Linda Morales66 said:Last night, around 10 p.m.—only a month and a half after we finally got a definitive diagnosis—my mother passed away... It was just a few hours after I went to see her one last time to say goodbye..
Please accept my deepest, most sincere condolences. This is all so incredibly moving that it brought me to tears myself, and how could I not when I'm living through the exact same thing... especially since we don't even have a clear name for this disease yet... May she rest in peace, and may her soul find comfort in heaven...
I haven't been around the forum much lately because my heart just wasn't in it. On the 24th of last month, the best man I ever knew passed away. My dad finally lost his 14-month battle with kidney cancer. No matter how much we all hoped things might take a turn for the better—even though the doctors gave us a grim outlook from the very start—it just didn't happen.
To all of you fighting this cruel disease, or those standing by someone who is, I wish you so much more luck and strength. May God be with you.
If there is anything I can offer in terms of advice based on what we went through, please don't hesitate to reach out.
Linda Morales66 said:Well, I figured it was time for me to check in after a while too... I gave birth to my son on August 16th. :-) My mom just isn't herself... we took photos of the baby and sent them to her; she flipped through them three times and held onto them close... but after that—it’s like she just gave up. She refused to eat, became so weak that she looks like skin hanging off a frame... her hands shake... once they told her they’d have to use a feeding tube if she didn't start eating, she promised she would. She only ate for two days, and even then, just a few spoonfuls of something soft, and then it went right back to how it was. Now she won't eat again, won't drink anything... they've put her on an IV. She doesn't talk at all, barely waves a hand or mumbles something... she just sleeps the whole time. As for chemo or physical therapy, we can only dream about that; she’s far too weak, so none of that has even been started. She just lies there in silence...😢
Could you tell me how old your mother is? A loss of appetite can often be triggered by pain medications, especially Tramal. My mom scaled back on the Tramal a bit; last night she just took one Voltaren and nothing else, and she ended up eating all day long, so now I’m actually getting worried because her appetite has come back. She’s starting to gain weight again, which honestly concerns me too. She eats whatever she can get her hands on and has even started eating meat—chicken thighs and veal—and she talks about food constantly; she even had deli meats and ham, which she never used to do (this woman never even touched a cigarette in her life, let alone a drink, except maybe at weddings and stuff). She lived such an ascetic life, and she certainly didn't deserve what happened to her, whereas I, for instance, have spent my whole life drinking and smoking, barely move at all, and my blood pressure averages around 185/110. At my last weigh-in, I was 149.5 kg, and now I'm at 133 (and it's not just fat; I have a heavy frame and plenty of muscle mass, so nobody even believes me when I tell them my weight). My knees have started acting up, but I'm walking normally for now and I'm not taking any painkillers (except for the occasional Normabel for emotional distress—because of my mother) and so, life goes on. Right now, I'm at the coast mostly because of my mom—the ocean air does her good, though the weather is being a bit difficult for us... we decided to head to the beach even if it's overcast (since we're going to get wet swimming anyway), but those UVB rays are important even without direct sunlight—Vitamin D. From what I've read, 2,000 IU a day is decent, but thirty minutes in the sun provides 10,000 IU—without Vitamin D, there isn't much hope for oncology patients... the sun penetrates deep into the body, not to mention the benefits of the seawater (or even freshwater). Summer is almost over, but we need to make the most of these last rays... anyway, I don't dare say that Mom is doing better... even though it seems like she is, everything could go south tomorrow... You have to push for what you believe in, and whatever happens, happens. Our goal is to shrink the tumor naturally if possible; if it doesn't work, it doesn't work. Then we'll have to face the alternative. Sending my best to everyone, and I wish for all of you to be rid of these nasty diseases that rob people of their lives (and especially their families) DEATH TO DISEASE, LIFE TO HEALTH!!!!!!
