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

Rebecca King72 said:Chicken feet? Why—please explain??? Like, actual chicken feet?? What's even in them? I'm assuming they're cooked? Is this supposed to help improve blood counts? As for bacon... I know about that—I've seen it firsthand, because several of my friends fighting cancer swear by eating bacon to help them through it. Please, could you clarify this bit... my son is dealing with severe anemia—his ferritin is down to 2—so if anything helps, we'll try it... Take care!

Both of them work to boost the white blood cell count—that’s been verified.
As for managing anemia, we used a blend of beets, carrots, apples, and honey, all paired together with B-complex vitamins (specifically B12).

Joshua Kim69 said:The CRP was tested this morning and it's sitting at just 5.1—not too bad, considering the reference range is 0 to 5. Over the last couple of weeks, there's been a bit more coughing, they're getting tired faster, and feeling a little less steady on their feet 😢
They still manage to finish their usual walk, though it requires stopping several times to catch their breath and rest. Tomorrow, they have another dose of chemotherapy scheduled from the fifth series, and toward the end of the month, there will be a follow-up appointment which will likely determine if they can move on to the final round of chemo.

It’s probably just a virus, but honestly, this could also just be the "new normal" for oncology patients. Did the doctor happen to comment on anything?
If they are currently on corticosteroids, those can actually cause white blood cell counts to spike as well.

ruggedfox11 said:It could just be a virus, though maybe it’s also just a normal thing for oncology patients. Did the doctor say anything about it?
If they're taking any corticosteroids, those can actually lower white blood cell counts too, I guess.

Regarding meds, he's using Atrovent (along with some vitamins), but he isn't really taking Emaner anymore. The doctor mentioned that his CRP levels look fine, but that was pretty much it.
I suppose we'll just have to wait until the end of the month to see how the blood work looks and what the oncologist thinks, and he's actually heading to a neurologist soon because of some weakness in his legs.
They haven't called him in for the bone scan yet.

Rachel Williams said:Angela Wright - I feel like you've shared the link to the clinical trials database a few times already, but now I can't find it anywhere on here or even through a quick search online 🤦 Could you please post it again?

https://clinicaltrials.gov/

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Greetings. I am asking anyone who currently has or has previously dealt with someone suffering from glioblastoma to reach out via private message—I am looking for advice and will respond to everyone... I would be immensely grateful. Best.

My dad just went through another major surgery—one of those massive ones involving organ removal and reconstruction. This time they had to resect part of his liver. He’s recovering okay, but there's a catch. It's been two months since the procedure, and he still can't pee without using a catheter. Dealing with both a stoma and a catheter at the same time is a total nightmare. On top of that, the donor site on his leg where they took the skin graft is healing incredibly slowly. Has anyone dealt with catheter issues like this, or does anyone have any advice on how to speed up wound healing?

Hi everyone,
I’m looking for some advice regarding my father’s health situation.

My dad is dealing with CLL, which is currently being managed without active therapy. Because of some intense back pain, he underwent an MRI, and the results suggested "metastatic lesions resulting from CLL." However, we are getting conflicting reports: his hematologist insists the spinal changes aren't linked to the CLL, while the neurosurgeon disagrees. It’s incredibly frustrating trying to navigate this because time is ticking. He’s been stuck at home for a week now, barely able to move due to the pain. He was extremely active until just last week, but now he's mostly sidelined by medication. To add to the confusion, his pulmonologist says everything looks fine on their end and believes the issues are indeed related to the CLL.

We are currently waiting on bone biopsy results, and he’s heading in tomorrow for tumor marker blood work. I’ve also requested a PET/CT scan and am waiting for an appointment, plus I plan to take him to a private neurosurgeon for a second opinion. Lately, he’s been developing skin blotches that itch occasionally before fading after a few days, and I’ve noticed he bruises quite easily—I’m not sure if that’s a significant detail to mention.

Is there anything else I should provide? Perhaps I should post the text from the MRI report? It feels surreal that two different departments are essentially arguing over who is responsible for his care. Time is slipping away, and it's hard to see him like this; he's stuck in bed relying on meds just to get through the day, but that isn't a long-term solution.

