Support for families dealing with cancer and other serious illnesses (Part II)

Kate Wells44 said:I’ve explained this before—re-irradiation is absolutely on the table and makes perfect sense if the initial radiation treatment was successful. It isn't a one-size-fits-all decision; an oncology tumor board reviews each patient individually to decide the best path forward.
In the US, we don't usually see this specific issue, but in many healthcare systems, lung cancer patients are often managed by pulmonologists rather than oncologists. This leads to a breakdown in coordination, leaving patients to wander through the system trying to find the right specialists. That is exactly what you are experiencing firsthand.
As an oncologist, I see this systemic friction all the time.

Well, you’ve certainly given me a lot to chew on now—I’ll probably end up having a million follow-up questions... Is it possible to seek a second opinion from an oncologist specifically? Or does it have to be a pulmonologist? And what are the standard protocols for small cell carcinoma here in the States? In her case, the pulmonologist suggested PE as the first line, then Hycamtin, followed by CAV. If the disease progresses more than six months after receiving PE, they go back to it.
Now, I’m hearing that Taxol is typically administered between the Hycamtin and CAV protocols—and apparently, if all those protocols are exhausted and six months have passed since the last platinum-based treatment, they might switch to a different type of platinum. Radiation for the primary tumor wasn't even an option for her from the start. Why would that be? Also—and please excuse my directness—would it be alright if I sent over his lab results and CT scans? :-)

analogbison0 said:They’re bringing her into the clinic on Friday, September 15th, and the surgery should happen by Monday. I honestly can't tell if they moved this along super fast or what!

In my case, I was already in surgery just a month after getting the diagnosis—and only ten days after I finally got all my scans together (the MRI, PET-CT, and everything else)... though, since I fall into that younger patient category when it comes to gynecological cancers, maybe they just gave me the green light a bit faster...
If you ask me, they could've even pushed her through a little sooner...

Honestly, these constant trips to the hospital—moving from department to department, seeing one specialist after another—have started to feel almost comical. It’s become surreal how much of a person's life gets filtered through this endless cycle of tests and appointments. Anyway, I mentioned to his pulmonologist that his leg was swollen. She just told us to head to either the ER for internal medicine or the pulmonary emergency unit. But, because I can’t seem to sit still and let things slide, I insisted we go to the main hospital—I figured since they have everything there, they could check his blood sugar and blood pressure at the same time. Well, wouldn't you know it? The hematologist on call was there, almost certain it was a thrombosis. We waited for the blood work, which confirmed his fears, and he sent him for an ultrasound with a Color Doppler of the leg just to be safe. When the lab results came back... oh my goodness. Leukocyte 2.1 (I wonder how low Neupogen can actually go?), erythrocytes at 2, hemoglobin at 80, and platelets at 45—everything is crashing! Except for the LDH, which jumped to 371 from 355 just a month ago. My heart absolutely sank. The doctor recommended hospitalization, but my husband was adamant: NO, we are going home. Fine. So, the plan is to get an internal medicine referral first thing in the morning to get the radiology done, and then he can start on blood thinners (once I realized that would only happen once those platelets climb back up to 60). And then—get this—the hematologist actually suggested that such a massive drop in blood counts is a "good sign," because it means the tumor is responding. That makes zero sense—maybe for blood cancers, perhaps, but I don't see how it connects here. Good grief! This whole experience has turned into some sort of medical drama series, like a mashup of "Hospital Chronicles" and "Meet the Meds." Ufffff !!

Kate Morgan66 said:I had surgery just a month after my diagnosis, and only ten days after I finally got all my scans together (MRI, PET-CT, etc.), but since they classify me as a younger patient when it comes to gynecological cancers, maybe that’s why they rushed things...
If you ask me, they could have even moved a bit faster...

So, did you have the procedure at your local hospital or what? Honestly, it feels like they might have been dragging their feet just to give themselves some breathing room, which is why she’s being operated on in San Diego instead of Washington, D.C. That’s the vibe I’m getting from this whole situation... I mean, there was another lady yesterday who got scheduled for this very month. Then again, I don't know what her specific diagnosis was, and I definitely don't want to jump to conclusions because it might actually be a genuine medical emergency.

analogbison0 said:So, did you have your surgery at your local hospital or what? Honestly, I’ve got this nagging feeling they might be playing games, like giving someone just enough breathing room to "rethink" things before sending them off to San Diego instead of Washington, D.C. It just smells fishy to me... I mean, look, one lady yesterday was scheduled for her procedure later this month. Now, I don't know the specifics of her diagnosis—and I really don't want to overstep because it could be a massive emergency—but still...

Look, I can't say for sure, but from where I'm sitting, it sounds like your mom's situation is pretty urgent...
Do you even know which surgeon is handling the case?
Petrov is my home hospital, but honestly, that shouldn't be the deciding factor here. They are basically the top-tier federal referral center for anything involving precancerous or malignant lesions in the pelvic region or cervix. Even if they weren't the big shots, it shouldn't matter where you live in the US...

