Posts by slyseal28

Honestly, who even cares about those clowns!
I’d argue he actually ended up digging his own grave more than he did ours... which is why we really need to double down on this, bringing even more people into the fold...

Listen, everyone, it was a decent outing considering we were basically walking straight into a hornet's nest. We have to keep fighting, together, with everything we've got. 🙂

Kimberly Wright said:I don't think there’s much point in focusing on isolated "rebellions."
Real strength comes from numbers and solidarity.
To me, the most logical way forward is leaning on associations that act as a safety net for their members.
Is that how 'For a New Day' operates?

Well, that’s exactly what we try to do, but there are times when the members themselves have to stand up alongside their association. The first thing a journalist ever asks us is: "Do you have a member willing to go on the record?"
In the case of Cleveland, we managed to protect the patient's identity because we were able to motivate the doctors to speak out. Things in Cleveland aren't settled yet; we'll see how this week plays out... Either they'll increase the limits for oncology, or we'll be forced to step in directly on behalf of the patient...

Alexander Lewis said:Angela, what exactly are you basing this theory on—that mammograms actually do anything positive to lower breast cancer rates?

As I recall, there were massive public awareness campaigns pushing women toward mammography. Perhaps this supposed "expansion" is just a byproduct of more people getting screened?

I read the piece over at The Council Voice, but I also took the liberty of tracking down the actual study the journalist was citing. It turns out it isn't even an official stance from the U.S. Department of Health and Human Services, despite how the reporter framed it.

The article itself explicitly states: Disclaimer : Recommendations made by The USPSTF are independent of the U.S. government. They should not be construed as an official position of the Agency for Healthcare Research and Quality or the U.S. Department of Health and Human Services.

First off, any journalist publishing this really ought to have been much clearer about that distinction.

Secondly, let's not forget that it was precisely those advocacy campaigns led by women's health groups and federal agencies that helped drive early detection rates up in the first place.

Sure, maybe there are side effects or concerns with mammography. But honestly, the far greater danger lies in skipping the screening altogether and letting a tumor just sit there and grow unchecked...

Angela Wright said:Me too. 😠

The doctors have finally weighed in...

I went back and took a closer look at that article, and let me tell you—it isn’t actually the official stance of the U.S. Department of Health and Human Services.

Even that specific article includes this fine print: Disclaimer : Recommendations made by The USPSTF ara independent of The U. S. government They should not be construed as an official position of The agency for Healthcare research and quality or The U. S. Department of health and human Services

Here is the link to the article.

The journalist who put this out there really should have been explicit about that.

Laura Scott48 said:I'm reaching out because I desperately need some help. My father is battling cancer, and his condition is quite dire right now. What we urgently need is an oxygen concentrator (I'm not entirely sure of the technical term). If anyone has any information on where we can source one quickly, please let me know. We need this as soon as possible. Thank you.

I'll send you a PM.

John Martin14 said:Thanks for getting back to me.
In what form can this medication actually be found, and where?
My friend's son is battling Stage IV melanoma, and it's already spread to his brain; they've been recommended Sutent.
Could you please send over a link in either Spanish or German? Our English isn't exactly up to par.

And who exactly gave you that recommendation? Was it a doctor, or someone else?

John Martin14 said:Does anyone know where I can find Sutent in injectable form?
Thanks so much in advance.
Best regards to everyone,
John Martin14

Look, Sutent doesn't come in an injectable version—not here in the States and not anywhere else. I'm curious, who actually told you that? 😕

quoting: SUTENT is a medicine that treats cancer. It comes in 12.5-mg, 25-mg, and 50-mg capsules. You take SUTENT once per day by mouth. Do not open the capsules.

bluewalker30 said:Can anyone tell me where I can pick up Herceptin and what the cost looks like? I don't live in the States, and the waiting lists here are just endless.

You can head to any private pharmacy with a private prescription from your doctor along with your most recent discharge papers.

