#Ewings Sarcoma

[larjb3]

So for anyone who believes the medical system is relatively simple to navigate, here is how my afternoon has gone so far:

Called my insurance for help answering 5 questions. The first question took about maybe 50ish minutes to only sort of get an answer? And that was after the agent repeated back to me, several times, saying "As I previously explained" followed by an explanation that did not answer my current question. So that took a while. Then I went on to my next questions. Two of them apparently did not make sense to the agent either (in addition to me), based on the claims, and so they had to go talk to another department while also transferring me to another different department. They also were confused by another one of my previously appealed claims, and so they had to do their own digging as to what was going on. This entire call lasted just over 1 hour 40 minutes.

THEN I got to call ANOTHER number for a different hospital service because my account online wasn't showing a balance, but the letters I have received said I do have a balance. The agent who answered the phone for this call also didn't know why my balance was not showing online. This question got squared away pretty quickly, running just over 11 minutes in call time.

So now think of this: I am a (reasonably) well-educated person, with a PsyD in Clinical Psychology, and have been closely intertwined with the medical system since 2017 when I finally got one of my diagnoses. I have, in recent years, been even more intertwined with the medical system, with applying for Medicaid at one point, managing which doctors I see due to them actually being in-network with my various insurance providers through the years (not sure any of you notice, but finding an in-network provider, ESPECIALLY when on Medicaid, is extremely difficult), managing various prescription costs, talking to insurance as to why certain medications are suddenly no longer covered, advocating for myself when meeting with different providers (which they absolutely do not like but it 100% is necessary), calling insurance when something doesn't make sense on a claim (e.g., why a service, that was not specified, is suddenly not covered under an in-network provider), finding the right department to contact for insurance, trying to send messages with insurance and getting answers that pretty much say nothing with regard to answering my actual question (which then results in having to call insurance, which is not really all that fun), and there's probably more that I'm missing.

I'm also a relatively privileged individual, with a (mostly) stable wi-fi connection, a phone that can be easily charged and is currently connected, and a way to jot down notes both before and after calls (before: what questions I have; after: what the agent(s) said regarding my questions).

Now think about those in poverty. Do I have the most money? No, but I have a stable place to live, food, and water, and I have support from others (including you all!) who have helped me tremendously through financial support. But do those in poverty often have those things? Not always. Then put on top of trying to fend for basic survival necessities (which should probably be a pretty high priority) the medical system. This includes insurance (or lack thereof) and, if someone has it, paying consistently for it. This includes paying out-of-pocket costs with probably minimal money. This includes somehow getting to appointments on time with methods of transportation that may not be the most reliable, or they may cost a lot of money. This includes picking up and paying for prescriptions on time. This includes (if at all possible) communicating with one's insurance regarding claims that may not make sense. THEN we add on possible kids and have all the same barriers previously mentioned. THEN we have the possibility of someone having a job (if they're lucky enough to hold one), while managing medical things for both themselves, and if they have them, their kids. If they don't have a job, then we're looking at figuring out how to get on disability or SSI (both of which are TREMENDOUSLY difficult and tedious to get on and takes months to years to actually successfully do it). Now we're looking at if this person even has an advocate or case worker to help them. If they don't, or don't know how to get set up with one (because actually knowing what services you're entitled to, especially with different insurances, is exceedingly confusing), then they're on their own trying to navigate this vast landscape of things to manage. Oh, and we also have to consider that if someone IS on Medicaid or disability, they can only work a certain amount and take in a certain amount or else they lose their coverage. I'm not entirely sure the number of hours one is allowed to work on disability, but I want to say maybe around 15/week? (If someone actually knows this number please reach out to me and let me know!)

So we have all this mess. And think, I spent just under 2 hours on the phone with various insurance and medical providers today, but someone who is super struggling and under-privileged likely doesn't have the 2 hours needed to whatever questions they may have. Which can unfortunately result in frustration, hang-ups, and not getting an answer that can be understood in layman's terms which can result in more frustration and potentially just giving up on advocating for oneself.

It's a mess, and there are so many layers that are not discussed or even thought about by so many different people. I feel as though this needs to be said and at least somewhat recognized by others, potentially to help provide compassion to those so closely intertwined in the medical system.

[surgicaloncology]

Specialty Surgical Oncology Hospital and Research Centre

Description- Specialty Surgical Oncology is exactly as the name suggests, it is one of the top cancer hospitals with a leading group of specialist cancer surgeons with vast experience in highly focused areas of cancer surgery, who have joined together to provide the best of their collective expertise to patients battling this difficult disease.

Address- Silver Point, 6th Floor, Lal Bahadur Shastri Rd, Kasturi Park, Maneklal Estate, Ghatkopar West, Mumbai, Maharashtra, 400086.

Phone/Mobile Number- 8268880185 Website URL-https://specialtysurgicaloncology.com/

[crossborderscare]

The diagnosis of Ewing sarcoma in starts with the detection of various symptoms, such as pain at the tumor site and swelling.

