Posts by Kate Wells44

The symptoms you're describing sound like they align with what we call Superior Vena Cava syndrome. What did the CT scan show? If a tumor or some enlarged lymph nodes are pressing against the superior vena cava, it makes it much harder for blood to flow back to the heart, which causes collateral circulation to develop—basically resulting in those visible, dilated veins on the chest. Please type out the CT findings for me. I'm an oncologist.

Angela Wright said:It takes some time. It might even drag on a bit longer since summer vacations are starting up.

The PhD usually takes about 7 to 10 days. If they need extra tests, it might take a little longer, but it definitely shouldn't be 3 or 4 weeks.

The colonoscopy results are ready today, but we're looking at about a 7-day wait for the pathology report (though maybe we can nudge them if we push hard enough). As long as my father-in-law isn't having any issues with bowel movements, waiting an extra 2 or 3 days for the final word won't change much. Unfortunately, his illness has progressed quite far, and there's no chance for a cure. Combining chemotherapy with biological therapy might slow down the progression and extend his life, provided he responds well to it.

The primary tumor is located in the large intestine. We need to perform a colonoscopy for two main reasons: first, to take a biopsy for histological and molecular analysis, and second, to ensure the passage is clear enough for the equipment. If everything looks okay, surgery isn't necessary right now; our first move would be chemotherapy combined with biological therapy, depending on what those molecular tests reveal. However, if there's a blockage, we'll have to proceed with surgery to prevent an intestinal obstruction, which would become an emergency.
I’d also consider radiating those osteolytic changes in the pelvic bones.

What isn't clear?

ruggedfox11 said:Thanks for clarifying!
I was actually expecting a "what does this mean..." follow-up. :-)
Does this mean he won't need more radiation if new spots show up?
Is Dr. Smith an actual doctor? Just curious. :-)

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To clarify, additional radiation is definitely possible and makes sense if the initial treatment worked well. A medical board decides that on a case-by-case basis for every patient.
In the US, the issue is that at many institutions, lung cancer patients are managed by pulmonologists rather than oncologists. This often leads to poor coordination with oncology teams, causing patients to lose precious time navigating the system. It sounds like you experienced that firsthand.
I'm an oncologist, so I see this situation all the time.

For primary brain tumors, we usually cap radiation at 60 Gy—that’s about 2 Gy per day. It’s basically the maximum dose the entire brain can handle in one go. If we decide to bump up the daily dose, we just have to shorten the overall treatment time. The total dose ends up being lower, but the radiobiological impact stays exactly the same.
Brain metastases are typically treated using different schedules, like 20 Gy over 4 or 5 sessions, or 30 Gy over 10. This actually works out to be roughly equivalent to 50 Gy delivered in 25 sessions. These shorter bursts are just as effective as the longer, daily routines. When dealing with metastases, there really isn't any point in dragging treatment out over five weeks when you can achieve the same clinical result in just 4 or 5 days.

ruggedfox11 said:We ended up in the ER at the ENT clinic two nights ago because of nosebleeds. He had to get a nasal packing, but—get this—his Leukocyte 2.1 is down, platelets are at 55, and his blood sugar is 18! My goodness. If Topotecan ruins blood counts like this, we are in trouble..
Anyway, he's stable for now. I'm reaching out to his pulmonologist to report what happened, so she can redo his blood work in a few days and check if the sugar spike is from the steroids. Though, honestly, it’s not like this is his first time on them; his levels have never been this high before! She doesn't even seem to know exactly which dose he's taking or what he's on! It's frustrating. I have so many students pass through my house that I can barely remember their names, but I know exactly which part of the lesson they're struggling with! When someone's life is in your hands, you really should know what you're prescribing.
But oh well. I called my sister, and she said the sugar is too high regardless of the corticosteroids. She went over to see his primary care doctor and got him some meds to bring the glucose down. He's doing better today.
Also, why is he scheduled for a follow-up brain CT when he can't take any more radiation anyway, regardless of the results? What gives? Why does the oncologist say the max dose is 60, he's only receiving 20, yet you're saying there's no more left?! This is ridiculous!
I've decided to seek a second opinion in Washington, D.C., because it feels like she's just given up on him. A total disappointment. People are right when they say doctors can be incredibly ego-driven..

