows, lowest in decades, and....
" MRI shows no areas of viable tumor and all veins are patent (no tumor thrombus).", this from my surgical oncologist, Dr. Pippa Newell !
Of course, what happens next will be equally important - will the AFP stay down, will the tumor stay gone. But I am grateful for this good news right now.
11/27/2013 UPDATE:
AFP = 9.5
Bilirubin and ALT rising from previous values, everything else pretty good -
Evaluation of latest imaging shows no sign of original tumor.
Possible trans plant re-evaluation Feb/March 2014
Update March 26, 2014 : February Labs remain good AFP still at 9.5. New 1cm growth detected in right lobe (original tumor in Left lobe). Oncology team believes it benign.
They also propose I be reevaluated for transplant and OHSU has agreed. This will occur the middle of April.
If I can get through this with just a fraction of the grace, dignity, and courage that HectorSF has shown to so many of us for so long I will be satisfied.
On the fence about treating ?
Don't delay - be proactive - stay proactive !
Seriously folks, I delayed treatment and look where I am now...
[Less]
likes this quote: "Be humble you are made of earth, Be noble you are made of stars "
04/13
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11
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Comment
Nov 25, 2013
"Dr. Schiano,
Thank you very much for your answer ! I have my appt. with the lead oncologist on the 27th and will share this with her.
Happy Thanksgiving to your and your family.
hp00 - Thank you as well. Yes, I have considered t..."
Nov 24, 2013
"Dr. Irlam,
Thank you so much for your reply !
I will take your suggestion and post my question in radiology forums.
Thank you for your good wishes - I will let you know what I find out on the 27th.
Brian
"
Thank you Dee for your reply !
First shot was 3:30pm Friday the 23rd of March, riba and incevek started at 6:00am the next morning.
I was pretty freaked out about s...
Well after many delays, meds are on their way, and first shot scheduled for 3/23/2012. Wish me luck !
09/14
Just a quick note to say hi! Am so happy for you and your family. Take care of that prize possession you received.hugs and prayers.
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