Support resources for families dealing with cancer and other serious illnesses

She was prescribed Dexamethasone to help reduce the brain swelling.
She thinks it's Sutent. Honestly, she just isn't someone who can handle the full truth.
Regarding the brain metastases, we've reached an agreement with the oncologist that we’ll take until the next appointment to decide whether or not to proceed with radiation.
Those kidney tumor metastases aren't going anywhere; they're just going to shrink.
Sutent is off the table because it causes the blood vessels at the tumor site to rupture and bleed, which is a risk we absolutely cannot take.
Is there anything else we can do?
She came home from the hospital in a terrible mental state, but she's doing better now.

If we tell her about the brain situation and she starts radiation, that’s essentially the beginning of the end.

I'm at a loss for what comes next.

briskbison27 said:She was given Dexamethasone to reduce the brain swelling.
She thinks it’s Sutent. Honestly, she isn't really someone you can count on for the unvarnished truth right now.
Regarding the brain metastases, we've reached an agreement with the oncologist to take some time before the next appointment to decide whether or not to proceed with radiation.
The kidney tumor metastases aren't going away; they're just going to shrivel up.
Sutent is off the table because it causes the blood vessels near the tumors to rupture and bleed, which is a risk we simply cannot take.
Is there anything else we can even do at this stage?
She came home from the hospital in a terrible mental state, though she seems stable for the moment.

If we tell her the full extent of what's happening with her brain and she decides to go through with radiation, it feels like the beginning of the end.

I'm at a loss for what comes next.

Actually, it might be worth reaching out to a psycho-oncologist. Our friends over at the Food pantry have access to specialists like that, much like the folks at the All for Her association.

Angela Wright said:Lymph is essentially one of those fluids circulating through the body that starts out as interstitial fluid before being filtered into the lymphatic vessels. Once it enters the system, it travels through at least one lymph node before eventually draining back into the left or right subclavian vein to merge with the bloodstream. In this case, the disease has spread to those nodes via metastasis—which isn't exactly an anomaly, given how both blood and lymph allow malignant cells to migrate and establish themselves elsewhere in the body. This is precisely why cancer treatment typically involves chemotherapy alongside targeted radiation of the primary site; the goal is to hunt down those lingering rogue cells drifting in the blood...
It really comes down to whether those affected lymph nodes can be surgically removed.

But what happens if surgery simply isn't an option? If they resort to chemo or radiation instead, is it actually possible to completely eradicate those malignant cells? I’m asking as a complete layperson here... I don't claim to know any better... I could probably spend hours lost in medical journals trying to decipher this, but at this moment, I find it much more reliable to simply turn to you for clarity, since you clearly have the expertise...

Thank you, sending love to all the fighters

Angela Wright said:Look, this isn't ideal, but I certainly wouldn't be making definitive claims from your position... Why jump to conclusions before the data is even in?🙂
They are currently consulting with the oncologist who will be overseeing the next phase of treatment. They need to determine if the tumors are surgically removable. Furthermore, brain lesions can be quite sensitive to radiation therapy...
Please, don't give up on her so easily; it simply isn't fair to her. And you actually have the power to influence how that injustice unfolds...

One must accept certain realities, namely that there are diseases that recur and where such scenarios are entirely possible. It serves no one to complicate things by claiming some people get nothing while others get everything; that has no bearing on the current situation. Just consider how many years she has managed since the initial diagnosis. Sadly, some pass away within months, yet she has been granted quality of life and precious time, and we ought to fight to secure more of that...
I understand your despair and frustration, but speaking from experience, those emotions are ultimately counterproductive if your goal is to help both her and yourself...
Try to focus on what truly matters, which is doing everything humanly possible to address the situation without falling into hysteria or panic, as such states only lead to poor decision-making...

I am in complete agreement with these sentiments... because one should never surrender, not even when the end is genuinely near. Every new day provides momentum for the struggle... every possibility justifies being seized...

I recently watched an American news segment regarding malignant diseases and how modern medicine allows people to live with certain diagnoses much like one lives with the flu. Because prevalence is increasing, issues are often overlooked due to a lack of awareness—a sort of "live and let live" mentality. But the reality is that every patient is an individual, regardless of their place in the statistics, and they deserve the best possible care without anyone ever throwing in the towel...

Tears solve nothing, and hysteria or panic act as great drains on energy... for both the patient and the family, the mental state of everyone involved—especially the patient—is paramount. Discussions about the end are discouraging for everyone... though they are hardest on those forced to live through it. It is far better to motivate the person, if at all possible, and put in the effort so they can see the progress they've made...

