Support resources for families dealing with cancer and other serious illnesses

Everything changed after January 1st with the new healthcare reforms.. now when you go for any specialist appointment (especially oncology ones), everything is handled through a centralized computer database. You get a printed appointment slip with the hospital's header—it's all automated now—and the wait times have actually gotten longer...

As for how they prioritize patients, a department head told me yesterday that while there isn't an official list, priority is being given to younger people... especially since the changes on January 1st took effect.

That's what I was told yesterday.

So, I’m asking—is this actually true?

here's some info on that

http://pollitika.com/liste-cekanja-r...iti-dostupnost

I mean, I don't get it, because back in February, we headed over to Jordanovac after just calling the doctor and working things out. He told us to swing by in a couple of days. My dad was actually transferred directly from the local general hospital to Jordanovac and stayed there for his treatment. Then my sister's father-in-law—and man, there were SO many people from our neck of the woods at Jordanovac at the exact same time this past February—he also got a direct transfer to Jordanovac and stayed there too. They found cancer, but since he’s in pretty rough shape overall, the family begged them to skip more testing and just let him come home. It wasn't even a question about whether they'd give him chemo... so I really don't follow what you're saying here.
In my hometown, there are tons of people dealing with cancer. And almost everyone goes to the Mayo Clinic for their treatments. I haven't heard a single soul mention being put on some waiting list for surgery or chemo, especially since we're talking about life-or-death stuff. Just looking at this year—as far as I know, and I talk to pretty much everyone, everyone was admitted immediately and treatment started right away.
Once someone gets a cancer diagnosis, I assume everything just moves automatically in coordination with the doctor. There shouldn't even be such things as "waiting lists" for this kind of thing. Like, what would that even mean?
As far as I can tell, waiting lists are for specialist checkups and routine tests. Once a malignancy is confirmed, everything moves fast and automatic. No delays, no sitting around. I know this from my own family and from the experience of the huge number of sick people from my area.

Melissa Moore39 said:Is anyone else dealing with this? Does anyone have a loved one fighting Non-Hodgkin Lymphoma? I just need some advice, some comfort... anything at all...

Melissa, things don't always look as bleak as they seem at the start. A year ago, I was diagnosed with Non-Hodgkin Lymphoma, Stage IV—the final stage. After undergoing six rounds of chemotherapy and eight doses of Rituxan (a targeted therapy), the disease went into remission. I am living my life normally now, holding onto the hope that it won't return, which is exactly what my doctor predicted.
Stay brave. Keep a strong spirit in this fight against illness.

Michael Newman3 said:Melissa Moore39, things don't necessarily have to stay as bleak as they seem at the start. About a year ago, I was diagnosed with Non-Hodgkin Lymphoma—Stage IV, the final stage. After undergoing six rounds of chemotherapy and eight doses of Rituxan (a targeted therapy), the disease went into remission. Now, I’m just living my life normally, hoping it stays away, which is what my doctor expects will happen.
Just stay brave and keep a strong spirit while fighting this thing.

Thanks,

So, how exactly did your illness present itself? I mean, what kind of symptoms were you dealing with—was it multiple enlarged lymph nodes or something else entirely? And where did you go for treatment? Did you perhaps incorporate any other supplements or alternative medicine into your regimen?

Susan Diaz91 said:
I’d like to ask some of the knowledgeable members here a few things:

1. Is it actually true that you can wait months just for an initial consultation and processing at an oncology department? I heard that ever since this new centralized scheduling system kicked in, everything has slowed down—apparently, this has been the reality since January 2009.

2. Is there any truth to the idea that people are waiting for chemotherapy? Specifically, are there priority lists where younger patients get bumped ahead of others? (If that's the case, what's a realistic timeframe for my 71-year-old mother to actually get her turn)?

3. Is it true that Terceva will once again be reserved for "select" patients? Meaning, it won't be prescribed to everyone who needs it because Medicare will just allocate a specific amount of doses to a specific hospital and call it a day... leaving anyone who can't access it for whatever reason without their medication, regardless of what they are legally entitled to.

4. Is TERCEVA on the approved drug list as of March 1st? (Because if it isn't, I have no clue how we'll even get our hands on it.)

THANKS FOR THE HELP

Regarding Terceva, here is the current situation:

Changes are coming; we're going to start taking action.👍

Michael Newman3 said:Melissa Moore39, things don't always look as bleak as they do at the start. A year ago, I was diagnosed with Non-Hodgkin Lymphoma—Stage IV, the worst kind. After six rounds of chemo and 8 Rituxan (a targeted therapy), the disease backed off. Now I’m just living my life normally, hoping it stays away, which is what my doctor thinks will happen.
Just stay brave and keep a strong spirit while fighting this stuff.