Reading through previous posts, I found myself shedding a few tears, and honestly, how could I not? It’s a devastating realization of just how small a person really is against the infinite stretch of time and space. Everything passes in a flash; you barely have time to celebrate one thing before life hits you with a "penalty" for that very joy. It's been the same for me since roughly 2005. Even though I welcomed my son that year—the single most beautiful event in the world—nothing else has gone right. Every decision feels wrong, everything falls apart, and even when I manage to resolve something, it usually ends up being to my own detriment. There's plenty more to say, but I won't dwell on it now. Mostly, I just feel "transparent"—sad, indifferent to almost everything, except perhaps finding a way to get my hands on some Normabel. Nothing matters to me anymore, except for getting my mom healthy again. In the process, I didn't even notice I've dropped about 20 pounds; I've completely neglected my own health. I have several medical appointments I need to settle once I get back to Washington, D.C., but frankly, I couldn't care less. My knee hurts, but I actually felt a sense of relief when the pain spread to the other one—whatever, let it hurt. Like George would say, "whatever, damn it." When you're standing on the edge of the abyss, you either jump or you stay. For now, I'm just vegetating, but there is one silver lining: escaping Washington, D.C., with my mom. We headed to the coast, something we should have done a long time ago instead of wasting our lives in doctor's offices. Truth be told, Mom can barely shuffle along with her walker, but once we reach the beach and she gets in the water, she feels so much better. A smile finally appeared on her face as she "wobbled" through the surf with her four-wheeled walker... getting to and from the car via the stairs is tough, but it's wonderful. We ended up looking like we belonged to an old Native American tribe, baked under the sun. I spent the time rubbing after-sun lotion on her; she was hot as an ember. Whatever. Vitamin D is essential. We're only on day three, but we don't want to miss a single dip. Rain, sun, 100-degree heat—nothing stops us. And I'm absolutely scorched myself because it's been blistering lately and we arrived with nothing but pale skin. Regardless, we decided not to rush back to Washington, D.C., because we’re going to try a different approach to shrinking the tumor. If the tumor visible on her right thigh doesn't shrink in a month, then so be it—at least we tried. We're also trying a lot of fruit and brought various glucans, vitamins, Reishi capsules, and such, just in case. At the very least, it ensures our vacation isn't a total loss. After everything we've endured this year, this sea air, the ocean, and the sun—which shines differently here than it does in Washington (like Xenon)—combined with frequent showers in cold beach water, it does wonders. Mom's pain is significantly better. She takes one Tramal or Voltaren a day and that's it. When she's in the ocean, the pain vanishes... we'd stay in the water all day if we could. We forgot our hats, though, so the sun is punishing us. But things should improve every day, if only summer weren't slipping away. There's this man here, 94 years old. A couple of years ago, they could barely push him into the water in a wheelchair; they had to hold him up just so he could splash around. Now, he practically flew past us on the stairs, nearly knocking my mom over as she struggled up with her walker. You wouldn't believe it's the same person. Last year, he was pale, haggard, and couldn't walk—probably from being stuck in the hospital. Now, he's tanned, energetic, and doesn't just walk, he runs. He could play center forward for the Miami Heat, I guarantee it. He's living proof that it's never too late. Ugh, I'm rambling, but I'm currently in this "in-between" zone—between the normal life we used to have and this current reality where death is looming over my family. Does anyone happen to know an email address for an oncology clinic in Italy that communicates via email? I want to send over some photos and test results to see what they think about the situation...🙂🙂☕🤷😕 Hello everyone, and wishing you all good health!!!
Honestly, I still don't get why you're so fixated on this specific diagnosis when there isn't a single shred of relevant evidence—like a pathology report—to confirm it yet. It feels like you're mentally burning yourself out, wasting precious energy on "what ifs" before the actual groundwork, like the surgery, has even been finalized or even decided upon. You seriously need some support just as much as your mother does right now. If you snap, you won't be any help to her at all; you'll just become an extra heavy burden for her to carry, and frankly, that isn't fair to her.
You're right, I am falling apart. The mornings are the absolute worst. You have a nice dream, wake up feeling okay, and then reality hits—you remember Mom and everything else, and the first thing you think is, "Oh god, not again." Just another day of misery and uncertainty. It’s like living with a guillotine hanging over your head by a thin thread for months on end; you never know when it’s going to drop, and the worst part is that you've already been robbed of any chance at joy or peace. My mind is stuck on a loop: "What do I do?" The situation feels impossible, yet I have to find a way out. This year, I haven't heard a single comforting word from the doctors—except from one of them—it's just been nothing but the worst news over and over. I can't even get enough calming medication; I can only get one box of Normabel a month, which barely lasts me four days because I need to take four or five pills at once just to feel a tiny bit of relief. It’s a dosage issue—I weigh 320 pounds, so I need more than that, but I refuse to turn to alcohol or cigarettes to cope, because that would just make everything worse—between this and the hangovers, I wouldn't stand a chance. I honestly wish I could just "hate" my mother or have her hate me; it would be so much easier.🙂🙂🤷
RADIATION.....but what does radiation actually mean? Technically, even sunbathing counts as "radiation," and I’ve read somewhere that UV rays can be effective against all types of cancer because they penetrate the skin to alter the body's entire structural balance—it's not just about getting a tan for nothing. A tan is a sign that something internal is shifting. If you combine that with swimming in the ocean, I truly believe it's one of the most powerful tools we have against illness. Unfortunately, my mother didn't get lucky this year, and neither did I... We ended up in the middle of those massive wildfires, right in the epicenter, and we nearly burned up and suffocated. We had to cut our trip short and head straight back to Washington, D.C., without even getting a single toe wet in the Atlantic. Also, I'll never understand why they label places as "Spas" when they don't even offer a single pool or a basic hot tub. A "Spa" should imply actual thermal springs, like some luxury resort in the mountains, but this place was nothing like that.😢
Thank you so much for the response. What would be the standard chemotherapy used for Osteosarcoma, and is it readily available here in the States if needed? Also, is there any truth to what I read online suggesting that Osteosarcoma isn't typically treated with radiation? Thanks again and best regards.
