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HCC (Liver Cancer)

Started by Bryan Foster4 · · 👁 5 views · 31 replies

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Participants Bryan Foster4Angela Wrightmistyjackal842slyranger16vividsailor7Hannah Reed3
Bryan Foster4 Bryan Foster4 MemberOP
17 messages
joined Nov 2013
#21 ·
MEDICAL REPORT

12/04/2013
The patient is presenting this case to the GI tumor protocol team. Diagnosis: Primary liver neoplasm.
Procedure: Biopsy performed on 10/31/2013 at Mount Sinai Medical Center.
Pathology report: Poorly differentiated hepatocellular carcinoma with
microangiovascular invasion.
Disease stage: c T3b N0 M0
Summary of diagnostic workup:
- Abdominal and pelvic MSCT (11/27/2013): A neoplastic process measuring 11x8x6.5 cm is visible in the right hepatic lobe (previously measured at 14.3x12.7x7.8 cm on the 10/18/2013 MSCT). There is thrombosis present in the portal vein, splenic vein, and superior mesenteric vein.
- Thoracic MSCT, brain imaging, and lumbar spine MRI: No evidence of metastatic spread.
- Lab results: GGT 206, AST 68, ALT 44, LDH 428.
- Tumor markers: AFP = 10.19, CA 19-9 = 43.96, CA 15-3 = 46.7, CA 125 = 35.1, NSE 25.3; CEA and CYFRA 21-1 are within normal limits.
Child-Pugh status: A (bilirubin 23, albumin 33, PV-INR 1.1, no ascites, no encephalopathy).
General condition is good. ECOG 1. No weight loss noted. Physical exam: negative for tumors. In October 2013, she was diagnosed with sensorimotor polyneuropathy of the lower extremities.

Team Decision:
Local therapy will be coordinated with the interventional radiologist alongside a prescription for systemic Sorafenib therapy. A Sorafenib approval request will be submitted to the drug approval committee. Once the medication is approved, the patient will be notified via telephone.
Upon the arrival of the medication to begin treatment, please present with current CBC, CMP, biochemistry (glucose, urea, creatinine, bilirubin, AST, ALT, GGT, ALP, LDH, electrolytes) and the outpatient treatment referral, Dr. Smith.
vividsailor7 vividsailor7 Active Member
217 messages
joined Sep 2011
#22 ·
Bryan Foster4 said:MEDICAL REPORT

12/04/2013
The patient is presenting this case to the GI tumor protocol team. Diagnosis: Primary liver neoplasm.
Procedure: Biopsy performed on 10/31/2013 at Mount Sinai Medical Center.
Pathology report: Poorly differentiated hepatocellular carcinoma with
microangiovascular invasion.
Disease stage: c T3b N0 M0
Summary of diagnostic workup:
- Abdominal and pelvic MSCT (11/27/2013): A neoplastic process measuring 11x8x6.5 cm is visible in the right hepatic lobe (previously measured at 14.3x12.7x7.8 cm on the 10/18/2013 MSCT). There is thrombosis present in the portal vein, splenic vein, and superior mesenteric vein.
- Thoracic MSCT, brain imaging, and lumbar spine MRI: No evidence of metastatic spread.
- Lab results: GGT 206, AST 68, ALT 44, LDH 428.
- Tumor markers: AFP = 10.19, CA 19-9 = 43.96, CA 15-3 = 46.7, CA 125 = 35.1, NSE 25.3; CEA and CYFRA 21-1 are within normal limits.
Child-Pugh status: A (bilirubin 23, albumin 33, PV-INR 1.1, no ascites, no encephalopathy).
General condition is good. ECOG 1. No weight loss noted. Physical exam: negative for tumors. In October 2013, she was diagnosed with sensorimotor polyneuropathy of the lower extremities.

Team Decision:
Local therapy will be coordinated with the interventional radiologist alongside a prescription for systemic Sorafenib therapy. A Sorafenib approval request will be submitted to the drug approval committee. Once the medication is approved, the patient will be notified via telephone.
Upon the arrival of the medication to begin treatment, please present with current CBC, CMP, biochemistry (glucose, urea, creatinine, bilirubin, AST, ALT, GGT, ALP, LDH, electrolytes) and the outpatient treatment referral, Dr. Smith.

Huh, certainly interesting.
Honestly, I really hope Professor Johnson can manage to fight for something here, because based on what’s written—tumor size, infiltration, and those liver vein thromboses—I can't exactly share his optimism. That said, there are some bright spots (no ascites, decent Child-Pugh score, no metastases, and it's limited to just one liver lobe).
What I would personally consider is introducing Propranolol into the therapy, or if she doesn't tolerate that, maybe trying Carvelol, given the venous thrombosis (possible portal hypertension?). Honestly, that looks like the biggest hurdle for chemoembolization.
Bryan Foster4 Bryan Foster4 MemberOP
17 messages
joined Nov 2013
#23 ·
vividsailor7 said:Huh, certainly interesting.
Honestly, I really hope Professor Johnson can manage to fight for something here, because based on what’s written—tumor size, infiltration, and those liver vein thromboses—I can't exactly share his optimism. That said, there are some bright spots (no ascites, decent Child-Pugh score, no metastases, and it's limited to just one liver lobe).
What I would personally consider is introducing Propranolol into the therapy, or if she doesn't tolerate that, maybe trying Carvelol, given the venous thrombosis (possible portal hypertension?). Honestly, that looks like the biggest hurdle for chemoembolization.

