Ed, please accept my deepest condolences.
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Posts by Justin Ramos5
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Thomas Alvarez19 said:I wanted to check in here myself after about six months have passed.
My dad finished four cycles of chemotherapy and underwent both a bronchoscopy and a CT scan.
The results showed that while the primary tumor shrunk just a tiny bit, two metastases appeared in his bones and in his left lung.
Today, my dad tried starting a second line of chemotherapy, but he reacted so poorly to it—it was almost like he slipped into a coma—that the doctor actually stopped the treatment entirely and told us they wouldn't be putting him through any more chemo.
His mental and physical state has been hit incredibly hard, which was made even worse by the news that Mom was also diagnosed with pancreatic cancer.
I am desperately looking for some advice or wondering who we can turn to... because according to the doctor, he’s basically been written off.
Has anyone here ever heard of the Isorel injections? I know there are three different types—Isorel A, M, and P—depending on the specific type of cancer and the stage.
I saw a post on the For a New Day foundation website from a woman dealing with microcellular lung cancer who has been using them for seven years now.
My dad is fighting Ewing sarcoma, and his private physician, Dr. Soltyšik, suggested Isorel A. as one of his immunological supplements.
We ended up ordering all the preparations through him, and they are being shipped from Austria toward the border.
Dad's blood counts are actually holding up quite well (definitely better than when he was on beta 1, 3 D-glucan, native propolis, and the other vitamins and supplements we were giving him), and he's been able to stay on schedule with his chemo, even though it's quite aggressive.
Lisa White54 said:Anita, I am sending you all the strength in the world right now.
Thank you, Lisa, we are certainly going to need it. I just want to touch on what you said about everyone at the MD Anderson Cancer Center being so wonderful. We actually arrived there around 1:00 PM, and instead of meeting with the chief specialist—I can't even remember his name anymore—we were seen by this incredibly grim doctor who basically told us there was nothing to be done because it’s a 16 cm tumor, and perhaps some radiation could help manage the pain.
That was her final word on the matter, and at that point, we didn't even have a confirmed diagnosis from Salat yet.
She reached that conclusion based solely on old records from our insurance provider, since we hadn't even performed a recent CT scan or scintigraphy; we were just acting out of pure desperation, searching for any kind of help because our own local specialists couldn't even put two coherent sentences together regarding Ewing.
Dad has her "paperwork" somewhere, though I honestly don't remember her name and frankly, I don't care to find out.
I just can't wrap my head around how she could send us home with the implication that "this is it, there isn't even a fight left to pick." It was so devastating that Dad genuinely feared he wouldn't even make it back home!
Also, does anyone know how to get in touch with the healer Marijan Kera from Bibinje? He was featured on that one investigative news program.
I'm rushing this because my ear is absolutely killing me, so I think I might have miscalculated something. The pain is hitting my hip bone, the iliacus muscle, and my gluteal muscles too.
slyseal28 said:Honey, from everything I know, there just isn't any scientific evidence that homeopathy can successfully treat sarcomas. If such studies actually exist—please, I beg you, share that information with us.
Sarcomas are rare tumors, and surgery is usually the best way to handle them. However, because they don't have specific markers, they are very often diagnosed quite late, which means by the time you find out, they are typically huge. When my husband was first diagnosed, his tumor was 20 cm and located in the mediastinum. Thankfully, some sarcomas are chemo-sensitive and respond well to chemotherapy, while others can be treated with radiation.
Some sarcomas are just so incredibly stubborn that they don't react to anything... We still don't have those perfect targeted drugs that can truly block their growth. But we're constantly hearing news from all over the world about clinical trials for these new anti-tumor medications. Some are already in Phase 2 or Phase 3 testing.
Specifically regarding Ewing sarcoma, our specialist here has been seeing really wonderful results, so please don't lose hope. Try to follow the oncologist's advice. The side effects of chemo are what they are... You just have to find a way to manage them.
For blood counts, Neurobion forte capsules (Vitamin B) are great; they cost about $43 and you don't need a prescription.
If Dad is suffering from intense pain—PLEASE ask for therapy. Pain CAN be managed. My husband went through such horrific pain; he literally couldn't sleep in bed for an entire month. He couldn't even stretch out. On top of that, he was as stubborn as a mule and wouldn't even consider taking Tramal or similar medications...
Now he's taking Tramal, 100mg three times a day (I think), and the pain has finally subsided.
Ultimately, you have to make the decision, and I truly hope you act according to your conscience. The most important thing is that you believe in whatever path you take.
Dad was taking 100 mg Tramal and Zaldar. Now, instead of the Tramal, he’s using Lumidol drops. They seem to be working better for him, maybe just because he's been on the Tramal for longer now.