I also had one more question: if someone actually gained access to Vertex Pharmaceuticals, would they still need surgery to remove the sarcoma, or does Vertex Pharmaceuticals work non-operatively, similar to how chemotherapy is used to shrink a tumor?🤷
I was wondering if Vertex Pharmaceuticals is used strictly for soft tissue Sarcoma, or if it's also effective against Osteosarcoma—basically bone cancer? By all appearances, my mom is dealing with primary osteosarcoma, though we are still waiting on the biopsy results to confirm everything....Thanks so much.😕
Linda Morales66 said:Look, we got ahead of ourselves thinking everything was going to be okay... God, this is so hard.. Dad just called (he was talking to the doctor) and they’re discharging her on Friday. But she’s having severe hallucinations, totally out of it, and right on the edge of being aggressive.😢 Just yesterday she seemed fine, lucid... my "old" mom. She told Dad to open the window so she could jump out, and she yelled him out of the room with such harsh words... we know it's the illness talking, but still... it hurts so much... she's even trying to rip those patches off...
Today was the first time I truly broke down; I woke up sobbing uncontrollably.. I dreamed about Mom—about me and my daughter (who's 5) looking at photos of her, and in every single one, she's smiling and talking to us, all those beautiful moments and little stories we shared... it just completely crushed me..
And now comes the worst part. Just when I was thinking about telling Dad that maybe it's best if Mom comes home to her familiar surroundings since she seemed fine (lucid)... how that damn disease tricked me🙂 — after today, we don't have a choice... Dad is going to look into assisted living... my heart is breaking, just shattering, because I could never forgive myself for putting her in a facility—but maybe we can help her, make things easier... by staying by her bed and watching over her once the home health aide arrives... but it's just not feasible, I'm only realizing that now... and it's so hard to accept.. I'm waiting for Dad to get to our place, and I have to stay strong for him, even though I'm falling apart inside... I also have my own hospital appointment tomorrow (waiting on the baby)..
Damn cancer! Sometimes I just want to scream.🙂
Terrifying. Absolutely terrifying. I'm going through all of this with my mother too, except she is still herself, though sometimes she gets so worked up that I have to run out of her room. I know how much she's hurting; I massage her legs because they go numb when she lies down—it could be from the medication (Tramal, Zaldiar), or maybe the tumor is pressing on a nerve or a vein. My heart breaks too, because she is a part of me (we've been together for over 50 years; she raised me as a single mom). She built me, and she is my entire world—aside from her, I have no family left (I have a few relatives, but I haven't seen them more than a handful of times in my life, and everyone else is gone...). The only thing that helps a bit is when I take four Normabels; it eases the ache in my heart slightly, but I can't get more than one box a month, which isn't enough. I'll need to see a psychiatrist, but I just don't have the time.... Anyway, I wanted to say that I will never, under any circumstances, give my mother up to a nursing home. I simply couldn't live with it—I won't be able to sleep. I'm going to care for her until the end, unless I pass away first.🤷
Does anyone happen to know the maximum daily dosage of beta-glucan recommended for advanced cancers, such as sarcoma? My mother is currently taking two 500 mg doses per day, but we are considering increasing that amount to help slow down the tumor's growth. Thanks in advance.😕
Well, we won't be able to get that biopsy done this week, and I'm driving my mom down to the coast during the second week. Once we're back from our trip, we'll figure out the next steps. If she needs surgery, then so be it. But regardless, I want a clear diagnosis before anyone picks up a scalpel. I don't want them performing an operation on her for nothing. It would be a different story if the medical opinions were actually aligned, but so far, only one doctor has insisted on opening her up and removing it, while the others have advised against surgery altogether. Ultimately, without a biopsy, you're just guessing—there are a thousand different types of tumors, and each requires a specific approach. Some respond to radiation, whereas most sarcomas are resistant to it.... I know someone who passed away recently; he just had some leg pain, but it turned out to be a metastasis, which led to finding tumors in his brain, lungs, and so on... they used lasers to try to bridge the connection between his brain and his leg, followed by chemo, then radiation, and just like that, the man was gone... he was only 50... Before all that, it was just his leg hurting, but after all those "treatments," his whole body started aching until he couldn't even get out of bed. It all happened within a few months.... May God rest his soul....😢
