I just wanted to give you all an update on the current medication situation: insurance approvals are actually coming through within a week or two—both from the hospital and the Social Security Administration. However, there's a new catch: the hospital pharmacies are completely out of stock.
For instance, we were scheduled to come in today for premedication (prep for chemo) and receive the actual therapy tomorrow. Our regimen consists of two types of chemotherapy agents (Taxotere and Gemzar). I called up the oncology department on Monday, and they told me the pharmacy doesn't have any Gemzar in stock, though it’s supposedly arriving by Friday. So, the plan is to push the therapy to Friday. I'll be calling them again today to see if that arrangement still holds. But honestly, if that drug doesn't show up on Friday, we’re going to be right back here arguing about it!
I’ve been hearing from other people facing this exact same mess: they get their approvals, but those papers might as well be useless because the hospital pharmacy has nothing to dispense. Out of sheer fear, most of these people aren't willing to speak up publicly about it.
What I'm trying to say is this: the core issue hasn't been solved; they've just shifted the burden onto the hospitals.
Just wanted to give you all an update on what we've decided: here is our current strategy:
-We are waiting on the scintigraphy results because there is a chance the sarcoma has reached the bone. If it has—we’ll look into targeted radiation. If it hasn't, then the pain is definitely coming from the tumor pressing against the nerves.
-Surgery is being planned for 3 or 4 weeks from now at Mercury with Professor Kocman. He’s going to attempt to remove this abdominal sarcoma located just below the navel. He did mention there's a possibility this mass is tethered to the primary one near the heart. Hopefully, they can find a way to dissect them apart...
-We are heading out today to schedule the PET/CT scan; luckily, the Social Security Administration is covering that part of the cost.
-We still need to book an MRI for the chest and abdomen, but we're going to have to pay out of pocket for that. Some 🙂 pedantic... department head won't authorize both the PET/CT and the MRI at the same time.
-We’ve also agreed to seek a second opinion regarding new medication options—specifically through the Dan Farber Sarcoma Center. We need to send over all the medical records along with a tissue sample from the sarcoma, which requires us to make a trip out to Salad. Based on that sample, they might be able to identify specific receptors that could respond to the new targeted drugs currently in their phase 2 and 3 clinical trials.
Anyway, we have our work cut out for us. The main priority right now is just hanging in there and finding a way to manage the pain, which is absolutely exhausting him at the moment.
I just want to say—we aren't giving up. Even though the road is brutal, we have to keep pushing. As long as there is even a sliver of an option left, we have to take it.
Grace Fowler said:Fight on, ladies!!! I am praying to God for both you and the Pigeon...!!!! Please, let us know how things are going...
Damn it all!!! Please, just grit your teeth. If you’ve managed to be this brave and successful up until now, I am absolutely CERTAIN you can dig even deeper and push harder.
Thanks, Grace...
I find myself thinking about all of you here... I don't always post or reply, mostly because there are times when I simply don't know what to say. These fears and dilemmas are universal to all of us... Grace, your strength and your faith bolster me every single time I read your words. We truly cannot afford to give up. Not ever. We have to try to squeeze every ounce of strength out of ourselves—from our toes to our heads—and just keep pushing.
That is where we are... the pain is terrifying... we are currently waiting on the results from the bone scan. She is scheduled for her seventh round of chemo this week. It was supposed to happen on Wednesday, but we're facing a shortage of Gemzar (even though the insurance approval came through), so it will likely be pushed to Friday...
Because of the pain, the Pigeon is having a hard time sleeping and sitting, so he is utterly exhausted, and there are moments when he starts to lose heart. Of course, I won't let him buckle under the pressure... but god, it is incredibly difficult. That realization—that you can't actually fix it for them—it's soul-crushing.
We are heading to see our specialist today to see if we can get some stronger meds to manage the pain. I'll check back in later.
My thoughts are with everyone. No surrendering.
Just a reminder: if anyone is having issues with their doctor, reach out to the association; we will organize a second opinion. Damn it, that applies to you especially.
Nancy Thomas18 said: I truly appreciate all the support here... but honestly, what am I supposed to do when the oncologist refuses to provide the recommendation I need unless I pay out of pocket? $3000 Where on earth would I get that kind of money? To hell with this bureaucracy.
