Support resources for families dealing with cancer and other serious illnesses

Kimberly Green23 said:My stepfather lost his battle today. Honestly, the only silver lining is that he didn't suffer for too long. We could sit here all day debating if there was some hidden strength left in him to keep fighting, but that’s just not how it went down—he just ran out of steam and let go. He wouldn't let us pull him back from that haze. I really want to thank Melissa Kim45 and Agna for being there for me, and of course, all the other ladies on this forum who stepped up with advice. I'll be hanging around to see what you guys say, and I'll try to chime in with help whenever I can.

Melissa Stewart said:My heart goes out to buhtlica. Please accept my condolences.

Today we received the PhD pathology report (from Prof. Dr. Sven Viggers):
The histology shows irregular connective tissue fragments permeated by a tumor composed of small atypical cells with hyperchromatic nuclei and scant cytoplasm, mostly arranged in irregular clusters. Some tumor cells show necrotic changes. The tumor cells are predominantly round to oval with irregularly distributed chromatin and no prominent nucleoli. Immunohistochemical staining of the tumor tissue is strongly POSITIVE for CD-99, but negative for NSE, S-100, EMA, and cytokeratin.
The findings primarily correspond to the profile of Ewing sarcoma.
RT-PCR genotyping for EWS/FLI-1 was NEGATIVE, though this does not rule out the aforementioned diagnosis.

I can’t quite wrap my head around the fact that this isn't definitively categorized yet—it's just a "subtype."
I did some digging online and apparently the histogenesis of Ewing sarcoma hasn't been fully established, so I suppose pinpointing it isn't as straightforward as one would hope.

Our orthopedic specialist focusing on tumors (Dr. R. Kolundžić) referred us to Dr. Šantek at Kaiser Permanente for chemotherapy.
We need to schedule a pelvic CT and a bone scan with SPECT.
Once the oncologist finishes their evaluation, we have to circle back to the orthopedist regarding pelvic reconstruction (removing the affected bone).
For the imaging, they recommended Vinogradski, so could anyone tell me what the current wait times look like there?
We can get the CT done privately, but I have no idea if a bone scan can be performed at any private clinic.

Thanks!

Kimberly Green23 said:My stepfather unfortunately lost his battle today. The only solace is that he didn't suffer for an extended period... We could spend our time debating whether he could have found the strength to keep fighting, but he made his choice; he simply lost the will to continue and surrendered to fate. He wouldn't allow us the chance to pull him from that lethargy. I am deeply grateful to Melissa Kim45 and Agna for their support, as well as to the other women on this forum who offered their guidance. I will continue to follow along, and if I can offer any advice of my own, I certainly will...

slyseal28 said:We are once again left waiting for medication. The therapy was scheduled to begin on August 14th. However, because the holidays coincided with our timeline (August 5th and 15th), everything has been thrown into disarray. We had planned for the therapy to start this Thursday, August 21st, but since the hospital board hasn't cleared all the pending cases—including ours—it won't be happening this Thursday either.

The official explanation is a staffing shortage due to summer vacations. I find myself wondering how one is supposed to explain to a hospital board that cancer doesn't take a vacation...

The therapy is now delayed by two weeks, and I am curious as to who will be held accountable for this lapse. No one, it seems, except for the patient.

The Secretary’s claim that solutions for expensive medications can be resolved within a single week is simply not accurate.

I have already reached out to the media.

Angela Wright said:What was on Fox?
Dammit, I missed it.😢

slyseal28, you guys have been on my mind constantly!

Kimberly Green23 said:My stepfather unfortunately lost his battle today. If there is any solace to be found, it’s that he didn't suffer for long. We could spend our time debating whether he could have dug deeper to find the strength to keep fighting, but that isn't how it went; he simply lost the will to hold on and surrendered to fate. He wouldn't let us try to pull him back from that lethargy. I am deeply grateful to Melissa Kim45 and Linda Wright5 for their support, as well as the other women on this forum who helped us with their advice. I'll continue to follow along here, and if I can offer any helpful advice of my own, I certainly will.

slyseal28 said:I'm thinking of you guys too. I'll call you today as soon as I find out if they’re approving our therapy or not.

Yesterday’s segment aired. Unfortunately, I was the only one on screen. People waiting for treatment stay silent because they’re terrified. They just don't get that nothing changes if you don't speak up and actually define the problem.

Nothing shifts on its own. In fact, silence plays right into the hands of the bureaucrats!

What more can they take from us—denying us timely treatment because of funding? They're already doing that!

If I keep going at this pace by myself, they'll just label me as crazy.🤷

Angela Wright;15607131 said:Everyone, please just give her some space!!!
Today, I feel compelled to make a public appeal to all patients who aren't silent, much like my mother was, as well as to the family members of those who can no longer speak for themselves.

