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

We actually managed to pull some strings through my father-in-law's connections to get her into a CT scan yesterday, rather than waiting for the original July 23rd appointment. We should have the results later today or tomorrow, though I can't help but feel a sense of dread about what they might actually show.

Angela Wright said:There's an association for people who have had a laryngectomy; they’re really active and offer great support. You should definitely reach out to them—they'll give you firsthand advice and information.http://www.larynx-hr.org/

Thanks for the info.
We reached out to the association, and they said they can help, but only starting in early September. If he doesn't learn how to swallow by then, they might have to perform a total laryngectomy.
I was actually thinking more along the lines of specific exercises or maybe some guidance at the hospital, since he really needs to overcome this and somehow retrain his swallowing reflex.

If anyone is in need, I have some high-quality San Seni Una incontinence pads to give away. Just send me a private message and I'll pass along my phone number.

We finally got the results back, and it’s bad news.
The cancer has returned in one area, all the previous metastases have progressed, a tiny 3mm spot appeared on the lung, and there's some fluid buildup in the left chest... I honestly don't know if there's any help left to give or if we're just waiting for the end. 😢

My mother-in-law says he's taking pain medication every single night now, and his strength is just fading away.

How else can we support him through this?

Amanda Miller69 said:We finally got the results back, and it’s bad news.
The cancer has returned in the same spot, all the previous metastases are progressing, a tiny 3mm spot showed up on a lung lobe, and there's some fluid buildup in the left chest... I honestly don't know if there's any help left to give or if we're just waiting for the end.😢

My mother-in-law says he's taking pain pills every single night now and he's getting weaker by the day.

How else can we help him?

What did the oncologist say?
If I were you, I'd go see Cepulic for a second opinion on what the next move should be.

Angela Wright said:What did the oncologist say?
If I were in your shoes, I’d head over to Cepulic for a second opinion as soon as possible.

We haven't made it there yet; we just got the results back today. Tomorrow, we’re heading to the local clinic with the referral, and our first stop will be her primary oncologist. Depending on what they tell us, we'll decide whether to move forward with Cepulic.

My mother-in-law just told me that my father-in-law has developed some bleeding around that lump he has on his abdomen. What does that actually mean? Is the tumor breaking down and causing the bleeding? She took him for blood work today, and she mentioned that even his blood counts aren't looking good.
I'm heading to the oncologist with him tomorrow, and honestly, I'm terrified. I don't know what to say, and I'm scared they might just tell him to come home to die.
How much time can we realistically expect? My mother-in-law says he’s already struggling to even sit up; he just lies there all day.
My sister-in-law is due to give birth in about a month, and I desperately want her to at least see one grandchild born. I'm terrified mine won't make it that far—I'm only halfway through my pregnancy... and she's so excited to be a grandmother. :-(

Hey, Fiza, 😢
Let's just take it one day at a time; we'll see what Dr. and Cepulic have to say once the dust settles.
If you ask me, his chances were significantly compromised right out of the gate because they didn't jump straight into chemotherapy immediately following the procedure. 😢

The oncologist gave us the short version: that external lump is actually a fistula connected to the lymph nodes, and it’s currently stuck to the small intestine. It’s inflamed right now—there’s pus draining from his navel—so he's been put on antibiotics, specifically Augmentin and Metronidazole.
If he wants to look into having it removed, we should seek out an abdominal surgeon, though I have my doubts about that being an option. At the very least, they should handle the dressing changes and take a culture of the discharge.
On top of that, he’s severely anemic; he needs a blood transfusion within the next week at the latest, and his blood pressure is running quite low at 90/60.
It all points back to the disease progressing, so further chemotherapy isn't recommended (which, honestly, wasn't a surprise).
For now, the plan is to use pain patches, keep him hydrated, and try to get more nutrition into him—he’s already dropped 5kg in just a few days.

I’m just clinging to a little hope that we can patch him up enough to keep him with us for a while longer.
In my opinion, we shouldn't bother bringing Cepulic in for treatment until he’s had the transfusion and we hear what the abdominal surgeon has to say.

