Support resources for families dealing with cancer and other serious illnesses

... My dad was a true hero who fought until his very last breath—and he was right there by my side and my mom's through all of it. He finally just drifted off, totally exhausted and worn out, leaving that battered body behind. In a way—he's finally at peace...

Dominic79, I am so incredibly sorry for your loss!!!

Just my two cents on those PET/CT scans—honestly, I’ve been through a million doubts myself regarding test results. Last year, I had mine done in Vienna and the results were absolutely devastating. But, after a biopsy procedure, everything came back clean: NO TUMOR INFILTRATION FOUND... But now, what's got me spiraling again is that they're pointing to a recurrence in that same area (and to make matters worse, I can't even get into MIT right now because of how bad things are). So, in the next few days, I'm heading in for another ultrasound-guided biopsy to get a fresh cytology analysis on that "suspicious" spot.
My fellow warriors, all I can tell you is to grit your teeth and don't let this "filth" take up any more space in your head if it's hitting you hard right now. I'm STERNLY pulling for all of you. Your Dina

slyseal28!!!
I'm honestly praying to God for you and the Pigeon...!!!! Please, just let us know how things are going...

Dammit!!!
Look, please—just grit your teeth and push through. If you've been this brave and successful up until now, I am POSITIVE you can dig even deeper and find more strength...

Grace Fowler said:Fight on, ladies!!!
I am praying to God for both you and the Pigeon...!!!! Please, let us know how things are going...

Damn it all!!!
Please, just grit your teeth. If you’ve managed to be this brave and successful up until now, I am absolutely CERTAIN you can dig even deeper and push harder.

Thanks, Grace...

I find myself thinking about all of you here... I don't always post or reply, mostly because there are times when I simply don't know what to say. These fears and dilemmas are universal to all of us... Grace, your strength and your faith bolster me every single time I read your words. We truly cannot afford to give up. Not ever. We have to try to squeeze every ounce of strength out of ourselves—from our toes to our heads—and just keep pushing.

That is where we are... the pain is terrifying... we are currently waiting on the results from the bone scan. She is scheduled for her seventh round of chemo this week. It was supposed to happen on Wednesday, but we're facing a shortage of Gemzar (even though the insurance approval came through), so it will likely be pushed to Friday...

Because of the pain, the Pigeon is having a hard time sleeping and sitting, so he is utterly exhausted, and there are moments when he starts to lose heart. Of course, I won't let him buckle under the pressure... but god, it is incredibly difficult. That realization—that you can't actually fix it for them—it's soul-crushing.

We are heading to see our specialist today to see if we can get some stronger meds to manage the pain. I'll check back in later.

My thoughts are with everyone. No surrendering.

Just a reminder: if anyone is having issues with their doctor, reach out to the association; we will organize a second opinion. Damn it, that applies to you especially.

I honestly don't get any of this anymore. I talked to the doctor, and he’s acting like everything is just fine (???)—but then last Wednesday, he tells me my husband has a new tumor (???). Now we’re just sitting around waiting on the results from a bronchoscopy... I'm so over it. It's not like I'm uneducated or stupid; I can handle things when they hit the fan, I really can. But right now? I have zero clue what's actually happening. I don't even know how to act or what to think. This isn't some game. If patients are nothing more than statistics to these people, they've got it wrong. Every single one of them is a human being with their own fears, a person with a family going through absolute hell. These are real lives!
I’m not—and even if I were, who cares!—some unstable, weak person, and I have every right to the truth, no matter how ugly it is. I can't keep playing games in this fog. What am I supposed to do? Just spiral? Doubt every single thing they say?
The worst part is when they just leave you hanging in the dark!

Hi everyone!

