Posts by Benjamin Grant6

Ethan Cook27 said:Thank you... he actually handled the chemotherapy reasonably well, going wherever he could, fighting... but now that it’s passed, it is as if someone flipped a switch in his brain; communication is impossible, he just curses and says it would be better if he were dead... I wouldn't say anything if the chemo hadn't helped and things weren't looking better... the worst part is that Mom is alone with him... and she is already reaching the end of her strength.

Why does he feel it's best to end it all? It is simply because he is sick right now and cannot see a way out. My mother spent a long time in the hospital with a woman who was 94 years old. Yes, they were treating a 94-year-old for ovarian cancer, and yet she still possessed a will to live. You learn the most from roommates like that...🍿

In situations like this, I find myself leaning on cynicism. We moved past that stage of total helplessness, and I would simply turn it around—telling her, "Oh, poor thing, but we'll deal with it," or perhaps, "The numbers don't matter, tomorrow a car might just run you over anyway," or even, "It's beautiful and sunny outside, shall we go grab a coffee?"

Everything comes down to the individual. My father is also home alone with Mom, and I admire both of them deeply. I especially admire him for finding ways to coax her through it even today; when she can't eat, he tricks her into taking a spoonful, almost like you would with a small child. For him—and I suppose for all of us—this struggle is a game without boundaries...

Mom is always occupied with something. Every year brings a new hobby. We only discuss her illness when a specific problem arises; otherwise, we try not to remind her of everything that likely weighs on her. Every morning starts with the question, "So, what are you doing today?" and we have used that question since day one. I often ask her, "Do you feel like doing something?" and regardless of her answer, I usually don't fulfill it. When I sense she has somewhat given up on having a desire, I surprise her. These are the little things, those seemingly trivial reasons that make her feel just a bit better...

For the last three days, I have been in a state of constant anxiety. My boyfriend will remark, "What of it? It isn't the first time." And it is true; in eight and a half years, she has had five or six exceptionally difficult periods, and each time, she rose above them. The initial prognosis was that we could be happy if she survived six months, or if she made it through the first cycle... it was a mountain of uncertainty, but through shared joy and struggle, she is still here, and even the doctors are surprised...👍 I remember those early days so clearly, the crying, and seeing her start to give up, before that turning point occurred which continues to carry her forward...

I wrote all of this to try and shed a little light on your path, hoping you might find a common spark to move forward together! Just stay brave, for luck favors the brave...🙂

Ethan Cook27 said:Hello... my father has lung cancer, and after completing chemotherapy, the tumor has actually shrunk. But ever since he received the diagnosis, it’s as if his spirit has simply vanished; he refuses to eat, complains of constant headaches and stomach pains, and won't even take his medication. He was at the emergency room today for tests, but everything came back normal, so there wasn't any medical reason to admit him. Does anyone have any advice on what we might do? My mother is going to have a complete nervous breakdown if this continues. He is scheduled for radiation this Friday, and until now, staying in the hospital has never been an issue for him. Thank you!

I don't have any profound wisdom to offer, other than sharing what finally moved my own mother to action. Being an oncology patient fundamentally alters a person, and watching from the sidelines is an exhausting ordeal for us as well. My mother was hit with the realization that she was only halfway through her life, and she wanted to give up right at the starting line. It sounds cliché, but we just had to find a way to make her realize she needs to fight. If I were to write down everything we have endured or are currently enduring, people might call us harsh or perhaps even irresponsible, but the most vital thing is that we stay by her side, biting our tongues whenever we feel our own patience fraying...

So, please, think about your father and identify what truly motivates him. Psychology plays such a massive role in this battle. We are all different individuals, yet we are all similarly vulnerable. Do you think my mother would have pushed through all eighty rounds of chemo? No, but we managed to establish a ritual...

Michelle Cook83 said:I also completely agree that there should be no substitute for chemotherapy here. We need to insist that the institution acquires it as soon as possible, especially when we are talking about a drug used as the sole component in chemo...

While I am not intimately acquainted with the specific reasons behind the shortage, I have been informed that the hospital staff is doing everything within their power. We all understand that this fight requires finding new strength day after day, so giving up simply isn't an option...

