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

velvetviper4 said:Dear friends,

Rodak, who is 30 years old, has been diagnosed with Ewing sarcoma starting in the pelvis, which has metastasized to the lungs. Apparently, it is quite large; currently, surgery isn't an option because it’s pressing against the heart. He is undergoing chemotherapy—he has finished two rounds so far, with four more to go.
Please, if any of you have experience with this, or if someone close to you has gone through it, help us with some advice. This is our first encounter with all of this, and we are completely lost....

Excuse me, I am new to this forum and just saw the comment,
I am 26 years old. Two years ago, I was diagnosed with Ewing sarcoma in my pelvis—it was the size of a handball—which had spread to my lungs, my sacrum, and some vertebrae. I also had a benign brain tumor (an ependymoma), which they removed later on. The doctors gave me a prognosis of only 3 months to live...🙄
They put me on chemo to shrink the tumor enough so it moves away from the kidney, so that surgery might actually be possible.
To date, I have received 20 rounds of chemotherapy and 40 fractions of radiation; specifically, 37 fractions on the L3 and L4 vertebrae, and 3 fractions near the site of the ependymoma in my head (post-surgery).
I handled the chemo surprisingly well! In two years of treatment, I haven't vomited even once. My hair fell out, obviously, but I’m already bald anyway, so that was fine...
When the doctor saw me after two years, he looked like he had seen a ghost. He told me not to be angry with him, but admitted he truly thought he would never see me again...
The tumor has almost vanished. I am walking normally again, and most importantly, the pain is gone.
Not everyone reacts the same way; therapy affects every person differently. Do not lose hope—stay positive. Ask every single question you have.

Warm greetings to everyone. I have been meticulously reading through almost this entire thread, along with several other discussions regarding tumors.

Since I know every single case is unique, I am reaching out to ask for your help and insight.

A few days ago, my Dad was admitted to the hospital because he became disoriented; his behavior was erratic, and he was confusing basic concepts. Aside from that, he hasn't shown any other symptoms.
An MRI revealed a mass that they suspect is a malignant tumor, specifically coded as C71.1.
He is scheduled for stereotactic surgery this Tuesday, but I’m honestly struggling to understand exactly what that entails. Is it primarily for taking a sample, or is it more of a minor surgical procedure? It seems unusual to me that he would need to stay at the Mayo Clinic for five days just for that.
One last question: what are the odds that a biopsy might reveal an error and show that the case is actually benign?

I realize we shouldn't dwell on "what ifs," but we are all incredibly on edge right now.

I also wanted to express how immensely important this group has been to all of us navigating this nightmare. If you hadn't been here last week... I think I would have lost my mind. But I'm sure you already know that.
I would personally hand you a Nobel Prize for... well, for everything.🙂

Grace Ross20 said:Sending my best to everyone here. I’ve been reading through almost this entire thread—and all the other ones about tumors—with total focus.

Since every single case is unique, I’m reaching out because I really need some help.

My Dad was admitted to the hospital a few days ago because he was acting disoriented, behaving strangely, and mixing up his words. Other than that, he hasn't shown any other symptoms.
An MRI revealed a mass that they suspect might be malignant, coded as C71.1.
He’s scheduled for stereotactic procedures this Tuesday, and honestly, I’m not entirely sure what that entails. Is it just taking a sample, or is it more like a mini-surgery? It seems odd that he’ll be staying at the Mayo Clinic for five days just for that.
One last thing: what are the odds that a biopsy reveals the doctors were wrong and it turns out to be benign?

I know we shouldn't obsess over every little detail, but right now, we are all incredibly on edge.

And I want you all to know how much this group means to those of us going through this. If you guys hadn't been here last week... I think I would have lost it. But I'm sure you already know that.
I’d give you a Nobel Prize for, well... something.🙂

It’s a highly precise, targeted procedure involving a puncture to access cerebrospinal fluid, where they expect to find malignant cells if it truly is a cancerous tumor.
Unfortunately, it isn't rare that I can get a pretty good idea of what we're dealing with just by looking at the characteristic appearance on a CT scan, though let's hope the pathology from the puncture—which is the only definitive way to know for sure—proves me wrong. Additionally, puncturing the fluid that has built up due to the tumor should actually provide some relief; the mass is putting pressure on the brain, which is why he's experiencing those neurological outbursts and other issues.
I hope you're at the Mayo Clinic neurosurgery department.

