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

My heart breaks for my grandfather ;(

Ronald Evans33 said:...Hey everyone, I just wanted to let you all know that my grandfather unfortunately passed away last week... despite fighting cancer and four broken ribs, he actually died from fluid in his lungs....Thank you all for the support...

I am so sorry, please accept my deepest condolences. 😢

It was confirmed today—there's nothing more I can do, and Mom is coming home. HOW am I supposed to organize this? Please help—I have one week to find someone with medical training who can provide 24-hour care, set up home nursing, get her medications, diapers, a hospital bed... what else???
I've never been in this situation before, so I’m asking anyone who—unfortunately—has experience caring for terminally ill patients at home to please give me some advice and practical ideas...
I'm still a bit in shock...

The doctor says Mom maybe has a few more weeks left, if that much...

If you’re in a position where you can afford to hire a medical professional to stay by Mom's side 24/7, then you might honestly find it better to look into a private hospice facility. There are several private options out there that provide wonderful care for end-of-life patients for roughly $2667 a month, depending on the level of service. I really can't stress the word private enough here; to put it bluntly, the state-run facilities just aren't designed with dignity or comfort in mind.

Look, I’m willing to pay—but I want to do it from home. For emotional reasons...

Sam White62 said:Look, I’m willing to pay for it, but I want it done at home. It’s just an emotional thing for me....

Trying to pull that off at home is going to be an absolute nightmare, and you won't have any control over the situation. Honestly, I’m all for home care, but only if you're surrounded by your inner circle. You’ll need a mountain of equipment—everything from a hydraulic hospital bed to specialized pumps and monitors—and when she suddenly needs an IV, you'll be scrambling to call the ER or begging some specialist to rush over just to bridge the gap until the next scheduled visit. Honey, believe me, I'm speaking from experience here: you will exhaust yourself like three Jesuses, and that's not even counting how much she'll struggle. There are incredible hospice facilities out there that have everything perfectly organized, where you can stay by her side whenever you want and as long as you want. For the money you're talking about, you aren't going to get professional-grade nursing at home, and by the time you finally get everything set up, it might already be too late.

Honestly, my heart goes out to everyone who has lost someone to these brutal diseases recently. I have a question for Angela Wright; I know you went through exactly what we’re navigating right now with my mother-in-law. She just finished her sixth round of Temodal today, and she’s been cleared for another six. It’s a relief for us, though I suppose it’s a heavy burden for her to carry. We are just praying that the Temodal is doing its job by keeping the tumor from growing too quickly. I guess I’m wondering if it’s somewhat standard practice with a GBM IV diagnosis to extend the treatment for another six doses after the initial six?
For the time being, she seems to be handling the treatments relatively well; according to her oncologist, she’s actually responding quite favorably to the therapy. Even the MRI results were acceptable to both her and the neurosurgeon—even though the tumor has reappeared at the incision site, it appears to have slowed down, even if it is still there. 🙂 We aren't naive about the diagnosis or the prognosis. We are essentially living life one chemotherapy cycle at a time, one scan at a time. Many of you probably know exactly what I mean. We are trying everything to help her, from nutrition and various supplements to immune boosters and all sorts of other things. Unfortunately, here in Boston, there isn't any psychological counseling available specifically for patients and their families, which is honestly what we need most during times like this. I wish nothing but strength and peaceful days for the patients and their families alike.

Keep pushing with the Temodal as long as the treatment is actually working. Hang in there!

Found a retired nurse available 24/7. Heading out this weekend to get the house ready...

My father-in-law’s PET CT results finally arrived. To save everyone from a wall of medical jargon, I won't paste the entire report here—just the conclusion:

Pathological glucose metabolism is present in the right supraclavicular lymph nodes, within an expansive, slightly infiltrative lesion/lymph node conglomerate located in the upper mediastinum (right paratracheal and paraesophageal areas), the thoracic para-aortic lymph nodes, lesions in the liver and spleen, the aforementioned abdominal lymph nodes, and a tegumentary expansive lesion left of the paraumbilical region, indicating active malignant disease.
The CT also shows two small, FDG-negative irregular intrapulmonary lesions in the upper lobes, which are morphologically atypical for potential secondary sites.