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Topotecan causes significant hematologic toxicity. CBC needs frequent monitoring; in your husband's case, it should be daily or every other day.
Regarding the radiation dose, 60 Gy is the maximum brain dose when applying a daily dose of 2 Gy. For brain metastases, we often use higher daily doses, like 3-5 Gy in fewer fractions (days), which makes treatment easier on the patient while achieving the same effect—essentially an equivalent dose.
The brain can be irradiated again if the previous treatment achieved a good result, though it's preferable to wait a longer period after the initial radiation.

Angela Wright said:Whew, it’s spread quite a bit. It isn't clear if it moved from the bladder to the colon or vice versa, though statistically, the colon seems more likely.
Since we're looking at metastatic disease, that’s definitely a tough circumstance to deal with.
Still, there's always realistic hope. Let's hope the treatment works and we can at least reach a point where the disease stabilizes without further metastasis. Just taking it one day at a time with a level head.

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This report doesn't actually confirm it's metastatic disease. What it shows is uncertainty about whether the primary tumor is in the bladder (where the biopsy was taken, rather than through radical surgery) or if it originated in the colon and spread directly to the bladder based on cell appearance. A thorough imaging review—specifically of the abdomen, pelvis, and chest—is needed first. If the scans show the tumor is localized, then we can look into radical surgery.

Dana Martin87 said:We haven't managed to see the doctor yet... 😢 I only know what he told my dad: that he's happy with how the surgery went, he achieved what was planned, and they'll decide whether to start radiation or chemo in about six months.

It feels a little strange to me... Why wait six months? Is that just how long it takes for the body to recover from surgery?

If we're talking about GIST (and you really should wait for the final pathology report to confirm the diagnosis), chemotherapy doesn't actually work on it. Radiation is usually reserved for exceptional cases, mostly for palliative care—meaning just managing symptoms rather than aiming for a cure.
Once a GIST diagnosis is confirmed, the first step is determining if the surgery was radical enough to remove the entire tumor mass. To figure that out, an abdominal CT scan or a PET/CT is necessary. If those scans show any remaining tumor that can't be operated on or any metastases, the gold standard treatment is imatinib mesylate (Glivec is the brand name for the original drug, though generics are available here in the US). Usually, you start at 400 mg daily, potentially increasing to 800 mg if the disease progresses. Sunitinib (Sutent), which was mentioned earlier, unfortunately isn't covered by Social Security Administration plans for GIST treatment (though it is registered in the US for use after a patient progresses past imatinib therapy).

Angela Wright said:There's no alternative, just boosting the immune system!!

The pathology report will provide guidance on whether we're actually dealing with carcinoma, a potential sarcoma, or maybe even a melanoma somewhere on the skin that hasn't been noticed yet.
In some cases, the primary tumor doesn't have to be large before metastases go crazy.
This adrenal gland looks very suspicious to me. It's possible everything started there, which should be easy to determine by checking hormone levels, among other things. Besides, an adrenal tumor is a very rare endocrine issue.
http://www.endocrineweb.com/conditio...adrenal-cancer
Regardless of whether this is lung cancer, a widespread disease like this is a serious situation. I'm keeping my fingers crossed that we identify the primary site quickly so targeted therapy can begin.

If there's a change in the adrenal gland, a chest CT should be done, because lung cancer often metastasizes to the adrenal glands. Another likely option is a benign change (an adrenal adenoma, which is also common), and the last thing we're thinking of is primary adrenal carcinoma, which is extremely rare.

Michael Cruz28 said:Hi everyone,
My mom just got some partial results from her bronchoscopy at Jordanovac. They confirmed a malignant tumor in the upper part of her right lung. As for the left lung, they couldn't determine exactly what's going on there yet. The next steps involve a visit to Medikol Clinic for a PET Scan, followed by another bronchoscopy on the left side.

