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

Amanda Miller69 said:The fourth round of chemo really knocked my father-in-law sideways. He’s saying he feels completely drained. He’s also struggling with a lump from his surgery—when he tightens his belt, he says he can barely breathe, which wasn't an issue before. He’s also feeling pain from a mass in his abdomen, though he doesn't realize yet that it's a metastasis. On the bright side, he isn't losing weight, or at least he's maintaining it, and his appetite is fine.
The breathing thing has me worried; I'm terrified it might have spread to his lungs.
He’s also still coughing and hacking, and he admits himself that it doesn't feel right.
I try to calm him down by suggesting it's just the chemo, and maybe some of it is—the fatigue and lethargy are expected—but I'm scared it's something worse.
He starts his fifth round this Tuesday, then heads to the doctor for a check-up. Once he finishes the sixth round, they'll finally run a PET Scan to see where we actually stand.
This month marks one year since the diagnosis. I just hope he lives long enough to meet his grandkids (my sister-in-law is due in two months, and I am in December) and gets to enjoy them even just a little bit.

Oops, if I were in your shoes, I’d get him a chest X-ray and an abdominal ultrasound immediately. That shortness of breath sounds like it could be fluid buildup in the abdomen or the pleura. You need to get eyes on that right away so the doctors can decide if he needs to start on Furosemide immediately.

Hey there,

Testing for the EGFR mutation.
RESULT: No mutations were found in this sample.

This is my Mom's report. I’m guessing this isn't great news either, since it means we can't move forward with targeted therapy...

So, that's the deal with the right lung.

Now we’re just waiting on the bronchoscopy results for the left lung. In the meantime, I sent the translation of the right lung report and the PET Scan over to a clinic in Germany. They got back to me saying they're setting up an appointment to potentially operate on the right lung.
I haven't heard anything yet from the doctors at Jordanovac because they're still waiting on those left lung results...

My plan is to consult both teams—our local docs and the ones in Germany—and then let Mom make the final call on how she wants to handle treatment.
Should I go hard on alternative treatments in the meantime?

Anyone else got some advice? (I've been feeling pretty low lately—should I go see a psychiatrist?)

Thanks

Michael Cruz28 said:Hello,

Testing for the EGFR gene mutation.
The results are in: this specific sample didn't show any of the listed mutations.

Here are my mother's test results. I have a gut feeling this isn't exactly the news we were hoping for either, and it looks like targeted therapy might not be an option at this stage...

That’s the end of it regarding the right lung lobe.

Now we’re just playing the waiting game for the bronchoscopy results from the left lung. In the meantime, I sent over the translations for the right lung findings and the PET scan to a clinic in Germany. They got back to me saying they’re currently working on scheduling an appointment to potentially move forward with surgery on the right lung.
I haven't received any feedback from the team at Jordanovac yet; they're still waiting on the results for the left rib.

My strategy is to consult with both medical teams—our local specialists and the experts over in Germany—and then simply leave the final decision to my Mom. It’s her journey, so she should be the one to decide how we move forward with her treatment.
In the meantime, should we start looking into some aggressive alternative treatments?

Does anyone else have any advice to share? Honestly, I’ve been hitting a bit of a rough patch mentally lately, and I'm feeling pretty low. Should I go ahead and schedule an appointment with a psychiatrist?

Thank you.

I honestly can't recommend seeing a psychologist enough—not just for clinical reasons, but for your own sanity. When you’re navigating these kinds of heavy, high-stress chapters, having a professional to talk to makes a world of difference. My sister and I are actually walking through very similar situations right now, and we’ve both started seeing therapists to cope. As a mother of two little girls, I know firsthand that I have to stay grounded; I need to be at my absolute best for them, even when everything else feels like it's falling apart.