Our association is stepping up once again this year to participate in the Terry Fox Run 2009. We’re currently looking for some reliable volunteers to help our activists man the booth—handling everything from T-shirt sales to snacks, drinks, toys, and various other merchandise.

The Terry Fox Run 2009 is scheduled for September 20th, 2009, at Lake Havasu starting at 2:00 PM, with the actual race kicking off at 4:00 PM. If you want to get ahead of things, we'll be running a T-shirt sale on September 12th, 2009, at our booths in Times Square from 10:00 AM to 2:00 PM.

The organizers behind this year's humanitarian run—MPG LLC, the Embassy of Canada, the American Cancer Society, the Holding Company, and The Esplanade Hotel—are teaming up with our own "For a New Day" American Cancer Society chapter, along with their families and friends. They are calling on both local businesses and everyday citizens to support the cause once more. You can contribute by running, walking, cycling, skating, making a donation before the event, or simply volunteering your time on the day of the action.

The core mission here is to raise funds for research into hereditary breast cancer in America. All donations from this year's efforts will be directed toward the Lawrence Berkeley National Laboratory.

If you're interested in volunteering, please reach out to Jane or myself:

jane@zanovidan.hr, cell: +1 555 231 9064
katarina@zanovidan.hr, cell: +1 555 231 9063

To leave you with a thought, here is a quote from Terry Fox himself: "We need your help. People in cancer clinics around the world need people who believe in miracles. I am not a dreamer, and I am not saying that my initiative alone will provide answers or find a cure for cancer. I simply believe in miracles. I have to."

Melissa Morgan67 said:Lisa White54 wrote earlier, maybe about a month ago in this thread, but I just lost the strength to keep posting because reading about people passing away just pulled me even deeper into the dark
it’s someone close to me

It’s a harsh reality that some of our fighters fall along the way. But the mark they leave on us is permanent. Everything they stood for—how they lived, what they loved, and most importantly, how much they cared for us—that should be the fuel that keeps us moving forward. We have to carry ourselves with pride, knowing we were lucky enough to have known them and loved them.

Some of those of us left behind will pick up their fight, doing what they did to help others and find our own healing. Others might try to chase down those private dreams that were supposed to be shared together. But regardless of the path, we all need to remember one thing: our heroes wouldn't want to see us sink. Love and grief stay etched in our hearts forever. Having that faith—that sense of hope that they’re watching over us from somewhere better—is what gets us through the hardest days.

We’re inviting you all to come by and visit our association's booth over at Central Park. The whole event is set to run for five days:

Friday, July 10th starting at 7:00 PM — "A Rendezvous at Central Park"
- Starting at 7:00 PM – A performance by the Chicago Fencer group
- At 8:00 PM – The musical dance show "Singing NYC" featuring the Zagrepčanka Dance Choir and boys, hosted by Lana Olujić.
- At 9:00 PM – The official kickoff of "Summer at Central Park" featuring the Rozga Brass Band

Saturday, July 11th starting at 7:30 PM — The "LAS Zrinjevac" show
- At 7:30 PM – A performance by the Chicago Dance Center
- From 8:30 PM – An invitation to dance along to the SWINGERS group and those timeless classics from Frank Sinatra, Elvis Presley, Ivo Robić…

Thursday, July 16th starting at 7:00 PM — "Musical Guides" for Alzheimer's Disease
- At 7:00 PM - A performance by the group CHANTE
- At 7:30 PM – A presentation by the American Alzheimer's Association
- At 7:45 PM – The opening of the Ozmec zvonak art exhibition
- At 7:45 PM - A showcase of ceramics by Andrea Bassi and hats by Vladine Dajčić
- At 8:30 PM – A concert by the band PUTOKAZI

Friday, July 17th "FOR A NEW DAY AND A BETTER TOMORROW"
- At 7:00 PM – A performance by the Maksimir Majorettes
- At 7:30 PM – A presentation by the For a New Day Association
- At 7:45 PM – Presentations by the Europacolon Association and the Jedro Association
- At 8:00 PM – A presentation of the Manifest Life concept
- At 8:30 PM – A performance by the group CHANTE
From 7:00 PM to 10:00 PM – The Ozmec zvonak art exhibition, featuring Vladine Dajčić's hats and Andrea Bassi's ceramics