From what I've managed to find, only one person has actually filed a formal inquiry regarding the medication so far. I have only just had the chance to read through the side effects and the application protocols...

People might say I’m not thinking straight, but our experience over the last eight and a half years has taught us that none of us ever truly knows the full story; we only know our own small piece of it. If I actually knew everything that was happening, I would likely just be an even greater panicker and more terrified than I already am... I will certainly keep everyone posted on how things develop, in the hope that it might help someone else...

And one more question: low hemoglobin—what can be used to raise it? We have already tried every single suggestion offered on this thread, so I was wondering if anyone has any additional advice regarding hemoglobin levels...

Angela Wright said:Whatever you do, don't settle for some "quick substitution," particularly when there is already a definitive answer available,
simply because they claim they can't source the specific medication for some reason! It isn't that they can't; it's that they simply won't. They are legally bound to ensure she receives her treatment if she is currently on it and the hospital board has already approved it. They should just perform an emergency import—they are required to!
Stand your ground and remind them that they are obligated by both law and regulation!

My thanks to Angela Wright for the advice. My father discovered that there is a permanent suspension on the importation of Vinorelbine, so we are currently awaiting a response from Pliva, who acts as the distributor. Regarding my mother, the situation is somewhat more convoluted because she is considered an "outside" patient, given that her struggle began at Avian, which means the oncologist cannot simply assume whether the drug is in stock or not. You have to understand that, much like anyone else, I am starting to panic, and I would very much like to have an answer this instant...

We will certainly be asserting all of our rights, just as we have done up until now. Given the nature of the recurrence and the complications that have arisen, chemotherapy will undoubtedly be administered in the near future. It was quite a shock to find the medication unavailable, and fortunately, this is the first—and hopefully the only—time we will ever face such a predicament...

Michelle Cook83 said:Has Mom been prescribed Vinorelbine as a standalone treatment, or is it part of a broader chemotherapy cocktail?

As of right now, it’s being used as her sole medication. Given how complex and exhausting her battle has become, it feels as though she has hit a wall, and the oncologist seems hesitant to suggest any other alternatives... She did respond to Taxol and Carboplatin, and she was previously on Gemzar, but that actually made things worse, which is why the recommendation shifted toward Vinorelbine. She completed one round of therapy, and according to my memory, she was scheduled for a second dose after seven days and a third after fourteen, followed by a planned break. However, thanks to the quirks of our healthcare system, she finished just one session and has now been left without treatment for fourteen days... 😲 essentially facing an unplanned hiatus.

I am holding onto the hope that the oncologist decides on a "swift substitution" tomorrow. What remains baffling is that while the drug itself isn't prohibitively expensive—it's manufactured in France and distributed by Pliva—the hospital in Pula simply doesn't have it in stock. We are prepared to purchase it privately, but that isn't a viable solution since the hospital won't administer a medication that hasn't been supplied through their internal channels.

I was mostly curious if anyone else here has experience with this specific treatment, either past or present...

It has been quite some time since I last visited this Forum, but eight and a half years ago, this community provided me with a much-needed sanctuary and the fortitude required to face my mother's illness. I have such profound respect for Angela Wright for remaining here, still ever-ready to offer support and dispel the dark, overwhelming anxieties felt by all of us who wander into this space searching for any way to aid our loved ones...

Eight and a half years ago, my mother was diagnosed with stage IIIc ovarian cancer. Facing that diagnosis was incredibly difficult, as was the struggle to find effective ways to help her through it. To be brief, I can no longer recall the specific usernames of everyone who offered us hope during those harrowing times. What I can observe is that, unfortunately, most of those fighters lost their battles, which makes me acutely aware of how grateful I am that Mom has endured everything she has: two major surgeries, approximately 80 rounds of chemotherapy to date, anaphylactic shock, kidney atrophy, and more... Today, she is living with a recurrence in a lymph node that is either inoperable or simply too risky to touch. I don't know every single detail regarding her treatment—not because I lack the desire to know, but because she insists on "sparing" me from the specifics. What I am currently aware of is that she has been prescribed Vinorelbine; while it isn't prohibitively expensive, the hospital claims they cannot source it at the moment due to supply issues. Does anyone here happen to have experience with this particular medication? Thank you.🙂

