To everyone who knew, loved, or respected Dina in any way, please accept my deepest condolences. Even though I only ever knew her here on this forum, she was someone who gave me strength during those moments of absolute despair when I was trying to support my sick husband. None of us here have it easy. Every single day, we are fighting a million different battles and clinging to tiny hopes—just to make it to tomorrow, to see Easter, to reach Christmas... I am truly shaken by Dina's passing. Rest in peace, you brave, sweet girl.
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Susan Ruiz76 › Posts
Posts by Susan Ruiz76
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steelfalcon15 said:Basically, this movie exposes the absolute bottom-feeders running insurance companies. I’m convinced the exact same type of scum is pulling the strings at big pharma, too. I still can't wrap my head around how a single medication can cost HALF A MILLION DOLLARS!!! Are you seriously expected to sell your house just to stay alive?!?! 😲 😲 😲 It's sickening.
Anyway, arguing about this is a waste of breath. Let's focus on what actually matters: how to recover quickly or how to support those close to us. I have an idea for helping people that's a bit complicated to explain here. I'm not going to spell it out on a public forum, Angela Wright, slyseal28—if you two are interested, send me a DM...
Sutent doesn't cost half a million dollars, it costs $16 (including tax and pharmacy markup)—but even so, it's outrageously expensive considering there's zero benefit from a single box.
slyjackal38 said:Here is a suggestion based on what we went through. My uncle completed 9 cycles of chemotherapy during his lifetime—starting with monotherapy and moving into combination treatments.
Throughout that entire period, he took AHCC capsules and natural propolis.
His blood work never drifted outside the normal range, not even the leukocyte counts. If anyone else has had similar experiences, please share them so others can consider this approach.
Immunomax costs $60 per box, but for patients facing severe cases, one box lasts just one day. It comes with 20 capsules; at a dose of 6 capsules split into three daily doses, you go through 18 pieces. For natural propolis, aim for at least 2x2 daily.
The shiitake and maitake mushrooms found in AHCC are proven to reduce or slow the growth of metastases by stimulating the production of T-cells and leukocytes.
Natural propolis acts as a potent antioxidant and an excellent immune stimulant.
Anyway, think about it.
Regards and good luck; keep us posted on how things develop.
My husband finished 5 cycles of Cisplatin + Vepezid back in July/August of last year, and about fifteen days ago, he started his second cycle of Taxol. His blood work has also remained remarkably strong—I was reviewing his old lab results tonight (we’re prepping for a follow-up next week)—and his WBC, platelets, and immunity factors have stayed consistently within the normal limits. He didn't take Immunomax (it was too expensive for us since we were paying for Tarceva), but he never missed a single day of taking Noni (at least 1 dcl daily) and beta Glucan 1,3 D (two doses a day). It seems that combo "clicked" for him. He spent a lot of time outdoors walking, and we made sure he ate plenty of fruits and vegetables.
Of course, he still ate bacon and onions because that’s what he loves. We didn't deprive him of anything he enjoyed before the diagnosis, so his weight has remained stable throughout. I suspect a lot of this comes down to the individual.
Best wishes to everyone!🙂
Lisa White54 said:My husband went for a PET scan at the Medkol Clinic located within Vinogradska Hospital, all covered by Medicare. He didn't pay a dime. Personally, I can't say how reliable the results were, because the report didn't even address the primary illness he was being scanned for; instead, they focused entirely on his vocal cords—specifically, some nodules. The doctor from Jordan said this was likely just damage to the vocal cords caused by the bronchoscopy. So, we learned absolutely nothing about the actual disease from the PET scan.
Next week, my husband has a follow-up appointment in Jordan. We'll see what the doctor has to say then. Since he’s been dealing with hip and pelvic pain, he had an X-ray. The X-ray report suggests he needs a bone scan. I actually suggested a bone scan to his doctor a while ago because of the bone pain, but he wouldn't listen. He thinks it's all psychological!! But it's physical pain, which only gets slightly better with a Durogestic 50 patch combined with Tramal or Ibuprofen... We'll see what he says now.
Lisa, don't let them brush you off regarding the bone scan. Start looking right now for the nearest facility where you can get it done, because the wait times are incredibly long. In Indianapolis, we were met with a lot of understanding, and once the oncologist recommended the test, 👍 we managed to get it done within eight days. If you explain your husband's diagnosis clearly and make a sincere plea, they usually help you out—especially if you mention he needs it for a follow-up next week. Good luck!🙂
neonpanther12 said:Hi everyone, I'm wondering what criteria determine who gets Sutent on prescription. Also, why can't people who actually need it get an exam on modern equipment at the local university hospital instead of having to pay out of pocket $4000? Even those who can afford it face long wait times. A doctor is the one who writes the referral if they deem it necessary, and of course, it should be available to anyone fighting this disease so they can receive effective treatment.