Hey, how do you get ahold of that medication? And if you don't mind me asking, where did you go for treatment?

Melissa Moore39 said:Thank you,

What were your symptoms for DG disease specifically? Did you have multiple enlarged lymph nodes or something else? Where did you receive treatment? Were you using any alternative medicine or supplements as well?

The symptoms first manifested on my skin, looking somewhat like eczema. A tissue sample confirmed it was Non-Hodgkin Lymphoma, Stage IV (B-follicular). A CT scan also revealed a tumor on my spleen measuring 3cm. Fortunately, it hadn't spread to my bone marrow or the wider lymphatic system (which explains why I didn't have the typical swollen nodes).
I began chemotherapy immediately at the Mayo Clinic (six sessions, spaced 21 days apart). Alongside the cytostatics, I received Rituxan (eight treatments), which is typically administered to patients with B-cell lymphoma. Rituxan specifically targets tumor cells; it is quite an expensive medication, but if approved by the medical board, costs are covered by Medicare.
Regarding alternative preparations, I used them primarily to support my immune system. Every day, I consumed fresh beet juice (made with a juicer), noni, Beta-glucan (500mg), Royal Jelly (in powder form), and high-concentration probiotics. I tolerated the therapy remarkably well, with almost no side effects—just a few days of skin redness, a sore throat, and, naturally, hair loss.
Ultimately, the PET/CT scan showed no remaining traces of the tumor. My follow-up is in six months.
Since I haven't experienced any nausea, I still have some Setronon left over. I would be happy to give it to anyone who needs it right now, as it expires in two months (please send me a PM if interested).
If you have any further questions, I am available to help.
Best regards to everyone

Dana Baker37 said:Hello, how can one obtain this medication, and if I may ask, where did you receive your treatment?

Rituxan (Rituximab) is utilized in the treatment of certain types of lymphoma. It achieves very positive results in eradicating Non-Hodgkin Lymphoma when administered in combination with chemotherapy. It is included on the Medicare formulary; coverage is provided by Medicare once the hospital's medical board approves the drug based on the recommendation of the hematologist. I am aware that some patients have paid for the medication out of pocket (I am not entirely certain, but I believe an amount of $4333 was mentioned).
I received my treatment at a major hospital in New Jersey.
Regards

Michael Newman3 said:Rituxan (Rituximab) is used for treating certain types of lymphoma. It works pretty well at wiping out Non-Hodgkin Lymphoma when paired with chemo. It’s covered by Medicare, provided the hospital’s medical board approves it based on the hematologist's recommendation. I know some patients end up paying out of pocket—I think I heard someone mention a cost around $4333.
I had my treatment at Mayo Clinic.
Best,

Thanks!

This is such an important thread. Not many people want to open up about this, and even fewer truly get it unless they’ve walked through that same hell themselves.

My father underwent surgery just a month ago for colon cancer. As I sit here typing this, I can hardly wrap my head around the fact that it’s ME writing about this... things like this just don't happen to me. It's like 😢
It was caught by chance during a routine checkup—thankfully, it was positioned in a spot where it caused symptoms. Those two weeks leading up to the surgery were hands down the worst of my life. Just absolutely terrifying. And it hit harder because my uncle passed away from throat cancer only six months ago; it completely broke him in just two months. So, seeing Dad go into a coma... it was devastating.
The surgery went okay, but the doctors found more cancer than they initially anticipated. They had to remove part of his bladder and some lymph nodes; most of the mass is gone now, though you can never truly say everything is out.
Anyway, we made it through the worst of it. He’s doing better, and they cleared out as much as possible. Now, he's heading into chemo to target those remaining traces, those stray cells... whatever is left.
He’s riding this rollercoaster between total depression and sudden bursts of optimism, while Mom is stuck somewhere between panic, relief, and pure madness... As for me, I’m acting like I’m fine, mostly because no one can see how much I'm crumbling inside. I am right on the edge. Every single day is just a cycle of listening to him, then listening to her, then listening to what this doctor says or what that specialist suggests. I’m constantly buying books, digging through the internet looking for any kind of optimistic prognosis, and staying glued to the phone because I have to be ready...
But I won't vent too much. Honestly, just being able to write all of this somewhere where there are people who actually understand what I'm going through means the world to me. 🙏

Back when I was eight months pregnant, my doctors realized the baby wasn't developing quite right. All the long bones—the femurs and humeri—were coming up short. After the delivery, they confirmed it was a bone dysplasia issue, though even they couldn't pinpoint the exact type. Does anyone know which specialists or clinics I should reach out to for a second opinion or a more specific diagnosis?