Folks, things have become significantly more complicated for us here. It isn't actually due to the progression of the cancer, but rather because of sheer negligence and mistakes made during a rectal surgery. Essentially, after the operation, my father was sent home with a massive wound infection. Out of fear of sepsis, we treated the wound with antibiotics at a private clinic... and thank God, that part is under control now. However, due to intense bladder pain, we took Dad to the ER three separate times. Each time, they simply swapped out his catheter, explaining that it should be impossible to feel pain while urinating since the catheter is in place. They kept sending us home, suggesting we go to a specialized clinic because the pain likely meant the disease had reached a terminal stage. Finally, after insisting with the surgeon treating the wound, the catheter was removed. When I brought Dad home, he ended up urinating through the rectal wound. In total shock, I called 911, and they admitted him immediately. Then came the bombshell: there is a hole in his bladder. The Mjeruh was almost certainly punctured during the surgery, even though nobody has explicitly confirmed it to us. Now, he faces another surgery to stitch it up. We are terrified he won't pull through because he is so incredibly weak. Naturally, we are heading to a different hospital; I refuse to let these butchers touch him again. What an absolute nightmare.

Just a quick reminder:
If anyone is planning to start therapy with Zomet (for instance, treating prostate cancer), you absolutely must have your creatinine clearance checked beforehand!
http://www.ema.europa.eu/docs/hr_HR/...C500051730.pdf

Angela Wright said:Oops, if I were in their shoes, I’d be demanding a chest X-ray and an abdominal ultrasound immediately. That shortness of breath really makes me worry about fluid buildup in the abdomen or the pleura. It needs to be checked out right away so they can get him started on some Lasix.

Of course, the doctor won't just take my word for it. He starts his fifth round of chemo tomorrow, so I told him he absolutely needs to mention this during the pre-chemo exam.
We aren't heading to their clinic until the weekend, and honestly, you can't do much when you're just calling from a distance.
My mother-in-law is back at it again, pushing for some Noni juice, but I'm genuinely concerned it might hit his liver hard and end up doing more harm than good.
I told her not to buy anything until I've had a chance to look into it properly.

My father-in-law showed up with blood in his urine today. Because of that—combined with some low blood pressure and poor blood work—he ended up skipping his treatment session today.
His doctor mentioned it could either be a side effect of the therapy or related to the tumor itself.
I’m honestly terrified it’s the latter, and that things might have spread to the bladder or somewhere similar.
What should our next move be? Should we rush him back to the doctor immediately? Does anyone have insight into what else might be causing this bleeding?

Amanda Miller69 said:My father-in-law started seeing blood in his urine. He had to skip today's treatment because of that, along with low blood pressure and poor blood counts.
The doctor told him it could be a side effect of the therapy or caused by the tumor itself.
I'm terrified it's the latter—like it's spread to the bladder or something similar.
Should we rush him back to the doctor or what? What else could be causing this bleeding?

It could be the prostate, it could be kidney-related, or maybe just a bladder infection... honestly, given how bad his blood work looks, I wouldn't be surprised if it's an infection. Chemotherapy absolutely wrecks the immune system, and for older patients, bladder infections are pretty common.
Has he had any other tests done yet, like an abdominal ultrasound or a urine culture?

Angela Wright said:It could be the prostate, it could be kidney-related, or perhaps a bladder infection... considering how poor his CBC was, I wouldn't be surprised if it's an infection. Cancer really does wreck the immune system, and for older patients, bladder infections aren't exactly uncommon.
Has he had any other testing done yet? At least an abdominal ultrasound or a urine culture?

I just noticed he was prescribed Ciprofloxacin, which is used to treat urinary tract and kidney infections.
Hopefully, that's just an infection. He isn't passing blood anymore; his urine looks clear now.
They ran some blood work, and his CBC was quite poor, along with low blood pressure at 90/60.
The doctors told him that everything else needs to be handled by his oncologist.