He's also taking 500mg of beta 1,3 D glucan (one capsule), though Dr. Soltysik suggested he should actually be taking two.
He's also taking native propolis, ABC plus, Hawthorn drops, and Lepicol (probiotics and prebiotics to help with gut health). For circulation, he takes Ginkgo Forte, which works better for him than Aspirin Protect.
I didn't realize our specialist had experience with Ewing sarcoma. He's very positive and tells Dad that everything will be okay and that the medication is actually shrinking the tumor.
The tumor affects Dad's pelvic bone, specifically the iliacus and gluteal muscles. As for whether any of the vertebrae that the pelvic bone rests on are involved, it's hard to say because even the specialist mentioned that scintigraphy can be unreliable. Should we ask him for a PET/CT scan, since I know it costs about 10 $0.00?
It actually caught me off guard when Dr. Soltysik said he should eat as few carbohydrates as possible, because I always assumed the tumor fed on proteins rather than sugars.
We'll see once they call us in for a consultation and further instructions.
Thanks for all the advice.
Ewing's
My dad finished his first round of chemo from the 16th through the 18th, involving Etoposide, Holoxan, Doxorubicin, and Uromitexan. He actually handled it surprisingly well. For the first two days, he felt totally fine and was able to eat normally. By the third day, though, he could only manage breakfast. There wasn't any actual vomiting, just some mild nausea. Since that third day, he’s slowly starting to eat again, but we have to be incredibly careful about what he consumes because his stomach is being quite sensitive.
His next scheduled chemo session should be on October 9th.
However, I met with our unnamed doctor today, and he explained that what they are doing is just the standard protocol available here in the US. He actually suggested looking into hyperthermia therapy, which could make the tumor more unstable and allow biological chemotherapy and immunotherapy to work much more effectively.
Since we have relatives living in Chicago, he suggested we look into options in Philadelphia or New York City.
We’ll get more specific details once he calls us to come in and pick up a customized meal plan, certain immune support supplements, and the proposed treatment plan.
The CT scan noted that he needs a Color Doppler due to concerns about potential thrombosis, but since the hospital didn't perform it, the doctor said it's an absolute emergency. He also needs his prothrombin time, activated partial thromboplastin time, clotting time, and D-dimer levels checked.
He's really worried about possible micrometastases, so getting those tests done is our top priority right now.
He’s honestly baffled that they recommended scintigraphy, which isn't even reliable, instead of a PET/CT scan.
But of course, why would they want us to spend the money? It's not like Dad is in any rush, as if they haven't already completely screwed him over at the local clinic—I still can't believe they didn't suspect a tumor sooner when he was lying awake every single night in agony, yet they treated him so incorrectly in the beginning.
Our local experts... sometimes I just want to scream!
So, what do we do now?
My sister stayed behind in New York City because the doctor said they’d write everything down as soon as possible so we can come by and finalize the arrangements.
My dad finished his first round of chemo from the 16th through the 18th, involving Etoposide, Holoxan, Doxorubicin, and Uromitexan. He actually handled it surprisingly well. For the first two days, he felt totally fine and was able to eat normally. By the third day, though, he could only manage breakfast. There wasn't any actual vomiting, just some mild nausea. Since that third day, he’s slowly starting to eat again, but we have to be incredibly careful about what he consumes because his stomach is being quite sensitive.
His next scheduled chemo session should be on October 9th.
However, I met with our unnamed doctor today, and he explained that what they are doing is just the standard protocol available here in the US. He actually suggested looking into hyperthermia therapy, which could make the tumor more unstable and allow biological chemotherapy and immunotherapy to work much more effectively.
Since we have relatives living in Chicago, he suggested we look into options in Philadelphia or New York City.
We’ll get more specific details once he calls us to come in and pick up a customized meal plan, certain immune support supplements, and the proposed treatment plan.
The CT scan noted that he needs a Color Doppler due to concerns about potential thrombosis, but since the hospital didn't perform it, the doctor said it's an absolute emergency. He also needs his prothrombin time, activated partial thromboplastin time, clotting time, and D-dimer levels checked.
He's really worried about possible micrometastases, so getting those tests done is our top priority right now.
He’s honestly baffled that they recommended scintigraphy, which isn't even reliable, instead of a PET/CT scan.
But of course, why would they want us to spend the money? It's not like Dad is in any rush, as if they haven't already completely screwed him over at the local clinic—I still can't believe they didn't suspect a tumor sooner when he was lying awake every single night in agony, yet they treated him so incorrectly in the beginning.
Our local experts... sometimes I just want to scream!
So, what do we do now?
My sister stayed behind in New York City because the doctor said they’d write everything down as soon as possible so we can come by and finalize the arrangements.
