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Home › Lifestyle › Health › Support for families dealing with cancer and other serious illnesses (Part II)

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

Started by Angela Wright · · 👁 19 views · 3.6K replies

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Participants Angela WrightTaylor Jackson14Edward Grant3stormytinker4restlessowl3Rachel Wood27silvercanyon7goldencrane3neonheron32Gregory Stewart4Brandon Lopez6copperbison4driftingsurfer14feralsurfer72Sandra Carter50Linda Patel21Maria Hughes67Nicholas MyersLisa Lopez75Bradley Scott2Kyle Lee7velvetmoose9Nancy Leemelloworca6 …
Donna Cook57 Donna Cook57 Newcomer
3 messages
joined Oct 2022
#3581 ·
Rachel Gray21 said:He finished chemo this past Wednesday. Now his legs are swollen all the way up past his knees. He’s gasping for air—struggling to breathe. He refuses to go to the ER. Just constant wheezing. He’s taking Furosemide, but he isn't even able to urinate. Sometimes he hallucinates seeing bees and stuff... probably just exhaustion from months of zero sleep, or maybe the meds. It's looking really bad, and I think this might be it... Or maybe the chemo was just too much for him to handle.☹️


I feel for you. My mom dealt with the exact same thing—her legs swelled up so badly she couldn't even walk anymore. She ended up needing diapers, taking Furosemide, and having trouble urinating. The pills barely did anything for her. Eventually, her abdomen started swelling, too. I lost her two weeks ago; she was 72 and had papillary carcinoma of the gallbladder. She had that same gasping breath, and by the end, she was babbling. Sending you strength to get through this...
Anthony Hernandez47 Anthony Hernandez47 Newcomer
1 message
joined Sep 2017
#3582 ·
It's over. He closed his eyes for the last time. He was put on a ventilator yesterday after suffering a heart attack. At least he isn't suffering anymore...
Donna Cook57 Donna Cook57 Newcomer
3 messages
joined Oct 2022
#3583 ·
Rachel Gray21 said:It’s over... he closed his eyes for good. He ended up on a ventilator yesterday and then suffered a heart attack. At least he isn't suffering anymore...

Please accept my sincere condolences. Losing someone you love that much is brutal. My mom and I were incredibly close—we didn't live together, but we talked on the phone constantly. I miss her terribly, and honestly, it hasn't even sunk in yet that she's gone. Just feeling really heavy right now...
crimsoncanyon3 crimsoncanyon3 Newcomer
1 message
joined Apr 2020
#3584 ·
graniteseal2 said:Hi everyone, I’m joining this thread, unfortunately. I find myself here because of my mother (she's 83) and a potential cancer diagnosis she’s facing. We’re based in NYC. I’ll write out the full details below, but for now, it really boils down to one main question:

– which private oncologist (or just generally) in NYC is worth seeing if we have radiology results (an MRI) suggesting a malignant tumor? It looks like there might be metastatic changes in her vertebrae, and the primary tumor could potentially be breast cancer. Basically, I need a recommendation for a solid oncologist who can confirm the diagnosis (or order the necessary follow-up tests first), explain the prognosis, and walk us through the options.

I need to take action; I can't just sit around and watch everyone pass the buck. With the holiday season here, the hospitals seem completely empty of staff.

To give you some context: over the last few months, Mom has had trouble walking and has been dealing with back pain. We went to an urgent care clinic, and they insisted on seeing an MRI of her lumbar spine before they would even touch the pain. To avoid any delays, we went ahead and got a private MRI.

The scan was done about a week ago at a local imaging center using a 3T machine with contrast, focusing on the lumbar spine. The results showed (among other things) "fresh compressive fractures of the L1 and L2 vertebral bodies, suggesting intraosseous, secondary propagation of a primary process (possibly breast?)" and recommended seeing an oncologist immediately. As I understand it, this would mean bone cancer—specifically metastatic bone cancer that started somewhere else, perhaps the breast.

So, my first question, as I mentioned—who should we see? Does anyone have recommendations for a great oncologist? Is it better to go private or wait for a hospital appointment? How long is the typical wait for an oncologist when using a referral through Medicare? And specifically, which private oncologist is actually worth the investment?