Can anyone tell me what the early warning signs of uterine cancer are?
Thanks.

Lisa Wilson60 said:Back when I was eight months pregnant, doctors realized my baby wasn't developing properly. All the long bones—the femurs and humeri—were shortened. After I gave birth, they confirmed it was a condition right then and there. They couldn't even specify which type of skeletal dysplasia the baby has. Does anyone know who I can reach out to for advice or a specialist who actually deals with this?

Find a solid orthopedic specialist...

What city are you in?

Hey everyone!
My dad had surgery for malignant prostate cancer three weeks ago. He’s recovering okay... a little slow, but he's getting there.
He was discharged from the hospital yesterday and will get his discharge papers tomorrow, so I have no clue what medications the doctor is going to prescribe. Like anyone else after surgery, he’s lost some weight and feels pretty weak.
I'm wondering if any of you know which vitamins are best for boosting the immune system after an operation like this. He needs to get his strength back up before he starts radiation therapy.
I did some digging online and found: AHCC (which you can find in US pharmacies) and Orthomol Flavon m (available in German pharmacies). Does anyone here
have experience using these vitamins?

Once he's recovered, Dad will need to go to a hospital in Washington, D.C. for radiation, so I was wondering—do patients like him have access to ambulance transport, or do they have to drive themselves into Washington, D.C. every day from out of town?

I'm totally new to all of this, so I'm just trying to figure things out.

Thanks!
Best,

Jason Torres5 said:Basically, we made it through the worst. He’s doing better, they cleared out most of it, and now it's just chemo to mop up whatever traces or cells are left behind.
He’s bouncing from total depression to pure optimism, and she’s stuck somewhere between panic, relief, and going crazy... I’m holding it together okay, mostly because nobody can see the chaos happening inside me. I’m honestly right on the edge. Every single day it’s him, then her, then what this doctor says, then what that specialist says—I’m constantly buying books, digging through the internet looking for any optimistic prognosis I can find, and staying upbeat just because I have to.
Not to vent too much, though; it honestly helps just being able to write this all down somewhere where people actually get what I'm going through. 🙏

I’m in the exact same boat. My dad is recovering from prostate surgery. They said they got everything out... that he won't need chemo, just radiation. Still, I’m scouring the web... looking for vitamins to help him regain his strength, improve his blood work, and get him ready for the radiation sessions.

Regrettably, it appears I am destined to join your ranks. I recently started a thread here regarding my nephew’s battle with rhabdomyosarcoma, which was already a devastating blow to our entire family.
And now, my mother—who is only 51—has informed me that she has breast cancer. We didn't even get a chance to process it properly; I had to leave because I live in Washington, D.C., rather than with them, and she is currently sidelined with a cold. As it turns out, she has known about the cancer for some time now. (The other day, she was being quite firm about driving me to a private specialist to deal with my own persistent endometriosis issues, and it only dawned on me today that she likely dropped that news on the very same day she found out, or perhaps just a few days later.) She chose to stay silent simply because of my exams.
I don't have all the specifics yet—she hasn't told my sister, so we spoke in hushed tones and kept it brief—but I know it is Stage II and likely surfaced about a year ago. Her breast has become visibly deformed by the tumor, and for an entire year, doctors were merely applying ointments to her eyes under various pretenses, while the physician was incredibly reluctant to even issue a referral for an ultrasound or a biopsy. 😠
She is scheduled for surgery this Friday; they are going to perform a mastectomy, followed by chemotherapy, radiation, or whatever else the medical team deems necessary. She will be treated at the MD Anderson Cancer Center, and for the moment, she is satisfied with the level of care and the way the staff treats her. According to her, there are no metastases, which is, if nothing else, a solitary silver lining in this nightmare.

At this precise moment, I cannot determine if my fury is directed at her for withholding the truth, at her failure to seek a biopsy sooner, at my own failure to force her hand, at the sheer incompetence of her doctor, or perhaps at my own lack of medical knowledge to offer any meaningful guidance.
I am oscillating between tears and a desperate sort of optimism, making plans one minute and feeling utterly adrift the next. Quite frankly, I am at a loss. Coming here felt like the only thing that might make sense, so I reached out. I have been reading stories from others who have endured similar ordeals, though I lack the emotional fortitude to read them thoroughly right now.
I find what little solace I can in the fact that breast cancer is more often cured than it is fatal.

And thank you, Angela Wright, for the recommendation regarding that book mentioned a few posts back; I believe it will be the first thing I purchase for her.
On a more immediate note, I have several questions: What does the recovery look like following the surgery? How long will her hospital stay be? What is the most effective way for me to support her? What should I realistically expect? Anything at all would be appreciated.