I’m checking in because I just wanted to share some incredible news with you all—hopefully, this brings a little bit of hope to anyone currently fighting this, or to those of you watching a loved one go through it. I first started lurking on this forum around April, right when we found out my dad had a throat tumor. Honestly, back then, I didn't even have the strength to type a single word about it. My whole world just collapsed. I was searching here desperately for any kind of supplement or alternative treatment that might work. It all started with this tiny little lump on the right side of his face over a year ago. But he absolutely refused to see a doctor. He’s one of those classic, stubborn types who never gets sick and never complains about anything—not even a headache. He wouldn't admit to a thing; there was no way we could convince him to go. We were all losing our minds trying to get him to take it seriously. That is, until the lump grew so much 😉—I can't even tell you the size now—that it actually started deforming his face. He couldn't eat or breathe properly anymore. He dropped from about 185 pounds down to barely 108. That was finally enough to break his stubbornness, and he went to the doctor. The test results were devastating. Chemotherapy wasn't even an option because the tumor had wrapped itself around a major artery, and they were terrified that treating it would cause a rupture. It felt like they were just going through the motions at that point; they scheduled him for radiation, but not for two months! We were panicking. It felt like the medical team had already given up on him; they weren't giving him even the slightest chance at recovery. After a lot of pleading and tears from me, my sister, and my mom at the hospital, they finally agreed to move his radiation up by a month just for us. And I will never, ever forget what the doctor said to my mom. He looked her in the eye and said, "Okay, ma'am, I'll give him the strongest therapy we have, but even that isn't going to help him." It was absolutely terrifying. Anyway, I won't ramble too long, but he finished his radiation sessions between June 16th and August 8th. Then, this past Saturday, September 12th, the final results came back. (And oh man, for the last two weeks, they kept sending him over to the Mayo Clinic because they couldn't make sense of the scans and claimed their equipment there was better.) Well, there's nothing left. Nothing! The tumor is gone. The metastases have retreated! My dad... he doesn't have a tumor anymore!!! The doctor was completely stunned. He kept re-examining him, staring at the scans, just unable to believe his own eyes that the tumor could vanish in such a short window of time. At the end of the appointment, he actually squeezed my dad's hand, and my dad told me he saw tears in the doctor's eyes. And honestly, how could he not? Everyone had written him off. I suppose this falls into one of those "miracle" categories. I just wanted to tell you all: please, don't lose hope. You really shouldn't ever stop believing in the possibility of healing. I have so much more I want to share, but for now, 🙂 just hang in there. Stay strong, stay positive (which, let's be honest, was the hardest part for us), and keep believing that healing is possible. 🙂

frozencobra25, I am truly sorry for your loss. My deepest condolences on the passing of your father.

wiredcrane32 said:Hi everyone!

I’m checking in because I want to share some good news and offer a bit of hope to anyone currently battling an illness or watching a loved one go through it. I first started lurking on this forum around April, right when we found out my dad had a throat tumor. Honestly, I didn't have the strength to write anything back then; it felt like my entire world was collapsing. I was scouring these boards looking for a specific supplement, some kind of alternative path to recovery. It all started with this tiny little lump on the right side of his face more than a year ago. He absolutely refused to see a doctor—he’s one of those classic, stubborn types who thinks he’s invincible. He never gets sick, never complains about pain; he’s basically the definition of a "tough guy." We were all losing our minds trying to convince him to get checked out, but he wouldn't budge. That is, until the lump grew large enough 😉 to actually deform his face. At that point, he couldn't eat or breathe properly, and he plummeted from 185 lbs down to just 108 lbs. Finally, seeing the reality of it, he went to the doctor. The test results were nothing short of catastrophic. Chemotherapy wasn't even on the table because the tumor had wrapped itself around a major artery, and the doctors were terrified that treatment might cause it to rupture. Eventually, they just sort of gave up on him—they scheduled him for radiation, but not for two months! We were frantic. It was painfully obvious they had written him off; they weren't giving him even the slightest chance at a recovery. After a lot of pleading and tears from me, my sister, and my mom at the Mayo Clinic, they finally agreed to move his radiation up by a month. And I will never, ever forget what the doctor said to my mother. He looked her in the eye and said, "Look, I'll give him the most aggressive therapy possible, but even that isn't going to help him." It was absolutely chilling. To make a long story short, he underwent radiation from June 16th to August 8th. This past Tuesday, September 12th, the final results came back. (And yes, for the last two weeks, they kept sending him over to the specialized imaging center because they couldn't quite decipher the scans—apparently, they have much better equipment there.) Well, there is nothing left. The tumor is gone. The metastases have retreated. My dad... he doesn't have a tumor anymore! The doctor was visibly shaken; he kept re-examining him and staring at the scans, unable to believe his own eyes that the tumor could vanish in such a short window. In the end, the doctor reached out and shook my dad's hand, and I swear I saw tears in the man's eyes. And honestly, can you blame him? They had already written him off for dead. So, I suppose this falls into one of those "miracle" categories. I just wanted to tell you all: don't lose hope. You truly cannot afford to stop believing in a recovery. I have much more to say later, but for now, 🙂 just hang in there. Stay strong, stay positive (which, let's be honest, is the hardest part), and keep believing that healing is possible. 🙂

Reading a post like this is so wonderful; it provides such a sense of optimism and injects real hope into the community.
I am so incredibly happy for your dad.