Angela Wright said:This involves a highly precise, targeted cerebrospinal fluid puncture, which should ideally capture malignant cells if we are indeed dealing with a cancerous tumor.
Unfortunately, I often find myself making an educated guess based solely on how things look on a CT scan, though let us certainly hope the PHD puncture—which remains the only truly reliable way to confirm exactly what we are facing—proves otherwise. Furthermore, performing a lumbar puncture to drain the fluid accumulating due to the tumor should provide some relief; the mass is exerting pressure on the brain, which is precisely why he is experiencing those neurological outbursts and other symptoms.
I hope you are over at the neurosurgery department at the Mayo Clinic.

Yes, we are at the Mayo Clinic, and Dad actually got seen quite quickly.
His tumor is 5cm, though I have no idea if that size makes it operable. It’s located in the frontal lobe.
I’ve been reading through this thread and elsewhere, and apparently, these kinds of tumors can go absolutely haywire when surgeons touch them, becoming even more aggressive.

So, after the stereotactic procedure, will Dad's speech return to normal? It isn't that he's impossible to talk to, but for instance, he'll call my keys a "coat," or he won't be able to remember someone's name—today he actually called the ambulance driver by our dog's name.

What strikes me most is how he won't even dare to glance at his discharge papers, and I honestly don't know how he's going to react once the diagnosis is official. We aren't telling him anything yet because, truth be told, he gets as frightened as a little child. He has never been one for doctors; we practically had to force him into the ambulance once we realized something was seriously wrong.

Grace Ross20 said:Yeah, we’re talking about the Mayo Clinic here, and Dad really got moved up the line faster than we expected.
His tumor is 5cm, though I have no clue if that's actually operable. It's located in the frontal lobe.
I’ve been reading through this thread and other places, and some people say that when surgeons start messing with tumors like this, they can go absolutely haywire and become even more aggressive.

So, after the stereotactic procedure, is he supposed to get his clear speech back? It's not like he can't talk, but he'll tell me he needs his "coat" when he's looking for his keys, or he'll forget someone's name entirely—like today, he called the ambulance driver by our dog's name.

What's really tripping me out is how he won't even look at his discharge papers, and I have no idea how he's going to handle the actual diagnosis. We haven't told him anything yet because, honestly, he’s as scared as a little kid. He's never been one for doctors; we practically had to drag him into the clinic once we realized things weren't right.

It’s possible he might see some improvement.
Size isn't the only factor in whether or not surgery is an option; it's also about how close it is to critical areas. Once the pathology results come back, they'll map out the next steps and decide if surgery is even on the table.
As for those cells "going wild," that usually refers to a recurrence or a partial removal during a re-operation.

Angela Wright said:There is definitely a chance things could improve.
It isn't just about the size of the tumor that determines if surgery is an option; we also have to look at how close it is to critical areas. Once the pathology results are back, the doctors will sit down and map out the next steps—deciding whether surgery is actually feasible or if they need to take a different route.
As for the "wild" cell growth, that usually comes into play when you're looking at a recurrence after a previous surgery or if they've only managed a partial resection of the tumor.

Angela, from what I've gathered, you mentioned once that you regretted your mother choosing an alternative approach instead of the standard surgery followed by chemo or radiation.
What kind of methods did you guys try, and looking back, what would you do differently if you had the chance?

Grace Ross20 said:Angela, from what I gathered, you mentioned once that you regret your mom choosing an alternative route instead of sticking to the standard surgery plus chemo/radiation combo.
Which method did you guys actually try, and if you had the chance, what would you do differently now?

I’d insist on a re-operation once the recurrence hits. She initially turned down radiation and chemo right after the first surgery. That was her choice. But when the recurrence showed up right along the surgical incision, they refused to operate again, claiming she had rejected oncological treatment, so they wouldn't—or couldn't—operate a second time. They should have done it, and honestly, she really should have just accepted the radiation and Temodar after that first surgery.
She went to see a bioenergetic healer instead.

I just wanted to give everyone an update: Dad is currently at the Mayo Clinic waiting for his stereotactic procedure scheduled for this Saturday.
I can't shake this nagging feeling that the tumor might not be operable. How devastating is that for the whole prognosis? Honestly, I feel like I’d breathe easier if they could just get that evil thing out of his head; it haunts me to know it's sitting in there, and every time I look at him... I don't even know.
It's just this overwhelming sense of helplessness and despair. I know most of you here have already walked this same path.

I've been reading "Fighting Cancer: A New Way of Life," and it has only made me more livid.
They systematically destroy our health just to line their pockets, and we all just sit there in silence—suffering a little, getting angry for a moment, but once the pain and rage subside, we go right back to being submissive, picking up our groceries at Walmart and filling our carts with junk.

