Angela Wright said:You did everything you could—that’s what gives you peace of mind. Hope you're doing okay too. When is your appointment?
I feel the same way, honey 🙂... we really did our best. I wasn't just sitting around waiting for a call from the hospital for two months like some bystander 🙂
My appointment is June 24th, though my doctor said I'll likely go in sooner because of my blood work and heparin therapy 🙂
The little one is restless... I can't wait to finally see her, meet her, and thank her for choosing me to be her mom. Can't wait to welcome her to the world 😍
Just ready to kiss that tiny little wrinkled butt and those feet—currently measuring about 5cm and 4mm 😍😍
Here’s an update on my mom's recent consultation...
She’s finished two cycles of chemo so far—each cycle consists of three sessions (Monday, Wednesday, then the following Monday)—making it 6 treatments total over those two rounds. She had her lung imaging and bloodwork done today... and honestly, the results look good. The X-ray shows some improvement, and her blood counts are surprisingly solid—her white cell count didn't even drop (it's at 6). She was also prescribed an appetite stimulant, and she’s finally starting to eat more consistently.
She has two more cycles left to go, starting this Monday. That brings the total to 4 cycles—or 12 treatments in all.
We’re hoping for the best, but I'm relieved things are looking up slightly. My brother and I feel much better knowing we followed the advice from the Head of Department at the Mayo Clinic—we jumped straight into chemo IMMEDIATELY.
If I had waited for them to call us from San Francisco—which would have been a two-month wait—I think we would have made a massive mistake.
At the end of the day, whatever happens, happens—but I'm glad the current results are positive.🙂
Grace Stewart6 said:My dad has gone through everything—biopsies (including lymph nodes), surgery on a growth, PET/CT scans, bronchoscopies—you name it, they’ve done it. And still, they haven't found the primary tumor. Just the metastases. He's starting general chemo now, and I just pray it works. Sometimes, unfortunately, getting an exact diagnosis isn't that straightforward.
But hold on a second... tumor cells are tumor cells, even in metastases...
Are you telling me there aren't five different types of tumors? They can't be clueless about which one it is—it's one primary and four secondary... That sounds like a nightmare, God help us.
I had this explained to me at the hospital in Cleveland, and they were very clear... the primary tumor sends out signals and creates those metastases. If the metastasis is adenocarcinoma (lung cell carcinoma) which we biopsied from my mother's chest... then the primary tumor can't be small cell lung cancer or squamous cell carcinoma 😕😕 (it can't be three different types of carcinoma)...
Do you get what I'm saying?!
Honestly, once my oncologist laid it out logically for me, I realized they were right... don't just settle for some generic treatment. You can identify the specific cancer cells from the metastases and prescribe the right therapy based on that...
Just don't let them pull the wool over your father's eyes.
brisksurfer said:Unfortunately, I got my hopes up way too early! 😢 Another medical screw-up... basically, my dad went in for a follow-up CT last week, and it didn't just confirm the lung cancer—it showed the tumor grew from 2.5cm to 5cm. His bronchi seem okay now, probably thanks to the antibiotics. He went back to Jordanovac today and the doctor told him he couldn't understand why they only did a bronchoscopy last time when that isn't enough (they really should have done some kind of biopsy). He has to wait until May 21st for the next round of tests, at which point they'll admit him to the hospital. That means it’s been 6 months since they first noticed changes in his lungs... I don't know what to do... this has completely sent me into a spiral of despair. 🙂
Meanwhile, when they treated my mother, they did both a bronchoscopy and a biopsy of the primary tumor, plus a lymph node biopsy in her neck. It happens quite often—when you biopsy a primary tumor, air can get into the lungs. That’s exactly what happened to her... she had to wear a chest tube for five days so they could vacuum the air out.
Long story short, they really put her through the wringer at Rijeka Hospital.
When we finally went to a private clinic outside of America, the doctor's first comment was... "They put your mother through unnecessary procedures." You need to check the lymph nodes in the neck and chest first—biopsying a lymph node is often enough to get those cancer cells.