[bommagoni]

Ewing Sarcoma Drugs Market Size, Share, Analysis and overview

[somosprojetoamigos]

O que é sarcoma de Ewing?

O sarcoma de Ewing é um tumor maligno que afeta principalmente crianças, adolescentes e jovens adultos, com pico de incidência em torno dos 15 anos, de acordo com o Inca (Instituto Nacional de Câncer). O mais comum é que o sarcoma ocorra nos ossos e, em ordem de frequência, se dá nas extremidades inferiores, no quadril, nas coxas, no tórax, na extremidade superior, na coluna, na mão e no crânio.…

[thescoopess]

Leah Smith, TikToker Who Documented Rare Cancer Passed Away March 11

PHOTO: Leah Smith/TikTok The 22-year-old celebrity on TikTok, who documented her uncommon cancer diagnosis on the internet, passed away. Leah Smith, a resident of Woolton, Merseyside, passed away on Monday due to Ewing’s Sarcoma, a condition that typically affects youth. Over 500,000 individuals tracked Ms. Smith’s journey on TikTok, where she shared daily updates on her illness. Her partner…

[healthcareporium]

Exploring Bone Sarcoma: Variants, Therapeutic Approaches, and Future Prospects

Bone sarcoma, a rare type of cancer, affects the bones and surrounding tissues. The condition comprises various types, including chondrosarcoma, Ewing sarcoma, and osteosarcoma, each presenting unique challenges in treatment. However, recent advancements in therapies offer hope for improved outcomes in managing bone sarcoma. Challenges Associated with Bone Sarcoma Treatment: Bone sarcoma…

[drpedi07]

Toronto Childhood Cancer Staging criteria for Ewing sarcoma Calculator

Ewing sarcoma treatment usually begins with chemotherapy and/or radiation followed by surgery to remove any remaining cancer. Treatment options for recurrent sarcoma include targeted therapy and high-dose chemotherapy with stem cell transplant.

[lazarro]

[enalfersa]

El chico de las musarañas

Ana Obregón, una de las mujeres más queridas y reconocidas de nuestro país, nos ofrece un desgarrador testimonio sobre la pérdida de su hijo Aless Lequio, tras una larga y dura enfermedad. El corazón de este libro es El chico de las musarañas, el texto que Aless empezó a escribir cuando le diagnosticaron cáncer. Un relato sincero, ácido, irónico, vibrante, con un sentido del humor único, que no…

[larjb3]

Prefacing this by saying that I have chronic pain, which has existed for most - if not all - of my life (yes even when I was a child). I also currently have cancer and am actively going through chemo treatments.

ANYWAYS

My boyfriend today told me (roughly) that I need to stop doing so much during the day (I was holding 2 cat beds and some other stuff that needed to be washed and told him I needed to go to CVS for meds after I started laundry and then I wanted to come home and workout). I was confused, because I didn't feel like it was all that much, and I only had 2 clients + supervision earlier. He said that the day after I do "too much" I'm usually in bed the next day for most of it, or my pain levels are higher. I nodded and said "yes," waiting for actual things that happen after I do "too much." He basically just repeated what he said in different ways when I continued to give him a blank expression. I kept telling him that that's normal for me. He didn't seem to believe me. I told him he hasn't previously lived with me (since when I have low energy-high pain days I usually avoid people and interactions, so he didn't previously see the effects of me doing stuff on a day but he does now since we live together). He said he's lived with me for 8 months now. I said again that that's pretty normal for me and is a pretty common pattern, and that the exhaustion I feel on the day after doing stuff lessens the more I get used to doing stuff. This means that it'll take some time for my body to acclimate to doing things, since chemo has pretty much taken so much out of me for the past 5 months. Eventually he accepted (or gave up with trying to change my mind?) when I said something along the lines of "this is normal, and it's only 'too much' when I cause a flare-up, which I haven't done yet."

I also don't think he actually knows what a real flare-up (fibro) looks like for me. I think he's only heard of it and what it does, but I don't think he's actually *seen* one. I mean, maybe I've had one in these past 5 months since starting chemo, and maybe I just blamed it on chemo? I'm not sure, but that's also kind of besides the point.

So it's interesting to me, as someone who has lived in my body my entire lifetime and has had to navigate different energy and pain amd fatigue levels, that someone else who has lived with me for less than a year, is able to tell me what "too much" is in terms of what I can do during the day. Now it's not to say that sometimes he is absolutely correct when I do too much, and I will openly give him that. But also, this is the most steady energy I've had for multiple days on end in months, and I feel that I'm at least *sort of* pacing appropriately?

