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

Joshua Kim69 said:Looking at all of this, I’m just really confused about whether ALL oncology patients are entitled to this—is it universal or just for certain people? If everyone is covered, then why would anyone need to deal with the Department of Social Services instead of just going through Medicare? The Department has its own income thresholds and specific regulations, and I don't see any mention of payments being made $200 to someone simply because they happen to be fighting cancer. And honestly, the waiting period feels like such a senseless hurdle—these costs hit you IMMEDIATELY, not a year down the line.

Everyone is eligible, but... the wait times...
The Department of Social Services and Medicare are two entirely different institutions with completely different sets of rules. Medicare doesn't provide this specific type of assistance.
But I have to ask—what kind of expenses for oncology patients aren't already covered by Medicare (assuming they don't have supplemental insurance)?

ruggedfox11 said:Everyone has them, but... the wait times..
The Department of Social Services and Medicare are actually two totally different agencies with their own separate sets of rules, so Medicare doesn't really cover that specific kind of assistance.
I guess I should ask, though, which oncology costs aren't covered by Medicare (unless they have private insurance)?

That article mentioned it was more like support for those extra expenses, you know, like vitamins and stuff. So, I'm a little confused why they're talking about medical evaluations if you already have an official report from an Oncologist.

Joshua Kim69 said:That article mentioned it was more like assistance to cover increased costs for things like vitamins and stuff. That’s why I don't quite get why they’re bringing up medical certifications if you already have an oncologist's report.

There has to be a formal certification because every disability claim is handled differently—no two are exactly alike. It’s standard procedure for anyone seeking assistance based on their medical condition. And look, supplements or vitamins aren't strictly "necessary" in the eyes of the system, you know? Even when a cancer patient goes on medical leave, after a certain amount of time—I believe it's about 40 days—Medicare steps in to require a formal evaluation.
Whatever, man.

Joshua Kim69 said:That article mentioned it was more like assistance to cover increased costs for vitamins and stuff like that. So I don't get why they're talking about medical evaluations if you already have an oncologist's report.

When I say an evaluation by a "Unified body," what that actually means is a committee sitting around reading through the attached medical files and giving their opinion based on that. Honestly, I don't think they even bother asking the critically ill patients to show up in person most of the time. For my kids, I have to trek over there constantly just to deal with various rights and paperwork, and we arrive only to find out they won't even look at the child—I’m just the one standing there answering questions to confirm what’s already written in the charts. They don't even lay eyes on the kid.

I’ve been reading through this thread over the last few days because my father-in-law was just diagnosed with cancer—well, nothing is concretely confirmed yet; everything is still being processed. He’s currently lying in the hospital waiting for a CT scan, which should happen sometime next week. My husband and mother-in-law are incredibly worried; according to the oncologist in San Francisco, the situation doesn't look good at all.

It all started about a month and a half ago when he caught what he thought was just the "flu." After that, he started feeling Pain in his lower back. He just chalked it up to getting older, thinking it would pass if he just waited it out at the doctor's office. But the pain wouldn't go away. He was having a hard time moving around, constantly shifting positions just to find a way to sleep without agony. Then, swelling appeared in that area of his back. He’s also lost weight rapidly and is looking somewhat jaundiced. After a month of dealing with the pain, he finally relented and went to the doctor. They sent him for a lung X-ray, and the results showed a 14mm shadow, suggesting it’s likely secondary. His liver enzymes are absolutely terrifying: GGT is over 1000, and AST is 500!! The doctor interprets this as metastases in the liver as well. The day before yesterday, they performed a biopsy on the mass (the report describes it as being the size of a baby's head), and the results confirm it is indeed metastatic. The doctor is being very pessimistic.

We still don't know exactly what kind of tumor we're dealing with. The doctor suspects it originated in the abdomen, but clearly, it has spread everywhere. Time feels like it's dragging for us; we can't wait long enough for that CT scan. Without it, we're stuck not knowing what our next move should be.

Does anyone have any advice on dietary supplements we could get him? Anything that might help him right now? He isn't eating much of anything.

Thanks

Linda Fox2 said:I’ve been reading through this thread over the last few days because my father-in-law was just diagnosed with cancer—well, it hasn't been officially confirmed yet, but it's currently being processed. He’s lying in the hospital right now waiting for a CT scan, which should happen next week. My husband and mother-in-law are incredibly anxious; according to the oncologist in San Francisco, the situation doesn't look good at all.