Thanks, cosmicviper76!
I’ve been sitting here scrolling through some of the older posts just to get a better feel for everyone in this community, and honestly, I can’t stop crying. It’s a strange feeling—I’m happy to be here, but I’m weeping because you all have reminded me so much of everything we went through back in the day. I remember being at work, trying to talk to clients while tears were streaming down my face. Someone would tell a joke and I’d laugh, but then immediately go back to sobbing... just full-on wailing. I probably looked absolutely unhinged, didn't I? But you guys know exactly what I mean. Anyway, that part is behind us now. First off, my heart goes out to everyone who has lost a loved one. And to those of you currently in the fight: please, push yourselves and your families to keep fighting even harder. Because it really is possible. Anything is possible. I have to admit, there was one brief moment where I actually resigned myself to the idea that Dad was leaving us soon. It sounds terrible to say, but I even found myself talking to Mom about funeral arrangements. It felt like such a dark cloud was over us; right when he was waiting for radiation, we lost three people very close to us within a single month—my grandmother, an ex-partner, and my cousin who was only 25. It felt like Dad was slipping away just so we could follow him, and I think he realized that too, which is why he started fighting back. This past Saturday, we talked for hours. He was so happy he couldn't stop talking, even though his throat is so sore from the cannula that it's a struggle. He finally admitted that he was fighting solely for us. There was one point, when things were at their absolute worst and he felt like he was losing the battle, that he told himself, "Don't be a jerk, fight!" And he did. He pulled through, and he deserves a monument for it. To be honest, I don't know if I could have endured all of that. I think I might have given up, but you never truly know until you're there. God, I'm still crying just typing this. If I could, I would just give you all a massive hug right now. It isn't true that we've run out of options or that everything is just "fate." Please, keep fighting!

wiredcrane32 said:Hi everyone!

I wanted to reach out and share some good news to hopefully offer a little hope to anyone currently battling this or supporting a loved one through it. I started checking this forum around April when we first found out my dad had a throat tumor. Honestly, I didn't have the strength to write anything back then; it felt like my whole world was collapsing. I was searching here for any kind of supplement or alternative treatment that might help. It all started with this tiny lump on the right side of his face over a year ago. He absolutely refused to see a doctor—he’s just one of those people who never gets sick and never complains about pain. A total stubborn type. We were all losing our minds trying to get him to go, but he wouldn't budge. Eventually, it grew to the point where 😉 it actually deformed his face, making it hard for him to eat or breathe. He dropped from about 185 lbs down to 108 lbs, and that's when he finally realized he couldn't ignore it anymore and went to the doctor. The test results were devastating. Chemotherapy wasn't even an option because the tumor was too close to a major artery, and they were worried about it rupturing. It felt like they were just going through the motions at that point; they scheduled him for radiation, but not for two months. We were panicking. It really felt like the medical team had given up on him and wasn't giving him a fighting chance. After a lot of pleading and tears from me, my sister, and my mom at the Mayo Clinic, they finally agreed to start his radiation a month earlier. I’ll never forget what the doctor told my mom. He said, "Okay, ma'am, we'll give him the strongest therapy possible, but even that won't help." It was absolutely terrifying. Anyway, he finished his radiation between June 16th and August 8th. This past Tuesday, September 12th, we finally got the follow-up results. They had been sending him back and forth to the specialists at Johns Hopkins for the last couple of weeks because the initial scans were confusing, but the final word is in: there's nothing left. The tumor is gone, and the metastases have receded. My dad doesn't have a tumor anymore. The doctor was visibly shaken. He kept re-examining him and staring at the scans, clearly unable to believe his own eyes that the tumor could vanish so quickly. At the end, he actually squeezed my dad's hand, and I could see tears in the doctor's eyes. I mean, I can't blame him; everyone thought he was a lost cause. I suppose this falls into one of those "miracle" recovery stories. I just wanted to tell you all: please don't lose hope. You really can't afford to stop believing in healing. I have much more to say later, but for now, 🙂 hang in there, stay strong, try to keep smiling (which was definitely the hardest part for us), and keep believing that healing is possible.🙂

😘 That is truly amazing.