I suggest you make copies of all your medical records and send them over to our coalition of health associations; we'll try to help you secure a second opinion. You might have mentioned this already, but I seem to have forgotten—which hospital are you being treated at?
Lisa White54 said:I feel so incredibly foolish for thinking we had finally won, especially since I’ve spent so much time immersed in this disease and thought I understood the mechanics of it all. But I suppose that’s just human nature—we desperately want to believe the good news. And honestly, I had every reason to be optimistic. My husband truly was doing better. On Wednesday, he ended up back at the Jordan clinic. The cancer has returned. It’s surfaced in the exact same spot as it did four years ago. They have him scheduled for a bronchoscopy this Monday, so we’ll know more then. Today, they’re starting him on diuretics because of the pleural effusion. It’s devastating. It has completely knocked the wind out of me. But this isn't anything like what we went through four years ago. Not even close. Physically and mentally, my husband just isn't where he was back then. I have no idea how he’s going to take the news, since they haven't told him yet.
Rose, I am so incredibly sorry... Please, don't lose heart. Right now, the most vital thing is for you to find the strength and courage to pull through this.
First off, our association welcomes the recent decisions made by the Board of Directors of CMS, which aim to shorten the procurement process for expensive medications to more reasonable timeframes. However, there is a significant catch: the decrees state that hospitals will have to shoulder the costs for any drugs not currently on the CMS list. Given that we all know not every hospital is sitting on the same level of financial stability—and that this could leave certain patients footing the bill for high-cost treatments themselves—it’s my view that the fundamental goals of our petition haven't actually been met yet.
Furthermore, we need to address the bottleneck caused by excessive wait times for diagnostic testing; without those results, starting any meaningful treatment is effectively impossible. The mission of our organization, "for a new day," remains steadfast: everyone deserves an equal shot at accessing medication, regardless of where they live in America, and the same medical criteria should apply to every single patient across the country. Consequently, working alongside the coalition of health associations, we are pushing forward with our petition to ensure that top-tier treatment for chronic, severe, and rare diseases—as recommended by specialist physicians—is covered by CMS. You can download the necessary petition forms directly from our association's website.
For those of you who still have old versions of the petition forms lying around, please feel free to send them in anyway; those signatures are still valid and count toward our cause.
Together, we will replace fear with courage, loneliness with community, despair with hope, and anger with joy.
I wanted to take a moment to introduce you all to the Relay For Life, a global humanitarian movement held annually to honor the legacy of Terry Fox, a young man who faced sarcoma with incredible courage. In an attempt to raise enough funds to combat this relentless disease, he embarked on a grueling trek across Canada that became known as the Marathon of Hope. While he managed to traverse half of the country, his journey was tragically cut short when the illness returned. He passed away at just 22 years old. To honor his memory, his family chose to turn his struggle into a lasting tradition, launching a fundraising movement that has since become a staple of Canadian culture. Today, the Relay For Life takes place every September across Canada and in 55 other nations worldwide.
The Relay For Life 2008 is scheduled for September 28, 2008, at Lake Tahoe, starting with arrivals at 2:00 PM and the race itself kicking off at 4:00 PM. This year’s event is being organized by MPG LLC, the Embassy of Canada, the American Cancer Society, Chicago Holding, and The Plaza Hotel. With the support of our local advocacy group, "For a New Day"—comprised of patients, families, and friends—we are calling on businesses and citizens alike to get involved. You can show your support by running, walking, cycling, skating, making a donation before the event, or simply volunteering your time on the day of the action.
The fundamental goal here is to raise money for cancer research right here in America. All donations from this year will be directed to the MD Anderson Cancer Center and the Medils Research Center. Last year, we saw a record-breaking amount of $300 raised, which was used to purchase essential medical equipment for children battling cancer at the Children's Hospital of Philadelphia in Shalat.
If I may be so bold, I want to emphasize that this is a truly exceptional humanitarian project. We are trying to bring much-needed awareness to the struggles oncological patients face every day, and I sincerely hope you will consider answering our call.