It all started about a month and a half ago when he came down with what he thought was just the 'flu.' After that, he began feeling pain in his lower back, though he just chalked it up to getting older, assuming it would pass if he saw a doctor. But the pain wouldn't subside. He was struggling to move, constantly shifting around trying to find a position that didn't hurt just so he could get some sleep. Then, swelling appeared in that area of his back. He's lost weight rapidly and looks somewhat jaundiced. After a month of dealing with this pain, he finally agreed to see a doctor. They sent him for a chest X-ray, and the results showed a 14mm shadow, suggesting it's likely secondary. His liver enzymes are catastrophic: GGT is over 1000, and AST is 500!! The doctor interprets this as metastases in the liver as well. The day before yesterday, they performed a biopsy on the mass (the report describes it as being the size of a baby's head), and the results confirm it is indeed a metastasis. The doctor is very pessimistic.

We still don't know exactly what kind of tumor we're dealing with; the doctor suspects it originated in the abdomen, but clearly, it has spread everywhere. Time feels like it's moving at a snail's pace for us, and we're just waiting for that CT scan. Without it, we're left wondering what our next move should be.

Do you have any advice on dietary supplements we could get him? Is there anything that might help him right now? He isn't eating much of anything.

Thanks

First and foremost, try to get a prescription for Megestat to help stimulate his appetite, along with Prosur, Ensure, or Supportive nutritional shakes. Those are essentially calorie bombs and are vital for maintaining muscle mass and ensuring caloric intake for patients. Both can be obtained via prescription, and all patients are entitled to them. You can buy these shakes without a prescription, but they cost about $14$5.00/each, and since Megestat is around $267, it's really not worth paying full price out of pocket.

Good luck!

Rachel Williams said:First off, try getting a prescription for Megestat to help boost appetite, along with some Prosur, Ensure, or Supportan drinks. Those things are basically calorie bombs and really help patients maintain muscle mass while they struggle to get enough calories in. Both types of items require a prescription, and cancer patients are entitled to both. You can buy the drinks over the counter, but they run about $14-$5.00 per bottle. As for Megestat, it’s around $267, so it’s definitely not worth buying without a prescription.

Good luck!

Thanks, Rachel. Do I need a specific recommendation from a specialist for those supplements, or is just showing the diagnosis report enough?

That was what they provided to my mother upon her discharge; they laid everything out clearly in her medical summary. Generally speaking, if a father-in-law is currently hospitalized, the doctor isn't permitted to issue any prescriptions.

Rachel Williams said:They gave that to my mom when she was discharged, and everything was laid out in her discharge papers. Generally speaking, if it's your father-in-law in the hospital, the doctor can't just write him any prescriptions they want.

Okay, I get it now. They’re focused on him right now. My husband tells me the doctor already wrote a referral for Prosur during the earlier exam.

I just hope we get that CT scan soon; everything feels like it's moving at a snail's pace. He was admitted this past Saturday, and now he's waiting over 10 days for the CT.

I’m honestly baffled that they didn't perform an abdominal ultrasound and a colonoscopy. Those results would have cleared up so much more and provided a clear roadmap for next steps, including whether surgery is even on the table.
It strikes me that we might be looking at a case of gastric cancer that's developing "dryly"—meaning he had zero other symptoms before these issues popped up along with potential secondary complications.
You really need to push back and find out why that ultrasound hasn't happened yet. It’s a quick, inexpensive test, and when you're dealing with suspected malignancies and secondary effects, every single day counts. In my opinion, pairing that ultrasound with a later CT scan would provide a much more precise and comprehensive picture of what's actually going on.

Angela Wright said:I'm surprised they didn't perform an abdominal ultrasound and a colonoscopy. Those results would have made everything much clearer and provided a roadmap for next steps (like potential surgery).
It feels like we might be looking at gastric cancer "blindly," considering he didn't have any other symptoms until these issues and probable secondary complications popped up.
Ask around about why that ultrasound wasn't done. It's a cheap, fast test, and when you're dealing with suspected malignancies and secondary issues, every single day counts. In my opinion, combining that ultrasound with a later CT scan would provide a much more precise and comprehensive picture.

Thanks for the reply. I forgot to mention that they did run an abdominal ultrasound upon his admission to the hospital, which showed masses on the liver. However, the complicating factor was that his abdomen was apparently full of gas, so the imaging wasn't very clear. That's how my husband describes it; I haven't actually seen the official reports since he was admitted.

The oncologist also suspects the primary issue is located in the abdomen. She didn't specifically mention gastric cancer. His lung markers are high, but the abdominal markers are even higher (my husband mentioned something over 4000, though I don't know the exact numbers).

He honestly had zero symptoms until about a month and a half ago when those liver masses appeared. Is it possible for metastases to develop there? And as far as I recall, isn't this unrelated to any specific organ, but rather involving the bone marrow?? If it is gastric cancer, from what I'm reading, that’s definitely not a good scenario. Although it does say elevated blood glucose is a common indicator, and his glucose levels are perfectly normal.

Linda Fox2 said:Thanks for the response. I forgot to mention that upon his admission to the hospital, they performed an abdominal ultrasound, which showed clusters on the liver. However, the complicating factor was that his abdomen was apparently full of gas, so the visibility wasn't great. That's just how my husband describes it; I haven't actually seen any of the lab results since he was admitted.