Thank you, everyone.

Hello everyone, I hope you are all doing well. My wife was diagnosed with ovarian cancer (specifically small cell carcinoma of the ovary) about 15 months ago, and since then, she has undergone two surgeries and completed 13 cycles of chemotherapy. Just three days ago, an ultrasound revealed that her lymph nodes have enlarged again. It hasn't even been three months since her last round of chemo, and it’s been nine months since her second surgery. Now, it looks like she will be heading back into surgery, followed likely by more chemotherapy. I was wondering if anyone here has navigated this exact path before—specifically, what kind of chemo protocols or specific medications were prescribed? Additionally, has anyone found certain supplements or medications helpful during this process? Also, did anyone receive radiation therapy alongside their chemotherapy? Thank you so much, and my best wishes to you all.

stormymaker24 said:It looks like I’ll be joining your ranks. I recently started a thread here about my nephew’s rhabdomyosarcoma, which was already a massive shock for the whole family.
And now, my mom (51) just told me she has breast cancer. We didn't even get a chance to have a real conversation about how it all went down; I had to head out (I live in Washington, D.C., not with them), and she’s currently under the weather with a cold. As it turns out, she’s known about the cancer for a while now (one day she called me incredibly determined, insisting on taking me to a private clinic for a checkup regarding my endometriosis that won't quit acting up—it only hit me today that she likely called me on the very same day she found out, or maybe a few days later) but she kept it from me, simply because of my exams.
I don't know all the details yet; she hasn't told my sister either, so we spoke in hushed tones and kept it brief. All I know is it's stage two, and it likely surfaced about a year ago. Her breast is visibly deformed from the tumor, and for a year, they were just applying ointments to her eyes claiming that was the issue, until her doctor finally deigned to give her a referral for an ultrasound and a biopsy. 😠
She’s heading in for surgery this Friday—they're going to perform a mastectomy—and then it’s chemotherapy and radiation, whatever else is necessary. She’s going to the MD Anderson Cancer Center, and for now, she’s satisfied with the care and how they treat her. According to her, there are no metastases, which is, I suppose, the one silver lining in this entire mess.

Right now, I can't tell if I'm angry at her for not telling me sooner, for not getting the biopsy earlier, for not forcing her to go myself, for her doctor being so incompetent, or for not knowing enough about the subject to actually say anything useful.
I’m oscillating between crying, feeling optimistic, making plans, and feeling completely lost... honestly, I have no idea where to turn. Posting here felt like it might make some sense, so here I am. I've been reading stories from others who have gone through similar things, though I don't quite have the strength to read them properly.
I find some comfort in knowing that breast cancer is more often cured than it is fatal.

And thank you, Angela Wright, for the recommendation on that book from three pages back—I think that will be the first thing I buy for her.
As for now, I have a few questions: what happens after the surgery? How long will she be in the hospital? What is the best way for me to support her? What should I expect? Anything at all...
Thanks, everyone.

A friend's mother was diagnosed with breast cancer two and a half years ago, with slight metastasis. After undergoing a mastectomy, she went through radiation and chemo.
Today, she is doing perfectly fine. She goes in for checkups every six months.
Don't hold it against your mother. She was trying to spare you the worry and thought it was the best way to handle it.
Just be there for her; there is a very high probability that everything will turn out okay. 😉

Lisa Mendoza said:Hi everyone. My wife was diagnosed with ovarian cancer (small cell carcinoma) 15 months ago. She’s already gone through two surgeries and 13 rounds of chemo. Just three days ago, an ultrasound showed her lymph nodes are enlarged again. It hasn't even been three months since her last chemo session, and she's nine months out from her second surgery. Now, they're looking at another surgery followed by more chemo. Has anyone here been through this exact situation? I'm curious about which chemo protocols (specific drugs) were used and if there are any supplements or medications that actually help. Also, has anyone done radiation alongside chemo? Thanks in advance.

I went through chemo for malignant ovarian cancer myself—Taxol and Carboplatin. I didn't take any pharmaceutical supplements; I just stuck to natural ways to support my body, like Aloe Vera. Regarding radiation, one doctor suggested it, but my oncologist was against it; he said I was too young to let them "fry" me (I was only 24 at the time). After five years, my lymph nodes swelled up and I had metastases in my liver. They put me back on the same chemo drugs, and honestly, it's been another five years since then and everything is fine now. It should stay that way, too. 🙂 Just stay optimistic, keep a positive mindset, keep smiling, and keep pushing forward!!! 🙂 🙂 🙂 🙂 Good luck!!