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

Amanda Miller69 said:Svekar is starting his third round of chemo. He’s been looking pretty thin lately—we actually gave him some Ensure Plus, which seems to be doing better for him than the diarrhea.
He’s handling the chemo itself okay, it's just the lack of bowel movements that's the issue. Does anyone know what helps get things moving again?
I'm really worried about how skinny he's getting—he's dropped another 4kg even though he's eating.

Purisan granules might help out.

If you need to get things moving, just pick up some liquid glycerin and a syringe, then inject about 2ml of the glycerin directly into the rectum. It’ll kickstart the process. To keep your digestion actually functioning on a regular basis, you're better off sticking to high-potency probiotics and plenty of fiber. A solid combo would be flaxseeds paired with some low-fat cottage cheese.

We’ve started him on some Dulcolax suppositories; he did a little bit of work earlier, so hopefully, that provides some relief.
I’m going to have to track down his doctor to get him a referral to a nutritionist for a strict meal plan, because if we keep this up, we're going to have a serious problem... we try to come up with something sensible, but he just refuses everything we suggest.

Hey everyone, I could really use some advice here. My father had surgery for prostate adenocarcinoma back in June 2011, and his Gleason score was 3+4=7. His first PSA reading in September 2011 was 0.00, and since then it's hovered around 0.01 and 0.018. However, he just got today's results back and it's up to 0.022. Is this enough of a jump to be worried about? Does this indicate the cancer might be coming back, or what should our next steps be?

Amanda Perez42 said:Hi everyone, I could really use some help here. My father had surgery for prostate adenocarcinoma back in June 2011. His Gleason Score was 3+4=7. After the procedure, his first PSA reading in September 2011 was 0.00, followed by about 0.01, then 0.018, and so on. However, the latest result he got today is 0.022. We're wondering if this shift is significant—should we be worried? Could this indicate the disease is coming back?

That is completely within the normal range; those little fluctuations up and down are totally standard.
Just keep up with the regular checkups and live your life without stressing over it. You can live a great, high-quality life like this all the way into old age.

Thanks so much for the reply! It seems to me like everything looks fine as long as those first two zeros are there. That said, his doctor suggested he check in with his oncologist to figure out why these changes are showing up at all and if they should consider a bone scan. So, we're just waiting to hear what the oncologist thinks now.

Hello,

My Father-in-law (65 years old) suffered a pulmonary embolism four months ago. He recovered from that, but since then, he’s been on blood thinners and wearing compression stockings. During his follow-ups, various Ultrasounds and CT scans were done, and everything seemed fine—except for his white blood cell count, which was around 25 (though it has dipped slightly to about 20 or 22). Recently, one side of his neck started swelling up, and during a routine blood check, he was hospitalized. A CT scan revealed a 10cm mass that wasn't visible just four months ago. The doctor said it's a tumor in the chest and that it's quite aggressive. Apparently, it's pressing on vessels, which is causing the swelling in his neck and even a bit in his arm.
They performed two biopsies (neck aspirations), but they couldn't determine the exact type of disease. Now, they need to run a third analysis (PHD), which means they’ll likely need to take a larger tissue sample.
Additionally, a bone marrow biopsy was performed at the local hospital from his sternum. We haven't received those results yet, but we've been told they don't look good.
This was supposed to happen last Friday, and then again today, but nothing has happened yet. The doctor says it's out of his hands; he's just waiting on the colleagues in ENT to call the patient in.
In the meantime, the man is just lying there in limbo. They have him on antibiotics and corticosteroids, which have helped reduce the swelling significantly, along with some other meds. But because they don't know the specific type of disease, they can't start the "right" targeted therapy.

Does this process usually take this long? Does anyone have advice on what we should be doing, or do we just have to keep bracing ourselves day by day and waiting for news? 😢
It's incredibly hard to endure all of this, both for the patient and for the family.

The doctor mentioned that the PHD analysis takes a few days...