Thanks everyone, truly...

What can I even say? The funeral is over, and all that's left is this heavy emptiness. My mom always says that while he was alive, there was just pain; now, it’s just the pain and the void...
It felt just as exhausting and overwhelming less than a year ago when my best friend passed away at 29. No warning, no signs, he just left. I honestly thought I couldn't possibly feel this much weight again, or that I’d run out of tears.
I guess I was wrong.

I'll try to push down the memories of the hardest times with Dad and only hold onto the good ones. That way, I suppose he keeps living through stories and memories.

If I can, I'll try to help out here with whatever advice I've picked up over this past year. Though, I’d probably suggest everyone read every single post by Angela Wright first before they even think about asking questions.

Hang in there, everyone. Have hope, keep fighting, don't give up. Life is pretty shitty as it is; might as well try to make it slightly better...

Thanks, everyone.

wiredcrane32 said:Hey everyone!

Just checking in to share some good news and hopefully give a little hope to anyone fighting this or watching someone they love go through it. I started lurking on this forum around April when we first found out my dad had throat cancer. Honestly, back then, I couldn't even bring myself to type a word about it. My whole world just imploded. I was scouring these boards looking for any kind of supplement or alternative cure. It all started with this tiny little lump on the right side of his face over a year ago. He wouldn't see a doctor—he never goes to the doctor. He’s one of those guys who thinks he’s invincible, never gets sick, never complains about anything... a total typical stubborn American guy. We were all losing our minds trying to force him to get checked out. It kept growing until it reached 😉 a point where it actually deformed his face. He couldn't eat or breathe properly anymore, and he dropped from 185 lbs down to about 110. That’s when he finally gave in and went to the hospital. The tests were a nightmare. Chemo wasn't even an option because the tumor was too close to a major artery and they were terrified it would rupture. They basically just started circling the wagons and scheduled him for radiation two months out. We were freaking out. You could tell they had already written him off; they weren't giving him even a shred of a chance. After a lot of begging and crying at the Mayo Clinic, they finally agreed to move his radiation up by a month just for me, my sister, and my mom. And I will never, ever forget what the doctor told my mom. He looked her straight in the eye and said, "Look, I'll give him the strongest therapy we have, but even that won't help." Just chillingly blunt. Total horror movie vibes. Anyway, long story short, he did his radiation from June 16th to August 8th. This past Tuesday, the results finally came in—they'd been sending him to specialized clinics in Houston for the last couple of weeks because the local imaging was confusing and they wanted better equipment. And there was nothing. Nothing. The tumor is gone. The metastases? Receded. My old man doesn't have a tumor anymore!!! The doctor was totally floored. He kept staring at the scans, checking the patient, looking at the files... he literally couldn't believe his eyes that the tumor vanished that fast. At the end, he actually shook my dad's hand, and you could see the tears in the doc's eyes. Can you blame him? They'd already given up on the guy. So yeah, I guess this falls into one of those "miracle" categories. I just wanted to say: don't lose hope. Seriously, you can't stop believing that healing is possible. I have way more to say later, but for now, 🙂 hang in there. Stay strong, keep smiling (even though that was the hardest part), and stay certain that recovery is real.🙂

So happy for your dad, and I pray it stays that way.

Just wanted to give you all an update on what we've decided: here is our current strategy:

-We are waiting on the scintigraphy results because there is a chance the sarcoma has reached the bone. If it has—we’ll look into targeted radiation. If it hasn't, then the pain is definitely coming from the tumor pressing against the nerves.

-Surgery is being planned for 3 or 4 weeks from now at Mercury with Professor Kocman. He’s going to attempt to remove this abdominal sarcoma located just below the navel. He did mention there's a possibility this mass is tethered to the primary one near the heart. Hopefully, they can find a way to dissect them apart...

-We are heading out today to schedule the PET/CT scan; luckily, the Social Security Administration is covering that part of the cost.