Our association will have a booth on-site where we'll be selling treats from Hershey's and Studena. Additionally, we are continuing our petition drive to ensure patients can access the highest quality treatment for chronic, malignant, and rare diseases as recommended by specialists, covered by Medicare. This time, we are conducting this initiative in partnership with the Coalition of Health Associations. Furthermore, on Saturday, September 20, we will be hosting a booth on Bogovićeva from 11:00 AM to 2:00 PM, where we’ll be selling Terry Fox t-shirts.
What we truly need now are volunteers. If you have any desire to help us out on either September 20 or September 28, we would be incredibly grateful if you could join us.
If anyone is interested, please reach out via email. My thanks to everyone.
The one thing I just can't wrap my head around is this: what actually happens when a hospital finds itself short on funds for an exceptionally expensive medication?
Medicare has decided to use paid newspaper advertisements to inform policyholders about their various coverage rights—a move confirmed by Medicare Director Václav Bergman. The first ad will outline how patients can get approval for high-cost specialty drugs; the second will detail the procedure for requesting medications not currently on the Medicare formulary; and the third will explain which patients qualify for medical treatment abroad and how to navigate that process.
“We’ll run the first ad in about ten days, followed by two more at two-week intervals, each taking up about a quarter of a page,” Bergman said, explaining why he and his senior staff chose this route. “Our attempt to inform the public about how to access certain medications ended in a rather ‘messy’ misunderstanding back in July—the infamous ‘Bublé incident.’ That was really the breaking point for us regarding how certain media outlets misinterpret patient rights.” He added, “I'm not saying our administration isn't slow sometimes—no bureaucracy is perfect—but I assure you we operate strictly by the book. Naturally, people aren't happy when they receive a denial, but our job is to steward the healthcare system's funds. We have to ensure that the money everyone contributes goes toward providing necessary services and medication to all patients, without exception. Instead, it seems those of us at Medicare are viewed as heartless villains, even though there have been instances where hospital requests for drugs simply never even reached our desks.” While these ads are funded by the premiums paid by insurance contributors, Dr. Bergman sees nothing wrong with the expenditure and isn't worried about public backlash, noting that opinions will undoubtedly be split. “Spending about thirty dollars per ad is a negligible cost to ensure accurate information reaches, I believe, half of the American population,” Bergman argued. He pointed to the issue with interferons: ever since they were added to the specialty drug list, they've been uncritically recommended to patients as life-saving miracles. In reality, interferons merely boost the immune system; they don't cure the underlying disease. Because doctors often prescribe them outside of official clinical guidelines, consumption of interferon spikes by 50 to 70 percent annually. When a physician refuses to prescribe it outside of those guidelines, they often tell the patient they can't get it because "Medicare won't allow it." But Medicare didn't invent the clinical guidelines; the medical experts did.
Regarding life-critical medications, such as cytostatics or treatments for rare diseases, patients should receive their medication within ten days, according to Bergman. He also noted that following a recent agreement with the Secretary of Health, Milinović, patients will no longer face outright denials for certain drugs. He explained that this applies specifically to cases that don't involve the most expensive specialty drugs from the Medicare fund. With approval from a hospital board, patients can still obtain medications prescribed outside of standard guidelines, as well as drugs not on the Medicare list that are covered by hospital budgets. "
Article adapted from The New York Times, 09.05.2008
Angela Wright said:Now that you’ve put it into words, I know it’s the truth, because it’s exactly what I’ve felt myself. Death is actually the easiest thing in the world. It’s the space between birth and death that hurts. Don't be afraid of death!
The more my Pigeon’s health declines, the more I find myself dwelling on death... it isn't about being afraid of dying... it's about that endless, hollow sadness that settles in once someone you love is gone...
rapidseal49 said:I don't think you're right, but if we start going down that rabbit hole, this discussion will spiral out of control, and honestly, it doesn't belong in this thread...
Best regards,
God, I truly hope I'm wrong... but then again, why are cancer rates still so high? Do you really believe people haven't tried every other possible avenue first?