[medicomunicare]

Le indagini sul sarcoma di Ewing: a caccia di proteine cruciali per renderle bersaglio di farmaci rivoluzionari

Il sarcoma di Ewing è un cancro delle ossa e dei tessuti molli nei bambini guidati dalla chimera EWS-ETS, più comunemente EWS-FLI1. Poiché le attuali chemioterapie citotossiche non migliorano la sopravvivenza delle persone con casi di sarcoma di Ewing metastatico o ricorrente, sono necessarie terapie mirate nuove e più efficaci. Nonostante molti tentativi, tuttavia, la terapia mirata EWS-FLI1 non…

[pedripics]

After arriving at their hotel in Madrid yesterday, Pedri, Ferran, Iñigo, Oriol Romeu and Marcos Alonso spent over one and a half hours talking to the wonderful Maria Caamaño Múñez, a little football fan who has been fighting Ewing Sarcoma (a rare type of bone and tissue cancer) for the past four years ❤️

vía mariacmfutbolera and __luuciacm

[copperbadge]

Radio Free Monday

Good morning everyone, and welcome to Radio Free Monday!

(Quick message to Anon who submitted an item for their friend who is fundraising for food and meds -- the post was deleted and I couldn't find another one on a quick skim, so I'm guessing they took down their fundraising, that's the reason they aren't included!)

Ways to Give:

doctorscienceknowsfandom linked to a fundraiser for larjb3; they met when Larjb3 contacted them thinking they were a medical doctor, to ask about a lump on her neck. After a long diagnostic journey, it was diagnosed as Ewing Sarcoma, rare in adults, and she is looking at possibly having to quit her job to focus on survival. She's raising funds for medical bills, household bills, and against the months of treatment ahead, and you can read more and support the fundraiser here.

Anon linked to a fundraiser for Eddie, a hard-working LGBTQ artist in the rural South, trying to move himself and his pets to the west coast to build a new life; he's been dealing with a string of escalating issues where he is, and the move will help open up opportunities and keep him safe. You can read more and support the fundraiser here.

forlorn-kumquat is raising funds to get seating and storage for their third-grade classroom, to help their students learn comfortably. You can read more and support the fundraiser here.

Recurring Needs:

Anon linked to a fundraiser for a friend whose family has not had a working furnace since November; they've been using space heaters to keep warm but January in Chicago has been brutal and the space heaters aren't sufficient. With vulnerable family members including elderly relatives and children in the home, they need to raise $6K to get the furnace replaced. You can read more and support the fundraiser here.

Anon linked to karla-hoshi or Hoshi on TikTok, who is raising funds for cancer treatment for her cat Naku; they caught the cancer early and hope that he can survive it. You can read more and support the fundraiser here.

chingaderita's partner's family house recently caught fire and completely burned, killing his grandmother and causing extensive property loss; he has also recently lost his job due to the fire, and a number of family members have since become ill. They're raising funds to keep food on the table, and get their partner mental health aid, and now are looking at doctor's bills for medical treatment. You can read more, reblog, and support the fundraiser here.

nivchara-yahel and rivalconga are raising funds to cover January and now February's rent and fees; their synagogue had agreed to help, but backed out after the deadline had passed for payment. They're trying to raise what they need before the landlord files for eviction; you can read more and support the fundraiser here.

thelastpyler is raising funds for food and medication for them and their family, and for transportation costs to medical appointments; you can read more, reblog, and find giving information here.

And this has been Radio Free Monday! Thank you for your time. You can post items for my attention at the Radio Free Monday submissions form. If you're new to fundraising, you may want to check out my guide to fundraising here.

[sharkkweak]

Putting this out here, Alex goes to my school and he recently got diagnosed with Stage IV cancer, so we’ve set up a gofundme to help him pay for his chemo and other bills.

Please share this around! Anything helps, even if it’s just giving this post reach!

[ilblogdellestorie]

Sanzione di oltre 1 milione alle società riconducibili a Chiara Ferragni e di 420 mila euro a Balocco per pratica commerciale scorretta. Lo annuncia l’Antitrust, spiegando che, secondo l’Autorità, «le suddette società hanno fatto intendere ai consumatori che acquistando il pandoro «griffato» Ferragni avrebbero contribuito a una donazione all’Ospedale Regina Margherita di Torino. La donazione, di 50 mila euro, era stata invece già effettuata dalla sola Balocco mesi prima. Le società riconducibili a Chiara Ferragni hanno incassato dall’iniziativa oltre 1 milione di euro».

Secondo l’Antitrust, insomma, il modo in cui veniva presentata l’iniziativa poteva indurre in errore i consumatori i quali potevano pensare di contribuire alla donazione in favore dell’ospedale. La società aveva invece già deciso l’ammontare a prescindere dall’andamento delle vendite del prodotto. «Questo Natale io e Balocco abbiamo pensato ad un progetto benefico a favore dell’Ospedale Regina Margherita di Torino - aveva scritto su Instagram l’influencer in occasione del lancio dell’iniziativa - Abbiamo creato un pandoro limited edition e sosteniamo insieme un progetto di ricerca per nuove cure terapeutiche per i bambini affetti da Osteosarcoma e Sarcoma di Ewing. Sono davvero fiera di questa iniziativa e di rendere il nostro Natale un po’ più rosa e dolce con questo pandoro speciale».