If you have a doctor you actually trust (and won't take offense), suggest this to them... tell them not to put your father through invasive tests that aren't strictly necessary. Those delays can end up pushing back chemotherapy, and everything could have been diagnosed much more simply.🙂
Just checking in here... my mom is finishing up her third round of chemotherapy (they only called her from the hospital in Rijeka a few days ago) General status: she’s feeling weak and exhausted—nauseous, but hasn't actually thrown up—and while food sounds unappealing, she’s still eating everything. She’s been leaning toward heavy, calorie-dense stuff... old-school comfort foods, stews, lamb... says it actually sits well with her. 🤷
As for the bloodwork—her white cell count has dipped slightly (though the doctor says that's normal), and she has hyperthyroidism—but that's from her heart medication, not the chemo.
The doctor puts it this way: first, she’s handling the treatment itself quite well; second, we wait to see how much the chemo actually impacts the disease once it's done. Let's hope it stops the cancer and gives her more time.
Anyway... hang in there, everyone...
Sending you all so much strength as you fight this. 🙂
dustyraven33 said:It’s possible if you’re definitely pregnant but your hCG levels were just too low to trigger a result initially. Once they climbed high enough, the test finally caught it.🙂... congratulations
Look, beta HCG is a pregnancy hormone. I honestly don't get it... what does a hormone have to do with a cyst? Just because people have shared those experiences doesn't mean it's some universal rule.🙂
A friend of mine has been on corticosteroids and immunosuppressants for two or three years now. She managed to ease the whole thing through homeopathy—taking piles of vitamins—and she’s actually managed to scale back her steroid dose a bit. My advice? Don't you dare try to quit those on your own... seriously, don't. You'll run into issues during pregnancy, too, though there are doctors for that—it's just that in the US, you'll find specialists who handle this, but even then, your options are pretty limited.
Just focus on yourself right now... if you need anything else, just shoot me a DM.
mistyridge5 said:Look, Susan Diaz91, that whole thing with RI Hospital really threw me—they called us way before everything actually kicked off, and once we had a date, the nurse gave us a ring at home a day or two prior just to confirm. 🤷
Give them a call and check. Honestly, my experience with RI Hospital has been much better than the one in OS. 🙄 Hope you can get it sorted out. 👍 :
Even after Easter passed, we still haven't heard anything. I'm not calling them—not out of principle, anyway. I'm just wondering when they actually intend to reach out. My mom is getting treated abroad regardless; we're paying for her chemotherapy and hospitalization privately... I'd love to know how long one is expected to wait when dealing with advanced lung cancer and metastasis to the Th1 vertebra. 😢
Nancy Hernandez43 said:I'm glad your mother received her chemo—hopefully she avoids any vomiting.
Regarding chemo and comparing our hospitals to how things work abroad—just yesterday my mom was complaining about how in places like Florida people are waiting up to three months just to get called in for therapy. Abroad, they actually stick to a schedule, whereas here we deal with constant delays.
Doctors overseas tend to be more proactive, so that's probably why your mother was given anti-nausea meds. I can't recall if ours got them too, but I think they did!
Anyway, Happy Holiday to you!
The fact that there's such a long wait at all is what gets me.. I actually asked about this Milinić reform... doctors are saying it's slowed everything down instead of speeding it up... Everyone is terrified of him because he’s such a rough-around-the-edges kind of Minister 🙄🙄that they don't want to risk their jobs during a recession by deviating from his protocols.
Did they give her those anti-nausea meds along with a cocktail of electrolytes and minerals? She hasn't eaten anything in two days, though she hasn't vomited either...
The whole situation is just pathetic—everything we aren't able to do to help our loved ones.
Look, I'm not an expert on whether things are better abroad, but I know my conscience is clear because I've tried everything. A patient's mindset matters—their environment, their physical condition, how they'll handle the chemo... it all counts.
Thanks for the kind wishes; I wish the best for you and your mother as well.
But seriously, tell me—did she finally get her turn, and how long has she been waiting????
Mine were scheduled for March 1st, 2009, and to this very day, nobody has called (and I made sure to give them my cell number, which I always have on me).
My mom finished her first round of chemotherapy outside of the States (and just so you know, she still hasn't heard anything back from the local hospital regarding the next session). She’s currently waiting out a 15-day gap before starting the second cycle. She dealt with some nausea and a lack of appetite, but she didn't actually vomit—and her appetite has already come back. Right now, she’s eating greasy, heavy food and says it actually hits the spot... (at least, that's what she tells me)
She received an accelerated dose of Gomzar via IV—which is basically the "pay out of pocket and get results" option. During those days when the nausea was hitting hard, they gave her an anti-nausea med through the IV along with a cocktail infusion to help boost her strength.