My second question—since certain family members are reacting this way—does it even "make sense" to pursue treatment? Mom is 83, and she’s already managing age-related issues like diabetes, heart problems, and high blood pressure. Some relatives are already saying we should look into palliative care or hospice right away (even though we don't have a formal diagnosis yet). Mom herself understands what the diagnosis might be and is handling it quite well, though she might not fully realize how much pain this could eventually cause. So, my second question is: what are your experiences or insights regarding treating malignant tumors in the elderly (80+)? I'm not necessarily talking about a "cure," but rather about stopping the spread, improving quality of life during these remaining years, and everything related to that.

http://www.anovaclinic.com/pre...-immunotherapy
shadowbison75 shadowbison75 Newcomer
1 message
joined Feb 2022
#3585 ·
Rachel Gray21 said:It's over.. he closed his eyes for good. He ended up on a ventilator yesterday and had a heart attack. At least the suffering is done...

Sending my deepest condolences...
I lost my father back on July 30th, I was posting about our journey here too.

The only silver lining is that the pain finally stopped, because he suffered terribly. From the very beginning until the end.
He went quickly, just so fast... 😢
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#3586 ·
I am so sorry; please accept my sincerest condolences. I’m sending all the strength in the universe your way so you can lay him to rest in peace and find the strength to move forward.

Sent from my Samsung Galaxy using Reddit
Nicholas Johnson8 Nicholas Johnson8 Newcomer
1 message
joined Aug 2021
#3587 ·
Hi everyone.
My dad was recently diagnosed with lung cancer, and there's a suspicion it might have spread to his liver.
The diagnosis came via bronchoscopy—they "found some malignant cells"—along with a confirmed PD-L1 mutation (90% of the cells), plus a CT scan showing a suspicious lung lesion about 4 x 4 cm and a questionable spot on the liver.
They haven't pinned down the exact type of carcinoma yet because there weren't enough malignant cells in the sample.
He’s 79, had a heart attack back in 2010, and we've actually been watching this specific lung lesion since 2010 (back when it was just 1x1 cm)... his thoracic surgeon kept insisting it was benign because it grew so slowly. And now, here we are...
Dad is actually doing okay physically—no symptoms at all, considering the suspected stage. He hasn't lost weight, no cough, no pain.
So, here's the thing... We saw the oncologist today, and first things first, he ordered an MRI of the liver to rule out metastasis.
He mentioned that if the liver is clear, the plan is radiation, maybe chemo if Dad can handle it at his age.
But if the metastasis is confirmed, then they move to immunotherapy, since he has that 90% PD-L1 expression.
I'm wondering why we can't just jump straight to immunotherapy regardless of what that liver scan shows? I asked the oncologist, and he said immunotherapy is specifically for metastatic carcinoma.
From what I've read, immunotherapy (Keytruda, or pembrolizumab) shows pretty good outcomes and life extension for cancers with high PD-L1 expression.
Is this just the doctor's preference, or should we be seeking a second opinion, or perhaps getting a biopsy... or is this just how it works?
It feels like we're missing a window for immunotherapy given that PD-L1 level...
Anthony Hernandez47 Anthony Hernandez47 Newcomer
1 message
joined Sep 2017
#3588 ·
I would always seek out a second opinion—for instance, from the Anova Clinic, or perhaps looking into radiochirurgy options in Washington, D.C., through Acibadem or Agram-USL thermal ablation services. No one is suggesting you are obligated to accept their treatment, but they offer free consultations, which provides peace of mind knowing you've explored every available avenue.
Nicholas Johnson8 Nicholas Johnson8 Newcomer
1 message
joined Aug 2021
#3589 ·
Thanks for the info.
I'll keep it all in mind—for now, we’re just waiting to see if there’s any metastasis in the liver... hoping that if it hasn't spread, shrinking the tumor with radiation might open the door for surgery or ablation later on.
Anthony Hernandez47 Anthony Hernandez47 Newcomer
1 message
joined Sep 2017
#3590 ·
Not much to say. I just want to wish you all the best. If I were in your shoes, I would definitely seek out a second opinion. Take my father, for example: he had two MRIs done at the Mayo Clinic where they told him everything was fine, but then he went to a private facility for another MRI, only to discover he actually had bone metastases. Anyway, wishing you luck once again. I hope your journey involves as little pain as possible.
graniteseal2 graniteseal2 Newcomer
1 message
joined Mar 2022
#3591 ·
Hello,

I’ve posted here before—we took my mom to see an oncologist at the Mayo Clinic, but things are still pretty unclear. The doctor specializes in mesenchymal tumors, which covers melanomas, and Mom is being treated for brachytherapy melanoma in her eye. He wants to admit her for a few days to run a CT scan on all those "suspicious" areas and organs, potentially followed by a biopsy and some blood work. We’re just waiting for an available bed right now.