I didn't get a chance to mention earlier that my dad was first seen in Neurology and then moved over to Surgery.
After an endless barrage of pelvic X-rays, CT scans, and MRIs, they somehow completely missed a 16 cm tumor. Can you believe that? Then, right after the surgery, he had another CT scan, and the report just says there aren't any significant changes and leaves it at that!?!!!!
We were told this was some kind of urgent situation, yet we heard from one of the surgical techs that the entire surgical team actually huddled together once they opened him up because they had never seen anything quite like it.
So much for that "emergency" urgency, right??
Look, I get that things can be unpredictable, but shouldn't the chief of surgery be able to tell when something is significantly more serious than a simple inflammation???
And so we sat there waiting three weeks for the results, only for the doctor covering the shift to just bluntly state it was a tumor of the pelvic bone. He just stood there, silent as the grave. In that moment, I was so stunned by the shock that I couldn't even process where that part of the body even was. He just kept shutting down. I tried to ask if it was in the early stages, and he just goes, "Well, not exactly." I asked if it had metastasized, and he replied, "No." He literally couldn't manage to put two coherent sentences together—even something he could have easily looked up online—to explain what was happening. Apparently, in his 23 years of practice, he had never encountered a tumor like this in an adult.
To make matters worse, the report we waited three whole weeks for wasn't even fully defined and required further processing. We ended up having to wait another week for an oncologist from out of town to tell those idiots that they should have sent the tissue samples to Shalat immediately.
We actually ended up personally transporting two blocks of tissue ourselves, and the Pathologists could barely even locate one of them.
I know not every doctor is the same, but this has been our direct experience dealing with the local hospital system.
We are finally seeing Dr. Šantek at Rebro, and honestly, I have nothing but praise for him. Above all else, he is a human being who truly respects his patients. To him, we aren't just numbers on a chart; we are actual people with names and stories.
Does anyone happen to know how to get in touch with the healer from Bibinje, Marijan Kero?
After an endless barrage of pelvic X-rays, CT scans, and MRIs, they somehow completely missed a 16 cm tumor. Can you believe that? Then, right after the surgery, he had another CT scan, and the report just says there aren't any significant changes and leaves it at that!?!!!!
We were told this was some kind of urgent situation, yet we heard from one of the surgical techs that the entire surgical team actually huddled together once they opened him up because they had never seen anything quite like it.
So much for that "emergency" urgency, right??
Look, I get that things can be unpredictable, but shouldn't the chief of surgery be able to tell when something is significantly more serious than a simple inflammation???
And so we sat there waiting three weeks for the results, only for the doctor covering the shift to just bluntly state it was a tumor of the pelvic bone. He just stood there, silent as the grave. In that moment, I was so stunned by the shock that I couldn't even process where that part of the body even was. He just kept shutting down. I tried to ask if it was in the early stages, and he just goes, "Well, not exactly." I asked if it had metastasized, and he replied, "No." He literally couldn't manage to put two coherent sentences together—even something he could have easily looked up online—to explain what was happening. Apparently, in his 23 years of practice, he had never encountered a tumor like this in an adult.
To make matters worse, the report we waited three whole weeks for wasn't even fully defined and required further processing. We ended up having to wait another week for an oncologist from out of town to tell those idiots that they should have sent the tissue samples to Shalat immediately.
We actually ended up personally transporting two blocks of tissue ourselves, and the Pathologists could barely even locate one of them.
I know not every doctor is the same, but this has been our direct experience dealing with the local hospital system.
We are finally seeing Dr. Šantek at Rebro, and honestly, I have nothing but praise for him. Above all else, he is a human being who truly respects his patients. To him, we aren't just numbers on a chart; we are actual people with names and stories.
Does anyone happen to know how to get in touch with the healer from Bibinje, Marijan Kero?
Maria Jones40 said:Honestly, I see people constantly dragging doctors and medical staff through the mud here. It isn’t just happening now, either; it’s been a recurring theme where incredibly harsh falsehoods are spread, calls for "confronting" physicians are made, and there's just a general lack of basic decency. It really isn't okay, and frankly, you shouldn't be advising this lady to take such an aggressive stance.
The woman you're addressing mentioned that at the hospital where her initial CT scan was performed, she was told the tumor wasn't growing. However, she didn't provide two subsequent CT scans that actually showed the tumor was regressing. Now, they are comparing today's CT results to that very first one. So, who is really at fault here—is it the patient who isn't providing her full medical history, or is it the radiologist? She also noted that her bronchoscopy went well, thank God, and she's just waiting on the cytology results from the pleural effusion. What more was the doctor supposed to tell her? He gave her the facts straight, without rushing or being unprofessional. Once those cytology results come back, she'll have that information too. No one is hiding anything from her, unless the patient specifically requests that certain things be kept from her family, which is a right that must be respected.
