northernfox9 said:My father passed away on November 8th at 8:30 in the morning. The battle is lost, but I believe God always knows best and has a plan, and that he is in a much better place now...
Ivankovic, please accept my deepest condolences.
I want to thank everyone who has stood by us over these last 10 months.
I am so sorry... My heart goes out to you.
And yes, I'm certain he's in a better place now... sending you all my strength and thoughts to help you get through these days... 🙂
@Katarina, I think you overlooked those folks from Cleveland? I’m asking specifically regarding the CT scan results. You could have at least given me a ring on the phone, you know?
Oh, I haven't forgotten any of you... if anything, I think about you all much more often than you realize. 🙂
Just wanted to follow up on that whole ordeal regarding scheduling the CT scan.
I mentioned previously that I called Diagnostics 2000 yesterday—they're a private facility that accepts Medicare referrals—and the woman on the line basically snapped at me, telling me to just call back next Monday.
Well, I gave them another ring today, and this time I spoke with a different woman who was actually kind and genuinely helpful. We managed to secure an appointment for December 4th. Of course, if I were paying out of pocket, I’d probably have been slotted in within three days.
Anyway, that’s the situation with CT scans. The hospitals are a total mess; they’re either completely backed up or they aren't even taking new orders until December of next year.
p.s. Jane Doe, I'm thinking of you—sending you all my strength to get through today.
Ronald Lopez56 said:except.... for instance, why on earth is Jordan operating at a profit? I’m genuinely curious if anyone here actually has a clear vision of how that works.🙂
Ronald Lopez56 said:One of the two CT Scanners at General Hospital is still out of commission. They won't even pick up the phone, which makes scheduling impossible. They only take orders between 1:00 PM and 2:00 PM, and you don't get an appointment right then; they just call you back later with a time. You have to bring a specialist's referral to get the exam, along with abdominal and ultrasound results. If this is for a follow-up CT, you can bring your previous scans.
Private clinics are more than happy to work and turn a profit (at least where Quest Diagnostics is concerned 😉), but they're hamstrung by our beloved Medicare, which sets a monthly cap on coverage. Unfortunately, that budget gets exhausted far too quickly, leaving the equipment sitting idle unless you're willing to pay out of pocket. So, those long wait times at private facilities aren't a matter of arrogance—it's simply the reality of the system...🤷
In the US, it’s pretty standard to wait a month for a CT scan if you're relying on a referral.👎
Tell me, would you be willing to go on the record with this for the press (even anonymously)?
A journalist reached out to me regarding the nightmare of scheduling a CT scan. It all started because my husband needs follow-up screenings after his last round of chemo (October 26th): a chest CT, an echocardiogram, and a PET scan. So far, the one thing we haven't been able to nail down is the CT. I mentioned this on my blog, which is how she found me.
At Mayo Clinic, their CT scanner was broken and they weren't even taking orders at the start of the month (I have no idea if it’s fixed yet; I'll try calling them tomorrow, though they didn't pick up today).
I’ve tried calling General Hospital, Holy Spirit, and Vineyard—and all of them are already booking into December for appointments next year.
I also called Quest Diagnostics and Diagnostic 2000. They are private facilities, but they do accept insurance referrals. There's a predictable pattern there: if you pay out of pocket, you can get seen almost immediately. If we rely on our insurance, Quest Diagnostics has an opening on December 17th, and as for Diagnostic 2000, I have to call back on Monday because they simply couldn't give me an answer right now😕.
The journalist mentioned she wants to write a piece on this, so I wanted to ask: are you or your loved ones, friends, or anyone you know running into these same hurdles when trying to book such critical tests?
How long are you typically waiting for something like a CT?
Angela Wright said:So, this exhausting day is finally over. I’ve sat down to gather my thoughts and write a bit before trying to get some sleep, and I just want to thank you all once more for the kind words. Some of your posts really touched me deeply.