Saturday, July 18th "Together Forever"
- At 7:00 PM – The opening of the "Together Forever" wedding photography exhibition and a fashion showcase of "Old School Chic" by designer Vladine Dajčić.
- At 8:30 PM – The play "Applause for a Pitiful Cheat," performed by Željko Konigsknecht
From 7:00 PM to 10:00 PM – The Ozmec zvonak art exhibition, Vladine Dajčić's hats, and Andrea Bassi's ceramics

In the event of rain on Friday, July 10th, the program will be moved to Saturday, July 11th; if it rains on Saturday, we'll push everything to the following week.

Hard times are upon us, and one has to wonder where the government will try to cut corners next... So, let's get together and see if we can coordinate some shared activities to navigate a turbulent autumn...

Melissa Parker37 said:Regarding Susan Diaz91:
From what I understand, under Medicare, Tarceva is provided free of charge to about 60 patients a year. Roughly 400 people qualify for this treatment, and in the US, around 3,500 people are diagnosed with lung cancer every single year.

Thanks to the constant pressure from patient advocacy groups—specifically the Jedro Association for lung cancer patients and the For a New Day Association—there actually isn't a cap on how many patients can receive Tarceva.

The indication for Tarceva is as follows: Third-line treatment for non-small cell lung cancer (NSCLC), specifically for locally advanced or metastatic stages after two lines of chemotherapy have already been completed.

urbandriver45 said:I need urgent help. I have bronchus cancer and have been undergoing treatment for 6 months without success—chemotherapy hasn't worked for me, so they prescribed Tarceva. I've been taking it for 12 days now, dealing with vomiting, rashes, and I won't even list the rest, but what's really killing me is the pain. It's this constant ache that just won't quit, or sometimes it hits in waves for a few hours. Even Voltaren suppositories don't touch it, and I'm using 75mg Durogesic patches which seem completely useless for me. I've tried Ketoral, Voltaren injections, Tramal in every form imaginable, and nothing works. Has anyone dealt with something similar or can recommend a medication to manage this pain? My doctors just shrug their shoulders at me. Please, I need advice. Since the cancer is on the left side, radiation and surgery aren't options right now.

Ask your doctor about Gabapentin (Neurontin). It's used for treating neuropathic pain (among other things, but that's beside the point right now).

My husband went through some brutal pain and ended up combining Gabapentin 3x1 with a 100mg Durogesic patch.
The pills cost about $50. You can only get them via prescription if a neurologist recommends them.

If a pulmonologist or oncologist prescribes it, you'll likely have to pay out of pocket. For my husband, they worked significantly better than Tramal (which he was taking alongside the patch previously).

The most critical thing when managing pain is consistency—you have to take the tablets continuously. And always keep a stronger analgesic on hand for those sharp, stabbing pains that break through.

Of course—please run all of this by your physician first. It might also be worth reaching out to a Pain Management Clinic (I assume there's one located at the Mayo Clinic).

William Cox6 said:Hello everyone,

I’ve been lurking in this thread for quite a while now... but I haven't found the words to jump in. Honestly, reading through all this is just too heavy, and I wasn't sure what smart thing I could possibly contribute to help.

A few years back, my father was diagnosed with sarcoma in his lungs. He went through surgery, and everything seemed to be tracking perfectly fine until recently, when he suffered an effusion. He’s just finished his chemotherapy, and we’re currently in that agonizing limbo, waiting for more tests to come back before we even know what the next move is.
I haven't been able to find much substantial information regarding this specific type of sarcoma—not even in English—so I was wondering if anyone here knows where I might dig deeper... specifically regarding treatment protocols, options, any emerging drugs, or anything similar.

Which specific type of sarcoma are we talking about? And was it primary to the lungs, or was it a metastasis?