My mother, through her constant denial of her illness, somehow manages to cheer us up, though in another sense, it is heartbreaking because she occasionally behaves like a child, refusing to face reality even after three years. We grant her freedom up to a certain point... which leads to some rather absurd whims. At times, she has "good days" and will lucidly accept advice to rest. One day, she even mentioned wanting to join a local gym. Had she not explained it in a humorous way, it would have been quite tragic, considering she would struggle to walk without the brace she wears. But she wants muscles... :-)

In closing... she leaves us all with that Churchillian sentiment: "Man's greatest enemy is his own fear"...

Hang in there...

Well, I’ve finally decided to weigh in on this mess myself.
It’s been three and a half years since I went under the knife for colon cancer, and even after God knows how many tests and screenings, those doctors somehow completely missed the fact that my colon had actually ruptured, which sent me straight into septic shock.
The surgery went fine, I guess, but then things went south fast because sepsis caused the wound to burst open, leaving me stuck dealing with it for five agonizing months with dressings being changed every other day. Once that was finally over, I had to grind through six rounds of chemo, which, honestly, I handled like a champ.
So, the metastases showed up in the liver, but thank God they’re small enough that my surgeon says we can actually go in and cut them out. Since I’m facing surgery, I need to know what kind of follow-up I should be looking for—specifically, what type of chemotherapy drugs should I be asking about to make sure this thing doesn't come back?
I’m doing alright, physically and mentally, I guess. I’m not exactly thrilled about having to go back under the knife again, but honestly, I refuse to let this little piece of work break me.
I’m based out of Indianapolis and I am more than ready to step up and help anyone who needs it, whether that means just being someone to talk to or offering whatever other kind of support I can possibly muster!
Let's take this jerk down.

Robin Martinez712 said:I figured I’d jump in here and share my own story too.
About three and a half years ago, I had surgery for colon cancer. Despite all the screenings, things were missed, my colon perforated, and I ended up fighting sepsis.
The initial surgery went okay, but because of the sepsis, the wound opened up, leaving me with five long months of healing involving dressing changes every other day. After that, I went through six cycles of chemo, which I actually handled quite well.
Now, some metastases have shown up in my liver. Fortunately, they’re small and, according to my surgeon, still operable. Does anyone have recommendations for specific drugs or types of chemotherapy I should discuss with my doctors once this next surgery is behind me?
Physically and mentally, I'm holding steady. I'm certainly not thrilled about heading back under the knife, but I refuse to let this little, sneaky bastard break me.
I'm based out of Indianapolis, and I’m more than willing to help—whether it's just talking things through or any other way I can manage—to anyone who might need a bit of support.
Let's take this thing down

you'll find a bit more information here...

I read it. Thanks. I know everything is going to turn out just fine.

Nancy Hernandez43 said:What happens if surgery isn't an option? If they have to fall back on chemo or radiation, is it actually possible to wipe out those malignant cells entirely? I’m asking as a total amateur here—I don't want to spend hours digging through medical journals trying to make sense of it all, so I figured it was safer to just ask you since you actually know what you're talking about.

Thanks, sending love to everyone fighting this fight.

Look, my take is that most cases are surgically removable, and if they can't cut it out, they'll pivot to radiation or chemo, assuming those treatments are available.

If none of that works, then the focus shifts to palliative care.

You should really take this question over to the Stonewall Jackson Foundation forum. They have specialists there who are far more qualified than I am.

Angela Wright said:I am of the opinion that, in most instances, such issues are surgically removable, whereas those elements deemed impossible to excise would likely necessitate treatment via radiation or chemotherapy, provided any of those options are even available at a local hospital...

If that isn't the case, one simply moves toward palliative care...

Go ahead and post that inquiry on the Stonewall Jackson association forum. She’s certainly far more qualified than I am...

I am grateful for your assistance, and I shall endeavor to follow up with specific inquiries once the results from my PET/CT scan have finally arrived...

Nancy Hernandez43 said:Thanks, I'll try to be more specific once my PET/CT results come back.

Just a heads up, PET scans can throw false positives when it comes to those little nodules, so if anything shows up, they’ll probably jump straight to a biopsy first.