Does the medical staff routinely give this to everyone, or is it one of those things where you pay extra to get it? If it isn't standard procedure under Medicare, I wanted to let you all know it exists—so please, look into this for your loved ones if they are struggling with nausea or feeling completely wiped out...
That anti-nausea med really stabilized her so she wasn't throwing up, and the infusion gave her enough strength to push through it all.
Hoping for the best 🙂.
The only thing is, I am beyond disappointed with our hospitals... nobody has called her in a month and a half. It's honestly shameful. 😢
driftingnomad122—if they have genetics available in Cleveland, just do it there. If not, you'll need to book an appointment at Mayo Clinic with Dr. Begovic—he’s actually the professor heading the genetics department. Grab a referral for an exam and lab work (blood tests), then call 555-012-3456 to schedule. Just ask specifically for Professor Begovic's genetics clinic. 🙂
A geneticist at the Mayo Clinic actually brought up this specific pattern when I went in for my amniocentesis consultation. He was talking about mosaicism—specifically one type that affects the external genitalia. Apparently, female babies might not even have them, even though the child looks perfectly healthy and normal on the surface..
He explained that amniocentesis is designed to catch these things—basically just certain breaks or fractures on specific chromosomes...
Mickey.. I really hope what your girl is dealing with is a milder version.. 🙂
I’ve been MIA for about ten days because I was looking after my mother, who just got discharged from the hospital. It’s confirmed—she has lung adenocarcinoma that has spread to her neck and lymph nodes... they even found a metastasis in her sternum...
To give you the full picture... she was sent home from the hospital looking completely wasted. She lost so much weight. I’ve been cooking for her, trying everything, and she finally started eating, which was a relief.
Her pulmonologist didn't sugarcoat it: "Your mother's condition isn't just serious, it's critical. You need to start chemo IMMEDIATELY." The issue is the oncology department in Washington, D.C.—they simply don't have any openings...
I just stood there and watched... (didn't pull any strings or use any connections) and the staff at oncology told me: "Your mother will get the Gemzar once we order it and Medicare approves it in about three weeks." The drug isn't the bottleneck; it's the space. Because she's a cardiac patient, she won't be seen for inpatient care for at least two to two and a half months.
I didn't say a word to the oncologist... didn't argue or protest anything. I just said, "Fine, please put her on the list." They scheduled her for inpatient admission and chemo starting in June. They mentioned that's actually fast, considering you might wait up to six months for radiation...😱
Luckily, I spent years working in law and collaborating closely with doctors—handling things like accident reconstructions, trauma, and autopsies, so I deal with forensic medicine quite a bit. Because of that, I managed to reach a high-ranking official at the Mayo Clinic to ask for the real truth about my mother's illness... (That raw truth that doctors tell one another as colleagues, but would never tell a patient or family member. I learned through my work that there are two truths: the one told to the patient, and the actual reality discussed between professionals when they comment on a case.)
When I went to his office the next day, he looked me right in the eye and said: "Get your mother out of here immediately. Forget the formalities and the paperwork... skip the waiting lists for Gemzar approval... she needs chemo literally tomorrow. If you wait, she might die between doses."
They shouldn't have even bothered with the CT scan of her thorax or the lung biopsy. They could have just taken fluid from the lymph node in her neck via aspiration and gotten the cancer cells then. If only my dear Luna had reached out sooner, we could have saved three weeks.😢
When it comes to cancer, honey, every single day counts. Take this seriously...
I was stunned. I asked if he could recommend someone in a major city like New York? A hospital... somewhere... anyone? I'm six and a half months pregnant and feeling completely lost. He said he could, but warned me that entering a major hospital is such a bureaucratic nightmare—admissions, connections, more tests, then being back at oncology because hospitals always want their own specific results. And then there are the priorities (keep in mind there will always be someone with better connections or a more advanced stage of illness who jumps ahead of your mother because she isn't dying *yet*... and there's still hope...) the waiting lists, the Medicare approvals, all of it.
Then he told me: "Unfortunately, our working conditions mean we don't have time to deal with the patient; we deal with the disease. A more advanced, aggressive disease is a bigger challenge for us than something that isn't quite as urgent." That's the reality.
So I asked... what am I supposed to do then?
He said, "If you have the money... take her to a private clinic. She can't wait."
