Posts by Benjamin Grant6

Grace Fowler said:Hello there, my fellow travelers...
I can't help but feel these heatwaves have been sent specifically to remind us just how insignificant we truly are when compared to the sheer will of nature. I am managing to push through somehow, though I did seek out some acupuncture to deal with this sciatica, which provided a modicum of relief (I am no longer questioning my profile status), yet the temperature remains utterly unyielding... tomorrow I head in for further testing since I am finishing my course of antibiotics, so we shall see what comes of it...

ISCADOR personally used them to treat bladder issues and achieved wonderful results; they were prescribed to me by Dr. John Doe, a homeopath, and I was injecting them into the bladder area daily for four weeks. I managed to pick them up at a pharmacy near Pike Place Market. Should any further information be required, I remain entirely at your disposal.

Hang in there, best regards, John Doe

The heat is quite unbearable... however, the most vital thing is to defy it in every possible way and simply refuse to give in. I have faith in you and your inner strength, so please, stay resilient... kiss

Grace Fowler said:Hello, my dear friends!!!
Well, I was quite literally crawling out of the hospital... About two and a half weeks ago, I came down with a massive fever, my CRP shot up to 308 (ref range 0-5), and my SE hit 125 (ref range 0-24), so to make a long story short, I ended up being rushed for emergency hospitalization with a diagnosis of clinical sepsis. As if things weren't difficult enough, a nasty bout of sciatica struck my right hip, so I was quite literally crawling to the bathroom... it was dreadful... But I am feeling better now, my lab results have improved, and while I am still on antibiotics, I am finally LIVING, oh yes... I missed my immunotherapy appointment in Germany, but once my condition stabilizes, I will head there...

MY HEARTFELT SYMPATHIES to Alenka's family and friends!

My dear ones, I am sending tons of positive energy to everyone to help you persevere...
Your Dina

Dear Dina,
you are so incredibly brave and positive, and no matter how dire the situation becomes—you simply know what needs to be done! I am hoping for a swift recovery so that you can get back to your therapies as soon as possible!

Stay just as you are and please keep us posted with news! Hang in there! kisses

shadowmason6 said:My heart goes out to Alenka's family and everyone who knew her personally.

The entire situation is infuriating, and frankly, I am livid at everyone involved—from the Secretary to the entire systemic failure...
Kudos to slyseal28, Angela Wright... and everyone else attempting to highlight these issues and keep the public informed. If I weren't active on this forum, I might actually be less aware of these deep-seated problems and state inefficiencies... I must admit that. People simply don't give enough thought to these matters until they find themselves facing a similar crisis. They need a wake-up call. A bit of a jolt, if you will!
As for Alenka, unfortunately, it is far too late 😢, but we must press on with this fight for the sake of others who will desperately need these medications in the future.

Well, Nancy Hernandez43, I suspect about 20% of the people I sent the petition link to actually went ahead and signed it... I am quite disillusioned myself.

I suppose it is easiest for people to simply say, "that won't happen to me" or "that can't possibly happen to me." I honestly cannot decide what weighs more heavily on my heart: the fact that those I once trusted failed to sign the petition, or the realization that these very same people don't even bother to ask, "how are you?" or "how is your mother doing?"

It is understandable that not everyone is required to grasp or empathize with my struggles or anyone else's, but still—where does all this callousness come from?!

If the time ever comes to respond to a public protest or a formal outcry, you can certainly count me in! I have no intention of finding myself alone again without solutions or medication, nor will I allow anyone close to me to suffer the same fate.

Let us remain brave and hold onto the hope that we will achieve far more than we currently are!

shadowmason6 said:Linda Campbell, oh, how I would be lost without you (and the rest of you, naturally!)...

I visited the oncologist this morning—she was perfectly lovely, a true five-star professional... except, of course, she couldn't tell me whether taking beta Glucan and native propolis alongside chemotherapy might trigger any adverse side effects, so she suggested my mother avoid them during this period. Can anyone share their own experiences regarding this? After all, how is one supposed to bolster the immune system if we have to stop these supplements now...

