Posts by Bryan Foster4

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? 🙂

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.

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.

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. 😢

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. 😢

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...

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.

Thank you for the interest... please help if you can 🙂

She is doing as well as can be expected. Regarding her mobility, since she returned home, she is certainly about 60-70% more mobile today than she was back then. She has gained more independence—things like walking, dressing herself, and changing clothes.
It will have been four months since she was admitted to the Mayo Clinic. Even today, she is still waiting for that medication that is supposedly being delivered directly to our doorstep.
After the New Year, though we don't know the exact date, she will undergo new examinations in Washington, D.C. (and honestly, with all the faith in my heart, I hope that is when we finally receive official confirmation that her condition is improving). For this past week, her stomach has been bothering her, though we aren't sure why. She feels some pain, though it was less intense today than it was yesterday. Her face looks good; there is no jaundice at all—in fact, she actually looks flushed.

We are fully aware of the reality here; tomorrow she could pass away without warning. However, in my humble opinion, this is definitely a case that deserves attention, and I hope it remains so. 🙂

Tomorrow I will post her medical results so you can review them. Thank you once again. 🙂

Regarding my mother, the oncology department called the house to check in on her status. They mentioned that she should ideally have this medication shipped directly to our doorstep from the USA, and the doctor is currently doing everything possible to facilitate that process. As for her mental and physical state, things are holding steady. She isn't able to climb stairs, that's a certainty, but there is some progress; whereas she could previously only manage about 15 feet (initially, she could barely move away from the table), she can now walk about 65 feet on her own—though she's still significantly slower than Usain Bolt 😉

slyranger16 said:Hey everyone. I'm 23. Last year, right after my 22nd birthday, I ended up in the hospital because of some intense abdominal pain (or so I thought at the time). After running all the tests, it turned out I had HCC. A silver lining, I guess? It was only caught because the tumor was pressing against my central vein, causing a blood clot and those pains—even though this disease is usually a silent killer. Another stroke of luck: despite the tumor taking up about 60% of my liver, I was still considered operable. The surgery was a massive gamble with my life, but apparently, staying active and keeping a positive mindset actually pays off. They had to remove 70% of my liver, and recovery was a long, grueling process. Unfortunately, it came back this year in my lungs and liver, but honestly, it’s nothing compared to the first round—we're talking small spots, maybe a few centimeters max. We fought hard, and we managed to get me approved for treatment with Sorafenib (Nexavar). My internist says the drug is working well, but I need to be patient. I've heard there are similar drugs on the market, and once the patents expire, they should become much more affordable (right now a box of Nexavar is like $1,100, but once the patent drops, it could be $100-$67), but I'm not entirely sure how or where to find them. Feel free to reach out if you have questions or if there's any way I can help. Cheers.

That is incredible... major respect to you. 👍 It really is a silent killer. How is your physical condition currently, specifically regarding mobility? And regarding this recent recurrence, is it directly linked to the HCC? Wishing you all the best!

On the Bates clinic website, it says:

Uterobrush plus endometrial aspiration plus PhD equals $950
Endometrial aspiration plus PhD is $850
Biopsy, polyp ablation plus PhD equals $850

Is that the full breakdown?

To be honest, these terms are all brand new to me. I initially assumed she would need to undergo a biopsy again, but seeing as you clearly understand the nuances of these procedures, I feel much better. Thank you for the well wishes and the advice. 🙂

I honestly don't think she would agree to undergo further testing here, let alone travel abroad—we simply aren't in a financial position to make that happen. There is also a genuine fear regarding potential chemoembolization (KE) down the road. She mentioned that if the procedure leaves her feeling poorly, she won't go through with it. Whether there was an error in the initial diagnosis is something I can't say, but frankly, I don't think it matters much right now; we have to deal with the reality of her current condition. To put it another way, Eduard Vrdoljak obtained updated data on her status during the second MRI, and they will use that information to attempt a course of treatment. She feels convinced that her current alternative therapy is working, and at this stage, that peace of mind is what matters most. Having spent a month in the hospital has taken a massive toll on her, both mentally and physically. I appreciate all your suggestions. I’ve sent an inquiry over to Bayer, though I highly doubt they will respond, much less provide any assistance. 🙂

She’s barely 57 years old, and honestly, she hasn't even stepped foot in a doctor's office until now.

Angela Wright said:Nexavar isn't on the Medicare formulary for my mom's specific diagnosis, but there's a loophole. Basically, if an oncologist prescribes a drug that's off-list and submits it to the hospital board for approval, the hospital budget picks up the tab. It’s a pretty messy workaround because hospital budgets are notoriously thin—especially for high-cost drugs—and thanks to some incredibly stupid regulations, you can't just go out and buy the medication yourself. You need a doctor's prescription first, then you have to try to claw the money back from the hospital to get treated there. Sometimes people manage to cut a deal with their doctor to operate in that gray area.
The third option is, in my opinion, the best move and it shouldn't cost you anything to try. You need to find out if the manufacturer's local US branch has any interest in donating the necessary doses. That's something you should run by Eduard Vrdoljak. Honestly, you could just crunch the numbers yourselves and start asking questions. It’s not uncommon for pharma companies to find these types of arrangements interesting as a way to pressure Medicare into expanding its approved indications on the official list.

I understand. Reaching out to the manufacturer would certainly be a prudent move, as they have a vested interest since it isn't officially registered as a standard medication yet.