Amanda Miller69 said:I just noticed he was put on an antibiotic called Ciprofloxacin, which is used to treat urinary tract infections, kidney issues, and things like that.
It’s probably because of the infection. At least he isn't urinating blood anymore; the urine looks clear now.
They ran some blood work, and his kidney values were poor, and his blood pressure was low at 90/60.
The doctors told him his oncology team needs to handle the rest of it.

Get him some Urofar; it’s an excellent natural remedy for flushing out the urinary tract since it contains D-mannose. Also, have him drink plenty of parsley tea.

Hi everyone. Our grandmother has passed away, leaving behind quite a lot of diapers and medical supplies. Does anyone have suggestions on where we could take these or donate them? Perhaps someone out there could really use them. Thanks.

Thank God,
Mom and I have been here in Germany for seven days now, and we’ve finally reached the point where the only thing left is a biopsy of the left lung. So far, based on what we know from the doctors back in Chicago, we have the morphology and cytology for the right lung. The bronchoscopy on the left side also showed adenocarcinoma, but without the cytology because I had to rush to my appointment here in Germany and didn't get that part done. They told us that depending on the classification or category, it sits somewhere between stage 3 and 4. Back home, they basically said, "Alright, all you have left is chemotherapy."
Now, the doctors here in Germany are suggesting a puncture on the left side to potentially identify the malignancy and specific mutations. The logic is that it would help pick the right chemo. And choosing the right chemo could be the difference between just palliative care and actually getting better treatment—meaning it could significantly improve the patient's quality of life and longevity. When I asked about the success rates, they told me the odds are pretty slim, and there's a risk of a pneumothorax. At first, I brushed the idea off, but now I'm thinking maybe we should stick around another week or two to try it, just so I don't spend the rest of my life kicking myself for not trying. I mean, if it was bad luck that only 2% of people with tumors in both lungs end up in this spot, maybe it'll be good luck if an ALK, EGFR, or some other mutation comes back positive, or if the histology points us toward the best possible chemo.
On the flip side, Mom is already pretty exhausted, and I'm worried about how she'll handle the puncture. If things get complicated and she gets totally wiped out, when will she even be ready for chemo? On top of everything, she's developed a cough and is losing her voice... She had a fever of 101 when we first arrived at the clinic in Germany, then on the second day, she had a lymph node biopsy, and thank God that came back negative. On the third day, the bronchoscopic biopsy of the left lung unfortunately wasn't successful. That evening, her fever hit 101.3 again, and she's on IV Klavocin...
The brain MRI was clear, lung function is great, and a bunch of other tests to prep for potential surgery all looked good. Everything is fine except for those two damn tumors, one in each lung....
I honestly don't know if the tumor is progressing—which would explain the throat issues, the cough, and the voice—or if it's just damage from the bronchoscopy and a cold. It makes me wonder: how much time do we actually have for this "experiment"? Are we falling behind on starting chemo? Plus, I've been struggling mentally being here in Germany since I'm so far from home. I've never been to Germany before, and the language barrier with the doctors is tough since I only speak English and don't know any German.....
How risky is this damn puncture, and am I running late? My head is about to explode.... There's no straight answer, just a thousand "ifs" and "buts"... it's awful.....
Anyone have any thoughts?

Thanks

Yesterday, my father-in-law mentioned that the lump on his abdomen—he doesn't realize it's actually a metastasis—is growing. It’s already reached the size of a bar of soap, whereas before it was about the size of a ping-pong ball.
Does this mean the chemo isn't working and the cancer is spreading?
He thinks it might be his brother, who also has a mass positioned a bit higher up and needs surgery, but I'm genuinely worried he's far too frail for any kind of operation.
His last round of chemo is scheduled for June 30th, followed by a check-up with the doctor on July 2nd. I'm torn on whether we should just wait until then or if we need to act sooner. I'll be heading into their office this Thursday.

Zachary Howard2, maybe it really is just a kilo. Look, let's not get ahead of ourselves here; we should just wait until the doctor weighs in on that abdominal issue before the final cycle starts. They can run an Ultrasound at the outpatient clinic based on his referral to see what's actually going on.