Not to mention, she seemed to know absolutely NOTHING about the Imele injections. I got the impression she views them as some unverified herbal concoction... Meanwhile, I am busy researching supply chains—looking at pharmacies near Dolac, or perhaps even sourcing from Germany...
I am relying on the lived experiences of those who have walked a similar path, though it would be quite something if an oncologist actually possessed knowledge about things that could support standard therapy. As it stands, every single step feels precarious, left entirely to our own amateur assessments...

Her diet has been completely overhauled since the diagnosis (not counting those hospital days when, following surgery, she was served heavy veal stew, massive steaks, mashed potatoes, and fresh salad—half of which she couldn't even touch)... and she’s drinking herbal teas as recommended by her nutritionist, plus some matcha for balance...

Mom starts her first cycle on Monday (out of six scheduled). Keep your fingers crossed for us 🙂
The oncologist also mentioned that the treatment is relatively mild and side effects (like hair loss or nausea) are rare, though oral inflammation is more common... We shall see...
Thank you!

Monday will be here before we know it, the cycle will begin, and I truly hope everything goes smoothly. Please don't let Mom dwell on the side effects—the less she worries, the easier the chemo will be to bear...

Regarding the Imele injections—it seems my own mother received them prior to starting chemo, upon her oncologist's recommendation...

Even though her immunity dropped suddenly, her doctor was quite skeptical about supplements, so she stopped the Imele as soon as the chemo began; aloe vera products weren't advised either to avoid potential side effects or contraindications. For the native propolis, he gave the green light, so whenever Mom felt the need, she would take a tablet with a meal, though she didn't overdo it (maximum three a day). Incidentally, my father bought some sort of powdered supplement for her while he was in Italy (or maybe Canada). I can't recall the name, only that it was packed with vitamins and minerals and was quite expensive, but in the end, the oncologist said it contained something that would only cause harm (though I honestly can't remember what that was). She is currently taking beta Glucan, per the doctor's advice...

I am sorry I don't have better information and that I am acting so uninformed, but my father refused to let me know what was happening with her at any point. This is simply what I managed to remember from the month I spent by her side...

Hang in there! Stay strong!

slyseal28 said:The very thing we all dreaded has finally come to pass. Our dear Alenka passed away last night at only 31 years old. The funeral is scheduled for tomorrow at 3:00 PM at the city cemetery in Slavonski Brod. Rest in peace, dear friend.

Could things have taken a different turn if Yondelis had arrived sooner? Could we all have done more?
I truly believe we could have...

It is deeply regrettable that things couldn't be different, that her fate wasn't kinder or easier... it is a tragedy that she left us so young. It is heartbreaking that there was no progress, and that it takes a catastrophe like this for people to realize that solutions actually exist—that medicine and salvation are within reach, yet circumstances conspire to prevent them from being used...

I cannot say for certain how much more could have been done beyond what you women fought for on her behalf. Looking at the petition, it seems many still don't grasp that every single voice carries weight...

It is such a shame that Alenka had to die, and that only now will the avalanche of questions, problems, and potential solutions begin to move...

This news has left me quite shaken and caught completely off guard...😢

copperfox7 said:Hi everyone. My heart goes out to slyseal28; it is truly devastating when someone passes away at such a young age. As for myself... am I lucky? I honestly don't know how much longer my companion will stay by my side. Three years ago, it was thyroid cancer—hospitals, recovery, and three agonizing months of wondering if it had spread... thank God, it hadn't. Now, here I am facing it all over again: tumors on both ovaries, hospital stays, and the removal of my ovaries and uterus just to be safe. And imagine, once again, luck was on my side; I caught it in time. It hasn't spread. I'm currently in recovery. I wouldn't call myself a coward, and I try to maintain a positive outlook, but logically, one cannot help but wonder what the third act will be, and whether I will be fast enough when that time comes...

The question of whether we could have done more really touched me. I suspect one can always do more, but would it have changed anything? This evil resides within us, and I fear it is far more powerful than we are...