I mean, last Friday I walked into the OBGYN clinic and got hit with a pathology report confirming cancer, and by Monday morning, I was already being processed through the oncology outpatient department...

Hey everyone. Dealing with some suspicious MS lesions on the brain. Already had a primary melanoma surgically removed, plus both armpits were hit, and last year it was the MS in the brain. Currently on this protocol: Zytron plus Temozolomide—six days out. How’s the tolerance on this? And is there any way to throw in some supplements to keep my blood counts up and support my immune system?

swiftpilot29 said:Hey everyone. Dealing with some suspicious MS in the brain. So far, we've had surgical removal of the primary melanoma, both axillae, and then last year, the MS in the brain. Current protocol: Zytron plus Temozolomide—6-day cycle. How is this typically tolerated? Also, is it possible to bring in supplements to help maintain blood counts and boost the immune system?

My mom handled Temodal pretty well, though she had a primary tumor and her protocol didn't involve Zytron back then.
I'd suggest using supplements both before and after the cycle.

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Angela Wright said:My mom handled Temodal pretty well, though she had a primary tumor and her protocol didn't include Zytron back then.
Take your supplements both before and after the cycle.

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Thanks for the reply.

First and most importantly—the brain CT shows complete regression (though I’m taking that with a grain of salt, given the diagnosis, obviously)! Second, he's finally back home; the thrombosis has been dealt with, and we just have to wait a few days for them to confirm everything via ultrasound. He’ll also need to start daily Clexane injections next month. Third, his blood work is looking normal—well, except for his hemoglobin, but we'll get some iron into him! I'll admit, he’s being a bit of a grouch—honestly, acting like a woman dealing with PMS because he can't leave the house yet—but... please, let's all have some patience!! My only real worry right now is that room where he was with the gentleman suffering from sepsis... Is it possible for that kind of thing to be airborne?

ruggedfox11 said:First things first—the brain CT shows total regression (though I’m taking that with a grain of salt, given the diagnosis :-)). Second, he’s back home. The thrombosis is handled; we just have to wait a few days for ultrasound confirmation, and then he’ll be on Clexane injections for a month. Third, his bloodwork is looking normal, aside from the hemoglobin, but we’ll get some iron in him! Sure, he’s being as cranky as a woman dealing with PMS because he can't get out of bed, but... please, have patience!! I am genuinely worried about what was going on in that room with the guy who had sepsis. Can that kind of thing spread through the air?

Look, those lung metastases on the brain are incredibly radiosensitive, so it’s really no surprise they receded. You guys acted fast.
As for the sepsis, it all depends on the source. Was it a bacterial infection, or a viral one spread through droplets? Or did he pick up a UTI that allowed bacteria to migrate into the bloodstream?

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ruggedfox11, I am so incredibly relieved to hear some good news from your side! Regarding the sepsis issue, honestly, it blows my mind that they would think it’s a smart move to room a patient fighting sepsis right next to someone with a compromised immune system. It just seems fundamentally flawed.
When my dad was hospitalized, they put him in a room with a guy suffering from pneumonia. That individual actually refused treatment and checked himself out pretty quickly, but I was still sitting there in absolute terror, praying my dad wouldn't catch pneumonia on top of everything else he was dealing with. Luckily, he didn't. I’m choosing to believe your husband will have that same kind of luck. Either way, I’m pulling for you both—go show that monster who's boss!

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He had a transfusion this morning—I'm curious if that provides any immediate boost?—but he still seems to have such little strength. I actually found myself scolding him just a moment ago; he’s basically only moving between his bed and a chair, when he really ought to be up and walking around more. On a brighter note, they adjusted his diabetes treatment to a combination of two different medications, and it actually seems to be working much better! The thing is, we haven't been able to get a second opinion from the specialists over at Jordan—not by phone or email, no matter how hard we try—so I've been sitting here weighing an idea (though I can't tell if it's a bright one or not). I'm wondering if we should request that he be managed by an oncologist here in St. instead of staying under the care of the pulmonologist. Honestly, I feel like I'm losing my grip on what the smartest move is right now.

We actually tried getting my dad transferred over to the oncology department, but it was a total non-starter; every oncologist we spoke to insisted he was strictly under the purview of pulmonology since my primary diagnosis is lung cancer.
He only ever saw the hematology team when things reached a crisis point and he needed an emergency transfusion, which worked wonders for him—honestly, almost instantly—likely because he was already being treated with Medrol there, which seemed to give him that extra boost. In those moments, when his blood counts completely bottomed out, just a single transfusion was enough to get everything back to baseline. Aside from all those transfusions following his fourth chemo cycle, none of them provided any lasting relief beyond that specific day.