From where I'm standing, this all feels painfully slow. As a layman, I don't quite grasp it all... going from a zero measurement to a 10cm mass in just four months, followed by biopsy attempts and endless waiting...
I don't know what to expect. They say things aren't good, but they won't give specifics. We're just hoping my Father-in-law can still live a long life and overcome these setbacks.

I've been reading a lot about alternative treatments—things like Chokeberry, Sodium Bicarbonate, or certain oils... but it's so difficult to navigate the sea of information and misinformation out there.
I'm not sure if he should be using any of those things, or even vitamins, until the PHD results are in. There are just so many unknowns.
Some people say avoid this, others say eat that... but I don't know what to watch out for. Right now, he's just eating whatever they serve in the hospital like everyone else.

And how do doctors view all of this? I assume they aren't exactly thrilled. If my Father-in-law decides to seek alternative help, should we even mention it to them?

If anyone has any advice or answers to these questions, I would truly appreciate it.

Best regards.

Hey there
What’s the actual success rate for treating advanced breast cancer—specifically when it's already hit the lungs and bones—using hormone therapy like Aromatase inhibitors (Exemestane)? We're looking at a PR+/ER- HER2- tumor here. So, from what I've gathered, this is an aromatase inhibitor, but the tumor is progesterone-dependent rather than estrogen-dependent, which isn't how it usually goes. After finishing four cycles of the Taxother Carboplatin protocol, the scans actually showed the disease was regressing. But, because of some complications making the chemo impossible to handle—two brain lesions and two aneurysms—they've pivoted. Even though the response was positive, they're switching to Aromatase inhibitor therapy as an alternative, just for two cycles (two months). Honestly, I feel like all that hard-won progress is being tossed out the window. Instead of getting something heavy-duty to compare against those colorful toxic cocktails, I've basically been handed Tic-Tacs.
Thanks

My apologies if this is out of line, but I happened to stumble upon this:
Any thoughts? Does anyone here know anything about this?

Robert Newman3 said:My bad if this is out of line, but I stumbled upon this:
any thoughts? Does anyone know anything about this?

Look, I get that they have to grind through a mountain of randomized studies to prove efficacy—moving from in vitro to in vivo and finally to clinical trials on humans. Unfortunately, a huge chunk of these "sensational" breakthroughs just hit a wall during the in vivo phase.
It’s like how crushed garlic can wipe out malignant cells in a petri dish, but when you put it in a living body, it doesn't touch a single tumor.
Biologically speaking, finding one universal cure for all types of cancer is a total impossibility.

Thanks for the reply. My take is that nowadays we're pouring half our budget into weaponry, but the real question is whether anything would actually be incurable under those circumstances. Still, I guess greed and curses tend to run deeper than anything else.