Just a practical question, if anyone knows—the paperwork says she needs a negative COVID PCR test to be admitted. How old can that test actually be? I mean, how many days prior does it need to be done? If anyone has any info, I’d really appreciate it.

Honestly, I’m more worried about Mom withdrawing into herself lately. She’s barely communicating—just this heavy apathy, lying there constantly... I’m not sure how to "bring her back" to her normal self (you know, how she was before we heard the news about the potential metastasis).
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#3592 ·
Nicholas Johnson8 said:Hey everyone.

My dad was recently diagnosed with lung cancer, and there’s a suspicion of liver metastasis.

The diagnosis was confirmed via bronchoscopy, where they "found some malignant cells," along with a PD-L1 mutation (90% expression). We also had a CT scan showing a suspicious lung lesion about 4 x 4 cm, alongside a suspicious lesion in the liver.

The exact type of carcinoma hasn't been confirmed yet because there weren't enough malignant cells in the sample.

My dad is 79. He had a heart attack back in 2010. We've actually been monitoring this lung lesion since 2010 (it was 1x1 cm) with a thoracic surgeon who kept insisting it was a benign process because it was growing so slowly. And now, here we are...

Dad is in good general health—he isn't showing any symptoms (considering the suspected stage), he hasn't lost weight, no coughing, no pain.

So, here's the thing... Today we saw an oncologist, who first sent us for an MRI of the liver to rule out whether that metastasis is actually there.

He told us that if there’s no metastasis in the liver, we should go with radiation, plus potentially chemotherapy if his age allows him to handle it.

If the metastasis is confirmed, then he goes on immunotherapy because of that 90% PD-L1 expression.

I’m wondering why we can't just start immunotherapy immediately, regardless of what that liver lesion shows? I asked the oncologist, and he said immunotherapy is only administered for metastatic carcinoma.

From what I've read, immunotherapy (specifically Keytruda/pembrolizumab) shows pretty good outcomes and life extension for carcinomas with PD-L1 expression.

Is this just the oncologist's personal preference, should we seek a second opinion, or is it simply how things work?

I feel like we're missing a window for immunotherapy given that PD-L1 expression.

This comes down to a registered indication covered by Medicare. Regardless of what the clinical studies say, Medicare and Big Pharma have agreements in place where therapy is only approved at their expense for metastatic diseases. It’s the same deal you see with biologics for arthritis—they’d rather wait until a person is completely deformed and becomes an even bigger burden on Medicare than they would expand the indications so the patient could actually live a productive life.

It raises a logical question: why not, and can the patient just pay for the therapy themselves? The answer is that someone clearly has an incentive for the first part, and for the second, you can't exactly go to a public hospital and receive treatment with a drug paid for out of your own pocket. Because of laws dating back to the era of political corruption, anything a hospital doctor prescribes on a standard prescription that isn't on the approved list of drugs for a specific indication is funded by the hospital's budget. Naturally, oncologists, fearing repercussions (since the drug is expensive and strains already thin hospital budgets), won't do it—they just wash their hands of it and follow the "rules."
Of course, some doctors operate on a basis of trust with the patient, believing the patient won't sue the hospital if the doctor provides treatment in that "gray area" using a drug the patient bought privately. The other option is private healthcare, which is much more expensive.
In short, it's one of those beauties of the American healthcare system that comes bundled with a diagnosis—and sometimes, the system is harder to handle than the illness itself.