We’re likely heading to a private clinic tomorrow for the biopsy and subsequent PhD analysis. If it turns out to be a sarcoma, we haven't just lost a single day—we've lost an entire year waiting around and gathering test results without ever getting a definitive diagnosis. We’ll be deciding on our next steps in the coming days. We absolutely have to get this biopsy done so we can finally identify the tissue composition and the specific name of the tumor; once we have that, making a decision will be much easier. Best regards!😕
Angela Wright said:When dealing with sarcoma, there’s a fundamental rule to follow—and I’ve already pointed this out to you more than a few times. The goal should be surgical removal as soon as possible—get as much of it out while you can. Unfortunately, we just don't have any therapies effective enough yet to actually fix the problem without resorting to surgery.
Yeah, easy for you to say when we don't even have a final diagnosis yet. I am absolutely not doing that biopsy right now. I went to Mercy Hospital today and they won't take me—everyone keeps sending me over to Šalat—but if I actually make it there, they say I have to go under the knife immediately. One doctor told me they want to do the biopsy during the actual surgery. But what if it isn't a sarcoma? They cut you open, tear everything out, and it turns out it wasn't even necessary... then you're just done. First and foremost, I want to see the cytology results from a biopsy. I want a definitive diagnosis after seven months of waiting. Where is a person supposed to go and pay for that? We already went to one private clinic, but they didn't even return most of the samples.🤷.......
I appreciate all the advice, but I wanted to ask about this "magnetic resonance preoperative pain therapy" they recommend at various spas—would that actually be helpful before a potential surgery? I’ve heard some people claim it's effective. Personally, I feel like there's always enough time to deal with the scalpel when it comes. Some folks suggest that if you're dealing with something like a sarcoma, you should try to "shrink" the tumor before the operation, and maybe this therapy combined with soaking in the ocean and getting some sun (for that Vitamin D boost) could help in that regard......🤷
Durogesic? Is that some kind of cream or an oil? And can you even pick it up without a prescription? I'm not sure where I'd even find an anesthesiologist right now.... Anyway, thanks for the advice.😉
Oh man, you’ve got a point there. I remember being down in Kaštel Kambelovac for a "vacation" about twenty years ago—staying in a private rental—and the ocean was just this milky white color. You couldn't see even ten centimeters below the surface... probably because of all those local factories or the cement plants nearby. We actually had to drive over to Resnik just to go swimming; it wasn't exactly crystal clear either, but at least it was an option. It wasn't until I got to Primošten about ten days later that I finally saw what "normal" water looks like. I honestly couldn't believe my eyes when I could actually see the seabed just a few meters down.... Sure, Miami is polluted too, but compared to Indianapolis, being right by the coast makes a massive difference. Anyway, I make my mom a fresh fruit and veggie smoothie every morning, but she’s already taken some Tramal before that and ends up throwing everything back up... Is it okay to combine Tramal drops with something like Advil granules or Voltaren? Like, if you take an Advil granule along with maybe 10 drops of Tramal? Or what is a person actually supposed to take for pain management when dealing with bone tumors?🙂....Best wishes and enjoy your summer vacation!
Lucky you. Even if it’s hellish there, at least you get to see that ocean blue. All I see here in Indianapolis is that stupid tower on the hills and the smokestacks from the power plant and the old DIOKIJ site. The only redeeming quality is that the downtown area is a ghost town in the afternoon—no people, no cars, just the heat... if only it stayed like that. We might actually be able to live here. But once everyone comes back, man, we're all done for. Those leftover lung issues from the pollution are going to finish us off eventually.... Regards!🙂