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

Olivia Gray54 said:I never thought I’d reach the point where I actually felt the need to post something on this thread, but life just has a way of being completely merciless and not giving you any warning... Anyway, we found out today that my mom has pancreatic cancer. 😢

It all started with some pain in her spine—specifically just below the right shoulder blade—this dull, nagging ache that wouldn't quit. She just kept complaining about back pain and trouble breathing, then she lost her appetite and started wasting away. My brother and I both thought it was weird, especially since the doctors basically brushed her off, telling her, "You're fine, ma'am, it's just psychosomatic; go get some spinal therapy, and here’s a cocktail of meds for your nerves..." Honestly, just total garbage doctors say when they have no clue what's actually going on. So, she took those pills for a week or two, went to her massage appointments, but that appetite just wouldn't come back. That’s when the alarm bells went off for us. We started Googling her symptoms, and for him, it came up as liver cancer, but for me, it was pancreatic. Since everything is centered in the abdomen anyway, we rushed her to a private clinic for an abdominal ultrasound and—of course—they found something near the pancreas. That was last Friday; everything has been moving at light speed since then: getting her hospitalized (we had to pull some strings because our local hospitals won't admit you unless you're practically on your deathbed), the CT scan, and then this devastating news... She’s heading into surgery this Thursday; they’re going to try to remove the entire tumor since it hasn't metastasized to other organs yet, but the prognosis isn't great... What hurts the most is that she had a routine checkup back in March and everything was perfectly normal—the report said the pancreas looked healthy and...

And now I’m sitting here wondering: how am I supposed to cope with the fact that my other parent has cancer, and the absolute worst, deadliest kind? The kind where the chances of survival feel non-existent? My dad passed away five years ago from lung cancer; he was gone within three weeks of being hospitalized. He smoked his whole life, so we understood why it happened, but Mom wasn't in any risk group for pancreatic cancer. She’s never been sick, never even stepped foot in a hospital in her sixty years. No smoking, hasn't touched coffee in 15 years, no alcohol, no diabetes, no obesity, no family history of cancer... NOTHING. So how am I, at 25, supposed to find the strength to fight, to keep fighting? I'm not usually the emotional type—I've always been steady as a rock—but this is just too much...😢

Richard, pancreatic cancer is brutal, but it isn't untreatable, especially if caught early, and it sounds like that might be the case for your mom. The fact that she’s already scheduled for surgery is a good sign, and if you say it went okay, it likely means they were able to get it all out, which is also a positive. Now you just have to wait for the pathology results, see if the lymph nodes are clear, and then start the fight.
Don't let the dark thoughts take over. It won't be easy, but nothing is lost yet, and your mom could still live many more years without signs of illness, especially given the kind of character you described.
The fact that you and your brother reacted the way you did prevented this from being discovered when it was too late to act, so you actually have plenty of reasons to stay optimistic. I'm keeping my fingers crossed for you guys that everything turns out alright. 🙂

My dad is also fighting cancer—occult microcellular (you can't even see it on the lungs)—with metastases in the liver and bones. Over this past year, he's gone through 12 cycles of chemo, and he had a follow-up CT on Tuesday; the results showed a significant regression in the size and number of liver metastases, his lungs are clear, and his bones are stable.

To be honest, Dad actually gained about 45 pounds over this past year—which is a huge shift considering he dropped almost 70 pounds right when the illness first hit. He’s actually feeling pretty good now; you wouldn't even know he was sick if it weren't for him being a little more wiped out than usual, but honestly, given the whole situation and the anemia, that's not surprising at all.

Neither of us ever threw in the towel, and neither did Dad—even after they gave him just a month to live because things were looking so grim initially.
That’s why I’m telling you, don't let the negativity get to you. Sadly, the reality is what it is—you can't change the circumstances, so you just have to grit your teeth and fight with everything you've got. I'm really rooting for you to have many more wonderful years ahead with your mom.🙂

Rachel Wood27, this is incredible news! 🙂 It really sparks some hope, especially considering how aggressive the cellular makeup of lung cancer can be. They often call it the "100-day window" because, more often than not, that's when people succumb to metastases in the liver or brain... but your dad has absolutely shattered every single statistic in his path. It’s an absolute landslide, honestly. 😉

Thanks everyone for the kind words, trust me, it means the world to me.