The morning kicked off at 5:30 AM with my father panicking because Mom had choked on her cream of wheat and stopped breathing. I spent a good fifteen minutes performing CPR; she managed two gasping breaths, vomited once, and then lost her pulse entirely. I was massaging her heart while we waited for the paramedics, who arrived almost immediately. They administered adrenaline, cleared her airways, tried everything... but nothing worked. Even though I knew the end was near, the sheer speed and violence of it all left me reeling. Because things had been moving so slowly lately, I somehow expected her to just fade away gradually one day, simply drifting off. Perhaps this was better for everyone involved. It was swift, almost instantaneous, and she drew her last breath right in my arms. I had been so terrified she wouldn't go peacefully in her sleep; I desperately wanted to be there. I was also struck by my own numbness during the resuscitation attempt—just staring at her blue lips and dilated pupils... a sense of total dissociation, as if I were watching a movie rather than living it. That numbness has lingered throughout the entire day. I’ve found myself only breaking down when dear friends visit and reminisce about the woman she was before she fell ill. Maybe the numbness exists because I mourned her long ago. Even while she was still alive, I would suffer these terrible waves of grief, realizing how much I missed her and how impossible it had become to talk to her, to ask her questions, or to tell her things and actually hear a response. I suppose the hardest part lies ahead: being alone in this house and feeling the true weight of the void. The most difficult transition will likely be shifting from a "normal routine" that, for the last two years, revolved almost entirely around her, to a new reality where I have to focus on myself. As always, I am placing my trust in God's providence to light my path again.
And one final thing: I found out today that a close friend of mine—someone who survived Hodgins and was told she’d never be able to conceive—is pregnant again. She is my mother's godmother, and I can't help but feel as though my mother traded her life for this new beginning. Life is beautiful and strange.
You wrote that so beautifully... When things get heavy, remember we are here for you...
Angela Wright said:My mom passed away peacefully this morning. I just wanted to thank everyone here for being such a pillar of support during this incredibly difficult chapter of my life. I love you all. May God bless you in your own struggles. Just keep pushing forward.
Darling, I am so deeply sorry. Truly, endlessly sorry. Sending you so much strength and a huge hug right now...
Angela Wright said:We really need to refresh this page. Come on, everyone, jump in. We need all the help we can get for those dealing with Sickness, and for anyone who suddenly finds themselves backed into a corner—a situation I think most of us here know all too well. I promised slyseal28 I’d lend a hand, but now that I'm back home, things have gotten so busy that I haven't been able to find the momentum to actually get moving.😢
There’s still plenty of time to get involved, so let’s just take it one step at a time. 🙂
Before we go making any major announcements on the site, I’d prefer to flesh out some of the articles where they feel thin. I also want to try reaching out to doctors, pharmacists, and other professionals to bolster our info.
And honestly, this forum needs to breathe again. Please, reach out with your advice, your critiques, or even just more content...
In my previous posts, I mentioned that I’ve been working on a website dedicated to malignant diseases. Well, for the most part, the site is finished, and I would truly appreciate it if you could take a look and share your thoughts. Regarding the content—I haven't covered every single condition yet, as I'm still hunting down enough reliable material. If anyone feels inclined to lend their expertise through advice or constructive criticism, please don't hesitate to reach out.
Elizabeth Gonzalez55 said:A word of advice to everyone: if you’ve been diagnosed with MM or even just suspect it might be brewing, go get that screening done. Soon, they'll be offering it at the Mayo Clinic via a standard referral, but honestly, even if you have to pay out of pocket, every single cent spent on this test is worth it.
I can't agree more... we actually had a PET/CT done over in Graz, and we're heading back on December 19th—though this time it's just for a PET scan at the local hospital.
We’ve actually been quite fortunate with our doctors from the very start. We never felt like we were hitting a brick wall. From the initial stages before surgery at Mount Sinai, right through to seeing our attending physician at Mayo Clinic.
Where the American healthcare system really falls short, in my view, is the lack of available beds and necessary equipment. We definitely felt those delays when waiting for chemotherapy appointments. And radiation... too. That’s an issue with the systemic infrastructure, not the physicians themselves—at least, that's how I see it.