They claim this is currently the top clinic in Germany.

http://www.helios-kliniken.de/klinik...bszentrum.html

They even won an award in 2015.

http://www.helios-kliniken.de/filead...ungenkrebs.pdf

(I'm a bit of a skeptic regarding awards—could be marketing, but let's hope not.)

I'd love to hear from the "experienced" folks here. Is this a solid choice, and what are the best options outside of Europe?

Thanks.

I think you should wait for the final cytology report (and potentially the EGFR mutation status) along with the PET/CT. Once you have those, you can determine the stage of the disease and tailor the treatment to the specific tumor type. It might not even be necessary to seek treatment abroad, since all the medications are available here in the States (though not everything is covered by Social Security Administration).

Amanda Miller69 said:We have an appointment at Rebro on February 23rd for a check-up and to finalize the chemo plan.
I sent the PET CT results to my sister-in-law, who's a nurse, and she said they look really, really bad.
On top of the metastases I already mentioned, there's suspicion regarding a lymph node in the neck. She warned me to watch out—if any blood vessels pop in his neck, it means it's spread and moving toward the brain... just what we needed.
The one thing I'm thanking God for is that despite how far this has spread, he isn't in any pain.

Spread through the blood? Brain metastases typically travel hematogenously (via the bloodstream), not lymphogenically, so a neck node isn't necessarily a precursor to brain involvement.
Given how widespread things already are, having a metastasis in the neck nodes doesn't actually change the prognosis or the treatment plan.

Amanda Miller69 said:We saw the surgeon first today. My father-in-law wasn't there, so the second doctor took over the exam... nothing worth noting, really, just a referral for oncology treatment.
The marker is 16.89 (normal is under 3).
Then we get to the institute. I haven't seen such negligence in a long time; the oncologist is on break, and the nurse tells me I'm in the wrong place because my referral is for an internal medicine oncologist... she said I should go see her first... but she isn't available, so just head to internal medicine... we walk up to the desk, and another nurse starts nagging us, saying people just show up instead of making appointments... I explain the situation again, and she finally says fine, leave the paperwork, the doctor is in a consultation so wait an hour and a half or whenever he's free.... we sit there like fools for half an hour. In the meantime, I call Cepulic to see if there's an earlier slot (we were scheduled for 3:30) so we don't waste time... his assistant calls me 10 minutes later to say we can come in right now.... I buy the papers at the window and tell them we're heading in... then the drama starts again—"wait, let me get the head nurse, maybe the backup oncologist can see you"... okay, we hand over the referral, and the first nurse rudely tells us to just wait our turn again.... ten minutes later, I grab the papers and say goodbye.

Cepulic is night and day compared to that place; friendly, kind, and considerate..... he said chemotherapy will be necessary, starting with three cycles to see if there's a response (cisplatin plus something carboplatin, I didn't catch the full name)... he mentioned Xeloda is pointless for planocellular because it doesn't work.
He did the exam and ran an extra ultrasound, but thank God he didn't tell him exactly what it was or how bad it is.
Today we finally figured out why he was in the hospital for so long.... sepsis.... it's a miracle he made it out alive, which is why they wouldn't give him any chemo after surgery.
Based on his recommendation, we're switching over to Repro, with Dr. Bishop. Does anyone have experience with her?

Briefly, from Cepulic's findings:

The recent PET/CT shows several new metastatic lesions (in the liver, mediastinal lymph nodes, abdominal wall, and paraaortic), so chemotherapy is now essential.
I recommend checking the Cyfr 21 marker and the CEA marker before each session (by the way, nobody ever told us we needed to check the latter).
Monitor CBC on days 10 and 14 after chemo, and if white blood cell counts drop, Neupogen should be administered. Check the size of the tumor deposits in the abdominal wall and liver after the 2nd and 3rd cycles.

Also, he told us the Institute tends to push six cycles on people unnecessarily (it just wears them down), whereas if there's no response after 2-3 cycles, the therapy needs to be changed.

Apologies for the late post, I had to blow off some steam.... my head is spinning from everything right now.
My mother-in-law called a little while ago; I gave her the rundown of the situation, and I don't think she took it very well.