Unfortunately, during the surgery, they found a few nodules on her liver and stomach, so there's been some metastasis. But man, my mom is a total warrior. She told all the nurses and doctors straight up: don't even bother coming into her room if you're planning on being grumpy. She’s like, "only smiles allowed in here." 😍 She's on an IV right now, getting some pain meds. My brother and I are visiting her every single day, just telling her how much everyone is rooting for her and how millions of people are sending those good vibes her way. And honestly? The people who overdo the drama and act like she's already gone—I'd love to just choke them. I can't stand that kind of energy... maybe it's because I'm just not built that way. No matter how much of a shock this is, I've completely wiped out all the prognoses, statistics, and percentages. My mom isn't some statistic or a number on a page. You just fight, and that's that. No extra philosophy needed.

@Rachel Wood27/">@@Rachel Wood27, I am so relieved to hear your dad has put on some weight, that is such a great sign. 🙂 I truly believe in the power of positive thinking. Once someone gives up and just starts dwelling on the end, that's when the battle is really lost... Give your dad my best and tell him it made my day to hear he has the mindset of a winner. That's phenomenal. 🙂

When we found out after the PhD results came back that we were dealing with microcellular, my head was just spinning—thinking about a 100-day cancer timeline—and by then, my dad was already in critical condition. His liver enzymes were over 400, he had jaundice (bilirubin over 100), and because of bile duct obstruction caused by the growing metastases, there was a serious question of whether he could even handle chemo. In cases like that, the treatment becomes incredibly toxic to the liver since the body can't clear it through the bile.
In my dad's case, as brutal as it was dealing with one of the most aggressive tumors out there, the silver lining was that microcellular actually responds well to therapy—and honestly, I think that’s the only reason they even gave him a shot. They started him on just 20 mg of cisplatin daily for 5 days, basically just to see if they could do anything, because nobody expected him to be strong enough to start a second cycle in just three weeks. For comparison, today he’s taking 130 mg of cisplatin in a single day plus 1200 mg of etoposide (which is the standard PE protocol for microcellular).
And man, he didn't take this lying down from the start. He told me recently that he just knew he was going to pull through somehow and wouldn't let himself die, despite the horrific spinal pain from the metastases. He was on 100 mcg patches and morphine tablets; he couldn't get out of bed for two months and lost 30 pounds. But today? He isn't using anything for the pain. He hasn't needed a patch since month one. Sure, his back aches here and there, so he'll take some Lumidol (since he can't take anything else due to an ulcer), but it's very rare.

We are fully aware of what kind of disease this is, and unfortunately, we know my dad can't be cured—not since he has metastases in all his bones besides the liver—but who knows how much longer he can live if the disease stays under control like it has been. Every person is their own story, and everyone reacts to therapy differently, but now I can say with absolute certainty how much mindset matters, especially the patient's mental state.

That’s why I always tell everyone: fight until the very last second. Get ten different opinions if you have to. My dad was essentially written off at our local community hospital; they told us there was nothing they could do and wouldn't even perform a liver biopsy to confirm the tumor type, until we finally took him to Washington, D.C., and that's when everything actually started moving.

I know what the prognosis looks like for microcellular, but I try not to dwell on it too much and just take it one day at a time.
Right now, my biggest struggle is trying to get Dad to drink more fluids. For the first time since starting chemo, his creatinine has spiked to 166 because of the cisplatin (it should be 125 max). He barely manages a liter a day, even though he needs at least two—and really needs three while on chemo—but he's being as stubborn as a mule. 😁