I’ve been lurking here for about two years now, reading through everyone's stories, but I never quite found the courage to actually post until today. My world was completely shattered when my husband was diagnosed with kidney cancer; during his surgery, they discovered it had already spread to his lungs. It felt like the ground disappeared from beneath my feet because, up until that exact moment, he had been the picture of perfect health. We managed to get him on Sutent, even though he wasn't officially on the approved list yet, and we fought with everything we had until last year, around nine months ago, when the medication finally stopped working. What started with fluid buildup in his lungs eventually progressed to metastases in his brain. By February 12th—just this past second—my soulmate was gone, and he was only 42 years old. We tried everything imaginable: macrobiotics, energy healers, Megamin, endless dietary supplements, consultations at Mayo Clinic, you name it—but nothing worked. The illness was simply more powerful than he was, and he truly was an incredibly strong, positive man right until the very end. I just need to say out loud that none of it mattered; I feel such a deep sense of anger toward Sutent and everything else, because the suffering he endured, and the pain we all felt, was just too much to bear. Please forgive me for such a long post, but I just felt this overwhelming need to tell someone.

Nancy Ward16 said:I’ve actually been lurking on these forums for two years, but I never quite found the nerve to jump in and post. My husband was battling kidney cancer, and during his surgery, they discovered metastases in his lungs. In an instant, my entire world just collapsed because, up until that moment, he had been the picture of health. We managed to get him access to Sutent, even though it wasn't officially on the approved list yet, and we fought with everything we had until last year, about nine months ago, when the drug just stopped working. It started with fluid in the lungs and ended with tumors in the brain. On February 12th, my love passed away—he was only 42. We tried everything: macrobiotics, bioenergy healers, Megamin, countless supplements, seeing specialists at Mayo Clinic, you name it—but nothing worked. The disease was simply more powerful than he was, and he was a truly strong, positive man right until the very end. I just want to say that none of it mattered; I'm angry at Sutent and I'm angry at everything else, because the suffering was just too much for him and for all of us. Please forgive the long post; I just felt this overwhelming need to tell someone.

Dear Nancy Ward16,
I know the pain is unbearable, and that anger is just as heavy... unfortunately, as you said yourself, the disease was simply stronger. All we can do is try to adapt to this new reality, accept the facts, and somehow find a way to move forward. It’s incredibly hard, I know, but there isn't any other way.
If you are living in Washington, D.C., I would strongly suggest looking into grief support groups through the Krijesnica counseling center. It might help you process everything tearing at your heart right now so you can eventually begin to heal.

However, I don't want to discourage anyone with your experience, because
there are people who have seen real improvements and extended lives thanks to Sutent. There is a woman who led the charge to get Sutent listed on the approved medication registry, and she is living a very high-quality life today. Sutnet worked exceptionally well for her—so much so that her metastases actually regressed.
Sadly, it works for some and not for others. We are still just stumbling around in the foyer of individualized cancer therapy. One day—not far off in the future—every single person will have their own tailored treatment: a specific protocol, custom dosages, everything customized to the individual.

It was never my intention to discourage anyone; I truly understand how Sutent works, and for a while there, we actually managed to maintain a sense of normalcy for nearly a year, though unfortunately, we weren't able to sustain it. I am genuinely heartened to hear that she is doing well, and please know that we have been following her fight for access to Sutent with such hope. I empathize deeply with everything you are all going through in any battle against cancer, and my sincerest wish is for every single one of you to emerge victorious—it is an incredibly difficult road. Sadly, we aren't located near Washington, D.C., so accessing the kind of psychological support that would be so vital for both me and my children, who are also struggling deeply with this, isn't easily within our reach. Wishing strength and luck to all the fighters out there.

Angela Wright said:Wouldn't he actually gain more credibility in my eyes if he were just honest about the uncertainty? After all, doctors are human beings first and scientists second, and even the most brilliant minds have to face the fact that so many things remain mysteries to us all! To me, he is primarily a man before he is a physician, and since he certainly isn't God, how could he possibly claim the divine authority required to issue a definitive prognosis like "you only have one year left"? Whether one approaches life through faith or science, shouldn't we leave the ultimate turn of events to God or the unpredictable forces of nature? As a true professional, wouldn't it be much more dignified to refrain from such bold predictions and instead offer us meaningful insights based on the actual statistics?
What does it actually mean to be "realistic"? Is it simply clinging to credibility by obsessively clutching at statistics and insisting that a situation is utterly hopeless? If that were the case, then what is the point of medicine or doctors in the first place, given that we are all destined to pass away eventually, objectively speaking? Miracles—whether medical or otherwise—don't just happen in some distant parallel universe; they occur right here, every single day, in our actual reality! Perhaps they don't happen nearly as often as we might wish them to, but they certainly do exist! You, me, my mother, every one of us deserves the right to believe in that possibility without having someone swoop in immediately to nip that faith in the bud, don't you think? Hope should always be the very last thing to die.
What are the actual odds of someone plummeting from 4,500 meters without a parachute and walking away with nothing more than some broken ribs and a fractured leg? Is that just a pure medical anomaly, or could we be looking at a genuine miracle from God? And honestly, do you even think that person cares about the "how" anymore? He’s finally back among us, isn't he! Isn't it just wonderful news?