If anyone has any advice, questions, or insights, please let me know. THANK YOU div>

Dana Martin87 said:My dad just went through another major surgery—one of those big ones where they have to remove organs and stitch everything back together—and this time they had to take out part of his liver. He’s recovering okay, mostly. But here's the thing: ever since the surgery, he can't pee without using a catheter. It’s been two months now. Dealing with both a stoma and a catheter... man, that is just tough. On top of that, the wound on his leg where they took the skin graft for his abdomen is healing incredibly slowly. Has anyone dealt with catheters before? Or maybe any ideas on how to speed up wound healing?

Dana, is anything still oozing from the wound, or is it dry? Regarding the catheter—it’s possible some nerves near the bladder were affected during the procedure, which would mean a much longer recovery road ahead. Just make sure you're changing the catheter regularly and having him drink plenty of fluids. Also, maybe check in with a urologist occasionally—there's a real risk of a UTI when you're dealing with a catheter.

Dana Martin87 said:My dad just went through another major surgery—one of those massive ones where they're basically rebuilding him from scratch. This time, they had to take out part of his liver. He’s recovering okay, but there's a catch: since the procedure, he can't pee without using a catheter. It’s been two months now. Dealing with both a stoma and a catheter is a nightmare. On top of that, the donor site on his leg—where they took the skin graft for his abdomen—is healing incredibly slowly. Does anyone have experience with catheters, or maybe some advice on how to speed up wound healing?

Try Dermazin ointment. Honestly, anything with silver ions tends to kickstart the healing process.
As for the catheter situation—is the issue that he can't hold it, or is he physically unable to go at all?

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Hey everyone, unfortunately, I guess it’s my turn to join this thread...
My dad just had surgery for colon cancer and was recently discharged from the hospital. The discharge papers don't mention anything about the biopsy, and we haven't received the actual pathology report yet. Verbally, they told us the margins are clear and the lymph nodes look good, meaning it hasn't metastasized. None of the tests we did before the surgery pointed toward any spread, either. Right now, we’re just waiting for the oncology board to meet and decide if he actually needs chemotherapy or not. I’m not sure if there's a specific timeframe for when patients usually get those biopsy results, or if that's why we're still in the dark.

Things got pretty messy for Dad after the surgery; it took over a month for him to finally come home, and he ended up going under the knife three different times in total. The doctors here are incredibly tight-lipped—we honestly learned more from reading the discharge summary than from actually talking to them, since "getting information" basically means hovering in the hallway and trying to catch a doctor by the sleeve if you happen to see one. Does anyone here have experience translating these discharge summaries? There’s a ton of medical jargon that we can't quite wrap our heads around, especially how all these different terms actually affect each other.

Morgan Edwards4 said:Hey everyone, unfortunately, I’m joining this thread too...
My dad had surgery for colon cancer and was recently discharged from the hospital. The discharge papers don't mention anything about the biopsy, and we haven't received the actual pathology report yet. Verbally, they told us the margins are clear and the lymph nodes look good—meaning no metastasis. None of the tests done before the surgery suggested any spread either. Right now, we're just waiting for the multidisciplinary team meeting involving oncologists to decide if he needs chemotherapy or not. Is it possible that's why we haven't seen the biopsy results yet? I'm not sure at what point they typically hand those over to the patient.

Things got pretty messy for my dad after the surgery; it took over a month to get him out of the hospital, and he actually ended up having three different operations. The doctors here are incredibly tight-lipped with information. We honestly found out most of what happened just by reading the discharge summary, because when it comes to "updates" (which basically means standing in the hallway trying to catch a doctor by the sleeve if you see one), they tell us absolutely nothing. Does anyone here know how to help me translate the discharge papers? There are so many medical terms we don't understand and don't realize how they all impact each other.

The pathology report usually takes about ten days after the procedure, and it should have been included in the discharge paperwork if you didn't receive it separately. Regardless, you have every legal right to request it directly from the hospital.
Post the discharge summary here. We have some doctors checking this thread, and even us laypeople can probably make sense of some of it.

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Thanks so much for getting back to me. The doctor gave us a quick update in the hallway saying the biopsy came back clear, but we haven't actually seen any official paperwork yet, and I don't see anything about it mentioned in the discharge summary either. We might have to wait until after the multidisciplinary team meeting next week when they decide on the actual game plan for treatment. Honestly, we’re still totally in the dark regarding what stage the cancer is at...
I'm dropping links to the discharge papers here since the text is way too tiny to read otherwise
Page
Page
The discharge diagnosis also lists it as c18.7 malignant neoplasm...

What isn't clear?