And so, guys, here we are. My brother and I decided to take Mom across the border to a private clinic... and I have to say, they admitted her immediately on Sunday. They did an X-ray right away (nothing worsened; the pleural effusion is gone, no fluid in the lungs)... they even complimented her "star student" pulmonologist (that's my nickname for her). Her electrolytes were low, likely from losing them during her hospital stay, so they gave her four liters of IV fluids over two days.
They did a full consultation yesterday morning, and here’s the lineup: 1. A cardiologist (she has heart issues) 2. An oncologist, 3. A pulmonologist, 4. An internist, and 5. A pharmacologist... and she starts chemo this Thursday.
One dose of the standard chemo is about $275, plus $65 a day for the hospital stay...
They praised the Pulmonology department for being thorough, but they wouldn't say a word about Oncology (and honestly, I wouldn't either).
The point of this post isn't to trash our doctors—they deserve respect because they're working in conditions that are frankly beneath human dignity—the goal is to point out what's actually happening: we are becoming exactly like America... if you have the cash, you get treated; if you don't, you cross your fingers and wait.
Pathetic, truly pathetic.
To be clear, I don't have unrealistic expectations or insane demands (let's face it, nobody "cures" cancer—those who do usually reach out years later when it recurs, or they end up the subject of some documentary or science special), but I perfectly understand what it means when one doctor tells another "treatment needs to happen NOW." I simply cannot live under that kind of weight. I want to help IMMEDIATELY (as they told me) because there is such a thing as fighting for your life—giving a person a chance to try and save themselves... all while maintaining some shred of human dignity.
If I can't save my mother, I'll be devastated because I failed, but at least I'll have a clear conscience knowing I did everything possible.
Lisa Wilson60 said:Back when I was eight months pregnant, doctors realized my baby wasn't developing properly. All the long bones—the femurs and humeri—were shortened. After I gave birth, they confirmed it was a condition right then and there. They couldn't even specify which type of skeletal dysplasia the baby has. Does anyone know who I can reach out to for advice or a specialist who actually deals with this?
Everything changed after January 1st with the new healthcare reforms.. now when you go for any specialist appointment (especially oncology ones), everything is handled through a centralized computer database. You get a printed appointment slip with the hospital's header—it's all automated now—and the wait times have actually gotten longer...
As for how they prioritize patients, a department head told me yesterday that while there isn't an official list, priority is being given to younger people... especially since the changes on January 1st took effect.
I’m looking for some insight from anyone here who actually knows what’s going on:
1. Is it true that you can wait months just for an initial screening and processing at an oncology ward?? Ever since this new centralized scheduling system rolled out, I was told everything slowed down... apparently, this has been the case since January 2009.
2. Is it true that there are waiting lists for chemo—specifically priority lists where younger patients get precedence? (If that’s how it works, what’s a realistic timeframe for my 71-year-old mother to actually get her turn?)
3. Is it true that Terceva will only be handed out to "selected" patients? Meaning, it won't be prescribed to everyone who needs it because Medicare just allocates a set amount of doses to specific hospitals and that's it... leaving those who can't access it—for whatever reason—without the medication, regardless of their legal rights.
4. Is Terceva on the drug list as of March 1st?(Because if it isn't, I have no idea how we're supposed to get it)
Lisa White54 said:My husband has non-small cell lung cancer. It’s localized to his right lung—which has collapsed—and his trachea, which is still clear enough for now. He’s got a small pleural effusion, some air and gas buildup too... and his pleura is thickened. The pleural fluid count looks okay, and the bronchoscopy results were fine. What I mean is—what you just described sounds significantly worse. Just don't lose hope. Has she started any treatment yet? Hang in there; I know this is overwhelming for you. But miracles happen. Those non-small cells tend to grow slowly—that's some small comfort, at least for me. Stay strong.
He isn't on any treatment right now... they basically just treated his lungs—sealed off the pleura to stop the fluid from building up.
My brother is heading to the doctor today to have a full discussion with her...
She told him a few days ago that there aren't metastases in the other lung, but instead in the chest cavity and the neck... it's type 4 adenocarcinoma.
I won't know for sure until that conversation happens.
It's surreal... knowing your mother is terminal 🙂... while my baby is kicking like crazy in my womb right as I'm typing this to you 😍... I'm feeling this bizarre mix of emotions—this weird synthesis of negative and positive energy that I can't even put into words.
Life really is strange (as much as I'm pissed off at it right now)... I feel like everything happening to me has some deeper meaning or lesson, but I'm in too much shock and too confused to try and analyze it all right now.