gentlemoose62 said:Hey, Nancy Hernandez43! Honestly, I’m so sorry to hear about the recurrence, but you know as well as I do that this doesn't mean remission isn't possible again. In fact, if she's already on her sixth round of chemo, it suggests she's responding well and might actually be heading toward remission right now. How did her markers look when the relapse occurred?
Just remember me—I dealt with two recurrences in my lymph nodes. I think of you all often; we are in this together... If there is any way I can help, or if she ever feels like talking... I am here, we just need to coordinate, okay? If she wants, I can leave my number in a private message.
In any case, I’m keeping my fingers crossed😉 that she powers through this sixth round and that the damn thing finally leaves her alone for good.

Thank you from the bottom of my heart, and truly—there is no need for pity. My mother isn't exactly the type of person who opens up to everyone, and as far as the illness goes, we collectively decided that it isn't something we discuss. Mentally, like anyone else, she has her ups and downs, but she remains incredibly stubborn in her fight. As for how she handles the treatment, it's debatable. If only she were honest herself, we would know much more (don't take this the wrong way, but the doctors only speak directly with her and she doesn't really pass the details along; my father doesn't participate in the consultations because she never asks him to, and the doctors know he doesn't speak Italian, so they try to spare him)... From what I can see so far, the markers aren't dropping, though her blood work is fine; it's only due to her own obstinacy that her cholesterol and triglycerides have spiked.

Since her battle has been going on for such a long time, and like everything else, there is no clear end in sight, it isn't easy to start this same repertoire of conversations every single day. Right now, our focus is split with another patient—a very young woman who has been fighting for her life for two months now over things that seem almost trivial...

So, my mother is in the best hands—the doctors at Avian are still professionals and are monitoring everything, so we aren't panicking. At least, I'm not panicking, because my life has turned into a constant cycle of work, home, work, and I barely have the headspace to even contemplate what comes next. Ultimately, you know yourself that every day is a blessing, and happiness lies in knowing you gave everything you could and received the best possible outcome. It would be a tragedy if we had simply left things to chance instead of fighting the right way. The hardest part is that if we are to worry about anything beyond our own struggles, it is either my mother or this young woman currently under our care. My fear is that we will all slowly lose our own strength because, in these battles, we tend to forget ourselves, and that isn't healthy either...

Regardless, thank you for every word and every bit of advice. All I know is that every one of us should strive to be a fighter, just like you...

gentlemoose62 said:👋 hey, you've been gone for a while, and I was actually thinking about you and your mom just the other day. How is she doing? Is she still going to Aviano? And that issue—if I recall correctly, the swollen lymph nodes—did that end up being a recurrence, or is everything still holding steady?
It breaks my heart to hear that someone else in your family is dealing with this, but I truly hope there are still ways to help...
A specialist should recommend Ensure (or Prosure if they are diabetic), and then your primary care physician can write the prescription; please don't pay out of pocket unless it's absolutely necessary...
It’s meant to be a complete meal replacement and can be taken two or three times a day, though a specialist would be the one to prescribe that specific regimen. Personally, I used to find those nice fruit purees for kids quite palatable...😛
The most important thing is that it tastes good and is easy on the stomach.
Hang in there, and please try to check in on Zanovidan once you've settled in...😉

Thank you for responding... yes, Ensure. We will definitely go through the prescription route, as buying it outright is such an expensive undertaking. Since we are already managing tube feeding for one person, we remembered that Mom used to rely on Ensure whenever she felt weak...

And thank you for asking. Regarding Mom, it turns out it was a third recurrence in the lymph nodes, which is inoperable, and she’ll be finishing her sixth round of chemotherapy in this new cycle in about three weeks. They have her on a new protocol that she seems to be tolerating okay, but she isn't much of a talker and rarely complains, so honestly, aside from what I see with my own eyes, I really don't know how she's truly holding up...

I rarely get the chance to get online since I can't do it at work, and I feel so disconnected from everything lately that I worry I might not be able to help others as much as I'd like, which is a shame... If I get the opportunity and have more information, I will certainly reach out...

Stay strong, fighter...

I haven't been around here for very long, but things aren't looking much better back home... unfortunately... the number of people in our family dealing with illness just keeps climbing...

yet every single battle, every new hardship, every ounce of effort and willpower only serves to make us stronger...