Rachel Brown63 said:Now, I realize this might make it look like I'm being dishonest, but I don't actually have her phone number on hand. Just call the Doctor; ask him how he operates. I know for a fact that when dealing with parents of children, he provides contact info for other parents so they can discuss the therapy and treatment protocols. He likely does the same for adults. I didn't come here to lie or play games in this thread; I came to tell people about one more avenue they might not be aware of—to those who are starting to lose heart and need to know there's still hope. I am certainly not here to peddle lies. I just don't understand.
I don't think anyone thinks you're lying, but let's be realistic: malignant tumors simply cannot be resolved without surgery, chemotherapy, or radiation.
That kind of thing just doesn't exist. People who claim to have healed themselves using strange, "magical" methods almost certainly weren't suffering from truly malignant or severe diseases.
When we were first confronted with a terminal diagnosis, our first instinct was to hunt for alternative methods. Like anyone else in the world, we were terrified of the side effects from chemo and radiation. However, we have never—not once—met a single person who suffered from a malignant disease and was cured through alternative medicine alone.
Karen Torres17 said:Furthermore, I have one specific question regarding the approval process for medical treatment involving expensive medications.
Essentially, the oncological therapy for colon cancer with metastases in the liver consists of chemotherapy following the FOLFIRI protocol and immunotherapy with Avastin administered in two-week intervals. (You already know my history from my previous posts.)
Today, the oncologist submitted a request to the hospital board and Medicare for the approval of high-cost drugs, specifically Campto and Avastin.
The hospital board shouldn't be an issue, but what worries me is that the request was sent from Miami all the way to Washington, D.C. for Medicare review. Given that this is an urgent matter—which is explicitly stated in the request—I am quite anxious and I am actually asking you all: roughly how long does this wait take?
Has anyone here gone through something similar? So, the drugs are available, but Medicare needs to authorize them first. Our oncologist told us that all the criteria for approval have been fully met.
How long did you all have to wait for approval for expensive chemotherapy?
Regards, C.
Our association, working alongside an association for American patients, has spent the last six months running a fierce campaign specifically targeting these long delays in approving expensive medications.
In our own case, we waited two full months for Medicare's approval and were forced to pay out-of-pocket for the cytostatics just to pressure them to start the treatment immediately. However, the situation has shifted lately; Medicare is now resolving approvals within a week or two. There shouldn't be any issues moving forward.
That said, if you run into any trouble, please reach out to our association.
Grace Rodriguez16 said:Could anyone share their experiences regarding referrals for medical treatment abroad? I'm wondering how long the whole process takes, whether the paperwork is manageable, and if there is any way to speed things up.
The reality of the situation is that here in the United States, there are doctors capable of performing certain procedures, but Medicare (no longer) covers specific components required for the treatment. Consequently, I’ve been advised to seek care overseas...
I am looking for your actual, firsthand accounts. Best regards, Grace Rodriguez16
Referrals for Medical Treatment Abroad
- This is an option if the necessary treatment cannot be performed within contracted health facilities in the United States, but can be successfully completed abroad; - Before heading overseas for treatment, you must submit a request to the Centers for Medicare & Medicaid Services along with the following documentation: a) medical records b) a recommendation from a specialist physician for overseas treatment, including proposed foreign healthcare institutions where the procedure can be performed; - The Centers for Medicare & Medicaid Services will issue a decision regarding the right to receive treatment abroad via a formal ruling.
You should study the regulations on the right, conditions and manner of using health care abroad (found in the Federal Register 80/07 and 85/07- amendment)
Nancy Thomas18 said:Hello everyone from my side too... technology fails us sometimes. My computer was acting up and I was in a total bind. I unfortunately missed my last chemo cycle... after the seventh one, the nausea and weakness were just too much to handle. Now I'm back for follow-ups, and the CEA is high again, while my liver numbers look like those of an old alcoholic... I still have a CT scan with contrast ahead of me, and honestly, everything is starting to feel a bit indifferent. I've even stopped taking propolis and Enshure, and it feels as if someone is slowly sucking the strength right out of me through a straw...
My husband's situation is grim. The illness is almost incurable because there isn't a chemotherapy protocol yet capable of destroying his sarcoma. To make matters worse, the location of the tumor complicates everything. His primary sarcoma is located near the pericardium.