Sent from my Samsung using Reddit
Nicholas Johnson8 Nicholas Johnson8 Newcomer
1 message
joined Aug 2021
#3593 ·
Thanks for the detailed breakdown.
So it basically boils down to us having to "hope" his cancer has already metastasized just so he can qualify for immunotherapy—which, from what I can see, actually works...
Or maybe there’s some kind of clinical trial available, if those even exist here in the States?
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#3594 ·
Nicholas Johnson8 said:Thanks for the detailed breakdown.
So what you're saying is we basically have to "hope" my father actually has metastatic disease just so he can qualify for immunotherapy (which, from what I can see, is actually effective).
Or maybe there's some kind of clinical trial available, if those even exist here in the States?

Either way, don't go pinning your hopes on that.
As for studies, you can check on the websites—there’s a search tool where you can look up by drug or diagnosis, and it'll give you a list of all active trials, the eligibility criteria, and contact info.
Nicholas Johnson8 Nicholas Johnson8 Newcomer
1 message
joined Aug 2021
#3595 ·
Sure, I was being a little sarcastic—given how much this whole thing lacks logic...
Thanks for the link!
coastalmarlin21 coastalmarlin21 Newcomer
1 message
joined Feb 2023
#3596 ·
Hey everyone,

I’ve got some Vidatox drops that my dad, unfortunately, didn't get a chance to actually use. A friend brought them over for me from Cuba—bought directly at a pharmacy there.
The expiration date is 12/2024, so I’m happy to give them away. I just don't want them ending up in the wrong hands or having someone try to turn a profit on them, because the prices they charge here in the States are absolutely insane...
graniteseal2 graniteseal2 Newcomer
1 message
joined Mar 2022
#3597 ·
Hello,

I’ve posted here before—my mother is currently being evaluated by oncology, and they're planning a biopsy. It involves bone tissue from her lumbar spine area.

I was wondering if anyone has any experience with this specific procedure? They are also looking at performing a vertebroplasty at the same time, which means she would likely undergo general anesthesia.

She is 84 years old and has some heart issues. It feels a bit risky, I guess.

If anyone has any insight, I’d appreciate it.
Susan Sanders59 Susan Sanders59 Newcomer
1 message
joined Jun 2010
#3598 ·
Hi everyone.

My dad just had a colonoscopy, and they confirmed a colorectal tumor. The whole thing started because there was blood in his stool... They took a biopsy, and the results came back showing adenocarcinoma...
I'm attaching the lab results below. For the most part, everything looks okay. His tumor markers are steady, except for the ones related to his lungs. If anyone here knows how to interpret these, please help me out... He’s had these markers checked three times over the last year, and they were always normal. My mind is racing and I'm starting to worry about lung metastases... On the other hand, he’s dealt with two bouts of pneumonia this past year. During the first one about a year ago, he actually spent three weeks on oxygen due to COVID. I’d assume an X-ray would have picked up anything major, especially since he’s probably had about ten scans in the last twelve months. He’s scheduled for a CT scan on March 1st. Thanks.

Alpha globulin 1 is 5.2 (ref. range 5), and 3.7 (ref. range 3.5), plus the NSE marker is 23.7 (ref. range div>
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#3599 ·
Susan Sanders59 said:Hi there.

My dad just had a colonoscopy that confirmed colorectal cancer. The whole thing started because there was blood in his stool... They took a biopsy during the procedure... The pathology report says adenocarcinoma...
I’m attaching the lab results below. For the most part, everything looks okay—the tumor markers are stable except for one related to the lungs, so if anyone knows how to interpret this, please help... He’s had these markers checked three times over the last year and they were always normal. Reading this has me spiraling... I can't stop thinking about potential lung metastases... On the flip side, he’s dealt with two bouts of pneumonia in the last year, and after the first one, he was actually on oxygen for three weeks due to COVID complications. I assume an X-ray would have picked up anything major since he’s probably been imaged at least ten times this past year. He’s scheduled for a CT scan on March 1st. Thanks.

Alpha globulin 1 is 5.2 (ref range 5) and 3.7 (ref range 3.5), and the NSE marker is 23.7 (ref range div>

What else does it say next to the adenocarcinoma diagnosis? Transcribe everything.
NSE can be elevated due to various different lung conditions.
They’ll run more tests to rule out metastases. Most likely they aren't there, otherwise other markers would be elevated too.

Sent from my SM-G960F using Reddit
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#3600 ·
It’s totally expected for alpha globulin to be linked to a tumor.

Sent from my Samsung Galaxy S9 using Reddit

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