Hello everyone. I haven't had a chance to catch up on all the posts yet... I'll dive in when I can find a spare moment. My family is going through an incredibly difficult time right now, so if anyone here has navigated a similar situation, I would truly appreciate any advice you might have. Back in 2011, my father was diagnosed with prostate cancer. We immediately sought help at a private clinic where we met a wonderful oncologist who guided our next steps. Because we went private, we were able to get all his tests done in a single day—results that would have taken at least six months to process at a public hospital. Dad went straight to a facility in Rijeka for radiation, and thanks to that quick response, his prostate cancer was effectively treated. I should mention that when Dad later returned to the public system with all those private records, he was actually mocked for them. Fast forward to about 20 days ago: Dad started experiencing severe abdominal pain. He saw his primary care doctor, who scheduled a surgical consultation for June 5th, 2015. My sister and I begged him to see the specific oncologist we mentioned earlier instead, but he refused for the reasons I noted above. Eventually, I had to take him to the ER. After an examination, they identified colon cancer, and he was admitted immediately. Tests revealed metastases in his liver and some involvement in his lungs. The surgeons told us the plan was to operate on the colon, followed by chemotherapy. He had surgery last Tuesday, and honestly, it went beautifully. He handled it well; by the second day, we were helping him walk, and he even started eating again. He’s recovering remarkably well. However, during the follow-up the next day, the surgeon informed us that Dad’s life expectancy was very short and that they were simply preparing him for oncology and palliative care. My sister and I are there with him every single day—helping him move, exercising with him, and making sure we keep the mood light with jokes and laughter, just so he doesn't sink into despair and can gather strength for the fight ahead. We were also quite puzzled that they didn't even send him to a physiotherapist after surgery. But we made the best of it. Then, the other day, came the shock. That same surgeon tells us that Dad only has about three months left and that they won't be sending him for chemotherapy at all. Instead, it's just home care and palliative care. Essentially, "take him home and wait for the end." And this is with the caveat that he is 74 years old. What else do they expect? After the initial shock wore off, my sister and I decided right then and there that we aren't giving up on our dad, whether he is 74 or 100. He is our father. Yesterday, armed with only two pieces of paperwork and a verbal description of the metastases, we went back to that original oncologist we mentioned. He was genuinely stunned that someone had essentially written Dad off so easily. While we were there, the oncologist called the surgeon to discuss the situation. The surgeon described everything *except* the part where he told us Dad only had three months left. The oncologist instructed them to discharge him as soon as possible. After that call, the oncologist told us that while the situation isn't ideal, it isn't as bleak as we were led to believe, and that Dad absolutely has the right to further treatment, including chemotherapy. He mentioned a new medication that can shrink metastases so significantly that the liver might even become operable again. To top it all off, the most critical PET Scan results still haven't even come back. My sister and I couldn't believe our ears. The oncologist handed us a paper stating the patient was being treated palliatively (as if he were terminal) and that he was requesting all necessary documentation to proceed with full oncological treatment. Now, I am praying to God that the surgeon doesn't write "palliative care" on the official discharge summary. If he does, I'll be forced to drag Dad all the way back to Rijeka (we live in Pula) just to get the chemo authorized. Is this normal? It feels like he was written off simply because of his age—as if it's not worth spending money on him, or why bother with a physiotherapist or an oncologist when he's "old"? Is it right that my father worked for 42 years, paid into Social Security, and spent his entire retirement paying for supplemental insurance, only to have his right to chemotherapy stripped away at the finish line? If chemotherapy buys him just two more months, that is a victory in our eyes, because we are not giving up on him.

I should also mention that our oncologist informed us that the life expectancy for people battling colon cancer with metastases in the liver and lungs has increased—we're looking at anywhere from 30 months up to 5 years now. Of course, that’s assuming they undergo therapy... without it, he said they wouldn't last three months. What else is there to say? We ended up paying $50 just for that consultation... and I say that so no one thinks we have money to throw around. That amount represents two full months of what my father pays for his supplemental insurance. It’s honestly a disgrace how our healthcare system operates.

Man, this is honestly heartbreaking to read. 😢
Hang in there and fight for every single day your dad gets.

Not many retirees in this country actually put in their full years on the job (1/5) and paid into health insurance for decades like they should.

I can't really help you out with personal experience, but I'm truly rooting for you guys!!!

Email the Secretary.

@gentlemarlin14/">@@gentlemarlin14, just a quick heads-up: the surgeon doesn't actually make the final call on chemotherapy treatments. That decision falls to the specialist—the oncologist. Generally speaking, once my father was discharged from the hospital, our plan was to head straight to his primary care physician first. They’ll write up the referral for an oncology consultation, and then the oncologist will sit down with you to figure out the best path forward together. Wishing you all the best!

Thank you all so much. We finally got Dad home yesterday... and he's doing okay. Mom mentioned he actually slept through the entire night. As for the individual I never want to lay eyes on again... thank God he wrote out the discharge papers. Our private oncologist is planning to move forward with more oncology treatment. We actually handed him those results at the very last second, because if he had written down "palliative care," we would have been stuck begging a doctor for a referral to the hospital in Rijeka just to get a second opinion. Instead, we’re going to fight this the easier way. Over the next eight days, the goal is to get his strength up so he can start therapy as soon as possible.