Right now, we are looking for a supplement to help bolster the body's defenses. We used to rely on Ensure... could someone briefly outline the process for getting it, where it might be more affordable, and any other essential details that doctors typically fail to mention?

Thanks in advance, and hang in there, fighters!

feralridge3 said:Well, my friends, I have to admit... I was quite skeptical at first, but here we are... 😉
If you don't recall, I underwent a brain MRI back in May, and the results suggested that a recurrence might be on the horizon. Consequently, chemotherapy was prescribed... However, I went ahead and paid for a follow-up scan this past Friday, only to find that my metabolic levels have shifted, and now the report states quite clearly, in black and white, that there is no sign of any recurrence in sight...
Honestly, there aren't enough words in the English language to truly capture the sheer, overwhelming relief I felt when they finally told me the malignant cells had retreated... 🙂🙂

It always brings me such immense pleasure to hear news of this nature... It truly feels like a second birthday for you, now that everything is finally back under control after all you've been through...

Hang in there, enjoy the moment, and please... don't forget to conserve your strength...

ironsailor22 said:Rose44 the whole situation regarding the patches remains quite baffling to me as well, given that I was also required to return mine to the clinic...
When you pick up a prescription for these patches, they issue two copies—one goes to the pharmacist and the other to the police, where they record your driver's license number so that whoever collected them is held strictly accountable for their usage or any potential misuse. It truly makes one wonder what the clinic actually does with returned patches, and precisely who they are being handed over to...

It stands to reason that because their effects could be easily abused, there is a mandate to return them; it is much like how if we had vials of morphine sitting around at home, we would surely have to return those too...
And one can only hope that the patches are being redistributed among hospitals, at least...

feralridge3 said:Does anyone need them?
I have three patches, "size" 50 (the actual size is 21 square cm).
My grandmother used them during her final few days, and these three were left behind.
Sadly, she passed away last night from some rare bile duct carcinoma that had spread to the liver and beyond... 😢

My deepest condolences...

How are you holding up? Please try not to let the discouragement take hold... the hardest part is accepting the loss right now, so stay strong...

hollowmarlin66 said:My mother beat breast cancer quite some time ago, yet my brother recently passed away from stomach cancer. Having navigated both, I find it quite clear why doctors, when facing severe cases, leave little room for optimism. They approach things objectively, through a medical and empirical lens. They are rarely wrong, and truly, only rare exceptions emerge from terminal stages. Meanwhile, we always cling to hope. It is true that every body and immune system is unique. Each person must carve out their own space for optimism, while doctors simply present the reality of the situation. For instance... when my brother was diagnosed, they ran him through the wringer in Seattle and advised us to do nothing because he had less than a year left. We didn't accept that; we didn't even tell him the prognosis, though he knew the diagnosis. He was naturally cheerful and optimistic. He decided to take the fight to the illness, so he went to Chicago where they took him in, operated, and set him on a treatment plan, though they once again warned us of the poor outlook. Before the surgery, he underwent chemo to make him operable; he remained upbeat, convinced he would pull through... however, after a few months, he was gone. Even he felt the decline toward the end. On the other hand, my mother... who is typically more pessimistic, a realistic woman, sometimes prone to depression. When they found her cancer years ago, the doctor said she would pull through, and we actually feared the opposite given her psychological state. But she made it... It isn't all just in one's head.
This post isn't intended to discourage people from having a chance despite grim prognoses, but rather to highlight that doctors are very skilled at assessing reality—sometimes cruelly, but truthfully. And I should add... I am not taking the side of the medical establishment; I have had my share of bad experiences, including instances of unethical behavior during the treatment of both my family members...

I am truly sorry for the loss of your brother. Whenever I think of my own... it is always difficult to hear that someone else is enduring the same thing, let alone something even more severe.

Unfortunately, there are no rules or sides here; there are only lives and the struggles within them. Every one of us encounters both good and bad experiences, fueled by the same singular wish: that everything turns out as well as possible.

In our case, I am glad the doctors were mistaken and that six months was transformed into four years. Perhaps one could call that luck... but life is not something one gambles with... it simply seems that the initial outcry and the desperate wish paid off, and we push forward, guided by the idea that "there is no tomorrow, only today."