From what I can gather as a layman, there are metastases in the lymph nodes, liver, spleen, and abdominal lymph nodes. However, the rest of this terminology is completely over my head—I have no idea where these things are located or what they actually imply. If anyone could break this down for me, I’d appreciate it.
I’m sending this over to the oncologist now to figure out our next move... I'm not sure if they'll recommend chemo, radiation, or something else. Does anyone happen to know which approach tends to be more effective? I realize the oncologist will make the call, but I’ve always preferred to be prepared for the conversation.

I’m adding the beginning of the report here, as it provides a slightly clearer description:

PET/CT ("low dose" CT):
A whole-body scan was performed, extending down to the proximal portions of the thighs.
Increased activity uptake is noted in small right supraclavicular nodes, SUVmax=2.5.
Pathological activity uptake is visible in an enlarged right paratracheal node, SUVmax=9.4, as well as in several infracarinal, pre-aortic, para-aortic, and paraesophageal lymph nodes, SUVmax=8.4.
Pathological activity uptake is observed in several lesions within the liver and in one lesion in the spleen, SUVmax=11.1.
Pathological activity uptake is present in the celiac region lymph nodes, the hepatogastric ligament area, and the retroperitoneal lymph nodes, SUVmax=13.3.
Pathological activity uptake is seen in an infiltrate within the musculature and under the abdominal wall in the left hemiabdomen at the level of the umbilicus, SUVmax=8.3 (with another possible sub-wall infiltrate at SUVmax=3.8?).

I had a conversation with the oncologist this morning, and the news wasn't good—she mentioned that the disease has spread, and from her perspective, there isn't much more she can do. Her role now is essentially to explain the situation clearly and refer him to an internal oncologist to see if there are any remaining options at all. If that specialist says we've hit a dead end, I will absolutely be seeking a second opinion... does anyone have a doctor they would recommend?
We’re heading to her office this Tuesday, so we'll see what the verdict is.
Even though I knew things were looking grim, this still hit me hard and left me feeling pretty shaken. I'm honestly dreading how my husband and mother-in-law are going to take this news.

Fiza, listen, you need to take those test results straight to Dr. Cepulic before you even think about seeing an internist to discuss a treatment plan. Go to the internist first to hear their take, and *then* confront them with what Dr. Cepulic has suggested. Look, there’s a real chance Dr. Cepulic will propose something specific, while the other doctor might just parrot the same old thing because they lack pragmatic perspective or are just trying to cut corners. Let's be blunt: we can't "cure" your father-in-law at this stage, but we can absolutely use therapy to slow things down and buy some precious time. Remember what we discussed regarding that off-label use of Xeloda? Google it, or better yet, just ask Dr. Cepulic directly.
It is what it is. Just try to squeeze every bit of benefit out of the options available right now. I'm so sorry, dear—hang in there.😢

My mom started on patches today....

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.

Kate Wells44 said:The cancer has spread to the lymph nodes, the liver, the spleen, and the abdominal wall, so chemotherapy is the only way forward. If I’ve understood correctly, your father-in-law had surgery for esophageal cancer, and in those cases, treatment usually centers on cytostatics like 5FU and cisplatin; that's pretty much the standard protocol. Provided he’s in decent general shape and his lab results look okay, there's really no reason not to give that therapy a shot.

Yes, it is esophageal cancer. He actually feels quite alright—he’s eating normally and isn't in any pain at the moment.
Could you tell me a bit more about that specific combination of drugs? Is it administered intravenously or via tablets, and should we be bracing ourselves for severe side effects?
Ivanna also brought up Xeloda.

We’re going to consult with Cepulic first to get a professional opinion before we decide on our next move.
We have an appointment scheduled with the surgeon this Thursday, so we’ll try to get everything else sorted then to avoid making multiple trips all the way from the Midwest.

Fiza Bisofica, check this out: http://news.cancerconnect.com/xeloda...stric-cancers/>

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.

That’s exactly why I shared the link—it looks to me like this combination with Xeloda is much easier to handle. Since they didn't even consider her a candidate for chemo right out of the gate, I’m worried she won't qualify now either under the current Medicare protocol (the oncologist has already made her stance clear). The only shot might be seeing Cepulic privately, provided he thinks there's actually a benefit to going that route.