Hello,
I am so sorry you are facing cancer once again and dealing with all this anxiety. Perhaps it is best not to dwell on what might come next while everything from the past went well! The priority right now is for you to recover fully, regain your strength, and ensure nothing shakes your courage! That is simply the nature of life. You must remain brave, because fortune tends to favor the bold!

We all find ourselves asking, "What could we have done to make things better?" but in reality, we should strive to do the same thing every single day: keep moving forward and keep believing! Don't let your emotions overwhelm you. Wishing you a smooth recovery! 👍

kisses

Kimberly Green23 said:This is my very first time ever posting on a forum... I have spent quite some time reading through this entire thread—though I am currently lagging behind on my work—and I found myself celebrating all your positive test results while simultaneously mourning for your lost loved ones. You have already provided so much comfort, yet I find myself in need of your collective wisdom. My stepfather has been diagnosed with gastric adenocarcinoma. Just two months ago, he was perfectly healthy, until nausea began to set in. He originally assumed it was simply the result of overindulging in dessert... but when even a strict diet failed to settle his stomach, he went for an evaluation. An ultrasound revealed a slight thickening of the stomach wall, which led to a diagnosis via gastroscopy and biopsy. His markers didn't show anything unusual, and the CT scan showed only changes in the stomach and something undefined near the adrenal gland. He underwent surgery three weeks ago, though it was ultimately unsuccessful. They informed us they merely performed a bypass so he could actually eat, because removing the tumor was impossible; it has apparently permeated the entire abdominal cavity, several organs, and become entwined with the main vein and the aorta. Naturally, they provided us with a prognosis—because we all just love those, don't we?—offering one timeline of about a month, and another suggesting three to five months. No further treatment options were even mentioned. For now, he is sticking to soft foods, and fortunately, his appetite remains, even if the meals are minuscule. What troubles him most is what he describes as a sort of "saliva" that triggers vomiting after certain meals—not always, but most frequently in the evening. He claims it is a clear liquid, which is why he thinks it is saliva. Has anyone here dealt with similar experiences, and how did you manage it? I try to tell him that this is likely a normal occurrence so soon after surgery, but I suspect I am not being particularly convincing... Oh dear, I have rambled quite extensively. Please forgive me.

Hello,

I am so deeply sorry that the diagnosis isn't something more hopeful, and unfortunately, I know nothing regarding stomach cancer. All I know is that one shouldn't rely solely on a doctor's prognosis, as recovery is such an individual journey for each of us. My mother was told she would barely survive a few months to a year, yet here we are, fourteen months later, and she is doing fine. I am certain someone here will be able to provide the answers you are looking for.

I cannot help but wonder... wouldn't it be possible to surgically remove at least a portion of the organ, perhaps something that might aid in recovery or reduce the tumor's presence?

In any case... please stay strong and keep writing. This is a sanctuary for all of us who wish to share our grief, our anxieties, and our will to live... kiss

Melissa Kim45 said:My dear ladies, thank you all so much. 😘

And to everyone who has ever written anything here and provided strength to others to keep going...

Mom has become terrifyingly thin; today I had to clean her up after she went to the bathroom just so her skin wouldn't chafe overnight. There is no more body left, just skin stretched over bone. I honestly don't know when it happened. The weight loss wasn't even gradual like that. We haven't seen her at 35, 36, or 37 pounds for quite some time now. During her last bath a few days ago, she looked different. For a couple of days, she was completely erratic, getting more agitated by the hour. She was smoking heavily, coughing, acting out, coming into my room in the middle of the night, just losing it... then she'll lie down in the afternoon only to wake up not just startled, but utterly terrified, calling people on the phone dozens of times. Her doctor isn't concerned—of course he isn't, since most patients with this diagnosis don't make it past a year—and he won't admit her to the hospital, only for outpatient visits. He claims there is nothing he can give her. They have been very "kind" to us, in their own way. Not that I don't understand the subtext...
On one hand, nobody would look after her like this, and her behavior would be an issue, but on the other hand—I simply cannot be away from work for this long...
I truly don't know what else to do.