Angela Wright Asks:
It has expanded quite significantly. However, whether the involvement extends from the bladder to the large intestine or vice versa remains unclear. Statistically speaking, isn't it more probable that we are looking at the large intestine?
We are dealing with metastatic disease, which is inherently a complicating factor. Is there any other way to view it?
Hope is always a factor, even if we remain realistic. Let us hope the treatment proves effective enough to at least reach disease stagnation without further metastasis. One simply has to live day by day with a clear, steady head.

Sent from my Samsung Galaxy J5 via Twitter.

Angela Wright’s colonoscopy came back clear, and the tumor markers are normal. We are heading to see the surgeon who handled the bladder procedure this coming Monday to get more clarity. Is this actually a positive sign? It is certainly a relief to know it isn't in the intestines.🎉

Let's just hope that the surgery actually managed to get everything out.

Does anyone here have verified information on which immune boosters are actually safe to use while undergoing chemotherapy and radiation?
My Dad's Glioblastoma is inoperable, so this will be his primary course of treatment.
Also, does anyone know if it might become possible to surgically remove the tumor if the therapy successfully shrinks it?
I would ideally ask the doctors directly, but honestly, it feels nearly impossible to get any clear information out of them...

Grace Ross20 said:Hey everyone, does anyone know for sure which immune boosters are actually safe to take while going through chemo and radiation?
My Dad's Glioblastoma can't be operated on, so this is basically his main line of defense.
Also, does anyone know if it's possible to go in for surgery if the therapy manages to shrink the tumor down first?
I’d ask the doctors, but man, it is so incredibly hard to get straight answers out of them...

Hey there,

I’m currently right in the middle of chemo and radiation myself (dealing with pelvic issues), and because of the radiation, I've been told to stay away from supplements—things like multivitamins, mushrooms, or minerals—but you definitely need to run it by your oncologist first...

Hang in there!

Kate Morgan66 said:Hey,

I'm currently going through chemo and radiation (it's hitting my pelvic area) and because of the radiation, I've been told to stay away from supplements (multivitamins, mushrooms, minerals) but you absolutely have to check with your oncologist first before trying anything...

Good luck!

Exactly..

Watch yourselves with those supplements.. food, herbal remedies, and pills can all mess with your meds.. obviously you gotta be extra careful when you're fighting cancer..
(For instance, there are over 85 different drugs that you can't touch if you've had grapefruit.. and it's not just about eating it right then; the interaction can still kick in up to 24 hours later)

There was this study called "the incidence of potential interactions between dietary supplements and prescription medications in cancer patients at a veterans administration hospital" which found that out of 200 patients, 121 of them—that's 61%—were taking some kind of supplement..
The big ones were multivitamins at 80.3%, minerals at 40.6%, and herbal stuff at 24.8%..

Out of those, 65 patients (54%) were juggling more than one supplement, yet only 28% actually had it noted down in their medical records..

And get this: 12% of those patients were facing a real risk of drug interactions!

Basically, for people dealing with cancer, the usual suspects for interactions are:
garlic, green tea, mistletoe, Chinese herbs, iron, St. John's Wort, ginger..

Seriously, talk to a pro before you start popping any supplements..

Grace Ross20 said:Does anyone know for sure which immune boosters are safe to take during chemo and radiation?
My Dad's glioblastoma is inoperable, so this is his treatment plan.
Also, does anyone know if surgery becomes an option if the tumor shrinks due to therapy?
I’d ask the doctors, but trying to pull information out of them feels like pulling teeth...

When you're right in the middle of active treatment, the smartest move is actually to take nothing at all. A lot of these "immune boosters" are essentially heavy-duty antioxidants that mop up free radicals. Here’s the catch: chemo is specifically designed to use those very same free radicals to attack the malignant cells. If you neutralize them with supplements, you might actually be sabotaging the effectiveness of the treatment. Between cycles of Temodar, however, you can definitely use immune boosters to help rebuild and prep the body for the next round. It's best to get these from a pharmacy. Think things like beta-glucan, aloe, or native propolis—but don't overdo it. Stick to no more than three, and make sure they complement each other rather than conflicting. You want a consistent regimen, not a revolving door of different pills. Stick to one strategy for as long as possible.
Go grab the book "Fighting Cancer" by David Servan Schreiber from Planetopia. I can't recommend it enough. He dealt with the exact same diagnosis for nearly 20 years, and he lays out every crucial aspect of the fight, focusing heavily on nutrition, lifestyle, and how to choose supplements wisely.
EDIT: Just realized you already have the book. Stick to the advice inside. Sadly, I didn't get my hands on it until after we lost the battle. I had to learn many of those lessons the hard way. For me, that book is the Holy Bible for fighting cancer.

Has anyone here dealt with this kind of surgery before?

Dad is scheduled for this exact procedure in just a few days... 😢

Dana Martin87 said:Has anyone here actually dealt with this type of surgery before?