-We still need to book an MRI for the chest and abdomen, but we're going to have to pay out of pocket for that. Some 🙂 pedantic... department head won't authorize both the PET/CT and the MRI at the same time.

-We’ve also agreed to seek a second opinion regarding new medication options—specifically through the Dan Farber Sarcoma Center. We need to send over all the medical records along with a tissue sample from the sarcoma, which requires us to make a trip out to Salad. Based on that sample, they might be able to identify specific receptors that could respond to the new targeted drugs currently in their phase 2 and 3 clinical trials.

Anyway, we have our work cut out for us. The main priority right now is just hanging in there and finding a way to manage the pain, which is absolutely exhausting him at the moment.

I just want to say—we aren't giving up. Even though the road is brutal, we have to keep pushing. As long as there is even a sliver of an option left, we have to take it.

gentlemoose62 said:The waiting game for any kind of results is absolutely agonizing. It would be wonderful if everything could just be settled in a single day, but... alas, that is simply not how life works...
That said, I am inclined to believe things are fine given that the Ca125 came back okay; it was only that slightly elevated CEA that caused you some trouble, wasn't it? Or was there something else entirely? And is this PET scan just part of her routine follow-up?

Well, things have certainly been worse before, and they passed; this too shall pass...
Keeping my fingers crossed for you!

CT scans, mammograms, abdominal ultrasounds, blood work, tumor markers... everything appears to be normal. However, the CEA still seems to be elevated. We went ahead with the PET/CT purely as a precaution, since it has been twelve months since Mom’s last round of chemo, and we want to ensure that if anything is found, we can react immediately. Because her treatment is split between the local hospital and Avian, they wouldn't authorize the PET/CT without clearance from Avian first. They were a bit skeptical due to the radiation exposure, but well—the scan was completed yesterday, and we should have the results in seven days...

As you so aptly put it—whatever will be, will be, and things could have been much worse than this. Fear is merely a sensation that eventually fades once one grows accustomed to the reality of it all... Thank you for your well wishes, and I truly hope that after such a good run over the last twelve months, we aren't about to start a new battle. If we are, at least we are more prepared now than ever before. It is quite difficult to watch someone suffer and wonder how they are truly coping, even when she constantly reassures us that "cancer is just something you live with once you have it." Sending kisses to everyone, and may we all find the strength needed for our respective battles...

Lisa White54 said:I am attempting to remain brave, yet I find myself at a loss for even basic thought... They were supposed to drain my husband's pleural effusion, but they haven't done it, nor do they seem inclined to... I simply cannot fathom why they are hesitating. It has just been sitting there for nearly a week now. He is undergoing a bronchoscopy today, so once that is finished, I intend to call his physician to demand an explanation for this stagnation. My fear is that they will offer no clarity at all, perhaps even discharging him straight home after the procedure without any further course of treatment... I am terrified they might let him go without making any actual attempt to help him.

I truly hope that things do not unfold in such a disappointing manner and that you are provided with a clear therapeutic plan in a timely fashion... I am intimately acquainted with that profound sense of helplessness, having endured it myself, but when I reflect upon you and all the fighters out there, there remains this tiny, stubborn flicker of faith deep within me that keeps whispering, "it has to be okay, it simply must be okay..." because I often wish everyone could be granted the same opportunity to look forward to the days ahead without being shadowed by fear or pain.

I shall be waiting for your next update, and I sincerely hope some progress is made... Please, do not let your strength fail you, and stay present for your children... my brother would surely tell me right now that "tears don't fix anything, they only wash things away," so please, do not allow yourselves to be broken or surrender to this grief. There is nothing more you can do beyond what you are already doing. You cannot retreat into your own private worlds and simply wither away in silence; instead, stay as you have always been... united.

Keeping my fingers crossed for you.

I just wanted to give you all an update on the current medication situation: insurance approvals are actually coming through within a week or two—both from the hospital and the Social Security Administration. However, there's a new catch: the hospital pharmacies are completely out of stock.

For instance, we were scheduled to come in today for premedication (prep for chemo) and receive the actual therapy tomorrow. Our regimen consists of two types of chemotherapy agents (Taxotere and Gemzar). I called up the oncology department on Monday, and they told me the pharmacy doesn't have any Gemzar in stock, though it’s supposedly arriving by Friday. So, the plan is to push the therapy to Friday. I'll be calling them again today to see if that arrangement still holds. But honestly, if that drug doesn't show up on Friday, we’re going to be right back here arguing about it!