My father-in-law’s condition is shifting rapidly. He’s having a hard time walking—only gets up when he absolutely has to—and he’s losing his balance quite a bit. He’s also increasingly losing his sense of time and awareness of what’s happening around him. He complains about all sorts of pains, ranging from headaches to stomach issues and leg pain... currently, he’s taking 4x8 tablets of Dexon, Trodon for the pain 3x1, Controloc for his stomach, Xanax 3x1.5, and Analgin as needed.
His mental state is also spiraling, swinging wildly from crying to euphoria. Over the last two days, he started having incontinence issues, so we’ve had to start using diapers. His vision has also weakened significantly. He has zero control over his appetite; one minute he claims he isn't hungry, and thirty minutes later, he’s asking for food. His short-term memory is basically gone—he can still recall things from the distant past, but anything from half an hour ago just vanishes. He’s scheduled for his 11th round of chemotherapy on July 7th. I honestly don't know if there's any point in him receiving it, but I guess we just keep hoping that each session buys us another month. His condition is actually pretty similar to how he was before the surgery—in some ways, it’s even worse—and he’s still relying on Dexon; I don't even want to imagine how bad it would be without it. The oncologist wants to finish the 12th cycle before ordering an MRI. I’m genuinely afraid he won’t even make it to the scan, given how fast all these negative developments are happening. Sending my best to everyone—hang in there!

Angela Wright said:Zachary Howard2, maybe it really is just a kilo. Let’s not get ahead of ourselves; let's just wait until the doctor mentions anything about his abdomen before the final cycle. They can run an abdominal Ultrasound at the outpatient clinic to see what's actually going on.

Yesterday, my mother-in-law mentioned that my father-in-law has been feeling weak, dealing with nausea, and has been coughing quite heavily—really hacking up phlegm.
I convinced her that they should head to a private clinic today for an Ultrasound to check out that growing lump. Anything that grows isn't exactly a good sign.
I'm hoping she doesn't back out today. If she does, I'll just take him myself this Friday. He's refusing to go to the ER.

On the other hand, I find myself worrying about it, yet I'm trying so hard not to subject myself to all that stress for the sake of the baby—even though, thank God, the little one is doing great and is very active.

Elizabeth Fisher13 said:My mother-in-law's condition is shifting rapidly. She’s struggling to walk—only really moving when absolutely necessary—and she keeps losing her balance. Her sense of time and awareness of her surroundings is slipping away too. She’s complaining about all sorts of pains, ranging from headaches to stomach aches and leg pain... She’s currently on Dexamethasone (4x8 tablets), Trodon for the pain (3x1), Controloc for her stomach, Xanax (3x1.5), and Analgin as needed.
Her mental state is also declining, swinging wildly from weeping to euphoria. Over the last two days, she started having incontinence issues, so we’ve had to start using diapers. Her vision has weakened significantly as well. There's no control over her appetite either; one minute she claims she isn't hungry, and thirty minutes later, she's asking for food. Her short-term memory is gone; she can still recall things from a long time ago, but forgets what happened half an hour prior. She's scheduled for her 11th round of chemo on July 7th. I honestly don't know if there's any point in continuing, but we just keep hoping that each session buys us another month. Her current state is quite similar to how she was before the surgery—in some ways, even worse—and she's still relying on the Dexamethasone. I dread to think what she would be like without it. The oncologist wants to finish the 12th cycle before ordering a PET Scan. I’m terrified we won't even make it to the scan, given how fast these negative developments are occurring. Best wishes to everyone; hang in there.

Hang in there.🙂
It seems like everyone is hitting a rough patch lately.
I can't help but wonder: if the chemo isn't working for my father-in-law (he has a mass in his abdomen that is a growing metastasis), does it even make sense to put him through this sixth cycle just to follow it up with a PET Scan?