To put it simply for those of you dropping by this thread:

Honestly, I just cannot wrap my head around the mindset of people who relentlessly harass slyseal28—specifically Catherine—every single day, acting as if she’s responsible for fixing their individual problems. For heaven's sake, the association exists to provide support when you decide to go public, not to serve as a sounding board where we have to recount your entire life story over and over. You can't build anything meaningful out of hearsay; all it does is make us look like clowns on national news, and then nobody takes our cause seriously. This woman is dealing with a sick husband and her own mountain of struggles, yet she is noble enough to lead this association and listen to your stories. Please, don't be selfish, P, and show some respect!
If you actually want to resolve an issue, you have to take the lead on it YOURSELF, perhaps with a little help from friends along the way. That is just how life works, so please, just accept that reality once and for all. Without that realization, you won't solve a single life problem, let alone fight against cancer.

This was probably aimed at me.
I am not asking anyone to fix my problems, nor am I asking them to defeat "our" sarcoma.
People have more than enough of their own burdens to carry.
I truly thought it would be okay to ask for advice (specifically from those who have been through it or are currently enduring it) regarding where to get certain things done and what the wait times look like.
That’s it! I just hoped that, at least here, I wouldn't be brushed off the way you get treated at a hospital
where you wait hours for a doctor only to be told they aren't coming because they're in surgery, or some other excuse. It feels ridiculous when you live miles away from New York City and you've got plenty of money to spend.
I am sincerely grateful to slyseal28 for her replies, her support, and her relentless fight—not just for herself and her husband, but for all of us. I know she doesn't get anything out of our gratitude, but still.
I can contribute by gathering signatures, and that is exactly what I'm doing. I've seen all sorts of reactions—from people saying, "I wouldn't bother, I'm not from around here," regardless of whether they're from a small town or a big city.
In a stroke of luck, I've also met people who asked me to leave the petition with them so they could deliver it to the right place.
As soon as I gather a significant number, I will send them to the association's address, potentially multiple times.
I am not afraid to speak out publicly about the challenges we face.

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.

Melissa Stewart said:[

This was probably aimed at me.
I’m not asking anyone to fix my problems or go out and win this battle against "our" sarcoma.
People have enough on their own plates.
I thought this would be a place where you could ask for advice—specifically from those who have been through it or are currently in the thick of it—about where to get things done and how long the wait times actually are.
That’s all! I just hoped I wouldn't get brushed off here the way people get brushed off at the hospital,
where you show up waiting for a doctor, only to be told they aren't coming because they're in surgery, and then you hear that three more times. It’s like living somewhere an hour away from New York City while having a pocket full of cash.
I want to sincerely thank 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 gets nothing out of being thanked, but still.
I can contribute by gathering signatures, and that’s exactly what I’m doing. People react in all sorts of ways. There are those who say, "I wouldn't bother, I'm not from around here." It doesn't matter if you're from some tiny town in the middle of nowhere.
In all honesty, I've even run into people asking me to leave a petition with them so they can drop it off at their local office.
As soon as I gather enough, I’ll send it to the association's address—and I'll do it more than once if necessary.
I am not afraid to speak publicly about our struggle.

Kimberly Green23 said:My stepfather unfortunately lost his battle today. If there is any solace to be found, it’s that he didn't have to suffer through a long, drawn-out struggle. We can spend our time debating whether he could have dug deeper to find more strength for the fight, but that isn't really the point—he simply reached his limit, lost the will to keep pushing, and surrendered to fate. He wouldn't let us pull him back from that lethargy, no matter how hard we tried. I want to extend my deepest thanks to Melissa Kim45 and Linda Wright5 for their incredible support, as well as all the other women on this forum who offered such helpful advice. I'll be keeping an eye on your updates, and if I can offer any meaningful insight along the way, I certainly will.

Kimberly Green23 said:My stepfather unfortunately lost his battle today.

shadowmason6 said:My mom finished her first round of chemo on June 27th (she’s doing six cycles total following the Mayo Clinic protocol). She starts back up on July 28th... Her oncologist actually gave her an extra week to recover after that first round since she wasn't sure how Mom would handle it, but otherwise, they are sticking to the 1+3 schedule!
I was too nervous to post anything sooner. Once her cycle finished, I was just sitting there anxiously waiting to see how her body would react... Honestly, I think we can be pretty happy with how things are going (even if her reaction doesn't necessarily dictate how well the therapy is working). She didn't deal with any nausea, just some loose stools—actually, it was pretty much diarrhea—on the first day of treatment. Her hair hasn't fallen out yet, though I'm still staying super vigilant... 🙂)
Three days after my cycle ended, I noticed some sores on my lower lip—even though I’ve been super diligent with brushing and rinsing with chamomile and sage. Luckily, they didn't spread deeper into my mouth and have already started healing. She was using Gelclair and some alcohol-free propolis (which is basically her go-to remedy for everything, even if no one actually suggested it for this specific issue)... 🙂)

I’d be so happy if the therapy finished with nothing more than these side effects. But honestly, I have my doubts... I’ve heard the body can get pretty worn out after the third cycle? It probably all comes down to the individual, but I would be so grateful if anyone could share what they’ve been through...

Nancy Thomas18 Hasn't been posting much lately!? Does anyone have an update on how she's doing? Keeping my fingers crossed... I really hope she made it through her last round of chemo...

Nancy Thomas18 said:I even stopped taking propolis and Ensure, and now I feel like someone is just sucking the strength right out of me through a straw...