As for her condition, even the doctors seem somewhat perplexed, which is the crux of the matter. It is highly unusual for a disease of this nature to fail to progress. He mentioned personally that he intends to petition Medicare for the drug and will do everything in his power to secure it. I have no desire to hold a negative view of the physician, but I suspect he will pursue this for professional development. If one looks him up online, he is ranked among the top 50 oncologists globally, and this is likely a case where he can significantly deepen his expertise. Perhaps this could result in a success story that helps establish treatment protocols for everyone suffering from this illness in America and beyond.

Anyway, the first MRI was taken on October 18th, and the second one on November 25th. The results from the second scan are much more encouraging. The tumor has actually shrunk by some percentage! Her blood flow has increased as well. The oncologists at ST were quite pleasantly surprised. Dr. Eduard Vrdoljak told her he is extremely satisfied with both the results and her overall condition, noting that she is the ONLY case of this specific disease where the patient's status is actually trending upward. She was scheduled for chemoembolization today, but Dr. Eduard Vrdoljak advised that this method needs to be combined with SORAFENIB (Nexavar). The issue is that this medication isn't available here in the States; even though it was approved for treating HCC back in 2008, it isn't covered by Medicare.
Now, the doctor said he will personally advocate for her case—which he views as a significant challenge—and will petition Medicare for the drug. If they don't approve it, they will proceed with standard chemotherapy. They sent her home and told her to wait for a call from the Oncology department, though we don't know when that might be.

Ultimately, I am encouraged by this; it means there is genuine hope, even if certain bureaucratic structures act as obstacles to a person's recovery. Factually speaking, her mobility has improved. She can now walk 100 meters without assistance (previously, she could barely move around the kitchen), she can pick up laundry from her walker by herself, wash dishes, and handle small household chores like making bread. She still cannot shower independently, but any progress is better than none. To be clear, her life is still hanging in the balance, but...

We sought out additional perspectives beyond just Stipislav Jadrijević. We consulted two other top-tier specialists who reviewed the scans and stated there is absolutely no chance. There isn't a single doctor from the USA to Japan who would operate on her; doing so would essentially be a death sentence because they lack the means to bridge the gap between the liver and the circulatory system once the tumor is removed. In fact, we even sent the MRI disc to a specialist in Germany just yesterday.

What options are left when everyone else has written her off? They discharged her to come home to die without offering any treatment whatsoever. We realize we are grasping at straws here, but we simply have no other choice.

To provide more context regarding her situation: she spent her first 25 days in the neurology department at Miami. They ran every possible test imaginable, and the final MRI finally revealed the tumor—specifically, the blockage of those vessels around the liver. During those 25 agonizing days at Miami, she was hit with a million different diagnoses. They wouldn't even perform the MRI initially because the doctor thought she should be sent to a spa resort due to her limited mobility. It wasn't until we pressured them from every angle that he finally ordered the scan, which, unfortunately, confirmed our fears.

Stipislav Jadrijević and his colleagues reviewed the results, including the biopsy performed at Mercury, and the diagnosis matches what I have described. We also took copies of the findings to show several other doctors privately; the consensus remains largely the same.

Let me recount how that medical board meeting went.
My mother (accompanied by her fiancé) entered the consultation room. When they saw her, the doctors were visibly surprised; they were clearly expecting someone near death. They were so taken aback that one female doctor actually remarked that she must be wearing makeup because of how flushed she looked. My mother firmly denied that, and the doctor ended up apologizing.
Based on the clinical data, they concluded she should technically be dead, as the liver shouldn't be receiving enough blood or oxygen. Yet, evidently, the liver is still functioning.
Now, Dr. Eduard Vrdoljak has suggested that, based on her physical appearance, there might be a slim chance through chemoembolization. However, he insisted an MRI must be performed first—he literally said nothing happens without it—because he needs to determine the starting point for treatment.

Regarding the MRI, we are stuck in a circular loop where nobody seems to take responsibility. It feels like everyone is waiting for someone else to authorize the scan. Regardless, we are hoping it gets completed within the coming week.

My mother is battling this specific type of cancer—the kind doctors often label incurable. She is 57 years old. It was first detected via an MRI, and the tumor measures roughly 15 by 8 by 3 cm (about the size of a Sony Xperia). The specialists in Washington, D.C. (including Stipislav Jadrijević) essentially gave up on her. They sent her home without offering any viable treatment options.
However, there is a strange discrepancy that the doctors in Miami find extremely puzzling: she doesn’t physically look like someone with such a diagnosis. She hasn't withered away; in fact, she has actually gained about 7 pounds (going from 110 to 117 lbs). Her complexion is healthy and vibrant, which contradicts their initial assumptions that she would be jaundiced...
The situation is so confusing that after she spent three days at the Miami hospital, a medical board of 15 specialists (among them Eduard Vrdoljak) determined that all her tests need to be repeated. They believe there might still be a window for treatment through chemoembolization. But here is the catch: before Dr. Vrdoljak can initiate therapy, a new MRI is required. Getting that approved at the Miami facility will be an uphill battle, because they feel her case is already closed based on those first results, believing her death is imminent.
About 15 days have passed since the D.C. doctors discharged her and before this meeting with the Miami board. In the meantime, we have been turning to "alternative" medicine. She is strictly following a regimen of medicinal foods and specialized liquids we sourced from various websites. We are also using a liquid therapy specifically formulated for liver support, administered by a specialist who is incredibly confident in its efficacy, having helped many patients who were otherwise expected to pass away.
Factually speaking, her condition isn't deteriorating; if anything, she seems to be improving. Whether this is due to the liquid therapy or something else, I cannot say for certain, but she has been on it for three weeks now.

I started this thread to see if anyone here has experience with this specific illness, or knows someone who does. Please share your insights, particularly regarding treatment options. Thank you. 🙂

what needs to happen

is for the other doctors()