Dear neonpanther12, I honestly haven't a clue—except for what personally affected me and what I took the time to research thoroughly. My husband was on Tarcev—another incredibly expensive medication—which costs about $6.75 (cheaper than Sutent), and we kept buying it until the Secretary of Health announced that everyone who needs these high-cost drugs is entitled to them. Well, we then presented the hospital director with the findings from an oncology board meeting where it stated verbatim, "...continue with Tarcev..." Essentially, a panel of highly paid specialists decided that continuing treatment with Tarcev was necessary, and our hospital board had no choice. They had zero grounds to deny us, and within 24 hours, the medication was waiting for us at the hospital pharmacy. Of course, we provided all the required documentation and filled out every single form—but none of that is the hard part. It’s much harder to count the massive amounts of money we spent over such a long period.😠
So, what should you and your family do? Ask your doctor to provide a written opinion stating that Sutent is the recommended course of treatment. If that recommendation is positive, no one can turn you down.
Secondly—when you mention the hospital and "expensive equipment," you're likely referring to a PET scan. I know plenty of people who received that scan through their insurance, and it was genuinely necessary for them. They didn't have to wait long, either. We also asked our oncologist if there was any point in getting that scan ourselves (we would have paid for it); however, he told us—and we trust his judgment—that in my husband's case, it wouldn't make sense. He has a clearly diagnosed primary tumor being treated according to standard medical protocols that yield the best results. If you read some of the posts on this forum, you'll see that PET scan results aren't always the clearest nor do they always provide the most useful data.
Best of luck!🙂
casualrider21 said:Does anyone happen to have experience using those KANCIST drops?
Hey there.
My husband went through three bottles. We actually drove out to St. Louis just to meet the man who makes them in person. He seemed decent enough—didn't make any wild promises. His take was pretty blunt: some people respond, some don't. According to him, you should see results after about three bottles, so he isn't trying to trap you into buying them forever. He even gave us one of those three bottles for free.
Unfortunately, the lung scans (my husband has small cell lung cancer) showed no real movement, so we stopped the drops. However, we kept up with our usual regimen: Beta Glucan 1,3 D (he hasn't missed a dose in 15 months), Noni, beet juice, and various vitamins from time to time. For the most part, his blood work has remained excellent. That said, we've learned firsthand that blood counts aren't always the ultimate indicator of how the body is handling a primary disease. 😢 Still, we're just glad that at least some things are holding steady. 🙂
stormyjackal46 said:Everyone, please check out this link
http://www.facebook.com/profile.php?...id=36247222933
And if you have any way to help this three-year-old boy, please do. Thank you.
I agree. This initiative is excellent—the group already has over 50,000 members.🙂
Dear Ed, I truly and sincerely empathize with you.
Kenneth Mitchell2 said:Hello, everyone...
Yesterday, I was hit with some devastating news: my husband has been diagnosed with lung cancer.
I don't know much about the specific location or the type of carcinoma yet—or rather, I wasn't in a state to
really process what the doctor was saying.
About two and a half years ago, he suffered a heart attack, after which, following nearly 40 years of smoking, he finally quit.
He needs three bypasses...
The surgery isn't scheduled until now (December 17th, 2008), but while performing all the tests and preparations, they noticed
something on his lungs. So, he's been in the hospital for about 7 or 8 days, waiting for results that I honestly hoped weren't the worst case scenario...
Yesterday, he agreed to chemotherapy immediately and received his first round; today is the second, tomorrow the third,
and I am hoping, if God wills it, that we can head home right away.🙂
From what I gather, the situation is extremely serious, but it isn't necessarily the end of the road just yet.
The doctor mentioned there's a possibility things could get more complicated
because his heart and vascular system will struggle to handle the chemo in his current condition,
so the real question is how many rounds he can actually tolerate...
Since I don't have much free time and haven't had a chance to research everything—especially now with the added stress of moving out of our current house (which has already been sold)—I would ask anyone with concrete information
to please post here.
...I tried to read through this thread, but I simply don't have the time right now.
I managed to get through about ten pages at the beginning and a few at the end, but that's about it...
Thank you all in advance.
Look, instead of spending your energy trying to write me angry private messages, you should have used that time to read the useful information regarding the very thing that is currently tearing your life apart. You know, when my husband was diagnosed with lung cancer, everything else just stopped—there is no schedule or routine anymore; his health becomes the only priority.
It’s impossible to give you any real answers without even an initial diagnosis. My husband has small cell carcinoma (he was also a long-time smoker)—there are so many different types and countless different treatment approaches...