About half of it 😁
The doctors are just incredibly vague with their info; for instance, we only found out from the discharge papers that they actually had to remove his appendix, too, and that he was in critical condition following that last surgery. Honestly, a lot of this medical jargon goes right over our heads, and even Google isn't giving us any real answers. We’re also totally lost on how all these different issues tie together or what the actual cause-and-effect is regarding everything he’s been through, let alone how he’s doing overall right now. When he first went into the hospital, the prognosis looked great—the doctors figured everything could be handled via laparoscopy and he’d be back home in five or six days. Instead, he’s leaving the hospital in a wheelchair because he’s just so completely wiped out by the whole ordeal. Nobody ever bothered to explain to us why the laparoscopy failed or why all these complications happened after the surgery in the first place.

I totally forgot to mention that they told us his stoma is just temporary and they’d try to reconnect the bowel in a few months, though honestly, we haven't seen a single word about that in this discharge summary. Now we're just sitting here wondering if they've actually given up on the idea or if it just wasn't important enough to include in the paperwork. To be honest, I'm even thinking we might "finally" get the actual discharge papers once that medical board meeting to decide on the chemo is over.

Morgan Edwards4 said:Thanks so much for the reply. The doctor told us in the hallway that the biopsy was fine, but we haven't received any paperwork yet, and I don't see it mentioned in the discharge papers. Maybe we'll get it after the multidisciplinary meeting next week when they decide on the next steps for treatment. We don't even know what stage the cancer is...
I'm posting links to the discharge summary because the text is otherwise too tiny to read.
Page
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The discharge diagnosis is also c18.7 malignant neoplasm...

In my opinion, the pathology report isn't finished yet.
Did you have your follow-up on January 12th? Was there really nothing at all you could discuss with the doctor about this?
A biopsy is never "fine" if the diagnosis comes back malignant. That is a completely nonsensical answer.
You need to know the specific type of malignancy, the grade, and the stage—all of which are detailed in the pathology report.
Demand it from the doctors and insist. I suggest requesting consultations; go ahead and make a scene at the clinic doors if you have to, just to get some decisive answers.

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At the check-up, they basically just told us everything was healing up nicely and gave us a quick update about the upcoming tumor board meeting, and that was pretty much it. Honestly, if you haven't lived through this, I can't even begin to explain how incredibly clinical and detached these doctors can be. They didn't even mention the biopsy results until I actually cornered one of the doctors in the hallway and asked when we might hear anything. He just looked at me and said the results had been ready for ten days before breezing past me. So, there I was, hovering in the hallway like a total creep, just waiting to catch him again so I could ask what the actual findings were, and only then did he finally let slip that the margins and lymph nodes were clear. And don't even get me started on the lack of communication; it’s like there’s no central hub for information at all. You just show up like an idiot and spend half your visit pacing the halls, praying you'll run into the specific doctor you need at just the right moment. I didn't redact the patient and doctor names by accident, either. My point is, we ended up learning most of the vital info from the discharge papers—which, let's face it, aren't exactly easy for a layperson to decipher. This isn't a direct shot at anyone here, just my general rant against the entire healthcare system. To top it off, I tried asking a doctor for some advice regarding my dad's care at home, and he basically talked down to me, acting like I shouldn't even have the nerve to ask such a question since it wasn't "their problem." Look, I get that it's technically outside their scope, but I'm certainly no physician, so I was looking for a bit of guidance on how to handle the situation. Ugh... everything we've dealt with involving them over this past month is way too much to dump on this forum in one go.

Morgan Edwards4, wasn't that at the hospital in San Francisco? Even there, they don't offer much in the way of detailed explanations or real clarity.

Nah, that's not what we're talking about, it's not even a matter of a split 🙂

Morgan Edwards4, they're pretty much the same everywhere, so don't let it get to you. Not everyone, of course, but the vast majority follow the same pattern.
I actually had someone tell me once that I was being "brutal," and I just looked them right in the eye and told them that our healthcare system is far more brutal than I could ever be, or even the disease itself.
Jane is absolutely right, and given her wealth of experience, I’d say listen closely: be persistent. Call them, ask questions, and make it your mission to understand both your rights and the specifics of the illness.
We all hit that wall eventually—that moment where you feel completely helpless, hopeless, and stuck wondering if there was something more you should have done.
Just keep pushing... honestly, being relentless is the best advice I can give you in this situation.
If you have the chance, try to reach out privately to dig deeper into the specifics of the situation and see what actual steps you can take.