Support resources for families dealing with cancer and other serious illnesses

It is honestly heartbreaking to see what’s happening with their annual leave policies! It feels like everything just grinds to a halt, doesn't it? I wish it were at least that simple when you're dealing with an illness. To all the fighters out there, you are absolutely right. Who can we even direct our anger toward when they've spent so much time dragging us along like this?
But here we are—we finally dropped off the tissue sample at Salat last Wednesday, gave them a little nudge over the phone, and the results are actually ready today. We’re heading in to pick them up tomorrow, and then we have our 1:00 PM appointment with the doctor at Salat.
We have waited for such a long time, and now that the moment is here, we are gripped by this massive, overwhelming fear of whatever the diagnosis might be.
There’s no other way forward; we finally have to face this head-on and start the fight.

Melissa Stewart said:It is absolutely infuriating how they handle annual leave! It’s like the whole world just grinds to a halt. If only they showed that same level of urgency when someone is actually sick! To all the fighters out there—you are spot on. Who are we even supposed to be angry at? They’ve kept us hanging in limbo for so long.
But here’s the update: we finally dropped off the tissue sample at the Salat clinic last Wednesday, poked and prodded them with phone calls a few times, and the results are ready today. We’re heading in to pick them up tomorrow, and then we have our 1:00 PM appointment with the doctor over at Salat.
We waited forever for this moment, but now that it’s here, we’re feeling this MASSIVE wave of fear regarding the diagnosis.
There’s no avoiding it anymore; we finally have to face the music and start the fight.

Exactly. Hang in there—everything is going to work out.

I remember reading in some previous threads that you all were out at Central Park in mid-July signing that petition, and slyseal28 mentioned that you could actually request the petition form via email. If that’s still an option, please, could you send it over to anita.kukuruzovic@gmail.com or anita_pz@gmail.com?
Even though I'm just one person dealing with a tiny bit of DA, I am fully committed to going door-to-door, town to town, and apartment to apartment. I can't sit idly by after hearing that disgraceful comment from that monster at Medicare about how certain patients just have to die. Of course, he certainly wasn't talking about his own family or those "cowards" sitting in Congress.
Forgive my language, but I am absolutely livid. I'm still relatively new to all of this, and it's honestly terrifying to realize I'm only just now discovering the horrifying information that some of you have been forced to carry for years.

Melissa Stewart said:I was reading through some older posts and saw that you guys were out at Central Park in mid-July signing that petition, and slyseal28 mentioned you could actually get the form sent over via email. If that’s still an option, please, could someone send it to anita.kukuruzovic@gmail.com or anita_pz@gmail.com?
Even though my DA status is pretty minimal, I am prepared to go door-to-door, town to town, and apartment to apartment. I can't sit idly by after hearing that disgraceful comment from that monster over at Medicare—suggesting that certain patients just need to die. Of course, his precious little statement obviously wouldn't apply to his own family or those "cowardly" politicians sitting in Congress.
Forgive my bluntness, but I am absolutely livid. I’m a "newcomer" here, and it’s terrifying to realize I'm only just now discovering the heavy truths that some of you have been carrying for years.

Go to the website
Patient advocacy group "FOR A NEW DAY"
And you'll find the petition form right there.

Thank you so much! I’ve been such a scatterbrain lately because I actually already visited that page and signed myself up. I think I've just been digging through way too much information over the last two weeks, and now my brain is honestly a bit fried from trying to keep track of everything I've read.
I just finished printing everything out, and I am officially hitting the ground running starting tomorrow.

Hi everyone,
If anyone happens to be looking for Imlay injections (specifically the Wella-Iscador series 0, 1, and 2), please feel free to send me a private message. We actually sourced these from Germany—it cost us about $330, if I recall correctly. Honestly, we’ve just been buying whatever we hear good things about, and now I find myself staring at a medicine cabinet so full it's almost overwhelming—especially since we don't exactly have forever to get through everything! I would be more than happy to trade these injections for 10 bottles of natural propolis, mostly because I can't find a reliable source for it here in Canada, and I’ve already started giving some to my mom. Based on my math, those 10 bottles of natural propolis would be worth roughly $383.
There’s been quite a bit of discussion about Imlay on this forum before. The way people typically use them is by following a schedule—for instance, taking series 0 on Monday, series 1 on Wednesday, and series 2 on Friday. Each series comes with 7 injections, so having these three boxes should cover you for about two months of treatment. They are great for boosting the immune system and are noted for their anti-tumor properties—though apparently, they work even better when paired with enzymes and selenium. At least, that’s what I’ve gathered from my research on Imlay, so if anyone is interested, please reach out!🙂

Melissa Stewart said:Thanks so much! I’ve been such a scatterbrain—I actually already visited that page and signed myself up. I think I’ve spent way too much time digging through everything over the last two weeks, and now my brain is just mush from all the reading.
I just printed everything out, so I'm officially moving into action mode starting tomorrow.