I won't delete that post like you asked, though—fine, consider this my public apology if it made you uncomfortable. 🙏, I realize things are hard for you, but you need to take initiative. Go to the hospital, sit in the doctor's office, and wait until they explain everything to you. For starters. We're even.🙂
darkraven10 said:My apologies for the delay in responding; with everything being such a mess lately, I honestly can't tell if I even replied. Then again, it would have taken some time for you to get an answer anyway. While I was skeptical about the efficacy of those drops (and herbal remedies in general), my aunt claims she feels significantly better—she’s feeling improved, even if she still hits those rough patches. Whether those drops actually did the work or if it's just the placebo effect is anyone's guess, but if she’s feeling better, then not a single cent spent on them was wasted.
Furthermore, the tumor shrank from 1.5cm down to 0.5cm, though the latest marker results are confusing: CEA is at 21, while CA 19-9 is only at 2. We're waiting on the oncologist to explain things. Even though it should just be a quick five-minute glance at the labs and a brief explanation, we end up waiting up to 15 days for it. 😢
Yes, quite a bit of time has passed. We ordered the drops as well, and my husband went through three bottles. They certainly didn't hurt him, but we decided not to order a fourth because the tumor didn't shrink—something else happened instead. After he stopped taking them, his lymphocyte count dropped to 8.6, so now we aren't entirely sure if we should have kept ordering them. You know how it is; people will grab at any straw, and as you noted, you shouldn't regret spending a dime if you truly believe something is helping.
Look, Kenneth Mitchell2—if you can't find the time to actually listen to the doctor or ask them to clarify things (especially when your father is already undergoing chemo!!!), let alone bother reading some actual medical literature online, then there’s really no point in us typing away here or trying to help. The real question is whether you'll even have time for that. It's pathetic.
Extremely urgent. I understand lymphocytes are tied to the immune system, but when my husband arrived at the hospital this past Monday, his entire blood panel was haywire—low red blood cells, high white blood cell count, low hemoglobin, elevated CRP, and so on. Today, almost everything is slowly normalizing, except for his lymphocytes, which have dropped to 8.6. How is it possible for everything else to stabilize while those specific numbers plummet? For context, we are dealing with a patient battling a massive (gross) mediastinal carcinoma. We’ve managed to keep it the same size for over a year now, and so far, there’s been no sign of metastasis in the bones or abdominal organs (all confirmed). Aside from Beta-glucan 1,3-D and Noni, what should we be looking at to support his immunity? Best regards,
Dear quietpilot87, I am truly sorry to hear about the passing of your mother. Please know that her love will stay with you for the rest of your life.
Angela Wright;17046245 said:@granitebadger21
On top of that, our Secretary of Health recently claimed that no patient should be stuck waiting more than a week for their medication.
In our case, we actually received a drug that wasn't even on the standard formulary from the hospital board within 24 hours—all thanks to a direct mandate from the Secretary sent straight to the hospital directors.
Dear granitebadger21, I’m not sure where you’re based, but Oakland and New York City aren't the only places in America. We were at the oncologist yesterday, and she recommended radiation therapy—I won't bore you with all the medical specifics—but we took a few days to process everything before deciding. While we were there, we asked about the wait times. Her response? "If you're coming in as an outpatient, there is absolutely no wait." Wow. That flies in the face of everything I read online. It’s actually tempting to just go through with the radiation simply because there is no waiting. For context, this was at the Mayo Clinic in Indianapolis—the oncology department is small, but the people there are incredible. You should try calling them; they might be able to squeeze you in. Honestly, paying for a hotel is cheaper than sitting around waiting. When dealing with certain illnesses, you can't afford to play games. Besides, you're welcome to crash at my place—I’m near 31 miles the OS—and who knows, maybe another member here will offer you a place to stay during treatment. That’s what this forum is for, in my opinion: real, unfiltered help. Giving unsolicited advice doesn't get anyone through this.
Kyle Cruz8 said:I'm also interested in hearing about experiences with Kancist drops. My father was diagnosed with sinus carcinoma five months ago, and things haven't improved much even after radiation therapy. It feels like the doctors have essentially given up on him. I’m looking for any feedback regarding these drops or if anyone here has actually ordered them. I'm planning to do so very soon. thanks
We ended up buying them. My husband has been taking them for about 20 days now, though they say you don't really see results until the 45-day mark (after three bottles). Honestly, one bottle costs $233, but we've already poured so much money into Beta Glucan 1,3 D and Noni—which he takes continuously for a full year—that this didn't feel like too much of a gamble for a trial run. It can't hurt; the practitioner has an official office and provides receipts for everything, so it's all completely legitimate.
Immno Max for cancer therapy costs about $1.75 per month—now that is truly out of our reach, and we simply can't afford it anymore.