First off, I just wanted to send my greetings to everyone here. I’ve been following this thread constantly, and I know I've read so many heartbreaking stories. My heart truly goes out to all of you who are struggling right now, and to your families as well...
My story, however, has a happy ending. My husband has finally reached the finish line of his chemotherapy! After six cycles of Adriamycin and Ifosfamide, 30 radiation sessions, and another four cycles of the DTIC protocol—we have officially completed treatment. A successful conclusion! Our oncologist looked at us with such bright, smiling eyes and remarked that if he were in our shoes, he’d be finished with therapy by now too. We just caught each other's gaze and laughed, feeling this massive wave of relief. Now, we face a round of detailed follow-ups: a cardiac ultrasound, a CT scan in a month, and a PET scan in mid-December. If the PET scan at Mayo Clinic shows anything suspicious or unclear, we would head over to Germany for a PET/CT. We’ve already scheduled the appointment at Mayo Clinic for December 19th. Our only remaining task is figuring out where to get the CT done, since they aren't operating at Mayo Clinic right now (and who knows when they'll be back up and running...).
Anyway, I wanted to share this bit of good news with you all, just as I’ve shared the heavy, painful details along the way... I am sending so much love, luck, and HEALTH to every single one of you, your families, and your friends.
I’ll still be reading through these posts; you all were such a pillar of support for me during my darkest moments. 🙂
Angela Wright said:Those enzyme levels are elevated because the liver is essentially being taxed by the chemotherapy. It’s a toxin that the liver is forced to filter out. If you think his numbers look high, just take a look at my mother's most recent labs for comparison: ALP 184 (64-153) AST 159 (8-30) ALT 319 (10-36) GGT 2795 (9-35)
I don't see any connection to hepatitis here; it's strictly the chemo at work. My mom has similar readings because she's on Phenobarbital, which hits the liver hard, and the dexamethasone plays a massive role in that too.
That’s great, thanks for letting me know. I was starting to spiral a little bit there. Even that specialist at the Mayo Clinic spooked me with those markers. Though, I suppose it might not be such a bad thing if they react immediately and run checks. Thanks again.😘
My husband is currently on his third cycle of the DTIC protocol. They pulled some blood work today, and unfortunately, his liver enzymes are looking a bit rougher than before.
Back on Friday, his IBM levels were at 62—with the upper limit being 38—and his ALT was sitting at 51, just barely over the 48 threshold. It didn't seem like a cause for panic at the time.
But today, that IBM number jumped up to 126. They’ve run some hepatitis markers now, so we’re stuck in this agonizing waiting game. He had surgery last year and went through several transfusions involving blood and plasma, among other things.
Is it actually possible that after fighting cancer, he's now facing a potential hepatitis diagnosis? We're essentially in limbo right now. I'll update everyone once the results come in. Hang in there.
Larry Vaughn53 said:Look, I think people are getting some basic concepts mixed up here. We're talking about PET/CT. It’s essentially two devices integrated into one unit that shows you both the location of a process and its cellular function and morphology. It operates on the same principles as PET and CT, just simultaneously. You end up with fused images afterward. A machine like that isn't available in the US yet, but they should be starting operations at the Mayo Clinic this November.
casualotter83 said:So, I recently found out there’s this company operating out of Washington, D.C. that helps set up PET CT scans over in Budapest. We actually stumbled onto them through a medical journal. My uncle used them, and honestly, they’re pretty solid. They handle all the paperwork in English, help coordinate transport, organization... the whole nine yards. If Medicare doesn't cover the full reimbursement, the cost is around 1000 EUR—which is actually 500 less than what you'd pay in Austria. Web address is http://www.dmgv.eu/petct/petct.html
A PET/CT scan in Denver runs about $1,058.70 (and you get the CD, the images, and the report in both English and German).