In your situation, you know that the fight was fought and concluded without additional fears, agony, or unbearable pain, and that you gave everything you possibly could.

And I agree, it isn't all in the mind, which is why... please take care of your mother! Sending a big hug.

Robert Grant84 said:My mother's oncologist finally returned from medical leave, reviewed the results, and informed us that Mom will undergo radiation and likely oral chemotherapy, though she offered absolutely no optimism... I can hardly fathom what my father must have been feeling when she delivered that news 🙂

It has always eluded me why physicians, despite knowing that mental fortitude is such a vital component of recovery, feel the need to strip away any room for optimism. While one must remain realistic, there is no reason to approach treatment with the assumption that nothing positive can happen, given that no one truly knows how a disease will progress... Therefore, please, do not succumb to despair... allow yourself and your family the strength to fight through this entire therapy, believing you will emerge victorious on the other side! Hang in there...

ironsailor22 said:Lisa White54 The grim reality is that within our healthcare system, we are essentially left to fend for ourselves, as if no one truly cares... I once harbored the hope that patient advocacy groups, which are growing in number every day, might actually effect some meaningful change through collective action, but that hasn't materialized, and things only seem to deteriorate further.
For certain examinations or surgeries, one is forced to wait anywhere from six months to a full year, while those facing terminal illnesses seem to be met with absolute indifference. These patients aren't even admitted to hospitals despite their constant need for medical intervention—ranging from basic IV fluids to essential pain management injections. Consequently, people end up dying at home in agony, as if we were still living in the Middle Ages... We claim to want to be part of the standard set by Europe, yet we remain one of the few countries without a hospice integrated into the national healthcare system. Our outpatient pain clinics are utterly inadequate for managing cancer-related pain, which necessitates continuous hospital-based care and monitoring.
To give you an idea of the negligence, just a week before my mother passed, she was unable to consume any food or water, yet the visiting nurse insisted an IV wasn't necessary, claiming it would be too complicated because someone would have to stay by her side for hours, and they simply had too many patients to manage such a request. As for the pain that could no longer be managed with a Durogesic patch, she required injections every four hours, which was also deemed impossible since no one could visit six times a day. When I began looking for actual help, I discovered that the first private hospice has opened at Brezovica Villa, but the daily cost is approximately $100, which translates to $3000 per month... and I find myself wondering who among us could possibly afford such a thing.

Absolutely horrific...

Lisa White54 said:Do not sit around waiting for an oncologist. While you wait for her, have your primary care physician refer you to a specialist, perhaps an internist... anyone, really. Don't delay. If necessary, raise your voice, make threats, do whatever it takes. They are obligated to assist you. If you ask your GP to prescribe Durogesic and they refuse... then demand a referral to someone who actually can, and insist it be done immediately. Threaten to file a formal complaint if you must. I have navigated just about everything over these last six years. My first instinct would be to be polite, but that rarely yields results, so after that, I find myself resorting to threats, shouting, and arguing... one of those tactics eventually ignites a response. You must fight; you must demand help for your mother, because it is their duty. Truly, no one should be forced to endure pain. No one. And they shouldn't. Remind them that they too could wake up tomorrow facing a cancer diagnosis—that sort of reality check usually shakes them loose. Ask them if they could personally withstand such agony... Go ahead, shout, threaten, whatever it takes. They simply must help.
It is quite tragic that we are forced into such aggression, but if that is the only way to be heard, do not feel guilty. There is an organization called New Day... they maintain a website and a forum where cancer patients and their families gather. If you aren't already a member, visit their site; you will find plenty of practical advice there. An excellent oncologist even works with the association. If you need guidance, support, or anything at all, she will be there for you. She was a great help to me.
And... there is no giving up; you must persevere. I know how exhausting this is. Just remain persistent and brave.

Regrettably... it seems a certain level of aggression is required just to be acknowledged... that is simply the nature of our healthcare system, though believe me, it isn't much different in other parts of the country either.