The Oncologist also suspects the primary issue is located in the abdomen. She didn't specifically mention the pancreas. The lung markers are high, but the abdominal markers are even higher (I don't know the exact values, but my husband mentioned something north of 4000).

He truly had no symptoms at all until about a month and a half ago when those lumps appeared on his back. Is it possible for metastases to develop there? How much is that related to the bone sheath—if I remember correctly? If it is pancreatic cancer, from what I've been reading, that isn't a good scenario at all. Although it says one common indicator is elevated blood glucose, his glucose levels are perfectly normal.

There can be issues on the back like you described involving that sheath, but my mother had them on her back too, which seemed like subcutaneous metastases—first one large one, then a few small ones, and eventually they were everywhere in different sizes. Regardless, unfortunately, the situation isn't looking good... I want to wish you all a lot of strength. Please, just come here with your questions. Everyone we know will help as much as we possibly can. 🙂

Linda Fox2 said:Thanks for getting back to me. I forgot to mention that when he was admitted, they did an abdominal ultrasound which showed some masses on the liver. But the tricky part was that his abdomen was apparently full of gas, so the images weren't very clear. My husband is just relaying what happened; I haven't actually seen the lab results since he was admitted to the hospital.

The Oncologist also thinks the primary issue is located in the abdomen. She didn't specifically mention the pancreas. His lung markers are high, but the abdominal markers are even higher (I don't know the exact numbers, but my husband mentioned something over 4000).

He honestly had zero symptoms until about a month and a half ago when those masses were found. Is it possible for metastases to develop there? How much of this is unrelated to any specific organ and just tied to the bone marrow?? If I remember correctly. If it's pancreatic cancer, from everything I'm reading, that’s definitely not a great scenario. Although it says elevated blood glucose is a common indicator, his glucose levels are perfectly normal.

It's possible he developed ascites (where fluid builds up around the liver).

Yeah, the situation definitely doesn't look good, and it seems like things have progressed quite far if the primary site isn't playing a major role. It's obvious something quite invasive and aggressive has kicked off here.
But it is what it is.
Hang in there everyone, and please keep us posted as things unfold.

Linda Fox2 said:Alright, I get what you're saying. It seems like everyone is looking out for him now. My husband mentioned that during the early checkup, the doctor had already put in a recommendation for Prosur.

We just need to hold out until we finally get that CT scan, though everything feels like it’s moving at a snail's pace. He was admitted to the hospital this past Saturday, yet he’s still waiting on the CT after more than ten days.

That is an incredibly long wait. Is the machine broken or something? And what exactly do you mean by "abdominal markers"? Please be specific about which markers you're referring to. There is no such thing as just "abdominal markers"—that's far too vague a term to be useful.

Raymond Smith53 said:That wait is way too long. Is the machine broken or what...? And what do you mean by "abdominal markers"? Please be specific about which markers. There’s no such thing as just "abdominal markers"—that's far too vague a term.

I have no idea why there's such a long wait for the CT scan; apparently, that's the earliest available slot. I agree, it feels like an eternity. It's going to take ten whole days just to get a concrete diagnosis and actually start treatment. We're waiting on this CT so we can immediately transfer everything over to NYC, but since we don't know exactly what we're dealing with yet, we don't even know which hospital to move her to.

I don't know exactly which marker it is either. I'm just getting updates from my husband, who doesn't see the actual results himself—the oncologist just gives him all the details verbally. Basically, her reaction to how high those markers are is that it's not good at all.

I'm scared the situation isn't great. They're ready to fight, but it feels like everything is moving in slow motion.

Has anyone else with a patient used CBD oil?

Linda Fox2 said:I have no idea why they’re making her wait so long for the CT scan; apparently, that’s the earliest available slot. Personally, I feel like she’s waiting far too long. It’s going to take ten days just to get a concrete diagnosis and actually start treatment. We are all just waiting on this CT so we can transfer her to Chicago immediately, but since we don't know exactly what we're dealing with yet, we don't even know which hospital to move her to.

I don't know exactly which marker it is. I'm just getting updates from my husband, who doesn't see the actual results himself because the oncologist refers everything through the information briefings. Generally speaking, her reaction to how high those markers are is that this isn't good at all.

I'm afraid the situation isn't looking great. They are ready to fight, but somehow everything feels like it's moving in slow motion.

Has anyone else here had a patient use CBD oil?

From the moment we were admitted to the hospital, we waited about three weeks for a definitive diagnosis in Chicago, so I wouldn't count on any kind of speed. It would have taken even longer if she hadn't been an inpatient; being in the hospital allowed her to secure earlier appointments. Back then, she went through two CT scans, a bronchoscopy, and I won't even begin to count the X-rays and blood tests.