I always felt this forum was meant to serve as a sort of psychological support system for patients and their families, not as a place to lecture others with "medical expertise" or to tear down the professionals who are trying to help you in any capacity.
I truly hope you never find yourself in the same position we've been in.
For about two or three weeks, my father was being put through these painful nerve blocks for his sciatica, and even after he had a CT scan last week, the doctors still couldn't figure out what was wrong and just kept pushing the blocks. He was literally falling apart, doubled over in agony, yet the doctor insisted it was impossible because the degenerative changes in his spine weren't severe enough to even warrant surgery. He even had an MRI, and once again, those geniuses were stumped! It wasn't until they saw how high his CRP levels had spiked that they finally acted. They rushed him to abdominal surgery, where the Chief of Abdominal Surgery—who also happens to be the hospital's Vice President—performed the operation. When I asked him how the surgery went and what the actual issue was, he told me they had cleared out a purulent inflammatory process in the retroperitoneum, placed a drain, and things were looking up. It wasn't until we spoke to the surgical technician that we realized it wasn't that simple and that they had actually taken tissue samples for analysis. The doctor only confirmed this later when we pressed him for answers.
We’ve been waiting three whole weeks for the pathology results. You might wonder why it's taking so long. The esteemed doctor claimed he had sent them off to a specialist in a major city like Chicago or New York due to some uncertainties.
But let me tell you, those results didn't go to a big city specialist. After a week of waiting, we ended up driving the results ourselves to the local university hospital. Neither the "esteemed" surgeon nor the pathologist even bothered to send them over.
What am I supposed to do, thank them for delaying my father from receiving at least a month of necessary chemotherapy??
frozencobra25 said:My dad lost the hardest fight of his life this morning at 6:10 AM.
Another wonderful man, loved by everyone, succumbed to a glioblastoma that unfairly forced its way into our lives on May 9, 2007, and changed everything forever.
My father was a true hero who fought until his very last breath, and until that final moment, he was surrounded by me and my mother. He finally fell asleep, exhausted and worn out, leaving behind a body that had been through so much. In one word—he is free.
Everything still feels a little surreal; no matter how much I knew how this battle would end, or how much I tried to prepare myself for this specific moment, it still arrived far too soon.
I am just so incredibly grateful that Mom and I were able to share these past few years experiencing the most beautiful moments with him, and he knew it—he was never alone, always surrounded by the people he needed most and those who loved him most deeply.
A huge thank you goes out to Angela Wright, a guide who spoke with such grace, choosing words that felt like they came from someone who truly understood our pain.
Thank you.
I am so sincerely sorry.
Please accept my deepest condolences.
Lisa White54 said:I feel so foolish for thinking we had actually won, especially since I’ve immersed myself so deeply in learning about this disease and feel like I know just about everything there is to know. But I suppose that’s just how it works—you want to believe so badly. And honestly, I had my reasons to be optimistic. My husband was truly doing so much better.
On Wednesday, he ended up staying overnight at Jordan. The cancer has returned. It’s back in the exact same spot as it was four years ago. They’re scheduled to perform a bronchoscopy on Monday, so we’ll see what the next steps look like after that. He’s starting dexamethasone today because he has some pleural effusion.
It’s just devastating.
I feel completely leveled by this news. The thing is, it isn't anything like it was four years ago—not even close. My husband isn't anywhere near the same physical or mental state he was back then. I honestly have no idea how he’s going to react when he finds out, because they haven't told him yet.
My heart truly goes out to you; I can only imagine how discouraging this feels. But please, keep fighting and stay persistent. I think it is incredibly vital to hold onto the fact that you gave everything you had and that you never, ever gave up.
My dad was admitted to Mayo Clinic today. He’s finally going to start his treatment. It breaks my heart so much that I can't be right there by his side. The house feels so empty, and my mom is all alone because my sister stayed behind in New York City. My husband and I are 5.6 miles quite far from my parents, so we’ve been spending every single day over at their place.
It is even harder to witness my father looking so vulnerable, when he has always been our rock and the strongest pillar for our whole family.
But I REFUSE TO STOP hoping and believing that things will get better and that he will pull through chemotherapy, even though I know realistically it isn't that simple, especially since he’ll likely need surgery following the chemo—specifically, a bone resection.
I know how incredibly difficult this is for you, but I truly believe you won't give up. That would be too easy, and everyone here in this forum is such a fierce warrior. You can draw strength from them.
Grace Fowler said:Hi everyone!!!
Blaise, honey, I am sending you my most sincere condolences.