Dr. Bishop is an outstanding physician and an incredibly high-quality person. You can approach her with full confidence.

Amanda Miller69 said:Yes, it’s esophageal cancer. He’s actually feeling pretty good right now—eating normally and experiencing no pain.
Could you tell me a bit about that chemo combo? Is it administered IV or via pills, and should we expect heavy side effects?
Ivanna also mentioned Xeloda.

We'll check in with Cepulic first to get his take, then decide our next move.
He has an appointment with the surgeon this Thursday, so we'll handle everything else then to avoid making multiple trips from the Midwest.

The EOX combination, along with the other options Ivanna linked, are typically used for gastric adenocarcinomas and lower esophageal cancers. When it comes to standard esophageal carcinomas, they are almost always squamous cell, and the go-to treatment is usually a cisplatin and 5FU combo (given intravenously). Just a heads-up, Xeloda isn't covered by Medicare for this specific indication. Side effects vary from person to person, but any regimen involving platinum derivatives often leads to neurotoxicity, nausea, vomiting, and nephrotoxicity. 5FU frequently causes diarrhea. Generally speaking, this chemo protocol is considered quite aggressive.

Amanda Miller69 said:I spoke with the oncologist this morning. She mentioned the disease has spread, and there isn't much more she can do besides explain the situation and refer him to an internal medicine oncologist to see if any further options exist. If they say there's nothing left, I’ll definitely be seeking a second opinion... does anyone have a specialist they'd recommend?
We're heading to her office on Tuesday, so we'll find out then.
Even though I knew things weren't great, this still hit me hard. I'm honestly a bit worried about how my husband and father-in-law will take the news.

The cancer has metastasized to the lymph nodes, liver, spleen, and abdominal wall, leaving chemotherapy as the only path forward. If I've got this right, since his father had esophageal cancer surgery previously, the standard treatment usually involves cytostatics like 5FU and cisplatin. Provided his general health is stable and his lab results look okay, there's really no reason not to give that therapy a shot.

Angela Wright said:It’s funny how things work here—pulmonologists handle all lung issues, including cancer. It seems a bit odd, but that's just the system.
Chemo results are usually clearest once the full prescribed dose is finished. Sometimes you see improvement after just a few rounds, while others might see progress even a couple of weeks after the final dose. It really varies depending on the patient and the specific medication.
Regardless, doctors will monitor markers and conduct more extensive diagnostics at the end of the first line of treatment to get a true picture of the situation.

Regarding the "division of labor," it mostly depends on the hospital. At the Mayo Clinic (similar to what happens in Miami), pulmonologists prescribe the chemo, while oncologists handle the radiation. Over at Vineyard, the oncologist manages the patient's care entirely, while the pulmonologist simply provides the diagnosis and symptom management (like inhalers and such).
Generally, guidelines suggest assessing the effectiveness of chemotherapy (or other systemic treatments, like targeted therapies) every two cycles using imaging and lab markers. For the first line of treatment, patients typically receive 4 to 6 cycles—four if the disease stabilizes, or six if there is significant regression—after which a decision is made regarding the next steps.

Xeloda is a type of chemotherapy. While many patients deal with side effects from Xeloda, if you know what to look out for before starting treatment, most of them can be caught early and managed effectively.

Angela Wright said:If I recall correctly, Nexavar and Sutent can affect the blood vessels in the brain, which might complicate things. You can find published studies on PubMed or check the manufacturer's websites to confirm.
Make sure to ask Dr. Miller about these newer medications. Honestly, you're the first person I've heard mention them. If they are indicated for this case, he'll suggest them, and then you can take that recommendation straight to the hospital oncologist to push for it.

The new drugs on the high-cost specialty list are pazopanib (Votrient) and everolimus (Afinitor). Pazopanib is listed for first-line treatment of metastatic renal cell carcinoma—meaning it has the same indication as Sutent. Everolimus is typically used after Sutent for patients without brain metastases. As it stands, the patient doesn't qualify for either of these under their current insurance coverage.
By the way, I'm an oncologist.