He prescribed Megostat, and after the very first spoonful, I had this fleeting feeling that she actually looked a bit hungrier. Although, she eats more or less okay, but it is clearly insufficient, and when she hits a bad phase, the whole situation becomes a nightmare.

Her cigarette consumption has dropped drastically, yet she still finds ways to harass people, badgering them until they are placed in incredibly awkward positions where they eventually have to confront me. 😁
I realize there is no great point in forbidding things, but there is also no point in her constantly collapsing around the house. She is covered in bruises and scabs. On Sunday, she didn't fall once the entire day, and I actually thought to myself, perhaps things will improve. As if...
Today she can barely stand, and I’ve lost count of how many times I’ve had to lift her and help her walk. A chill runs down my spine whenever I see or hear her trying to get up, but what choice do I have...

Her female physician is suggesting IV fluids, but the doctor says no. I wouldn't want to torture her further, destroying her both mentally and physically, if there is no real purpose to it...

Sometimes she just drifts away entirely, and it is so difficult to witness. She forgets who she is talking to. I just sit here waiting for the moment this hits my brother or me. I have no idea...

I am so sorry that things aren't better and that there still isn't a solution to help her gain weight and strength. I really hope she can manage to take the IV fluids so she might regain some vigor...

As for the falls—unfortunately, there is no other way than to constantly worry and watch over her. Though, you won't be able to sustain this forever...😢 Given your courage and how much of yourself you pour into ensuring she is okay, I am certain you will find a way to return to work while still managing her care...

Hang in there and please keep us updated! Sending love...

slyseal28 said:Check the news.

This isn't merely a fight for those suffering from soft tissue sarcomas anymore... It is a battle on behalf of everyone battling rare and debilitating illnesses. We must stand together and offer our support...

I truly fail to see how any Secretary of Health could be considered fit for such an office after making a statement like that...

Regarding overseas treatment and funding, I can only point to my mother's experience. She received care in Italy. Even though her husband is not an Italian citizen, her medical expenses were covered in full. When undergoing chemotherapy there, the medications aren't billed separately; they are simply included in the daily hospital stay fee. Many people gave us advice suggesting we should buy the medication back here in the States because it was cheaper, but it turns out we weren't actually paying for it at all over there...

The cost for a stay for an Italian citizen is $50, whereas for foreigners it is $500, yet the medication is administered precisely at the scheduled time, without delays or waiting lists...

The struggle continues... because this system absolutely must change. It is not enough that drugs are prohibitively expensive and inaccessible, but now they claim patients simply lack the funds themselves... how utterly tragic...😢

Melissa Kim45 said:Necessity has forced my hand—and I am actually grateful for it—to finally establish some priorities. If this truly is a struggle for survival, then one ought to focus exclusively on what is vital for life, or perhaps on those things that might jeopardize that very survival if left neglected. Everything else is utterly inconsequential. Whatever happens, let it be as God wills; our responsibility is simply to do everything within our power. No one should ever have to endure such suffering, and I am acutely aware that even for us and Mom, we are fortunate compared to the struggles others face, both the healthy and the sick alike...

You are fully aware of the reality of the situation, you are being realistic, and you are showing immense courage. Necessity has driven you to this point, and as you noted, there is reason to be thankful for that clarity. You are pouring so much strength into all of this, and I truly admire how you refuse to back down. Every single post you write pushes me further; you always write in a way that makes me reflect on my own circumstances, which aren't nearly as dire as yours, and then I find myself thinking about what you wrote at the end of your message: things are difficult, but we can only choose to be braver and happier because we are navigating this together, and for now, we are doing okay...

Hang in there! kisses

Rebecca Young63 said:Hello, hello,

I am just so happy.
Yesterday was my first round of chemo, and they gave me the heavy stuff. Yet, I feel as though I didn't even receive it. Nothing unusual is happening to my body—absolutely nothing at all. My hair will eventually fall out, which is a certainty, but that is truly the least of my concerns.