I am fully aware that the surgeon isn't the one making the final call here, but unfortunately, he made his decision anyway.... He refused to even refer him to the oncologist, let alone schedule a consultation. Typically, patients in this situation are prepped and transferred to oncology immediately following surgery. Then you have my Father-in-law, who doesn't understand any of this, saying things like, "So what if they move me to oncology?"... Honestly, oops. I’m just at a loss for words with him at this point.... My lawsuit against him is practically a done deal.

gentlemarlin14 said:I know surgeons don't make the final call, but unfortunately, he did... He didn't want to send him to the oncologist at all... he didn't even call them for a consultation. Normally, patients like this are prepped and moved straight to oncology immediately after surgery. Then you have a Dad who doesn't understand anything saying... "So what if they don't move me to oncology?" Like, oops. I'm honestly speechless when it comes to him... I've got a lawsuit hanging over his head.

Don't act on impulse and burn your bridges! Look, decisions like this aren't made in a vacuum; they happen during tumor board meetings where oncologists are right there in the room. How do you actually know an oncologist didn't suggest holding off? You need to pull yourself together and think rationally before you act.
Get a second opinion from a clinical oncologist, and based on that, you can push for clinical treatment covered by Social Security. They have every right to that, and it happens every single day. My recommendation? Take those records over to the main hospital in New York City. There’s a chance they might admit him on the spot. It’s better to pay for a place to stay in NYC than to drop astronomical amounts of money on private treatments like Avastin or Erbitux—those drugs are incredibly expensive, yet he is entitled to them based on his diagnosis.
Also, palliative care doesn't necessarily mean you're ruling out oncological treatment. A palliative patient isn't necessarily someone on their deathbed; it also includes anyone whose disease is in a state where remission is hard to expect, but with certain cytostatics, you can try to put the disease into dormancy. This can give the patient more quality time, and sometimes, that means years.

gentlemarlin14 said:I know the surgeon doesn't make the final call, but unfortunately, he basically did... he didn't even want to send him to the oncologist—didn't even bother calling them for a consultation. Normally, patients like this get prepped and moved straight to oncology right after surgery. And then there's Dad, who doesn't understand anything, just going, "So what if they move me to oncology?"... Oh my God. I'm honestly speechless with him... I've got a Lawsuit hanging over his head.

I totally get where you're coming from—we all get so sensitive when it comes to our loved ones facing tragedies. But look, patients aren't always moved to oncology immediately after surgery. They need time to recover from the procedure first, and during that window, the appointment with the oncologist gets scheduled. The surgeon's job is just to write the referral... saying "further evaluation and treatment by an oncologist." A lawsuit? Honestly, pull yourself together and just get your Dad signed up with an oncologist. It’s best to start therapy within 6-8 weeks of the surgery at the latest.

Michelle Cook83 said:Look, I get where you're coming from. We all feel the weight when our loved ones face a tragedy like this. But let’s be realistic: patients don't just jump straight from surgery into oncology. They need time to heal from the operation first, and that's exactly when you schedule the follow-up with the oncologist. A surgeon can only write "further evaluation and treatment by an oncologist" in their report. What kind of lawsuit are we talking about here? Get a grip—just get your dad scheduled with the oncologist. Ideally, therapy should kick off within 6 to 8 weeks after the procedure.

I’m with you on this.
For God's sake, the pathology report hasn't even come back yet, and he’s already giving a rough estimate of the situation.
Here is how it works: you go to the oncologist with the current results, attach everything else once the pathology report arrives, and that's that. It doesn't matter what the surgeon scribbled in the discharge papers. You’ll get the referral for oncology regardless, and then the oncologist will weigh in and map out the treatment plan if they see a path forward—and honestly, I don't see why they wouldn't, even if the goal shifts toward palliative care. If things stall, you push further and react based on how the situation evolves.
You simply cannot—and shouldn't—rush headlong into radiation or chemo immediately. Wounds have to close, and the body needs to recover before facing that kind of physical toll. In the meantime, focus on boosting his immune system.
Take it slow. The battle has only just begun; don't burn yourselves out before you've even reached the front lines.