Support resources for families dealing with cancer and other serious illnesses

mistyjackal842 said:They’re still out there striking. That guy Babic from Des Moines is calling all the shots—he was just on the news at noon. Looks like the poor guy isn't exactly thrilled. Meanwhile, you have all these other people sitting around unemployed and completely ignored. All they have to do is show up at the unemployment office in Washington, D.C. It seems their main priority is complaining about how much we get paid and making a huge scene about it.

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Word is oncology patients are supposedly exempt from that. But hey, we'll see how that plays out.🤷

I wasn't just thinking about oncology patients, either. There are so many other people fighting serious illnesses. When my mom was admitted to the hospital, the medical staff strike had just kicked off, and honestly, you could tell they just weren't interested in helping. It seemed like even changing a diaper was too much effort for them. She didn't have any pressure sores at home, but during that strike at the hospital, she developed them in just four days.

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I’m all too familiar with that agonizing wait for a phone call. In the beginning, I was so cautious—just sitting there, waiting, trembling, losing sleep while running every possible nightmare scenario through my head. I don't do that anymore. Now? I just pick up the phone and ask. Honestly, given everything I’ve been through and everything I’m still dealing with, I simply can't afford the extra stress of playing the waiting game. I haven't had a bad experience yet, but even if they decide to tell me I'm being a nuisance or whatever... well, I’ll just call them again. I refuse to sit here waiting indefinitely. I'd much rather swallow my pride if they give me any attitude than spend my life waiting for a ringback.🙂

I gave them a ring this morning, and my sister told me they still haven't set any dates for the surgery. She said once they have something, they'll call me, so there's no point in me calling them... I actually played nice today—believe it or not!—so I didn't call again, even though nobody bothered to reach out to me either. But tomorrow? Tomorrow I'm calling. Let them tell me I'm being rude or annoying; I don't give a damn. At least if they give me a date, I'll have something to hold onto. If I wasn't stuck waiting on this surgery that hasn't even 😢 started yet, I'd be heading off to get my lungs imaged at some hospital, maybe somewhere like Des Moines or New Gradiska, because this lung metastasis is absolutely killing me. Instead, I'm just sitting here waiting for the Mayo Clinic to get their act together, and while I wait, my mind goes everywhere. I just hope I actually make it to the finish line..!

Greetings to everyone here... My father underwent surgery for a lung tumor about two and a half years ago, and earlier this year, the cancer metastasized to his brain, which led to radiation therapy; after that treatment, he returned home feeling like a completely transformed man. However, just a few days ago, he suffered an epileptic seizure and was rushed to the neurology department at the local hospital, where they discovered new metastases, subsequently transferring him to a different facility... Three days ago, I inquired with the doctor at this new facility regarding my father's prognosis, and she bluntly told me that he is essentially just waiting for death. Seeking clarity, I went to see his primary physician at the hospital in New York City the following day to present his medical records. She informed me that if I could bring him to New York City for an evaluation, we could secure both a bed and specialized therapy, but there is a significant caveat: he must be mobile and fully conscious. Unfortunately, my father is currently unable to move effectively; he hasn't had sensation in his right arm for about two weeks, and while he can bear weight on his right leg, he cannot actually move it. He remains conscious and possesses such a fierce will to fight that when I mentioned he might walk again if he could just make it to New York City, he nearly leapt out of his bed... I called the other facility as well, and they were quite explicit—once they discharge him, he will not be permitted to return there. Is it realistic to expect that, with medication alone, he might recover enough within a few weeks to support himself on his left leg so that I can transport him to New York City? If I do manage to get him to New York City for that evaluation, they might simply send him straight home, and I am deeply concerned that we cannot provide the level of care at home that he receives at the current facility, even if they are only managing him with tablets... I find myself at a loss... What would be the most prudent course of action to take??

It’s likely those issues are stemming from edema. A course of dexamethasone and mannitol might offer some relief, but the real question is how far along this tumor actually is. Honestly, I wouldn't dream of discharging him until we see the MRI or CT scans. Those should be sent over to the Mayo Clinic for an assessment of surgical viability—maybe have a specialist look at it via gamma probe, for instance—and get a radiologist to determine if radiation is still a viable option or if he’s already hit his maximum dose. Taking him out of the hospital before getting those answers is just pointless.