I’m dealing with my mother’s situation right now, and honestly, I have no idea which way to turn. 🤷
The latest bone scans show metastases near adjacent vertebrae, and the results are significantly worse than the last ones. Her appointment with the oncologist isn't scheduled for another two months. To make matters worse, the only oncologist at the General Hospital is heading out on vacation for a month. The only help we can get is through an internist, but they don't have the authority to prescribe anything necessary.
I’m wondering if it would even be possible to take her to a private oncologist to see if they could start chemo immediately, though I assume she’d have to cover the entire cost herself. 🤷

feralridge3 said:I'm talking about my mom here—I honestly don't know which way to turn. 🤷
The latest bone scans show metastases near adjacent vertebrae, and the results are significantly worse than the last one. Her oncologist isn't available for another two months. The only oncologist at the General Hospital is taking a month-long vacation. The only help we have right now is an internist, but he can't prescribe anything specifically for this.
I'm not sure if it would even work if I took her to a private oncologist to get chemo started—I assume she'd have to foot the bill for that herself. 🤷

I definitely wouldn't sit around waiting for an oncologist to come back from vacation. There’s a highly recommended private oncologist, Dr. Jordan, based out of Washington, D.C. (you can find his info online), so your first move should be calling him to see what the next steps are.
And honestly, even if he did prescribe a specific therapy, I don't think she'd actually have to pay for it out of pocket. From what I understand, she should still be eligible for coverage regardless of whether she's seeing a private specialist or not.
Usually, Dr. Jordan sends his patients over to the main hospital for their actual chemo sessions.

Personally, I’d also try to get her current oncologist on the phone just to ask for some quick advice.

Richard Martin5, give this article a read if your English is up to par—honestly, I think it might give you guys a massive dose of hope. 🙂

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3177791/

feralridge3 said:It’s about my mom, and honestly, I don't even know which way to turn here. 🤷
The latest bone scans show metastases near adjacent vertebrae, and the results are significantly worse than the last ones. Her oncologist appointment isn't scheduled for another two months. To make matters worse, the only oncologist at the local hospital is heading out on vacation for a month. The only help we have right now is an internist, but he doesn't have the authority to prescribe anything heavy.
I'm wondering if it would even be possible to take her to a private oncologist to get chemo started, though I assume she'd have to foot the entire bill herself. 🤷

In my opinion, you aren't looking at chemo; you're looking at radiation, and you need to get that moving ASAP! I'm not sure if a private doctor can actually authorize radiation treatment. You'll likely have to load her up in the car and drive all the way to Washington, D.C., or somewhere similar—there really isn't much other choice. 🤷

Rachel Wood27 said:I definitely wouldn't sit around waiting for an oncologist to get back from vacation. That private specialist everyone raves about is Dr. Sammy based out of Washington, D.C. (you can find his info online), so you could at least give him a call to see what the next steps should be.
If he were to prescribe some kind of therapy, I don't believe she'd have to pay out of pocket; from what I understand, she’s entitled to covered treatment regardless of whether she sees a private specialist or not.
By the way, Sammy usually sends his patients over to the main hospital for their chemo sessions.

Personally, I’d try to get a hold of my own mother's oncologist on the phone just to ask for some advice.

Right, I completely forgot that patients actually have the right to seek a second opinion—see, I see how it is. But honestly, calling a woman who is clearly running herself ragged because she's working solo, especially with the number of oncology patients climbing every day... I just don't have the heart to do it. She’s probably counting down the minutes until her vacation just to catch a breath after a pace like that.
For now, I can afford the private route, so I’ll make the call.
To the main hospital? It would be a total joke if we ended up seeing the exact same oncologist. 😍

Angela Wright Asks:
I honestly don't think chemo is the right move here; it feels more like radiation and what was discussed earlier might be the way to go. I'm just not sure if her private doctor even has the authority to prescribe radiation treatments. You’ll probably have to drive her all the way up to Washington, D.C., or something along those lines. I really don't know what else you'll have to do. 🤷