My father-in-law has developed a pressure sore while on dialysis. I’m trying to avoid spiraling down a rabbit hole of endless online searches, so could someone please suggest what kind of ointment works best for this? Also, does anyone know where I might be able to pick up a pressure-relief mattress?
My mother-in-law mentioned that his primary care doctor told her things are going to get incredibly difficult from here on out, and suggested that when the time comes, it would be best to transition him into hospice care.
I'm honestly not sure if they'll just accept him into a facility without much notice, but we'll have to see how things unfold.
It brings back memories of when I had to care for my own mother; she was incontinent, semi-conscious, and immobile, and I was living right there with her. Eventually, I had to move her to a nursing home in a nearby town, where she passed away just a week later.
My mother-in-law lives alone with my father-in-law, and her sister-in-law is currently in Sweden and due to give birth in three weeks, so she won't be able to help out anytime soon. Meanwhile, my husband and I are 93 miles quite far away and can't just drop everything to head over there at a moment's notice.

Amanda Miller69 said:My father-in-law has developed a pressure sore on his buttocks. Without me diving into endless threads of advice, can anyone tell me what kind of ointment to use or where we might actually find an air mattress to prevent this?
My mother-in-law told me his primary care doctor said things are going to get incredibly difficult from here on out, and suggested it would be best to move him into hospice when the time comes.
I’m not entirely sure if a hospital will just take him in without much notice, but we'll see when it comes down to it.
I remember when my own mom was incontinent, semi-conscious, and immobile—she was sent home to live with me. Eventually, I had to place her in a facility in Dug Resa, where she passed away after just a week.
My mother-in-law lives alone with my father-in-law, and her sister-in-law is currently in Sweden and due to give birth in three weeks, so she can't help out anytime soon. Meanwhile, my husband and I are 93 miles far away and can't just drop everything to rush over there at a moment's notice.

Pick up some Granuloflex extra thin bandages at the pharmacy, Decumyl ointment, or Dermazine ointment. You should rinse the area with boric acid or Rivanol, let it air dry, apply the ointment, and then cover it with a bandage.
An anti-decubitus mattress is a absolute necessity—get the kind that uses an air compressor. You can find them at medical supply stores for about $1000. If you check Craigslist, you might find a better deal. You can also look into renting a hospital bed and mattress from local nursing homes or clinics for roughly $100 a month. You’ll have to reach out and ask. Additionally, organizations like the Hospice group or Caritas might rent them out on a loan basis if you just approach them with a formal request and his medical history.
Also, given his condition, my grandfather has a right to daily home health nursing visits for up to 45 minutes a day. The local clinic needs to get off its butt and come by for a home visit to inspect the wounds and submit a proposal for visiting nurse services. A registered nurse will know exactly how to manage that pressure sore. Having someone wash him, shave him, and change his clothes every single day will mean the world to your mother-in-law; God knows what it meant to me.
Hang in there, dear.

He received two blood transfusions and an IV yesterday, which seemed to give him a bit of a spark. My mother-in-law mentioned that, for once, he actually sat up at the table instead of just lying in bed all day.
The doctor back in Pakrac told him that the issues have spread to his lungs and liver, suggesting he needs to head back to where his surgery was performed to see if they can manage the situation.
I told him he’s heading to the LOM today to pick up his referral; I'll fax it over, and then next Tuesday he'll be seeing his surgeon over in Jordanovac to find out if there's actually a plan of action or if we're looking at doing nothing at all.
The wound isn't leaking anymore, so hopefully, the antibiotics are finally doing their job.

Fiza, hang in there. Honestly, given how that first experience went, I’d suggest trying to get him into Mayo Clinic for the surgery.

Kimberly Nguyen70 said:Here I am again, though the news is a bit different this time.
My fiancé just had an abdominal CT scan, and it shows a metastasis on the liver—the largest one is 20 mm.
There's also a round lesion visible in the left adrenal gland, but they didn't specify what it is.
Then it mentions enlarged lymph nodes, and there's a 35 mm metastatic deposit on the peritoneum just below the left diaphragm.

Everything else looks normal; the CT shows nothing on the pancreas. He also had an endoscopy and a colonoscopy, and those came back clear.

The oncologist suggested doing a CT-guided liver biopsy before we decide on the next steps...

I’m a little terrified that things might take a turn for the worse while we wait for all this to play out... but we've already started working on boosting his immune system.

I don't know...