I’ve been away from here for quite a while, mostly dealing with those intense complications—hospital stays, deciding whether or not to go through with surgery, you know how it goes. I finally managed to get away to the coast just to recharge my batteries and give this body of mine a chance to catch its breath. The ocean, the timing... everything aligned perfectly, though I suppose if I had actually tried to force it, things might not have worked out so beautifully. I made it back home to New York City feeling totally revitalized, full of good vibes, and naturally, I went straight to getting my follow-up tests done. Honestly, what can I say? The results were disappointing. My tumor marker has jumped by two and a half times since the last check, and after talking with my oncologist, it’s clear the disease is active again. It isn't necessarily a panic situation, but it feels heavy because I’m stuck in a bit of a corner—I can't do any more chemo due to kidney obstruction, and I can't do radiation because I’ve already reached my lifetime limit. To be honest, I’m not even incredibly shaken by it; strangely enough, the more time passes, the less stress I seem to feel. Like slyseal28 always says, it isn't really a fear of death itself, but rather this deep sense of melancholy and sadness regarding the possibility of saying goodbye to the people I love most. Ahead of me lies a whole marathon of testing and potentially heading back over to Germany for immunotherapy... I'll keep you all posted...
Sending you all my love
Perhaps a little sentimental today, your Dina
Grace, I am so incredibly sorry to hear about everything you're going through, but please, stay persistent.
I know it’s easy for people to offer empty platitudes, but we have to keep being brave and holding onto hope. We can't give up as long as there's a glimmer of light left.
Could you tell us a little more about the immunotherapy? Where did you go for it? How does the process work, and is it an option for all types of cancer?
I actually have a cousin living in Chicago, and she mentioned hearing about Dr. Nicolaus Klehr, though I think she said he practices in Austria.
Sorry, maybe you’ve already explained this, but my brain is just a fog lately and I can't remember where I read what I read.
Thanks
It’s just devastating to think about life without someone so close to you. My dad is supposed to be admitted to Mayo Clinic this Thursday to finally start chemotherapy, and honestly, this endless waiting period is absolutely destroying him.
Last night and again this morning, he just completely broke down. He started talking about the end—I can't even bring myself to use the actual word—and it was heartbreaking when he began speaking to my sister and me as if he won't be here tomorrow. This whole ordeal has been crushing his spirit and draining his physical strength all at once.
He’s becoming increasingly immobile because the issue involves his bones, and the delay has been just unbearable. We’ve spent three weeks waiting on pathology, then another week waiting for an oncologist from Indianapolis. Then, after getting everything sorted in New York City, we had to wait another month just to get tissue samples moved to Pathology, followed by visits to the specialist in Brooklyn, picking up results, seeing the doctor at Mayo Clinic, and now we're stuck waiting for him to actually be hospitalized.
We spend every waking moment trying to encourage him, telling him he has to fight and stay strong, even while we feel ourselves falling apart inside.
Everything everyone is going through right now is just so painful, and nobody deserves this kind of suffering. I keep looking back at his entire life, thinking about how much he has already endured, and now he has to face this too.
Right now, I feel like I just want to scream at the top of my lungs, but unfortunately, I'm stuck at work.
Last night and again this morning, he just completely broke down. He started talking about the end—I can't even bring myself to use the actual word—and it was heartbreaking when he began speaking to my sister and me as if he won't be here tomorrow. This whole ordeal has been crushing his spirit and draining his physical strength all at once.
He’s becoming increasingly immobile because the issue involves his bones, and the delay has been just unbearable. We’ve spent three weeks waiting on pathology, then another week waiting for an oncologist from Indianapolis. Then, after getting everything sorted in New York City, we had to wait another month just to get tissue samples moved to Pathology, followed by visits to the specialist in Brooklyn, picking up results, seeing the doctor at Mayo Clinic, and now we're stuck waiting for him to actually be hospitalized.
We spend every waking moment trying to encourage him, telling him he has to fight and stay strong, even while we feel ourselves falling apart inside.
Everything everyone is going through right now is just so painful, and nobody deserves this kind of suffering. I keep looking back at his entire life, thinking about how much he has already endured, and now he has to face this too.
Right now, I feel like I just want to scream at the top of my lungs, but unfortunately, I'm stuck at work.
Melissa Kim45, please accept my deepest, most sincere condolences.
I am truly in awe of the incredible strength and courage you've shown during this time.
I am truly in awe of the incredible strength and courage you've shown during this time.
I am just so incredibly sorry. Please accept my deepest and most sincere condolences during this difficult time.
I haven't checked in for a few days, and honestly, it’s overwhelming how many "new" faces have joined the group lately.