It seems I was mistaken once again when I suspected something was amiss with our oncologist—just as I previously felt that same unsettling intuition regarding the neurosurgeon! Isn't it fascinating how we can fall prey to that unmistakable "God complex" so often? I actually reached the point where I started questioning my own perception, wondering if perhaps my expectations were simply too high, because I constantly feel as though she—and he did this once as well—is playing God with everyone else's lives. Am I just a mere mortal caught in the middle while she holds my mother’s life entirely in her hands, only to ultimately decide its fate with phrases like, "I'm not quite sure," or "I need to consult with the team first"?
When I read that other patients have gone through similar experiences, I can't help but feel that the medical staff isn't quite handling things the right way. Is it really appropriate for them to maintain such a cheerful, upbeat demeanor while delivering life-altering prognoses? Personally, I find myself staying silent when faced with those kinds of attempts at optimism, because isn't it true that only God should decide our ultimate fate rather than a group of doctors? I also find myself struggling deeply with the decisions being made within the oncologist's domain. At the start, I was told there would be 21 radiation sessions, then suddenly it shifted to 25, and now, just when I thought I understood, she tells me it will be 30! Why wasn't I given the full picture from the beginning? It’s so incredibly confusing. Then, there was the matter of the MRI; she initially mentioned needing it 30 days after radiation, though she expressed doubt we could even get an appointment given the six-month waiting lists. After we went through all the trouble of using connections to secure a slot just four weeks after treatment, she suddenly informs me that three weeks is actually the requirement! Surely she knew this much earlier, didn't she? Well, we will simply try our best to get everything finalized.
When we first sat down for the radiation consultation, she told me quite confidently that chemotherapy wouldn't even be necessary! But then, just a few days ago, she comes back to me with this rather peculiar little smile and says, "Of course you're going to need it." Well, I didn't blink; I simply told her that the cost wasn't the issue—just give me the names of the medications so I can start tracking them down. She pulled out a list of three drugs—CCNU, Procarbazine, and Vincristine—and mentioned they would run about $350. I assured her immediately that money was no object and that I’d get right on it, especially since these aren't things you just pick up at a local CVS but have to order specifically. I actually called around later to check prices, and while they ended up being more than double what she claimed, that isn't really the point here, is it? The real kicker was when I told her the expense was fine, only for her to suddenly pivot and claim she wasn't actually sure if she would even prescribe the chemo yet—almost as if she couldn't decide if it made sense until after the MRI results were in! I just sat there in silence. And then came the final blow: after all that hesitation, she suggests that while she still needs to "think about it" or "consult with colleagues," she actually thinks a different option would be better. She started recommending Temodal, which is an incredible drug, but one we absolutely cannot get covered by our insurance for this specific diagnosis. It costs roughly $15,000! She looked at me with this expression, almost as if she were waiting for me to admit we couldn't afford it so she could politely, but firmly, dismiss us from her office forever... Can you believe the audacity? I was honestly too stunned to say anything during that ten-minute encounter, but I've finally processed the sheer absurdity of the conversation and have started calling around to pharmacies to get some real answers.
But isn't the real question just so vital—how can someone who appears to have absolutely no clue about what they actually need, which dosages are required, when to start, or how long the treatment should last, and who acts like they couldn't care less about any of it, make decisions entirely on an ad hoc basis? How am I supposed to find the strength to trust them or know how to act in the end, especially when seeking a second opinion from another oncologist feels like walking straight into a lion's den where they might all turn on me at once? I truly don't know what to do...

Angela Wright said:

Yes, I caught that article, and I have to admit, I’m feeling a heavy sense of disappointment all over again. It feels as though the window of opportunity has already closed for us; if this had arrived just a little sooner, perhaps the support we were looking for could have helped him stay with us just a bit longer. While it is true that he is being utilized abroad and showing such promising results, there is still a bittersweet sting to it all. At the same time, though, my heart swells with a certain happiness knowing that somewhere out there, someone’s husband, someone’s father, or someone’s mother might receive this treatment and finally find a cure. Regardless of our own outcome, this should have been on the approved list from the very beginning, because even when things feel dark for us, there is still a glimmer of hope left for everyone else fighting these battles.