She was supposed to undergo radiation therapy after completing a total of ten rounds of chemotherapy. They kept telling her it was the next step, but then they just backed out at the last minute. 🤷
I took it to mean that everything had already gone to hell, so there was honestly no point in putting him through the agony of radiation.
It makes absolutely zero sense for a private practitioner to handle the transcription work only for the hospital to pick up the tab and cover the costs themselves. There is simply no logic to it. 🤷 I know firsthand that in situations like this, the waiting period is absolutely soul-crushing. I might start by offering a "different perspective," and then we'll just see where things go from there.

feralridge3 said:Is that for Rebro? It’s a total joke that we’re stuck with the exact same oncologist. 😍

Don't mess around here. Even if you end up seeing the exact same Dr. Zhivkov, my advice is to be completely upfront with him. Call him out, lay the whole situation on the table, and tell him exactly what’s happening so he can actually help you. Mom has to step up. Right away. We need to get that radiation treatment moving. If they push this back any further, one wrong move is all it takes to blow everything sideways. She could end up with a broken spine and be paralyzed for life. When you're dealing with bone metastases, targeted radiation is really your only real move. As far as I know, there isn't any chemo that's going to do much for you there.

Chemo can shrink bone metastases a little bit, but honestly, not by much. With my dad currently going through chemo, we haven't seen any real improvement regarding the spots on his bones—the scans have just stayed stable every single time so far (thank God for that, and I really hope it stays that way).
The only actual progress we’ve seen was in a section of his lumbar spine. We had one palliative radiation session there just to manage the pain, and that was actually enough for the vertebrae to partially repair themselves and make the pain go away.

Unfortunately, they can't just radiate his entire torso to clear out the rest of the bone metastases; they'll only go back in for radiation if he's actually in pain.

Back when we first arrived at the hospital, I asked the doctor about a spinal brace—you know, a support belt—but she told us we could look into it, though she didn't see an immediate risk of a fracture after looking at his CT scans. We went ahead and bought the brace anyway, but Dad just won't wear it.
As far as the spine goes, the CT shows some minor fractures in those lumbar vertebrae—that's been the case since the start—which caused him to lose maybe 3 cm in height, but nothing else major has happened.

You really have to be extremely careful. We don't let Dad do anything physical at all right now. Even though he’d love to be active and do everything he used to, he knows he has to hold back so he doesn't end up stuck in a wheelchair.

I honestly don't think Mom's doctor would mind if you gave her a call to ask for advice, especially if you guys have built up a decent rapport with her.

My father-in-law has finally livened up a little. They’ve adjusted his "diet," and he’s now getting a mix of glucose and something similar to Ensure, though it's loaded with all sorts of extra nutrients.
As for the change in how the nurses act; she came by a couple of times yesterday just to ask, "Sir, is everything alright? Do you need anything at all, just say the word..." It’s honestly pathetic that you have to resort to threats (or grease the wheels with coffee and sweets) just to get them to treat a patient like a human being.
His doctor is back from vacation on Monday, so we’ll finally get some clarity on a concrete meal plan. This whole process has been dragging on far too long; it’s time to actually start the recovery phase and get moving with the chemo.
Can someone tell me about the CRP marker? Is it an indicator for esophageal cancer, or something else? I’ve been Googling it, and everything seems to suggest it’s just a sign of inflammation.

Fiz, how’s your mother-in-law holding up?

From what I understand, CRP is just a marker for inflammation. My dad had high levels a few times, and it was always talked about as an inflammatory process.

I’m following your story, Zachary Howard2, and honestly, I admire your strength and how you're sticking with this. On the flip side, this whole thing with the doctors and how they treat patients is just mind-blowing. Here in the States, our situation is the complete opposite. The nurses on the units where he stayed, the doctors, the oncologists, the family GP, the home health nurses... we have nothing but praise for every single one of them. Even now, while he's in the ICU—totally lost, his entire personality completely flipped (he's yelling, swearing, making threats, pulling at oxygen lines and IVs when he's not lucid)—the nurses and doctors are still treating us with such humanity and professionalism. They do everything in their power to make things easier for him, and they even comfort us, telling us not to take his words to heart because it isn't him talking—it's just the disease that has totally wrecked his brain and everything else.