It’s been three weeks of us just constantly running around New York City; first we were over at the Salad clinic seeing an orthopedist, then we had to swing by the vineyard area to pick up some test results, and this Tuesday, we’re heading over to Rib. The goal is to finally get Dad's chemo schedule set, but I'm already terrified they might tell us there aren't any available beds in the hospital.
Over these last three weeks, his condition has visibly taken a turn for the worse. He isn't nearly as mobile as he was before, the pain seems to be hitting him more frequently, and now he's started running fevers, which is one of those symptoms tied to Ewing's.
The CT scan shows that his right pelvic bone is essentially "devastated," and the orthopedist already told us he's going to need surgery. The iliacus muscle on the front side of the pelvis and the gluteal muscles on the back are both affected. What scares me most, though, is that part of the sacrum and the L5 vertebra are involved, and they also mentioned a small 0.8cm focal lesion on the left supraclavicular lymph node, though the cause of that isn't clear yet.
Everything else regarding his organs looks okay for now.
I hit a massive wave of depression today, and I just let myself cry it all out.
Of course, I never do that in front of him. When I'm standing by his side, I'm a rock—just a steady source of information and strength—but the moment I walk through my own front door, I just break down.
I suppose we all have our moments of weakness. Hang in there, everyone!
It’s been three weeks of us just constantly running around New York City; first we were over at the Salad clinic seeing an orthopedist, then we had to swing by the vineyard area to pick up some test results, and this Tuesday, we’re heading over to Rib. The goal is to finally get Dad's chemo schedule set, but I'm already terrified they might tell us there aren't any available beds in the hospital.
Over these last three weeks, his condition has visibly taken a turn for the worse. He isn't nearly as mobile as he was before, the pain seems to be hitting him more frequently, and now he's started running fevers, which is one of those symptoms tied to Ewing's.
The CT scan shows that his right pelvic bone is essentially "devastated," and the orthopedist already told us he's going to need surgery. The iliacus muscle on the front side of the pelvis and the gluteal muscles on the back are both affected. What scares me most, though, is that part of the sacrum and the L5 vertebra are involved, and they also mentioned a small 0.8cm focal lesion on the left supraclavicular lymph node, though the cause of that isn't clear yet.
Everything else regarding his organs looks okay for now.
I hit a massive wave of depression today, and I just let myself cry it all out.
Of course, I never do that in front of him. When I'm standing by his side, I'm a rock—just a steady source of information and strength—but the moment I walk through my own front door, I just break down.
I suppose we all have our moments of weakness. Hang in there, everyone!
No matter how dark or hopeless things might seem, we simply cannot give up.
On Wednesday, August 20th, while we were over at the Salad, I met two kids battling osteosarcoma. One little girl was so withdrawn that it felt wrong to even pry, but the boy—he had such a vibrant, cheerful spirit that I just had to approach him. Once he stepped out of the doctor's office looking absolutely thrilled and his mom mentioned his results came back clear, I asked him about his illness. Honestly, I’ve never met a child so incredibly well-versed in their own medical condition and all those complex clinical terms, especially since he’s only about 12 or 13 years old. He had osteosarcoma in his knee, had undergone surgery, and has been going through chemo. He told me he spent about 18 months in the hospital.
A friend who was driving us said they had been sitting in a cafe—which is where he was hanging out while waiting for us, too—
and they mentioned he had dealt with metastases as well. I don't know the exact location because I wasn't really listening closely; you can't exactly bring that kind of thing up with a kid, let alone his parents.
The most important thing is that he made it through, and now it's all about the follow-up checkups.
Whenever my thoughts start drifting toward the dark side, I just picture him, smiling brightly and carrying nothing but a single crutch
which he handed off to his sister right after leaving the doctor's office.
On Wednesday, August 20th, while we were over at the Salad, I met two kids battling osteosarcoma. One little girl was so withdrawn that it felt wrong to even pry, but the boy—he had such a vibrant, cheerful spirit that I just had to approach him. Once he stepped out of the doctor's office looking absolutely thrilled and his mom mentioned his results came back clear, I asked him about his illness. Honestly, I’ve never met a child so incredibly well-versed in their own medical condition and all those complex clinical terms, especially since he’s only about 12 or 13 years old. He had osteosarcoma in his knee, had undergone surgery, and has been going through chemo. He told me he spent about 18 months in the hospital.
A friend who was driving us said they had been sitting in a cafe—which is where he was hanging out while waiting for us, too—
and they mentioned he had dealt with metastases as well. I don't know the exact location because I wasn't really listening closely; you can't exactly bring that kind of thing up with a kid, let alone his parents.
The most important thing is that he made it through, and now it's all about the follow-up checkups.