My Dad is scheduled for this exact procedure in just a few days... 😢

I don't have firsthand experience, but I know the late Victor was supposed to go through this based on his posts here, though his overall condition was just too poor at the time.
Honestly, I don't see any downside here, and there's a massive potential upside. If it were me—or heaven forbid, someone close to me—facing this stage of the disease, I’d take that leap without a second thought.
There's also another similar approach involving nanoparticles injected via a glucose contrast solution before being placed in an MRI machine. Under the intense magnetic field, those nanoparticles heat up significantly. Since tumors aggressively pull in glucose, they basically suck the particles right in, and the cells get targeted and literally scorched.
In France, doctors are already using this method to treat brain tumors that were previously considered inoperable.

Dad was told he’s heading into surgery now, and starting in January, he’ll be moved onto a new drug protocol because neither the Folfox nor the Folfiri plus Avastin regimens did the trick. He actually handled those heavy-duty chemo rounds like a champ, but unfortunately, the cancer cells handled them even better.
Right now, he feels great. He’s constantly on the move—carrying my 35-pound daughter around, helping Mom with everything at home, doing the dishes, running errands, even traveling abroad... He isn't in pain, except for occasional sharp stabs under his Ribs where two more tumors have popped up. The worst part is the lung metastases, so I honestly don't know how much sense this surgery makes, but the doctors suggested it, and Dad feels like he has nothing left to lose, so there's no point overthinking it.
He’s already made it through one beautiful year, even though the initial prognosis was only a month or two.
I really want to connect with someone whose loved one (or they themselves) went through a procedure like this, just so we can prepare for what comes after. The doctor warned us the surgery would be brutal, lasting 10 to 12 hours, with a grueling recovery ahead. What I really need to know is what happens next—will Dad be able to stay as active as he is right now?

I don't really have direct contact with the doctors; I only know what Dad tells me. He didn't even tell me about the lung metastases; I had to sneak a look at the scans myself. He also refuses to let anyone visit him in the hospital after the surgery. After his first operation, only my husband went to drop off some things. He hates having people fuss over his illness or treating him like a patient. Since he’s always been the rock of this family, it’s vital to me that he doesn't end up bedridden for long, but stays active until the very end. Mentally, he just couldn't handle anything else.

I get the picture. But if there's one thing I've learned from our story, it's that trying to prep for everything in advance never actually yields results. Honestly, all it does is drain you mentally and emotionally. The best approach is to just deal with things as they unfold, adapt on the fly, and try to maintain some level of inner peace. Respect Dad's decisions. It’s incredibly important to him that he maintains his integrity at this stage, and that's likely what keeps him going.
As for the procedure itself, if it wasn't a viable option for him, they wouldn't have even suggested it. He has a massive chance at extending a high-quality life, and it's honestly encouraging that the doctors haven't given up on him—believe me, if they were going to pull the plug for pragmatic reasons, they would have done it by now. Clearly, they see it as "worth the investment" to put in the effort because they truly see room for improvement.
I’d lean toward being optimistic; after all, whatever happens, only God knows.

Angela Wright said:I understand completely. But if there is one thing I have learned from our shared experiences, it is that any attempt at advance preparation for anything rarely yields results. If anything, it only serves to exhaust me mentally and psychologically. It is better to simply deal with things as they unfold, adapting to the situation while striving to maintain maximum inner peace. Respect Dad's decisions. It is incredibly important to him that he maintains his integrity at this level, and that is likely what keeps him going.

Dear Angela Wright, I don't post much here, though I read everything regularly. You actually wrote something very similar to someone else once before, and I remember reading it when my mother was diagnosed with Stage IV metastatic lung adenocarcinoma two years ago. How difficult it was to accept and apply that advice at the beginning... yet now, more than two years later, I can truly say this is one of the best pieces of wisdom one can receive in these circumstances. Thank you for writing all of this for us and answering our questions, even though, for you, this personal chapter ended a long time ago.

It’s been about three or four months since I was here asking for advice regarding my father-in-law, and unfortunately, he passed away just two months after his diagnosis. So, here I am again, though I suppose it's too late for any advice now. I'm sitting here by my sister's bedside, just watching her breathe. She was diagnosed a month ago—bronchial cancer with metastases in her brain, lungs, and bones. She's been at Rockefeller for about twenty days now. In the beginning, she had periods where she'd be awake for an hour or two, but for the last three days, she hasn't woken up; they've been ramping up the morphine. They tell me she isn't in pain, that her heart is strong and she's a fighter. But today she ran a fever, and her hands have started to swell slightly. The doctors won't give us a prognosis. How long can someone stay in this state? It is absolutely devastating to watch someone so young go through this.