That's great. Just get moving; we're always stronger when we take action rather than just sitting around.
Best,

Could someone please let me know where I might be able to consistently find KRS constant regenerative agent?

Hey everyone!!

Can someone please explain to me what a red prescription actually is?

My stepfather unfortunately lost his battle today. The only small comfort is knowing he didn't suffer for long. Now we find ourselves wondering if he could have dug deeper to find the strength to keep fighting, but that's just how it went; he simply lost his will and surrendered to fate. He wouldn't allow us to try and pull him out of that lethargy. I want to extend my deepest thanks to Melissa Kim45 and Agna for their incredible support, and of course to all the other members here who helped us with their advice. I will continue to follow this community, and if I am able, I will try to offer some advice of my own.

Kimberly Green23 said:My stepfather lost his battle today. Honestly, the only silver lining is that he didn't suffer through a long, drawn-out struggle. We could sit here all day debating whether he could have dug deeper or found more strength to fight, but that’s not how it works—he just ran out of will and surrendered to fate. He wouldn't let us pull him back from that state of lethargy. I want to say a huge thank you to Melissa Kim45 and Agna for standing by us, and of course to everyone else on this forum who reached out with advice. I'll be keeping up with you all, and if there's any way I can return the favor with some advice of my own, I will.

I am so sorry, Kimberly Green23😢. Please take comfort in knowing that you did absolutely everything within your power.

Kimberly Green23 said:My stepfather unfortunately lost his battle today. The only small comfort is that he didn't have to suffer through a long struggle. We could spend forever debating whether he could have dug deeper to find more strength, but that's not how it works; he just reached a point where he lost the will to fight and simply let go. He wouldn't let us pull him back from that state of lethargy. I'm so incredibly grateful to Melissa Kim45 and Agna for all the support, and of course to everyone else in this community who helped us out with their advice. I’ll be keeping up with you all, and if there's any way I can offer some helpful insight along the way, I certainly will.

Don't mention it, dear Kimberly Green23. Hang in there. 🙂
I am certain you did everything humanly possible, and I'm sure he fought as hard as he could in his own way—you know exactly what I mean.

Kimberly Green23 said:My stepfather unfortunately lost his battle today. I suppose the only small comfort is that he didn't suffer for too long. We could probably sit here and debate whether he could have found more strength to keep fighting, but maybe he just reached a point where he couldn't anymore; he simply lost the will and surrendered to fate. He didn't really let us try to pull him out of that lethargy. I'm so incredibly grateful to Melissa Kim45 and Agna for all their support, and of course to everyone else on the forum who helped us out with their advice. I'll keep following along, and if I can, I'll try to offer some advice to others too.

I am so sorry. Please accept my deepest condolences.

Betty Sanchez82 said:Can someone please tell me where I can actually find some KRS constant regenerative agent??

Maybe try reaching out to them:
http://www.magicus.info/hr/magicus/tekst.php?id=612
You'll find some phone numbers listed right at the bottom.

I don't have any firsthand experience with it myself, honestly; I just stumbled upon this online and saved it somewhere, though I've never actually given it a shot.

Kimberly Green23 said:Sadly, my stepfather lost his battle today.

I am so sorry. My deepest condolences. 😢

Amy Hayes28 said:Hey everyone!!

Can someone please explain what a red referral actually is?

🤷
I was just going through my mom's medical paperwork for her appointment in Jordanovac—I always make sure to keep those files organized at home just in case of an emergency, because you never know when things might go sideways—and I noticed everything her primary care doctor wrote down is on these bright red referral forms.

Melissa Kim45, you doing okay? How’s your mom holding up?

Things are pretty rough on our end, as usual.
We’re constantly fighting with this nursing home; their service is absolutely pathetic considering how much they charge us.
It feels like we're just tilting at windmills here, wondering if Mom even deserves this after everything she’s been through with her illness and all the bullshit...

My heart goes out to you all. Please accept my deepest sympathies.

We received the PhD pathology report today (from Prof. Dr. Sven Viggers):
The histology shows irregular connective tissue fragments interwoven with a tumor composed of small atypical cells featuring hyperchromatic nuclei and scant cytoplasm, mostly arranged in irregular clusters. Some of the 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 was strongly POSITIVE for CD-99, but negative for NSE, S-100, EMA, and cytokeratin.
The findings primarily point toward Ewing sarcoma.
RT-PCR genotyping for EWS/FLI-1 came back NEGATIVE, though that doesn't rule out the diagnosis above.