Regrettably, her psycho-physical state over the last week has not been what it used to be. She is under significant stress, and her stomach has been causing her trouble; she hasn't really eaten much. Last night, we had to push her to go to the emergency room. The diagnosis was air in the stomach; they gave her an injection, some sort of cocktail via IV, and prescribed a syrup. The doctor wasn't very encouraging; he assessed that this might be the beginning of the end, suggesting that the pain will likely increase, unfortunately.

She woke up at 7:30 this morning and mentioned she slept well. Today, we managed a nice two-hour walk with short breaks to rest. When we returned, she even ate a piece of meat and noted that her stomach didn't hurt. In the meantime, she hasn't had that liquid from the pharmacy for the past two weeks (she will resume tomorrow). If she starts feeling better, she will drink it constantly.

We are visiting the psychiatrist tomorrow, so we will see. Regarding her physical appearance, it is difficult for us to judge since we are with her constantly, but perhaps she looks a bit jaundiced, though not significantly. Her weight is 50 kg, having lost about 1 kg.

So, Doctor, we will respect that opinion. If you have any further thoughts, whether it be a diagnosis or a prognosis regarding timing, please feel free to message me privately or reply here so we know where we stand...
vividsailor7 vividsailor7 Active Member
217 messages
joined Sep 2011
#24 ·
Bryan Foster4 said:Regrettably, her psycho-physical state over the last week has not been what it used to be. She is under significant stress, and her stomach has been causing her trouble; she hasn't really eaten much. Last night, we had to push her to go to the emergency room. The diagnosis was air in the stomach; they gave her an injection, some sort of cocktail via IV, and prescribed a syrup. The doctor wasn't very encouraging; he assessed that this might be the beginning of the end, suggesting that the pain will likely increase, unfortunately.

She woke up at 7:30 this morning and mentioned she slept well. Today, we managed a nice two-hour walk with short breaks to rest. When we returned, she even ate a piece of meat and noted that her stomach didn't hurt. In the meantime, she hasn't had that liquid from the pharmacy for the past two weeks (she will resume tomorrow). If she starts feeling better, she will drink it constantly.

We are visiting the psychiatrist tomorrow, so we will see. Regarding her physical appearance, it is difficult for us to judge since we are with her constantly, but perhaps she looks a bit jaundiced, though not significantly. Her weight is 50 kg, having lost about 1 kg.

So, Doctor, we will respect that opinion. If you have any further thoughts, whether it be a diagnosis or a prognosis regarding timing, please feel free to message me privately or reply here so we know where we stand...

Well, you really need to write down those lab results, the diagnosis, and the exact therapy she received during that ER visit.
Does she have any chronic conditions like hypertension, hyperlipidemia, diabetes, or heart issues?
Also, what is her blood pressure, and what medications is she currently taking?
Bryan Foster4 Bryan Foster4 MemberOP
17 messages
joined Nov 2013
#25 ·
Health is failing completely. Unfortunately, jaundice has set in everywhere, her strength is draining away, and the pain just keeps intensifying. She can barely eat anything because everything causes discomfort, so she's relying on IV fluids. Every single day is marked by cramps and vomiting, yet she can't seem to keep anything down. For a week now, they've been attempting to insert a biliary stent, but they haven't been successful because the 😢 has metastasized. Her movement remains slow, and her will to live is strange—unpredictable, though it’s what keeps her going to some extent. As for how much longer she has, I simply don't know. 😢
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#26 ·
Bryan Foster4 said:Health is failing completely. Unfortunately, jaundice has set in everywhere, her strength is draining away, and the pain just keeps intensifying. She can barely eat anything because everything causes discomfort, so she's relying on IV fluids. Every single day is marked by cramps and vomiting, yet she can't seem to keep anything down. For a week now, they've been attempting to insert a biliary stent, but they haven't been successful because the 😢 has metastasized. Her movement remains slow, and her will to live is strange—unpredictable, though it’s what keeps her going to some extent. As for how much longer she has, I simply don't know. 😢

Oh, I am so incredibly sorry to hear that. 😢
Just stay by her side and do everything you can to make things easier. The priority right now is managing her pain, making sure she isn't hungry, and ensuring she stays hydrated. With proper palliative care, you can definitely achieve that.
Hang in there, and cherish every single moment you have left with her, however long that may be.
Bryan Foster4 Bryan Foster4 MemberOP
17 messages
joined Nov 2013
#27 ·
Regrettably, she passed away on February 6th. She fought with every ounce of strength she possessed, showing a level of willpower that was truly superhuman, but the cancer proved to be too much. I appreciate your kind thoughts and interest. 😢
Hannah Reed3 Hannah Reed3 Member
22 messages
joined Mar 2012
#28 ·
Bryan Foster4 said:Regrettably, she passed away on February 6th. She fought with every ounce of strength she possessed, showing a level of willpower that was truly superhuman, but the cancer proved to be too much. I appreciate your kind thoughts and interest. 😢

I am truly sorry for your loss. I've been following your situation from the start, and I realized your mother had passed when I saw the obituary in the New York Times.
Bryan Foster4 Bryan Foster4 MemberOP
17 messages
joined Nov 2013
#29 ·
Here is how the situation unfolded, though one part remains unclear to me. A highly respected physician, Dr. Johnson, approved the Sorafenib approval request, but it happened far too late.