Thank you all once again for the support.

Best,

I am equally delighted to hear this news! 🙂 One might assume you’d feel as if someone had pumped fuel directly into your veins, given that absorbing such a massive dose of medication is no trivial matter... Just keep moving forward with steady determination in your desire to recover! As you so aptly noted, the hair is merely a minor detail... It will grow back... the essential thing is that you are doing well! kiss

darkmaker70 said:Thanks! They confirmed at the Mayo Clinic today that her markers look good, and radiation starts this Friday... I had heard the wait times for radiation could be quite extensive, so we were actually surprised since it hasn't even been a month since the surgery. We are just crossing our fingers that she handles this part well, too; does anyone know of any typical side effects from radiation?

My mother only underwent chemotherapy and was never exposed to radiation. As for the consequences? Throughout all six cycles—and she was receiving some of the strongest doses available—we struggled constantly with her neutrophil levels dropping... She chose to push through the chemo twice at her own risk. Beyond that, her hair fell out completely; at first, she couldn't even fathom it, constantly telling herself how beautiful she was. We had to shower her with compliments, and we even bought her a wig before the chemo started just so she could feel secure that no one would catch her without hair... Her hair eventually fell out almost entirely, though over time she began to accept it and would even go to the beach without the wig. Today she has short hair again, as it has grown back, but she still wears the wig regardless. I actually shaved my own head recently, just to show her it wasn't such a catastrophe...

It has been nearly eight months since her last round of chemo, and everything visible as a result of that "ordeal," as she calls it, is simply a sense of fatigue, frequent mental fog, and poorer concentration...

I am glad to hear the radiation is following so quickly... everything will turn out fine, believe that, hold onto hope, and just stay by her side. Hang in there!

neonhound32 said:🙂

I am aware... I haven't lost hope just yet...

Please, continue to be brave. Knowing you are there will only make a mother stronger and more determined to fight... kiss

slyseal28 said:It feels as though everyone is just looking for ways to profit from oncology patients, and frankly, it gets under my skin quite terribly. It simply isn't fair.

I apologize if my explanation came across as hurtful to anyone, but I truly believe this forum exists so we can collectively navigate these dilemmas. Perhaps my perspective is flawed...

You are certainly not mistaken. Earlier today, I asked a few friends to sign a petition—and those shameless bastards refused, claiming it was a waste of time. It stung to get the impression that if one day, God forbid, I were to fall ill myself, they would be the very first ones to turn their backs on me...

How tragic...

Angela Wright said:Of course we will take action; it is simply part of our nature to be in a state of constant struggle. What weighs most heavily on me, and what truly causes me concern, is this feeling that we are perpetually fighting an invisible enemy or attempting to fight with one hand tied behind our backs... And then, just when it feels as though we have finally achieved something, everything is suddenly thrown back in our faces. My dilemma remains: what is the ultimate utility in fighting individual battles when the entire system and the nation itself are rotten to the core? Without significant structural shifts within the system and society at large, I fail to see how anything can truly improve in the long term. How can one reasonably fight for the right to access a single medication when the very system is denying us the basic right to exist? It is utterly pathological, perhaps even more insidious than cancer itself🙂. Sometimes, I feel a sudden urge to just pack up and move to Mars
.

Unfortunately... I couldn't even bring myself to finish the article... we must do something to change the system... I am speechless, truly speechless

darkmaker70 said:My mother started her chemotherapy yesterday, and thank God she hasn't had any major issues today or yesterday; the only thing bothering her is her digestion, though that’s likely due to the massive intestinal surgery she underwent, and I can only hope it’s temporary, just requiring some time for everything to heal...

Standard blood work looks great, and we received the tumor marker results today; as far as I can decipher them, everything seems fine, so we are just holding onto hope for the best!!!