Whenever my thoughts start drifting toward the dark side, I just picture him, smiling brightly and carrying nothing but a single crutch
which he handed off to his sister right after leaving the doctor's office.
Does it mean anything if my platelet count came back at 535, while the standard reference range is listed as 158-424 (10e9/L)?
Also, my creatinine is sitting at 74, but the normal interval is supposed to be 79-125 (umol/L).
Thanks so much for any insight!
Also, my creatinine is sitting at 74, but the normal interval is supposed to be 79-125 (umol/L).
Thanks so much for any insight!
Hey fighters,
I am honestly so relieved to hear that things have finally been sorted out and your husband is starting his treatment.
My apologies to Angela Wright and the rest of you; I completely misread the situation earlier. I thought you all might feel overwhelmed by all these intense questions about what steps to take next, especially since everyone here is dealing with their own heavy burdens.
My family is just starting to grapple with the very same issues you're describing.
The endless back-and-forth from one doctor to the next really kicked into high gear once we got the diagnosis on August 4th.
I actually called up the local vineyard area to check on a scintigraphy appointment, but they don't have an opening until November, so we’ve scheduled something at the major hospital in New York City for September 26th instead.
We are going to go ahead and get the CT scans for the chest and pelvis done privately to speed things up.
I totally understand how discouraging it feels when people just stop speaking up, especially after you've done everything in your power to give them a platform. At the end of the day, there's no sense in just sitting around complaining or wallowing together.
I can't say for sure how my dad is feeling—he’s incredibly brave and a fighter through and through, though this illness has definitely taken some of the wind out of his sails—but personally, I’m not afraid to speak my mind. Especially if we hit more roadblocks during chemo or if we find ourselves stuck waiting indefinitely, not to mention the mounting medical bills.
Honestly, it’s all going to drive me absolutely crazy, and I’ll probably be venting quite a bit, though I'll try to keep it somewhat civil!
I would love to connect with any of you whenever we make trips down to New York City.
We’re planning to get the CT scan done this Monday and stay overnight at a colleague's place so we can head out on Tuesday to tackle everything at the big hospital.
I'm still a little lost when it comes to how they actually finalize the chemo schedule and the ultimate treatment plan.
Please forgive my misunderstanding once again.
I am honestly so relieved to hear that things have finally been sorted out and your husband is starting his treatment.
My apologies to Angela Wright and the rest of you; I completely misread the situation earlier. I thought you all might feel overwhelmed by all these intense questions about what steps to take next, especially since everyone here is dealing with their own heavy burdens.
My family is just starting to grapple with the very same issues you're describing.
The endless back-and-forth from one doctor to the next really kicked into high gear once we got the diagnosis on August 4th.
I actually called up the local vineyard area to check on a scintigraphy appointment, but they don't have an opening until November, so we’ve scheduled something at the major hospital in New York City for September 26th instead.
We are going to go ahead and get the CT scans for the chest and pelvis done privately to speed things up.
I totally understand how discouraging it feels when people just stop speaking up, especially after you've done everything in your power to give them a platform. At the end of the day, there's no sense in just sitting around complaining or wallowing together.
I can't say for sure how my dad is feeling—he’s incredibly brave and a fighter through and through, though this illness has definitely taken some of the wind out of his sails—but personally, I’m not afraid to speak my mind. Especially if we hit more roadblocks during chemo or if we find ourselves stuck waiting indefinitely, not to mention the mounting medical bills.
Honestly, it’s all going to drive me absolutely crazy, and I’ll probably be venting quite a bit, though I'll try to keep it somewhat civil!
I would love to connect with any of you whenever we make trips down to New York City.
We’re planning to get the CT scan done this Monday and stay overnight at a colleague's place so we can head out on Tuesday to tackle everything at the big hospital.
I'm still a little lost when it comes to how they actually finalize the chemo schedule and the ultimate treatment plan.
Please forgive my misunderstanding once again.
Angela Wright;15607131 said:Everyone, please just give her some space!!!
Today, I feel compelled to make a public appeal to all patients who aren't silent, much like my mother was, as well as to the family members of those who can no longer speak for themselves.
To put it simply for those of you dropping by this thread:
Honestly, I just cannot wrap my head around the mindset of people who relentlessly harass slyseal28—specifically Catherine—every single day, acting as if she’s responsible for fixing their individual problems. For heaven's sake, the association exists to provide support when you decide to go public, not to serve as a sounding board where we have to recount your entire life story over and over. You can't build anything meaningful out of hearsay; all it does is make us look like clowns on national news, and then nobody takes our cause seriously. This woman is dealing with a sick husband and her own mountain of struggles, yet she is noble enough to lead this association and listen to your stories. Please, don't be selfish, P, and show some respect!