Otherwise, on our site you might find some more detailed data (written in English) regarding sarcomas.

casualrider21 said:My angel is gone😢🙂 😢🙂🙂🙂🙂
The pain and the grief... they're just too heavy. They've completely broken me.

He was strong and lucid until the very last second. The nurses called me from the hospital because he was calling out for me. I ran like a madwoman. Even through all that agony and struggle, his only thought was how to make things easier for me; he didn't give a single thought to himself. He managed to say exactly what he needed to say. And then, right at the end, he told me he wasn't in pain. My hero.
That night destroyed me.

I used to hope that, in time, the comfort of kind words and shared thoughts would help.
Now, none of it seems to matter.

I am profoundly, deeply sad.😢🙂

My deepest condolences... our angels will be waiting for us and watching over us.

Brenda Harris81 said:Personally, I'm not an expert, but from what I've gathered online, this is a condition involving the ligaments and the heel, caused by degenerative changes and calcium deposits in those areas. So, it likely has nothing to do with cancer.

Of course, a medical issue doesn't necessarily have to be linked to cancer, but we can't ignore the fact that the individual dealt with colon cancer just a year ago. Because of that history, one really ought to be cautious and run all the necessary tests. The real question here is: which specific screenings were performed? It’s simply a matter of ruling out cancer entirely.

bluewalker13 said:I clearly misread and wrote ENTEZOPATIJA

So, what kind of follow-up screenings or checkups have you all actually gone through?

Anonymous said:Cancer patients in America are often treated like second-class citizens because they can't access the same medications that are considered standard in Europe.

Up until 2004, expensive drugs were paid for out of individual hospital budgets. This meant patients at "poorer" hospitals were essentially left behind.

After that, a special fund was established within Medicare. A few months ago, the Secretary, Darko Milinović, managed to cut through some of the long-winded administrative red tape, so now you can get certain drugs in about ten days—provided they actually make it onto the approved list. 😕

However, other high-cost medications are still supposed to be funded by those limited hospital budgets. In practice, despite what specialists recommend, this almost never happens because hospital boards routinely reject requests due to the sheer cost of the drugs.

Beyond the traditional options—surgery, radiation, and chemo—we've been seeing the introduction of so-called 'smart drugs' for about ten years now.

Even though it’s well-tolerated and shows incredible results in treating women with breast cancer, the drug 'Avastin' still isn't on the Medicare list, leaving patients to foot the bill themselves.

Today, while I was at my doctor's office in the Oncology Department, I was told that this summer, they’ll be presenting a petition to Secretary Darko Milinović. We'll be demanding that Avastin finally be added to the Medicare list for 2009.

Confused, bitter, and honestly just sad, I found myself wondering:
What kind of place is this?😲

No matter what else I did today, I couldn't shake that conversation with my doctor.
A petition for medicine!?
For actual health care!?

I don't mean to confuse anyone; I'm sure there are plenty of people here who would gladly put their names down for something like this...
How many of us are there?😕

Excerpt from an interview:
We will never truly eradicate cancer.
Cancer will always be a factor because it stems from our own cells, which we eventually lose control over.
The only thing we can do is recognize our limits and leverage our strengths in the fight against tumors.
Fighting cancer is a marathon, and we can only find success through genuine cooperation between scientists, clinicians, the general public, and individuals alike.

American scientist Ivan Đikić

Avastin is actually on the list here for colon cancer, but it isn't categorized under the high-cost drug list, meaning it has to be covered by hospital budgets. Our Association is fighting tooth and nail for Avastin and other vital medications, and any help would be greatly appreciated!

Here are a few articles:

how to access expensive drugs

about avastin

Casey Palmer5 said:Fight on, you fighter !!!!! I’m thinking of you, and believe me—I know exactly how it feels. It’s never easy when night falls, the crowd disperses, and you’re just left there, alone with your own thoughts and memories.

Dear Casey Palmer5—the nights really are cruel and wretched... 🙂