The body requires an immense amount of time to recover from the shock of such a heavy surgery. While perhaps not the most comforting thought, my own mother still deals with digestive issues even after a full year, though it isn't particularly concerning—it's simply considered "normal" at this stage. Eventually, things should stabilize, because the most vital factors are that the blood tests are normal, the markers remain under control, and she continues to tolerate the chemotherapy well...

Hang in there... kisses

neonhound32 said:My mother was diagnosed today with bone cancer or leukemia. It’s incredibly bad; she has lost so much weight, she can barely move, and she has essentially lost all hope and her spirit...
She spent two months being shuffled from one doctor to another, only for them to finally tell us what she's actually facing today. I am in total shock, struggling to process this, and honestly, I don't even know if she'll pull through.
Today, I brushed her hair at the hospital, tidied her up a bit, and made her some sandwiches. She managed to finish half a yogurt...
Tomorrow they are performing a bone marrow biopsy, and once they confirm the exact type of cancer, her therapy will begin.
Does anyone have any experience with this? Will my mom be okay?...

I can only imagine the shock you're feeling, and I truly empathize... Given how much care and devotion you've already shown, just keep going; give her every reason to hold on and find the strength to fight. Don't let her spirit fade, and please, don't let your own spirit break either...

Hang in there... and have faith...

Angela Wright said:Read this for yourselves and witness the sheer disgrace of a Secretary of Health:...

I wonder who will take the responsibility for this wonderful woman, or if they'll even have the decency to seek out her family's vote when election season rolls around...☕
Simply appalling.🙂

Tragic, yet undeniably true...🙂 🙂 🙂 🙂

Just two weeks ago, when my mother had to go in for blood work, she was forced to wait for two hours without even a single chair to sit on, and she actually had to pay out of pocket for the service... at the time, she remarked, "just imagine if things were any worse, if I couldn't even access my medication; there's no one to protect us, and we don't even have the flu..."

One can only hope that some semblance of reform finds its way through the bureaucracy, because it truly must...🙏

wanderingharbor61 said:The link for Quest Diagnostics is right here on these pages, so I won't repeat myself, but since you need the latest details, here they are:

- The PET/CT equipment is located at the Mayo Clinic, though it belongs to Quest Diagnostics, so you have to coordinate the appointment through them...

- You need to print out certain forms (A and B) from their website, which can only be filled out by an ONCOLOGIST—meaning the specific doctor referring the patient for the scan—and those are sent via fax; they then provide a date, and for faster communication, you can just call them (the entire registration protocol is detailed on their site)

- Getting the exam through Medicare is free if one has supplemental insurance, otherwise, there is a co-pay amounting to $433

- A private exam costs roughly $11 $0.00, but even then, you are still waiting for the first available slot, meaning there is no skipping the line...

Since the wait felt far too long for us (we applied on April 10th and didn't get an appointment until May 19th), we decided to go to Budapest; the cost was €1000 plus travel expenses, all organized by the firm DMGV PET CT USA (I am attempting to open their website, but it seems to be down), and from securing the appointment to actually having the scan, it took a total of seven days...

Now, given that your mother is doing well and this is merely a follow-up, you should probably register her in the US as soon as possible; we were in a rush because my mother was diagnosed with metastatic melanoma, and that was essentially the only way to determine if there were further metastases, unfortunately 😢, as a primary lesion cannot be detected using this method...

To everyone battling this illness and their families, I wish you immense strength and success in your fight...

Thank you for such a comprehensive response; as far as I know, my father has already arranged that once he contacts Quest Diagnostics, he will wait no more than two weeks for the appointment, though it seems the PET/CT might not actually happen before summer...

Incidentally, if it were an emergency, we would have already done it at Avian, but the price there is $1500...

I appreciate your concern; stay resilient in your struggle and keep moving forward bravely...

Joshua King77 said:Regarding the specifics on PET/CT scans, there is the option to have the imaging done in Chicago—which I know to be true from my own experience—and you can find all the necessary instructions and details over at www.questdiagnostics.com...
If any particular details catch your eye, feel free to ask...

I appreciate the information 🙂 I shall take a look now