If you actually want to resolve an issue, you have to take the lead on it YOURSELF, perhaps with a little help from friends along the way. That is just how life works, so please, just accept that reality once and for all. Without that realization, you won't solve a single life problem, let alone fight against cancer.
This was probably aimed at me.
I am not asking anyone to fix my problems, nor am I asking them to defeat "our" sarcoma.
People have more than enough of their own burdens to carry.
I truly thought it would be okay to ask for advice (specifically from those who have been through it or are currently enduring it) regarding where to get certain things done and what the wait times look like.
That’s it! I just hoped that, at least here, I wouldn't be brushed off the way you get treated at a hospital
where you wait hours for a doctor only to be told they aren't coming because they're in surgery, or some other excuse. It feels ridiculous when you live miles away from New York City and you've got plenty of money to spend.
I am sincerely grateful to slyseal28 for her replies, her support, and her relentless fight—not just for herself and her husband, but for all of us. I know she doesn't get anything out of our gratitude, but still.
I can contribute by gathering signatures, and that is exactly what I'm doing. I've seen all sorts of reactions—from people saying, "I wouldn't bother, I'm not from around here," regardless of whether they're from a small town or a big city.
In a stroke of luck, I've also met people who asked me to leave the petition with them so they could deliver it to the right place.
As soon as I gather a significant number, I will send them to the association's address, potentially multiple times.
I am not afraid to speak out publicly about the challenges we face.
I am so incredibly sorry for your loss. Please accept my deepest condolences.
Today we finally received the pathology report from Dr. Sven Viggers:
The histology shows irregular connective tissue fragments interlaced with a tumor composed of small atypical cells featuring hyperchromatic nuclei and scant cytoplasm, mostly organized in irregular clusters. Some of the tumor cells show necrotic changes. These tumor cells are predominantly round to oval with irregularly distributed chromatin and no prominent nucleoli. Immunohistochemical testing of the tumor tissue was strongly POSITIVE for CD-99, while remaining negative for NSE, S-100, EMA, and cytokeratin.
The findings primarily align with a diagnosis of Ewing sarcoma.
RT-PCR genotyping for EWS/FLI-1 came back NEGATIVE, though this doesn't rule out the aforementioned diagnosis.
I honestly can't believe they still haven't reached a definitive conclusion—it’s just another "subtype" situation.
I was doing some digging online and found that the histogenesis of Ewing sarcoma hasn't been fully determined yet, which I suppose explains why pinpointing it isn't so straightforward.
Our orthopedic specialist (Dr. R. Kolundžić) referred us to Dr. Šantek over at Kaiser Permanente to get started with chemotherapy.
We need to schedule a pelvic CT scan and a whole-body bone scintigraphy with CT.
Once the oncologist finishes their evaluation, we have to head back to the orthopedist to discuss pelvic reconstruction, which involves removing the affected bone.
For the imaging, they recommended using the Vinogradski facility, so does anyone happen to know what the current wait times are looking like there?
We could always opt for a private CT scan, but I’m a bit lost regarding the scintigraphy—does anyone know if there's a private clinic where we could get that done?
Thank you all!
Today we finally received the pathology report from Dr. Sven Viggers:
The histology shows irregular connective tissue fragments interlaced with a tumor composed of small atypical cells featuring hyperchromatic nuclei and scant cytoplasm, mostly organized in irregular clusters. Some of the tumor cells show necrotic changes. These tumor cells are predominantly round to oval with irregularly distributed chromatin and no prominent nucleoli. Immunohistochemical testing of the tumor tissue was strongly POSITIVE for CD-99, while remaining negative for NSE, S-100, EMA, and cytokeratin.
The findings primarily align with a diagnosis of Ewing sarcoma.
RT-PCR genotyping for EWS/FLI-1 came back NEGATIVE, though this doesn't rule out the aforementioned diagnosis.
I honestly can't believe they still haven't reached a definitive conclusion—it’s just another "subtype" situation.
I was doing some digging online and found that the histogenesis of Ewing sarcoma hasn't been fully determined yet, which I suppose explains why pinpointing it isn't so straightforward.
Our orthopedic specialist (Dr. R. Kolundžić) referred us to Dr. Šantek over at Kaiser Permanente to get started with chemotherapy.
We need to schedule a pelvic CT scan and a whole-body bone scintigraphy with CT.
Once the oncologist finishes their evaluation, we have to head back to the orthopedist to discuss pelvic reconstruction, which involves removing the affected bone.
For the imaging, they recommended using the Vinogradski facility, so does anyone happen to know what the current wait times are looking like there?
We could always opt for a private CT scan, but I’m a bit lost regarding the scintigraphy—does anyone know if there's a private clinic where we could get that done?
Thank you all!