Angela Wright, what’s your take on the situation now?

A CT scan rarely catches cancer effectively, and when it does, it's usually late in the game. I personally went for three different CT scans within a 20-day window before my diagnosis; then an MRI flagged potential pancreatic cancer, and a PET scan confirmed it.
With pancreatic cancer, back pain usually hits during the final stages. If you can eliminate the pain by crouching down and leaning your head forward, then the diagnosis isn't great.
Tumor markers are completely unreliable. Blood tests for bilirubin, AST, and ALT provide some indication of issues, but they're far too broad.
The best and only truly reliable diagnostic tool is a PET scan. I've had two PET scans so far. The first one caught the cancer with millimeter precision, and the second one confirmed the surgery was a success.
Adenocarcinoma of the pancreas and surrounding tissue is a small but lethal cancer. Most of the time, it's diagnosed too late—once it passes 1 cm, it's usually inoperable.

My advice is to insist on a PET scan. Even if you don't want to pay full price, you can often negotiate the cost starting from $2500. Honestly, I'm not sure how much your oncologist is actually involved in your specific case. I handled everything through the Internal Medicine Department, and while I was inpatient, my doctor coordinated directly with the surgical clinic for the pancreatic operation. I was sent for a PET scan to pinpoint the exact location of the cancer, and once the results were in, I was in surgery within 24 hours.

Zachary Howard2, I've been lurking on this thread forever... you might be able to get an anti-decubitus mattress on insurance. Definitely check with your doctor about it..

Hey everyone...
I’ve posted here before—maybe > remembers me. My father is battling colon cancer that has already spread to his liver.
He was supposed to start chemotherapy today, but they pushed it back because his white blood cell count is too high. They’re claiming it’s an infection and rescheduled him for next week.
What are we actually supposed to do to fix this? Should he be on some kind of antibiotic to get those levels down? Nobody gave us any direction—they didn't even say if we should head over to his primary care physician.

Does anyone here know anything about that experimental "Trojan Horse" therapy? Does anyone know what phase it's currently in?

Also, has anyone ever gone private to see Dr. Aleksandar Soltyšik? I'm looking for real feedback on his approach to treating tumors.

Make sure you get an answer back; he definitely should have received something. You should check in with the LOM regardless to be sure.

Things aren't going well on our end. My father-in-law ended up in the ER yesterday because food got stuck again—it looks like his esophagus might be narrowing. After they exhausted him with tests, they sent him home, only for him to start having trouble breathing later that evening. He saw a surgeon today, and my husband tells me he started feeling pain on his left side while still at the medical transport service. He ended up back at the emergency room over at the local hospital in Jordanovac for lung imaging. I'm still waiting to hear more from my husband, who is there with him now.

I honestly don't know what we should expect anymore, or if we're just living day to day...

Amanda Miller69 said:Things are looking grim here. Yesterday, my father-in-law ended up in the ER because food got stuck again—likely his esophagus is closing up. They exhausted him and sent him home, but by evening, he was struggling to breathe. He saw a surgeon today, and my husband tells me he started feeling pain on his left side while in the ambulance; he ended up at the emergency room in Jordanovac. They did some imaging on his lungs, and now I’m just waiting to hear from my husband, who is there with him, to see what the next steps are.

I honestly don't know if we should even expect anything more, or if we're just counting down the days....

Oh, honey...😢
Look, as long as he's still breathing, the fight is still on. They'll find a way to patch him up somehow.😢
I am so incredibly sorry; you really didn't deserve to go through this.😢

Angela Wright As requested:
Oh, honey...😢
Well, look at that—as long as he’s still breathing, the fight continues. They'll find a way to patch him up somehow, I suppose. 😢
I am truly sorry to hear this; you certainly didn't deserve to go through this. 😢

Thanks, dear.
Unfortunately, this is just a burden we have to shoulder. 😢

My husband just called me from the States. It turns out he’s dealing with an infection in his left lung. They put him on some antibiotics and sent him straight back home.
The surgeon echoed what the oncologist already said: less is more. For now, he isn't planning to touch anything because it’s simply not the priority. Instead, he recommended that the oncologist refer him for radiation—I’m assuming palliative—just to provide some relief and make things manageable for as long as possible.😢