I’ve been hearing from other people facing this exact same mess: they get their approvals, but those papers might as well be useless because the hospital pharmacy has nothing to dispense. Out of sheer fear, most of these people aren't willing to speak up publicly about it.

What I'm trying to say is this: the core issue hasn't been solved; they've just shifted the burden onto the hospitals.

Lisa White54 said:I am attempting to remain brave, though I find myself at a loss for what to even think anymore. They were supposed to tap my husband's pleural effusion, but they haven't done it, nor do they seem willing to... I simply cannot fathom why they are hesitating. It has just been sitting there for nearly a week now. He is undergoing a bronchoscopy today, so once that is finished, I intend to call his doctor to demand an explanation for this stagnation. My fear is that they won't provide any real answers at all, and might even discharge him after the procedure without offering any further treatment. I am terrified they will let him go without making any genuine effort to help him...

I truly hope it does not come to that and that you receive clarity regarding the next steps of his treatment quite soon. I recognize that sense of utter helplessness, as I have unfortunately had to endure it myself, but when I reflect on you and all the fighters out there, there remains this tiny, stubborn flicker of faith deep within me that keeps whispering, "it has to be okay, it has to be okay..." because I wish more than anything that everyone could be granted the same opportunity to look forward to the days ahead without being shadowed by fear and pain...

I will be waiting for your next update, and I sincerely hope things begin to move in the right direction. Do not let your strength fail you; stay present for the children... my brother would likely say that tears don't fix anything, they only wash things away, so please, do not allow yourselves to be broken or consumed by this grief. You cannot do anything more than what you are already doing. There is no use retreating into your own little worlds or languishing silently in your thoughts; instead, continue to be what you have always been: united...

Keeping my fingers crossed for you...

We all know those days... the kind where everything just falls apart, and you’re left clawing around in the dark looking for answers that just aren't there.
It looks like my husband is going to hold off on chemo until all his lab results are finalized. He realized the cancer is back, and honestly, it just crushed him. I did manage to get through to him a bit, though—had a long talk to try and lift his spirits and convince him that we still have to fight this.

Lisa White54 said:There are those days, which I think we all know too well, when everything collapses and you find yourself desperate for answers, only to realize there aren't any...
It appears my husband will be starting chemotherapy once all the test results are finalized. He realized the cancer had returned, and frankly, the weight of that realization has been crushing him. That said, I have managed to lift his spirits somewhat through our conversations, trying to convince him that the fight isn't over yet...

Unfortunately, when dealing with illness, you are perpetually left without answers... you crave certainty, yet you are trapped in a constant state of waiting.

By offering your love and steady encouragement, you are providing him with the strength he needs... the more fortified he feels, the better prepared he will be for the chemo. You both remain in my thoughts...

frozencobra25 said:At 6:10 this morning, my father lost the most grueling battle of his life.

Another wonderful soul, beloved by everyone, succumbed to a glioblastoma that unceremoniously forced its way into our lives on September 5, 2007, changing everything forever...

My father was a true hero who fought until his very last breath, and until that moment, he was surrounded by my mother and me. He finally fell asleep, exhausted and spent, leaving behind a body that had endured far too much. In a single word—he is at peace.

Everything still feels somewhat surreal; regardless of how well I anticipated the outcome or how much I prepared myself for this specific moment, it arrived far too soon...

I am profoundly grateful that my mother and I were able to share these past years with him, making the most beautiful memories possible, and he knew it... he was never alone, always held by those he needed most and loved most deeply.

Deepest thanks go to Angela Wright, a guide whose words resonated with someone who has truly walked in these same shoes...

Thank you.

Please accept my sincerest condolences. Even through your words, one can sense such immense pride and love for him... When you realize just how exceptional the person you've lost truly was, perhaps it makes the acceptance slightly less heavy. Stay strong...

Nancy Hernandez43 said:It’s frustrating how you always dodge the question when things get medical... I’m looking for answers here, but you’re just constantly playing the waiting game!

Look, just being there and showing her love—that’s what gives your wife strength. If she stays strong now, she'll be way better prepared once the chemo actually starts. You guys are in my thoughts.

Thanks, Nancy Hernandez43.