Susan Hayes25 said:But here’s the real kicker: how am I supposed to trust someone who clearly has no clue what they're doing? They don't seem to know the dosages, the timing, when to start, or how long the treatment should last—they just act like none of it matters. It feels like they're making every decision on the fly, and I'm left wondering how I can possibly trust them or what my next move should be. And if I try to get a second opinion from another oncologist, it feels like the whole medical establishment will just turn on me... I honestly don't know what to do.

Total lack of competence and professionalism. Switch doctors immediately.
It’s obviously a brain tumor we're talking about.
All I can say is that right now, I am incredibly grateful for Milinović and for an American healthcare system where Vincristine and CCNU therapy are available as second-line treatments after Temozolomide is used first.
Dear Susan, unfortunately, the mess you've run into is exactly why we need organized civil society groups. That’s why I decided to start this association by posting on this very thread, building it alongside other forum members. Honestly, it was the best and craziest thing I’ve ever done for myself—and I say that without any false modesty—but also for my country and the people living in it.
I really hope someone finds that same spark of defiance and strength in our neighboring nations.

Angela Wright, what you have accomplished and continue to do is truly awe-inspiring, so much so that I find it difficult to put into words! Even though we haven't met, I find myself thinking about you often because everything you’ve built and all the work you still do is just so incredibly special. You really are amazing. I catch myself wondering if I would ever possess the strength to launch an initiative like yours, especially since there is absolutely nothing like it here—not even any real support or specialized psychological counseling (when I tried looking into it, they just pointed me toward standard cognitive behavioral therapy), yet no one seems to address these specific issues at all. Honestly, I don't know if I could ever muster the courage for something so big. At night, I lie awake unable to sleep because I am just so chronically exhausted. My head aches from the sheer fatigue, so I end up taking a natural sleep aid, then some Advil for the pain, and finally a prescription like Lexapro just so I can drift off enough to wake up in the morning for our radiation treatments. I used to think of myself as a strong person, but lately, it feels like I don't even have enough energy left for myself (though I always have enough for my mom), whereas you somehow manage to constantly find the strength to offer a kind word, a recommendation, a bit of advice for all of us, or help with the association... I truly admire you, and I know I am certainly not alone in feeling so deeply grateful.

Susan Hayes25 said:Angela, what you’ve accomplished—and what you continue to do—is honestly breathtaking. I find it hard to put into words. Even though we haven't actually met, I think about you often because everything you've built and everything you still do is just so incredibly special. Seriously, hats off to you. I catch myself wondering if I’d ever have the strength to start an initiative like yours, especially since there’s nothing like it here—no support networks, no specialized counseling centers (when I tried looking into things, they just pointed me toward standard CBT), but nobody is actually tackling this specific issue head-on. Honestly? I don't think I'd have the stamina for it. At night, I can't even fall asleep because I'm so chronically exhausted. My head throbbed from pure fatigue, so I end up taking a natural sleep aid, then some Advil for the pain, and finally Lexapro just so I can pass out enough to wake up the next morning for our radiation appointments. I used to think I was a strong person, but lately, it feels like I don't even have enough energy left for myself (though I always have enough for my mom). But you? You consistently find the strength to offer kind words, recommendations, advice for all of us, and to keep this association going... I truly admire you, and I know I'm certainly not the only one who feels grateful.

Honey, I didn't start this whole movement by myself. I'm just one small cog in a much larger machine that has finally started moving and changing things.
No one expects a single person to carry the entire weight on their shoulders, but someone has to step up and lead the charge. Try finding some like-minded people to rally behind; that's always the best way to start.

It’s been exactly 40 days since my dad passed away... People love to claim that time heals all wounds, but honestly? I feel like I miss him more with every single passing day. It feels like this emptiness just keeps growing larger and heavier 🙂

It has been 45 days since my father passed away. I suppose the grief and this sense of emptiness just feel overwhelming, and they don't seem to be fading at all.
Honey, please be careful; someone might try to tell us we are in the wrong thread. That has happened to me once before. :-)
Sending you a kiss and please stay strong; you aren't alone in this, and I imagine what we are feeling is probably normal. I guess we just have to find enough strength to get through it. As for me, I still haven't figured out how to handle all of this, or how to truly live a life where he isn't here.