Angela Wright said:He's likely experiencing these outbursts because of the edema... a course of dexamethasone and mannitol might offer some relief, though one has to wonder to what extent, given how far the tumor has already progressed. I would suggest taking his MRI or CT scans over to the Mayo Clinic to have them evaluated for surgical viability via Gamma Knife, or perhaps consulting a radiologist to determine if there is any remaining capacity for radiation or if he has already reached the absolute maximum dose. It seems rather futile to consider discharging him from the hospital before getting such an opinion...

I suspect he has indeed hit the maximum radiation limit, as my doctor here in Washington, D.C. explicitly told me he can't undergo any more radiation treatments. As for the Gamma Knife option, I suppose I could look into that... Do you happen to know which specialist we should reach out to?

Terry Smith6 said:I suspect he’s already hit his maximum radiation limit because my doctor here in Washington, D.C. told me there isn't any more room for him to take any more treatment. I could definitely look into the Gamma Knife option, though. Do you happen to know which specialist I should reach out to?

Neurosurgery Mayo Clinic, anyone? Maybe Paladino, Darkness, or Henry...

Angela Wright said:Neurosurgery Mayo Clinic, anyone? Maybe Paladino, Darkness, or Henry...

We don't actually have the physical CT or MRI scans on hand, though the discharge summary does include a detailed description from one of those imaging reports... I can't help but wonder if such a written description would be sufficient for a surgeon to determine if an operation is even feasible...

Question for Angela Wright: Last year, my mom was diagnosed with aggressive left breast cancer. She had three main tumors, the largest being about 1cm. They performed a full mastectomy and cleared everything out—the results were clean, meaning there was no metastasis. She went through six rounds of chemo, which she handled incredibly well (she didn't have radiation, though I'm not sure why some people get it and others don't), and now she’s been on Herceptin for almost a year. Right now, they’re monitoring her other breast and a uterine fibroid (keep in mind she's HER2 positive), but the Herceptin seems to have stabilized everything; her labs look great. However, my grandmother went through this exact same scenario, and I refuse to let my mother suffer the same fate. I want her ovaries and uterus removed. I’ve asked her oncologist and her primary doctor multiple times, and I keep telling them I'm being pushy, but they insist it's unnecessary because everything looks fine right now. But I know "fine" can turn into something else in the blink of an eye. I want her to be evaluated at the Mayo Clinic so we can get a second opinion. Since her cancer is hormone-driven, why won't they listen to us when we ask to just take all those risks off the table? Who should I contact at the Mayo Clinic? She only has a few months left on the Herceptin, and I'm terrified of what happens once she's off it.

To add to that, my grandma had the same situation and only lived five years after her initial diagnosis, and I am not losing my mother like that. My mental state is also completely trashed right now because I spent the first part of this just refusing to face reality. Mom has been acting incredibly brave—almost like she's just dealing with the flu—but I'm scared that if there's a recurrence, she won't be able to hold up. As for me, watching this therapy wind down feels like a ticking clock over my head. I spend my time crying (not in front of her) and worrying constantly. On top of that, her left arm is swelling and hurting. She tends to blame it on leg pain, which drives me insane because I immediately spiral thinking it's a relapse. And now, they actually want to send her back to work once she finishes the Herceptin.

Is it normal for her arm to hurt and swell that much? She's ended up in the ER twice just from the pain. And seriously, who do we talk to at the Mayo Clinic?

Thanks in advance for any help.

Sandra Moore6 said:Her left arm is swelling and hurting. It’s easy to mistake it for leg pain—which always makes me panic and worry about a relapse—but now they actually want her back at work once she finishes Herceptin therapy...

Is it normal for her arm to hurt and swell this much? She’s already ended up in the ER twice because of the pain. Who should we reach out to at the Mayo Clinic about this?

Thanks in advance for any help...

The pain and swelling are actually pretty common since they removed those lymph nodes, so the lymph fluid just isn't flowing right through the tissue...😉

If she’s finished chemo—and it sounds like she has—maybe try asking her doctors about manual lymphatic drainage with a physical therapist. It might help get that flow back to normal...