Regarding pain management... I will offer only one observation, which is merely an example and not necessarily a universal rule. My mother underwent two major surgeries. After the first one, her body was essentially in shock. The pain was likely excruciating, but the doctor provided specific instructions... every time she complained of discomfort, give her a little scale, and have her rate the pain from 1 to 10. If it exceeds a 5, react and administer the medication. She never actually crossed that threshold of 5, even though it was obvious the pain was unbearable. I suspect managing that kept her on the path to recovery.

I am not suggesting that pain should be endured, but nor should the body be allowed to develop a tolerance... due to the instability of some patients, they may end up requesting increasingly higher doses.

And yes... stay persistent!!!! and demand everything that is rightfully yours!

Lisa White54 said:Warmest regards, Nancy Hernandez43.
It is truly heartening to see a familiar face resurface here... I consider myself a veteran of this forum as well. You mentioned that your mother’s condition remains stable, which is certainly encouraging news.
We all understand that there are no universal rules; every individual is unique, and no two cases of cancer are ever identical, yet we all share that singular, desperate desire to live and to keep our loved ones by our side for as long as possible...
Stay strong. Sending you a massive hug.

The most difficult part is facing the lack of concrete solutions... everything ultimately rests upon hope, willpower, and our own inner strength. Sending big hugs to you all as well.

My sincere sympathies go out to everyone who has recently lost their battles alongside those closest to them... I know how incredibly heavy this weight feels, and I realize that such wounds don't simply heal overnight, but perhaps there is a way to view this loss as a reason to stay resilient, honoring the memories and the small joys you once shared with your fighters.

My grandmother passed away last week after her struggle with Alzheimer's... Throughout the entire course of the disease, I felt as though I was witnessing nothing but pure agony, watching her suffer while she drifted further and further away from us mentally. Now that the silence has set in, the void feels quite overwhelming, yet I find comfort in knowing it is better for her this way, and that we will surely meet again...

Lisa White54 said:My mother and father reached an agreement that the battle is over, deciding against further chemotherapy or radiation since there is no realistic chance of a cure—perhaps she might hold on for a few weeks or even a month, though even that remains uncertain... 🙂
There was absolutely no advice offered regarding some desperate attempt that might somehow trigger a miracle...

It is a devastating decision to make. The reality is that with a disease like this, one can never truly predict its trajectory or when it might finally stall... My husband was given a prognosis of two or three months (lung cancer, which I have written about before), yet he has lived for more than six years. He underwent chemo and radiation during that first year back in 2005, which exhausted everything modern medicine had to offer. Everything else focused on bolstering his immune system, which must be robust enough to fight the illness itself... We managed to succeed.
I simply don't know; I would never dare to choose the path your parents have taken, whether for myself or for a loved one. Hope is always present, and there is always the struggle for a new tomorrow, for one more day... and so, we move through it, day by day.

I am glad to hear, Lisa, that you are still finding success in this fight... may it continue to stay that way.

I suppose I am a bit of a free spirit here, but I am quite scattered in my actual life as well, being pulled in a hundred different directions at once, so I am not even sure how to begin describing what my mother endured and continues to endure. Currently, we are in a state of status quo. Four years ago, it was uncertain if she would even survive six months. Since then, we have navigated two incredibly grueling surgeries and twelve cycles of chemo; over the last year, enlarged lymph nodes have been detected, though they eventually shrink and her markers remain stable. Her next check-up is in a few months...

And so, we live one day at a time... it becomes increasingly difficult, both financially and psychologically, but we will not surrender after having pushed this far.

Every patient is a unique case, and miracles are not a guarantee... yet, perhaps miracles occur when we all remain steadfast together. Therefore, we shall all continue to fight...

Robert Grant84 said:Does anyone have any advice? 🤷
What should be done?

My mother and father have come to an agreement that the fight is over, and they won't be pursuing chemotherapy or radiation, given there's no realistic chance of recovery—though perhaps they might hold on for a few weeks or a month, if we're being optimistic... 🙂
There hasn't been any advice offered regarding some sort of attempt that might actually work a miracle.

I find myself deeply saddened by this decision... but why simply surrender? Life is a struggle... one does not merely accept defeat; one seeks out new battles. There is no magic piece of advice that can offer a cure, yet I believe it is worth persisting with treatments, because sometimes we aren't even aware of what the human body is capable of achieving on its own...