She was seen at the oncology department in Miami on November 20th, then again on November 27th and December 4th. However, it was only during that final visit on December 4th that he finally prescribed the Sorafenib. It occurred, unfortunately, much too late. By a strange coincidence, she received her first infusion on Christmas Eve, just as she began taking pain medication (Zaldiar); coincidentally, that very morning, a letter arrived from home stating that the Sorafenib had been approved for coverage by the hospital—specifically, the oncology department.

When we arrived at the oncology department, feeling optimistic after a three-day wait (December 28th), we were met with shock. Regrettably, Edward stated that her blood work wouldn't allow for the use of Sorafenib because certain levels were elevated. This is where the mystery lies for me. Why didn't the esteemed Dr. Johnson submit the Sorafenib approval request immediately on November 20th or even November 28th, but waited until after her third visit on December 4th?

She underwent a second MRI, and the results appeared significantly better than the first (though our local doctor suggested the tumor hadn't actually shrunk, but rather that the scan was taken from a different angle). I cannot say for certain what the truth is, but the fact remains that the second MRI indicated the tumor was 2–3 cm smaller. Furthermore, her physical condition was nearly excellent! That she was doing well was evidenced by that second MRI, which Dr. Johnson ordered because he could hardly believe she was still alive and looking so healthy, especially when the lab results he held in his hand showed the exact opposite.

I am trying to understand why he didn't initiate the process for the Sorafenib right away. I still recall his words on December 28th: "Ma'am, the Sorafenib is approved and has already been delivered here; we are simply waiting for your blood work to improve" (even though he knew that wouldn't happen). Specifically, if the Sorafenib was already approved, she clearly could have received the therapy at some point. In my amateur, common-sense estimation, an oncology department wouldn't even begin the paperwork for Sorafenib unless there was a genuine possibility of administering it.

We had a local doctor guiding us, but still...
I can send you all the hospital documentation I possess via private email if you wish; this includes all the blood tests and other assessments she underwent.
Bryan Foster4 Bryan Foster4 MemberOP
17 messages
joined Nov 2013
#30 ·
I misread something in a previous post by vividsailor7 from December 31st, which led to my error here. If you caught that and actually want to review the specific case details, please feel free to reach out to me via private message. Thank you.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#31 ·
Bryan Foster4, I am so incredibly sorry for your loss. Please accept my deepest condolences. 😢
I’m convinced the issue wasn't Edward Johnson himself, but rather a bureaucratic machine designed to be intentionally obstructive. There are these specific windows each month when the pharmacy review board meets, and more often than not, those dates have absolutely nothing to do with the urgency of a patient's condition or the reality of a hospital budget that has likely already hit its ceiling by month's end. We have world-class physicians working within a system that feels stuck in the dark ages of red tape. That is the core of the failure. I truly believe Johnson did everything humanly possible; he presented his mother's case and made the argument that she was a legitimate candidate for such an expensive medication. Unfortunately, at the end of the day, these institutions prioritize their bottom line over people.
Bryan Foster4 Bryan Foster4 MemberOP
17 messages
joined Nov 2013
#32 ·
Angela Wright said:Bryan Foster4, I am so incredibly sorry for your loss. Please accept my deepest condolences. 😢
I’m convinced the issue wasn't Edward Johnson himself, but rather a bureaucratic machine designed to be intentionally obstructive. There are these specific windows each month when the pharmacy review board meets, and more often than not, those dates have absolutely nothing to do with the urgency of a patient's condition or the reality of a hospital budget that has likely already hit its ceiling by month's end. We have world-class physicians working within a system that feels stuck in the dark ages of red tape. That is the core of the failure. I truly believe Johnson did everything humanly possible; he presented his mother's case and made the argument that she was a legitimate candidate for such an expensive medication. Unfortunately, at the end of the day, these institutions prioritize their bottom line over people.

If I had my way, it would be as if the Sorafenib approval request was never even filed, nor was the drug ever approved at all. Because now that the approval has finally come through, it feels far too late. It leaves me with nothing but resentment and despair, wondering why the request wasn't initiated sooner.

I intend to contact Dr. Smith directly. I want him to explain why he didn't start the process for the medication immediately—why wait, if he knew time was already running out? I will ask him point-blank: based on her blood work, was there any moment from the time he took over her care where she could have been included in the Sorafenib protocol? 🙂

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