We used the oil, almost from the very beginning. Doctors gave Mom about six months to live,
but she lived for more than three and a half years, and they were quite good years. During the last six months, bigger issues arose, but despite that, she was about 80% independent and 100% lucid. Of course, unofficially, doctors told us on several occasions that the oil was the only explanation for how much the disease had plateaued for so long.
I wanted to introduce beta-glucan right away, but after talking with the League Against Cancer (who are absolutely open to alternative options), we decided against it. The reasoning was that while beta-glucan definitely has an impact, it can be a double-edged sword; instead of stimulating healthy cells to multiply and regenerate, it could just as easily stimulate the tumor cells. We know plenty of positive stories regarding beta-glucan, but we didn't dare take the risk.
Also, there are supposedly some very good success stories with Brezov therapy—personally, we only knew one person who tried it twice, but there was no success whatsoever.

Given that the whole situation doesn't sound particularly promising, I would certainly wait for the final diagnosis before deciding if it's worth the risk of trying to source the oil. It is incredibly difficult to find the real thing, and there are so many scammers out there. There is a lot of money at stake, and despite all the advertisements and anecdotes, the oil itself isn't a magic cure-all.

Rachel Williams said:From the moment we were admitted to the hospital, we waited about three weeks for a definitive diagnosis in Chicago, so don't expect anything to move quickly. It actually would have taken even longer if she hadn't been an inpatient; being hospitalized helped her snag earlier appointments. During that time, she had two CT scans, a bronchoscopy, and I won't even get started on how many X-rays and blood tests they ran.

We used the oil almost from the very beginning. Doctors gave Mom maybe six months to live,
but she lived for over three and a half years, and they were pretty good years. We hit some bigger hurdles in the last six months, but despite those, she was about 80% independent and 100% lucid. Off the record, several doctors told us that the oil was likely the only reason the disease stayed stagnant for so long.
I wanted to introduce beta-glucan right away, but after talking with the League Against Cancer (who are totally open to alternative options), we decided against it. The reasoning was that while beta-glucan definitely has an impact, it can be a double-edged sword—instead of encouraging healthy cells to multiply and regenerate, it could just as easily stimulate tumor cells. We know plenty of people with great experiences using beta-glucan, but we just didn't want to take that risk.
Also, apparently there are some really positive success stories with the Brezov therapy—personally, we only knew one guy who tried it twice, but he didn't see any results at all.

Given how uncertain this whole situation feels, I would definitely hold off on a final diagnosis until you decide if it's even worth the risk of sourcing the oil. Finding the real stuff is incredibly difficult because there are so many scammers out there, and we aren't exactly talking about small amounts of money here. Plus, despite all the ads and testimonials, the oil isn't some magic cure-all.

Reddit thanks Rachel Williams for the insight; I'll send you a PM. Hopefully, we'll know more this week, and I'll check back in then.

Can someone give me a translation? 😁
In the right hemisphere of the cerebellum, there is a high-signal lesion measuring up to 10mm on the FLAIR and T2 sequences.
Should I be worried?
I’m seeing a neurosurgeon tomorrow with these results; honestly, I haven't been sleeping well lately.
And just like that, it's been 10 years since the tumor was first discovered and I had my first surgery.

feralridge3 said:Could someone give me a translation? 😁
In the right hemisphere of the cerebellum, there is an area of high signal intensity measuring up to 10mm on the FLAIR and T2 sequences.
Should I be worried?
I'm seeing a neurosurgeon tomorrow with these results; honestly, I haven't been sleeping well lately.
It’s hard to believe it's already been 10 years since they first found the tumor and I had that first surgery.

You'll have to go over everything with the neurosurgeon. Honestly, making prognoses is a thankless task at best, and when you're talking about the brain, it gets even more complicated. As for the sleep issues, that doesn't necessarily have anything to do with this.

My husband had his CT scan this past Wednesday. We haven't received the results yet, but hopefully my husband can track them down today. However, the oncologist already reached out to the radiologist, who suggested it’s likely colorectal cancer. He was actually scheduled for surgery today to biopsy a portion of the metastasis near the liver, but based on what they saw on the CT, they've decided to pivot to a colonoscopy instead to pull tissue samples for a biopsy—presumably from the colon.

The colonoscopy isn't happening until Monday, and now we're stuck waiting two weeks. Once the colonoscopy is done, they should let him come home. Is it normal for everything to move this slowly? I mean, from the time he was admitted to the hospital on May 5th, it looks like it’ll take a full month before we even have a final diagnosis and know what the next steps for treatment are. Does it make sense to send him to the Chicago Cancer Clinic for further treatment after the colonoscopy (since we're here in San Francisco), or should we wait for those biopsy results before we start arranging a move to Chicago? This whole process feels incredibly sluggish, and it feels like time is just slipping away without any real action being taken.