Linda Campbell said:She passed away tonight at 10:30 p.m. She fought with everything she had left in her. We were by her side all day today—kissing her, holding her hands, kissing her face. She knew she wasn't alone. Don't ever give up, everyone. The two of us sat down last night and worked out all the details; we were actually supposed to start the new treatment this morning. She was so ready for it. I feel an incredible sense of peace right now because she finally found hers. Personally, I can't look back with any regrets; I fought until the very end and tried absolutely everything within my power. I was at the hospital with her two or three times every single day. I was always there to cheer her up, to lift her spirits... I even made sure she had the nicest pajamas in the entire hospital and the most beautiful wig, which I picked out myself. She was an extraordinary woman throughout her whole life, and that didn't change even on her final day. It happens to be the feast day of Saint Mother Teresa, and honestly, she reminded me so much of her. My thoughts are with you all. Don't be afraid.
Please accept my deepest, most sincere condolences.
I truly admire the calm and courage you've shown through all of this.
...just wanted to drop in, say hello, and wish you all the very best...
...and while I have your attention, a quick reminder that the Relay For Life is coming up soon—it’s scheduled for September 16th, 2007, over at Central Park starting at 4:00 PM...
also, if you're looking to pick up some sponsored donations for the Relay For Life, those will be available on September 8th (between 11:00 AM and 2:00 PM) right outside Charlie's cafe in Washington, D.C....
We'll be heading out to the run ourselves, so perhaps we might actually cross paths there 🙂
Olivia Ramos66 said:It’s a common enough occurrence in this industry—products being touted as miracle cures when, in reality, they're being massively overhyped. I honestly think we're seeing one of those classic cases here. While there is some discussion surrounding AHCC and its potential to make a significant impact, we really need to take these lofty claims with a grain of salt. I suppose we should keep this conversation going. There isn't much else to be said on the matter yet, but I find myself waiting for more data to surface before we draw any definitive conclusions. It feels like we're just scratching the surface of what's actually happening here. The quality of life for patients navigating the aftermath of hepatocellular carcinoma... that’s the real crux of it. And honestly? That’s all there is to say. It's frustratingly clear that we haven't seen any other truly significant studies regarding how effective AHCC actually is when it comes to treating carcinoma. In Japan, they’ve actually recognized lentinan and schizophyllan as adjuvant therapies for cancer. They have to be administered intravenously, though, because the body has such a hard time absorbing them through the digestive tract. On the other hand, Coriolus versicolor has shown some pretty remarkable success when taken orally—even outperforming AHCC in certain contexts. Take a look at the thread regarding noni's and lung cancer—I’ve added some of my own thoughts there, along with a few links that might be worth your time. It’s funny how little anyone actually talks about noni's benefits around here. It feels like such an overlooked topic.😬
I wasn't exactly out there singing the praises of this product's efficiency. I didn't claim it was some kind of miracle cure. If you're looking for proof, there's some statistical data listed right on the website. I was browsing through some information on Immunomax recently—it’s one of those sites that really makes you stop and think about how much we actually know about our own biology. It covers quite a bit regarding immune support and cellular health, which is something I find myself contemplating more often as the years pile up. It’s interesting, isn't it? We spend so much of our lives trying to outrun fatigue or just generally feeling "off," yet we rarely look into the foundational stuff like how certain supplements might interact with our natural defenses. The site dives into the science behind things like AHCC and its relationship with Coriolus, which is always a fascinating rabbit hole to fall down if you have the patience for it. I remember reading a similar discussion where Donna Harris77 mentioned how skeptical they were about these types of specialized formulas, and honestly, I get it. In an era where everyone is selling a miracle cure, you have to be incredibly discerning. You can't just take everything at face value. But then again, when you start looking at the actual studies cited by organizations like the American Medical Association, the conversation shifts from mere speculation to something a bit more grounded. It’s a lot to digest. There's a fine line between being proactive about your health and falling for the latest wellness fad, but there's also a middle ground where legitimate nutritional science lives. I'm still weighing my options on whether to incorporate more of this into my routine, but I suppose that's the eternal struggle, isn't it? Staying informed without becoming overwhelmed by the sheer volume of data out there. I didn't just pull this out of thin air!