We go through crises, certainly, but we aren't giving up. We are doing everything in our power to squeeze out just a little more time—one more new day, which means everything to us. We both promised each other that we would fight until the very end. Even if we lose this battle, we will lose it with our heads held high.
Beyond the illness itself, we're being screwed over by bureaucracy. Quite often, the system essentially sentences terminal patients to death because, from their perspective, treating people in our position simply isn't "cost-effective." However, they won't break our spirit. We keep fighting, and we refuse to let them wash their hands of us.
When I find myself spiraling into darkness and depression, working with the association is what pulls me out; it gives me the drive to actually get moving. I've met people there who truly inspire me—people who reached out with unconditional, uncomplicated friendship during my most desperate and lonely moments. Together, we are working steadily on a major project designed to help all of us. And even if things don't turn out the way I hope, something will remain behind all this grief and struggle. Just knowing that I am part of something larger gives me the strength to endure.
So, please, do not give up without a fight. You are not alone. 🙂
Just wanted to give you all an update—I called Rib and they finally settled the case today. We’re heading up there now to get everything registered, and therapy starts immediately.
I’d like to offer another example. During months four, five, and six, we were fighting a desperate battle for our dear Alice, who, tragically, passed away.
We stood together before the media, speaking with one voice to highlight the critical issue of drug procurement. There she was—this woman, exhausted and physically broken by her illness—speaking out publicly about the struggle, and we made sure to connect her with the press, standing firmly behind her in every single article published.
Ultimately, we didn't win the fight for her, but even so, we managed to pull together and raise the funds as a group. No one had to face that struggle alone. If there had been any actual willpower on the part of the government, her medication would have been administered right on schedule. But there wasn't.
The point is, we have to speak up publicly.
Sharing advice isn't the issue here. When I mentioned that people call me, I wasn't talking about offering medical advice regarding illnesses, side effects, or tests. I was referring to those individuals who refuse to go public, yet somehow expect the association to solve their problems behind closed doors.
Melissa Stewart said:This was probably aimed at me. I’m not asking anyone to solve my problems or to go out and win a fight against "our" sarcoma on my behalf. People have enough of their own burdens to carry. I thought this might be a place where one could ask for advice—specifically directed toward those who have already navigated this path and are unfortunately still walking it—regarding where to get things done and how long the wait times actually are. That’s all! I just hoped that, at least here, I wouldn't be brushed off the way you get when you show up at a hospital only to wait for a doctor who then tells you they won't be coming in because of an emergency surgery, and so on, time and time again. It’s infuriating when you live hours away from New York City and you've got plenty of money in the bank. I am sincerely grateful to slyseal28 for her response, her support, and her relentless fight—not just for herself and her husband, but for all of us. I know she gains nothing from the thanks, but it matters regardless. I can contribute by signing petitions, and that is exactly what I am doing. Reactions vary wildly, of course. You get people saying, "I wouldn't do that," or "I'm not from around here." It doesn't matter if you're from some tiny town in the middle of nowhere. By some stroke of luck, I've also encountered people who asked me to leave a petition with them so they could deliver it locally. As soon as I gather enough signatures, I’ll send them to the association's address, perhaps even multiple times. I am not afraid to speak publicly about the issues we face.
This wasn't directed at you, nor at anyone seeking advice, help, or medical recommendations. That is precisely why forums exist—both this one and the other ones—so you can ask exactly the kind of questions you just did.
The real issue lies with the people who call us up and beg us to go to the media with *their* specific struggle regarding therapy delays. We cannot speak on someone else's behalf because they insist on providing the full name of the person facing the problem. What we *can* do (and what we are eventually doing) is stand beside that person and say collectively: "Look, we have a systemic problem here."
If someone is waiting for medication longer than they should be, they need to speak up, clearly and loudly. Because if we are the ones stepping forward with the story, the first thing people ask us is: "Who?" If we say we can't disclose names, we just get hit with: "That's not true. You're making it up!"
Do you see? There has never been an issue with sharing advice, recommendations, or facilitating connections with doctors. That was never the problem.
People expect me to go to their doctors and pick fights on their behalf. I simply cannot do that.