Terry Smith6 said:We don't actually have the CT or RT scans on hand, just the written descriptions from them in the discharge papers. Is that going to be enough for a surgeon to decide if surgery is an option?

No, they’re going to need the actual MRI or CT images. Go hunt them down—under the law, you have every right to demand them.

Sandra Moore6, I am right there with you on this. You should try reaching out to Dr. Basic over at the oncology department at Mayo Clinic.
Since all of her lymph nodes have been removed, her lymphatic flow is basically blocked. If the doctor thinks it's an option, she really ought to look into lymphatic drainage and compression bandaging. Try sending a private message to the user lahor; she works in this field and can give you some solid advice on where your mom should go. When dealing with oncology patients, you absolutely have to make sure the therapist is licensed—this isn't something you take chances with.

Thanks a ton, Angela Wright, for the heads-up!!!!

slypuma said:Thank you all for the support. We’re expecting a call from the doctor today with definitive information regarding the stage and our actual treatment options. Mom has her follow-up appointment this Monday, which is when the physician will officially break the news. We've actually coordinated with him to be tactful—we asked that he doesn't be too blunt about the specifics, but rather focuses on encouraging her to stay strong and keep fighting. She struggles with depression, so our biggest fear is that she might just give up on us.
Angela Wright, if you happen to know, could you explain how Vertex Pharmaceuticals actually works? We were reading that it’s an incredibly expensive therapy. Is there any chance of getting it covered through Medicare?

I’m a little late to the party on this one, but you’ve probably already realized that there’s absolutely no way that’s happening. 🙂The figure he’s looking at is roughly $65.😢

Even if you managed to get your hands on it, the hospital wouldn't be able to apply for any coverage due to their ridiculous financing rules.

Jamie Howard3 said:I'm a bit late to this, but you probably already found out there’s no way happening🙂...it's about $65,000 per dose.😢

Plus, even if you somehow managed to get a hold of it, the hospital wouldn't be able to apply because of their stupid funding rules.

Hmm, we don't really need it right now. If the PET CT comes back okay, they aren't planning on any therapy, just frequent check-ups...
Wait, what do you mean? Even if we could get it, they won't give it to her?? I don't get it...

slypuma said:hm, we don't need it right now; if the PET CT comes back clear, they aren't planning on any therapy, just frequent check-ups...
What do you mean? If we actually manage to get our hands on it, they won't give it to her?? I don't get it...

It’s because using a drug like this requires a formal sign-off from the hospital physician. Under US law, when a medication is administered within a hospital setting, the funding comes directly out of the hospital's budget. This means the decision to approve or deny the treatment isn't just up to one doctor—it's decided by a hospital board upon the physician's request. Most of the time, doctors don't even dare submit the request because they're terrified of the repercussions. Think about it: if you wanted to buy the drug yourself, you can't do it without a prescription. But the doctor won't write that prescription, because the moment they do, they put the hospital in a bind where you could legally sue for reimbursement. By writing that script, they are essentially stating that their specialist opinion deems the drug necessary, and the hospital becomes financially liable. We are talking about an incredibly expensive medication where the cost for a single patient can easily eat up half the budget of a small oncology department. Now, if there is massive trust between a patient and their doctor, sometimes they work things out in a "gray area" so everything stays under the radar. As far as Vertex Pharmaceuticals goes, the situation is slightly better than before because the drug is officially registered, so you don't need that complicated emergency import process that required hospital board intervention. Honestly, this is one of the most idiotic pieces of healthcare legislation left behind by Milinovic, and clearly, the current administration isn't in any rush to fix it.

I can't help but think about the late Snow White whenever someone brings up Vertex Pharmaceuticals—especially remembering her uphill battle with Medicare when they refused to cover her treatment costs at first... honestly, this whole law just makes me sick. 😢

God help me... fingers crossed that tomorrow's PET CT comes back clear and there’s nothing to worry about. Does the report come out right away, or what?

Hello everyone. I am looking for some guidance regarding a lung cancer case. The surgery was scheduled for the end of this month, but we haven't heard anything yet. Does anyone know if procedures at Dubrava Hospital are still moving forward despite the strike?