Hang in there, Zachary Howard2! Sending you guys so much strength, and hoping your father-in-law beats this monster!

Michelle Kelly4 said:Fiz, how is your mother-in-law holding up?

So far, she’s doing okay. Since the husbands are living out in the Midwest, we’ve been a little selective about what we tell her—kind of "filtering" the news. We're mostly just worried that since she's on her own there now, too much reality might take a toll on her mental state.
Honestly, I’m not even sure if this is the smartest move, considering she'll eventually have to face the music. But for now, let her hold onto that hope—even if we know exactly how messy things actually are.

Amanda Anderson87 said:As far as I know, CRP is just an indicator of inflammation. My dad had elevated levels several times, and it was always attributed to some kind of inflammatory process.

I’ve been following your story, Zachary Howard2, and I truly admire your strength and persistence. On the flip side, hearing about your experience with the doctors and how they treat patients is just mind-blowing. In our neck of the woods, the situation is the complete opposite. The nurses on the wards where he stayed, the doctors, the oncologists, the family GP, the home health nurses... we have nothing but praise for every single one of them. Even now, while he's in the ICU—lost, his entire personality completely altered (shouting, cursing, making threats, pulling at oxygen lines and IVs when he isn't lucid)—the nurses and doctors continue to act with such humanity and professionalism. They do everything in their power to make him comfortable, and they go out of their way to reassure us not to take his outbursts personally, reminding us that it isn't him talking, but the disease that has absolutely wrecked his brain and everything else.

Hang in there, Zachary Howard2! Sending you all the strength in the world, and hoping your father-in-law beats this monster!

Thank you... we're fighting. There is no giving up. I will do everything within my knowledge and ability to extend his life.
Everything has dragged on so much longer than expected. The doctor is coming by tomorrow, so we'll discuss specific nutrition to help him regain some strength so he can finally go home and start chemo. We've waited far too long already.

I’ve heard plenty of horror stories about Jordan, but until you live through it yourself, you just don't truly believe them.
Which hospital was your father in?

Fiz will recover and everything's gonna be just fine...

Amanda Miller69 said:Thanks.... we’re fighting, no giving up here. I’ll do absolutely everything in my power to extend his life.
Everything is just dragging out so much. The doctor is coming tomorrow, so we'll figure out a specific diet to get him strong enough to head home and actually start chemo. We've waited way too long already.

I’ve heard plenty of horror stories about Jordan, but you don't really believe them until you're living through it yourself.
Which hospital was your dad at?

My dad was first admitted to the local hospital in our area, and now he’s staying over at the big city medical center. And look, I’d heard plenty of bad things about hospitals in this part of the country before—honestly, doesn't everyone?—but besides the usual shortage of doctors, nurses, and basic supplies, what we experienced during Dad's illness was something else entirely.

And don't even get me started on our local clinic. If we don't check in for a while, they’re the ones calling us to see how Dad is doing. They even come by for home visits whenever necessary. As soon as the staff arrives, they find her, and if anything is off, they call us immediately. They even organized our transport to the hospital since Dad can't move on his own. She's informed, professional, and actually willing to help. And this isn't even some major metro hub; it’s just a tiny little coastal town.

Basically, through this whole disaster, at least we didn't have issues with the doctors.

It’s honestly pretty disheartening—my father-in-law has come down with a fever of 100.4, so they rushed him over for chest X-rays just to make sure he hasn't developed pneumonia.
My sister-in-law stayed behind at the hospital to wait for the results and try to catch the doctor so we can figure out our next move.

What really infuriates me, though, is that my sister-in-law found out from some neighbors back in the Midwest yesterday that right after his first gastroscopy back in March, the doctors wanted to send him straight to the Mayo Clinic for surgery via medical transport. Instead, he insisted on going home first to schedule everything, which dragged the whole process out for three agonizing months—as if he doesn't realize cancer isn't just a common cold. To make matters worse, the family kept us in the dark about everything, supposedly "so we wouldn't get stressed." Honestly, it's enough to make anyone lose their mind.🙂