Amanda Miller69 said:Hang in there. 🙂
It feels like everyone here is going through a rough patch lately.
I was just thinking, if chemo isn't really doing anything for my father-in-law (he has this lump on his abdomen that's a metastasis and it's clearly growing), does it even make sense to push him through a sixth cycle of chemo before we finally get that PET Scan?

Thanks, dear Zachary Howard2!
So many thoughts are racing through my head right now: "what should we do, and is any of this actually worth it?" We're trying to stick with the chemo, but it honestly feels like the "enemy" is winning. I don't even know how he'll manage to stay still for an MRI, considering he’s already semi-conscious, disoriented, and barely able to move as it is. It's painfully obvious the tumor is back and taking over. Honestly, we're just lost on what the next move should be. The oncologist's stance is basically to keep up the chemo as long as possible—or at least as long as his blood counts allow. We aren't even driving him to the oncology clinic just for blood work anymore because getting him down those stairs is such a nightmare; a nurse just comes by to draw his blood instead. It's just exhausting, and unfortunately, we have to deal with it.😢

Mom fiancé had an X-ray on Friday, and here’s what came back:

The results show multiple secondary changes in the liver, pancreas, right adrenal gland, upper abdominal retroperitoneal lymph nodes, and some suspicious findings in the left adrenal gland, though the primary site isn't clearly marked. One of the focal lesions on the pancreas might actually be the primary one. Everything else looked normal. They recommended a chest X-ray and a CT scan of the abdomen, and since he's in pain, they suggested seeing a primary care doctor immediately.

He's 44... about 15 or 20 days ago, his stomach issues really ramped up—lots of bloating and burping. Since he already deals with gastritis, he didn't think much of it until the back pain started, specifically in his kidneys, so he decided to go in for an Ultrasound.
On the Ultrasound, the doctor didn't see anything wrong with his kidneys, just a little bit of sediment.

She didn't say anything directly to him, but she pulled me aside and whispered that these look like cancer metastases, so we have to find out where it started.😢 Is there any chance they aren't metastases? And if they are, is there still hope? I'm desperate; I just want to save him, I'd do anything...
I've never been in a situation like this before. I couldn't even imagine what people go through when they face something like this...

Kimberly Nguyen70 said:My fiancé had an X-ray on Friday, and this is what they found:

The findings indicate multiple secondary changes in the liver, pancreas, right adrenal gland, upper abdominal retroperitoneal lymph nodes, and a suspicious area on the left adrenal gland, though the primary site isn't clearly defined. One of the focal lesions on the pancreas might be the primary site. Other organs examined appear within normal limits. A chest X-ray and abdominal CT scan are recommended. Given the pain, follow up with a family doctor immediately.

He’s 44... about 15 or 20 days ago, his stomach issues started getting intense. He was dealing with bloating and burping, but since he already suffers from gastritis, he didn't think much of it until he started feeling pain in his back—specifically in his kidneys. That’s why he decided to go get an Ultrasound.
On the Ultrasound, the doctor didn't see anything wrong with his kidneys, just a little bit of sediment.

The doctor didn't tell him anything directly, but she whispered to me that these look like cancer metastases, and we have to figure out where the primary tumor is located.😢 Is there any chance they aren't metastases? And if they are, is there any hope? I am DESPERATE; I want to save him, I would do anything...
I've never been in a situation like this before. I couldn't even imagine what people who go through this actually endure...

I’ll be blunt with you: things don't look good here. It looks like an advanced case of stomach cancer. It’s all very textbook; this disease is incredibly sneaky. It doesn't cause any real trouble until it gains momentum and starts racing ahead, and by then, the symptoms finally show up.
Given how widespread this appears to be, it seems like palliative care will be the only option—focusing on slowing the progression and managing the symptoms...
...I am so incredibly sorry. I wish I could give you something positive to hold onto.😢
You both need to pull yourselves together as much as possible. You have to be his rock and his support system. You'll have to find the strength to face this head-on and navigate whatever comes next.
Hang in there, both of you.