As for whether his blood work is actually improving because of the combination of Beta Glucan, Noni, beet juice, blackberry wine, and so on—we honestly have no clue. We just don't dare stop any of it.
Carl Ortiz6 said:I’m asking anyone currently undergoing treatment, or anyone with family members being treated, with Tarcev to please reach out. I want to hear from those who managed to get it through a hospital or those who are paying for it out of pocket.
Thanks, and best to everyone.
Stay brave.
I sent you a PM—check it.
Rose, what’s the latest on your end? Have you guys had the PET scan done yet, and how is your husband holding up? Is he starting any new treatment? I really hope everything is going okay.
darkraven10 said:My apologies if this has already been covered on the forum, but I am looking for a phone number or any kind of contact information to purchase Kancist drops from Mark Rukavina in Sl. Broda. I’ve tried searching via Google and using the forum's search function, but I can't find a number anywhere.
If anyone has managed to get their hands on those drops, I would be extremely grateful for any information you could share.
Thanks.
0981740173 - that’s Mark Rukavina’s number from the Ship. I haven't called him myself; I've had the number for a few months now, but I keep hesitating. My husband isn't exactly thrilled about this kind of thing either, and I wouldn't want to go against his wishes. Do you know anything about him—could you give me some details? Also, what kind of illness are you looking for those drops for? I'm curious because, besides reading that article (I think it was in the Free Press), I've heard some personal stories too.
slyseal28 said:"The board at the Social Security Administration has decided to inform its policyholders about certain health insurance rights through paid advertisements in newspapers! – Dr. Venceslav Bergman, the director of the Social Security Administration, confirmed this to us. In the first ad, the SSA will inform patients about how to get approval for drugs from the fund for particularly expensive medications; the second will cover the procedure for approving drugs that aren't on the SSA list; and the third will explain which patients can access treatment abroad and how.
– We’ll publish the first paid ad in about ten days, followed by two more spaced out by two weeks, each taking up a quarter of a newspaper page – says Bergman, explaining why he and his senior staff decided on this course of action. – Our good intention to inform the public on how to exercise rights regarding certain medications ended in a 'messy' misunderstanding back in July—specifically, the infamous 'Bublé case'—which was essentially the peak of our frustration with how certain media outlets interpret patient rights. I'm not saying our administration isn't always fast, just like everywhere else in the world, but I assure you we do everything correctly and according to the law. Naturally, people aren't happy when they receive a negative response, but we have to look after the money in the healthcare system; we make sure that with the funds we have, all patients, without exception, receive the service or medication they need. It turns out that everyone working at the SSA is seen as heartless, always the default villains, even though there have been cases where hospital requests for medications never even reached the SSA. These ads will be paid for with the money contributed by health insurance payers, but Dr. Bergman sees nothing wrong with that and claims he isn't afraid of the public reaction, which will undoubtedly be divided. – About two thousand dollars per ad isn't a huge financial investment for accurate information that, I believe, will reach half of the American population – states Dr. Bergman. He points to the example of interferons, which, since being added to the list of especially expensive drugs, are being recommended to patients as life-saving medications without any specific criteria. Yet, interferon merely boosts the body's immune system; it doesn't cure the disease. Because doctors prescribe them outside of professional guidelines, interferon consumption is rising by 50 to 70 percent annually. And when a doctor refuses to indicate interferon outside of those guidelines, they tell the patient they can't get the drug because the SSA won't provide it. But the SSA didn't invent the professional guidelines; the medical profession did.
When it comes to life-critical drugs, such as cytostatics or medications for rare diseases, a patient will receive the drug within ten days, says Bergman, and he maintains that, following a recent agreement with the Secretary of Health, Milinovic, patients won't face denials for medications. This is because, he explains, it doesn't involve the particularly expensive drugs from the SSA fund. With confirmation from a hospital board, patients can also receive drugs outside of the guidelines, as well as drugs not on the SSA list, provided they are paid for out of the hospital budget. "
article taken from The Washington Post, 05.09.2008
I honestly don't know if I "missed" this article (the SSA notice) or if it hasn't even come out yet🤷? It really "gets under my skin" wondering what they'll write. The Secretary promised all sorts of things, but unfortunately, the reality is waaaaaaaaay, waaaaaaaay different. Even though all hospital directors received letters from the SSA (or so they claim at the FDA) warning them that hospital boards must resolve patient requests for drugs not yet on the approved list—if it's intended to save a patient's life and is medically justified—they are acting like they have no clue. They are just playing dumb. And where does that leave us? Right back where we started. They just pass the buck from one hospital to another. Is it financially sound for one regional medical center to shoulder the entire burden of all oncological patients in their region, or should these drugs be approved using the budgets of municipal hospitals (medical centers)? That way, the burden of expensive drugs would be distributed more fairly, based on where the patient actually lives.