I honestly can't believe this isn't definitively settled yet—it's still just a "subtype."
I was searching online and saw that the histogenesis of Ewing sarcoma hasn't been fully determined, so I guess it really isn't a straightforward thing to pin down.

Our orthopedic tumor specialist (Dr. R. Kolundžić) referred us to Dr. Šantek over at Mayo Clinic for chemotherapy.
Now we need to get a pelvic CT scan and a bone scintigraphy with CT.
Once the oncologists have finished their assessment, we’ll have to head back to the orthopedic surgeon to discuss pelvic reconstruction (removing the affected bone).
For the imaging, they recommended we go through Mount Sinai, so does anyone happen to know what the typical wait time is there?
We could always opt for a private CT scan, but I'm not sure if there are any private clinics that offer bone scintigraphy.

Thank you!

I am so incredibly sorry for your loss. Please accept my deepest condolences.

Today we finally received the pathology report from Dr. Sven Viggers:
The histology shows irregular connective tissue fragments interlaced with a tumor composed of small atypical cells featuring hyperchromatic nuclei and scant cytoplasm, mostly organized in irregular clusters. Some of the tumor cells show necrotic changes. These tumor cells are predominantly round to oval with irregularly distributed chromatin and no prominent nucleoli. Immunohistochemical testing of the tumor tissue was strongly POSITIVE for CD-99, while remaining negative for NSE, S-100, EMA, and cytokeratin.
The findings primarily align with a diagnosis of Ewing sarcoma.
RT-PCR genotyping for EWS/FLI-1 came back NEGATIVE, though this doesn't rule out the aforementioned diagnosis.

I honestly can't believe they still haven't reached a definitive conclusion—it’s just another "subtype" situation.
I was doing some digging online and found that the histogenesis of Ewing sarcoma hasn't been fully determined yet, which I suppose explains why pinpointing it isn't so straightforward.

Our orthopedic specialist (Dr. R. Kolundžić) referred us to Dr. Šantek over at Kaiser Permanente to get started with chemotherapy.
We need to schedule a pelvic CT scan and a whole-body bone scintigraphy with CT.
Once the oncologist finishes their evaluation, we have to head back to the orthopedist to discuss pelvic reconstruction, which involves removing the affected bone.
For the imaging, they recommended using the Vinogradski facility, so does anyone happen to know what the current wait times are looking like there?
We could always opt for a private CT scan, but I’m a bit lost regarding the scintigraphy—does anyone know if there's a private clinic where we could get that done?

Thank you all!

brightgardener8 said:Melissa Kim45, you doing okay? How’s your mom?

Things are pretty much always rough on our end.
We're constantly struggling with the care facility and their mediocre service, which they charge an absolute fortune for.
It feels like a constant uphill battle against the wind, and I find myself wondering if Mom is even the main character in this story anymore—if after everything she's been through with her health, she really deserves to be dealing with this too...

It's probably the exact same situation you're in. 🙂

Mom, man, it's a struggle just to get a single spoonful in her. We've had to resort to using a syringe for soups and liquids just to make things go smoother. Though, in these last few days, she's actually willing to take a little something by mouth; there were those couple of days where she barely ate anything at all, and we honestly started to panic.

We've spent a lot of time chewing on this idea. A decent assisted living facility costs a few thousand extra dollars, which is basically what we're paying for eighteen-hour daily care anyway. When you tally up all the expenses, there isn't that massive gap in price. There are patients who simply can't stay home, but my mom still can. Or at least, I think she can. Changing diapers, applying creams, bathing, feeding, changing her shirt five or six times a day, brushing teeth—we handle all of that ourselves.
I don't know, after everything, it’s just exhausting for everyone involved, both for us and for them. It seems to me like the only real deciding factor is whether someone can actually be cared for at home, or if the risk is just too high because of things like feeding tubes, IV lines, catheters, and those potential emergency complications where we’d just be sitting there helpless.
Another thing is that back when Mom could still move her hands and feet, she was impossible, and we were so terrified they’d overmedicate her or restrain her (we went through that whole ordeal twice), so we ended up pulling near-constant day and night shifts ourselves. You can never get that time back.

For now, we're just taking it one day at a time, but I’m constantly hitting myself with a thousand questions. Is it being too rough or overdoing it sometimes when we lift her or use the wheelchair—which we call her "taxi"😁 to get from the armchair to the bed—is it torture? What happens if a wound opens up somewhere? Does she really have to have that one pudding pushed into her crumb by crumb over the course of an hour (and losing my cool ten times in the process)? How much are we forcing this? Who knows what kind of movie is playing in her head; one minute her eyes are closed, and the next they're wide open, and it scares the life out of me.

It’s just heavy, all around. 😢