Good grief... At this rate, I feel like it’s better not to even ask. They’ll probably just turn me down—maybe citing some policy about peer professionalism or whatever excuse they use these days.
My doctor actually lowered his red blood cell target because they were sitting below the standard range—though, to be fair, they've been running a bit low since he started therapy—and honestly, he feels unsteady whenever he tries to stand up. He’s doing alright in the mornings, but by the afternoon, this wave of weakness just hits him. I truly believe the body just needs its own time to process everything and find its balance.

I was actually told that it isn’t even really about professional courtesy (though I’m sure that plays a part); it’s more that oncologists simply aren't trained in lung diseases to the same depth as pulmonologists, so they tend to stay in their own lane.
A friend of mine who’s a doctor put it perfectly: it’s like asking a surgeon to weigh in on gynecological issues. Sure, they know more about that territory than the average person on the street, but they certainly don't know as much as a specialist gynecologist. 🤷

As for transfusions, that’s the same story we were told—the less you need, the better. Ideally, you always want the body to handle things on its own. We always ended up waiting until the absolute last minute, partly because of that, and perhaps even more so because my dad just refused to go into the hospital until things became truly dire.

ruggedfox11 said:Good grief... At this rate, I might as well stop asking altogether. They’ll probably just pass on it because of some "professional courtesy" or whatever they call it.
My doctor actually raised his red blood cell count because they were running low—though honestly, they’ve been under the limit since he started therapy—and he gets dizzy whenever he stands up. He feels fine in the morning, but by the afternoon, the weakness really starts to hit him. I think the body just needs time to do its thing.

It isn't about "courtesy"; it's simply how the medical hierarchy works in terms of subspecialties. It's the same way urologists handle prostate issues, or how hematologists manage lymphomas and leukemias. In fact, I'd bet dermatologists handle melanomas rather than oncologists.
Try getting in touch with Sandra Karabatic over at the Jordan clinic. She’s a head nurse on that oncology ward and also heads up the Heart Disease advocacy group. She works from 7 to 3, so you could catch her at the unit any day. Call the Jordan facility and ask for her. Since she's a local legend, she’ll definitely help you out if you play that card. Just explain what's going on and mention you'd love for them to take a look at the higher-level lab results. She's a lifesaver.
Fingers crossed for you.

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Angela Wright said:It isn't really about being colleagues—it’s just how things are structured within subspecialties. It works the same way with prostate cancer and urologists, or lymphomas and leukemias treated by hematologists. In fact, I believe even for melanomas, it's usually dermatologists rather than oncologists who take the lead.
You should try reaching out to Sandra Karabatic over at Jordan. She’s a head nurse right there in the oncology department, and she actually serves as the president of the Lung Cancer Heart Disease Association. She works from 7 to 3, so you could likely catch her at the ward any day. Give Jordan a call and ask for her. Since we're all part of the same community here, I’m certain she’ll help you out if you approach her that way. Just explain what’s troubling you and mention that you’d love for them to take another look at the higher-level results. She is an absolute gem.
Anyway, I’m keeping my fingers crossed for you.

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Thanks
I've actually already been in touch with her. She gave me some guidance on which doctor I ought to be looking for, but honestly, trying to coordinate this via email or phone feels like a mission impossible. At this point, my best bet is just to ask her via email if she can forward the test results to the specialists upstairs.

We finally tracked down the culprit behind that weakness, nausea, dizziness, and racing heart—turns out it was a Ventolin overdose. :-)

ruggedfox11 said:We finally figured out why she's so weak, nauseous, dizzy, and has a racing heart—she overdosed on her Ventolin. :-)

Good grief
My daughter goes absolutely nuts on Ventolin; I practically have to pop a Xanax just to deal with her when she's on it.

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I had my own nightmare dealing with the Ventolin; I was shaking like a leaf and my heart rate was absolutely through the roof.🤦 Thank God I finally got past that ordeal—I truly hope I never have to touch it again.

Anyway, we just got the results back from the CT scan of her chest and upper abdomen. After three years of watching and waiting, everything in her lungs remains stable, and her organs all look clear. My mom has been dealing with occasional swelling in one leg lately, which had us worried about a blood clot, so they rushed her in for a Color Doppler. It turned out to be a complete wash—nothing found. Now the recommendation is to follow up with an abdominal ultrasound. Her CRP has dropped significantly over the last two months, falling from 186 down to 3.5, though we are still waiting on the rest of the bloodwork. Aside from her pulmonologist calling me out of the blue one day (for the umpteenth time), even the trio of doctors at the emergency room at Johns Hopkins went over the labs and the history, and they were just as baffled as anyone else as to how my mother is still standing.
As long as they're confused, we’ll take it; we are just happy and grateful that she is doing okay.🎉🙂

Sending nothing but positive vibes to everyone who needs them right now.🙂