Support for families dealing with cancer and other serious illnesses (Part II)

Susan Watson3 said:My little guy had his surgery today, performed by Prof. Anko Antabak. Basically, they had to open up his chest—they couldn't get the whole thing out, but they managed to shrink the tumor down significantly. Now we're just waiting on the tissue samples for further testing...

I'm crossing my fingers that the next rounds go just as well. 🙂

Susan Watson3 said:When I asked what they thought caused my son's tumor, the professor told me... it’s possible it started when he was just a baby or a toddler, during the cell division process where some cells essentially turned into tumor cells. He believes we're looking at connective tissue cells in his case. The tumor might have been caught much earlier if, for instance, my son had developed pneumonia, because it might have shown up on an X-ray then...

Good luck! Please keep us posted once you have more info—maybe then we can offer some helpful advice.

We finally got the diagnosis today.
Nodular sclerosis Hodgkin's lymphoma.
Chemo starts this Friday. If anyone has tips on how to make the actual treatment easier—or what helps during recovery later on—I'm all ears.
Right now, I've got him on raw propolis, aronia berry juice, freshly squeezed orange juice, and a beet-carrot-apple blend.

Has anyone here tried using these medications for liver metastases?

VOTALEK plus and AnosoHip

https://unavitapharmacy.com/anosohip...v=982494d74c59

Susan Watson3 said:We finally got a diagnosis today
it's Nodular Sclerosis Hodgkin's lymphoma.
We start chemo this Friday. If anyone has tips on what might help make the treatment itself easier to handle, or how to bounce back during recovery, please let me know.
Right now, I've been giving him raw propolis, pure aronia juice, freshly squeezed orange juice, and a blend of beet, carrot, and apple juice...

Actually, this is pretty good news in the grand scheme of things. We're looking at a malignancy that has about a 90% cure rate. Wishing you all the best with the upcoming treatment.

You can check out some advice here on managing side effects: https://www.oncology.org/chemotherapy-side-effects

crimsoncanyon3 said:Actually, this is good news. We're looking at a malignancy with about a 90% cure rate. Good luck with the treatment.

If you want some tips on managing the side effects, check this out: https://www.oncology.org/chemotherapy-side-effects

Thanks a lot. I'll go see what it says.👍

Susan Watson3 said:We finally got the diagnosis today...
It's Nodular Sclerosis Hodgkin's lymphoma.
Chemo starts this Friday. If anyone has tips on how to make the actual treatments easier or what helps with the recovery afterward, please let me know...
Right now, I've got him on raw propolis, aronia berry juice, freshly squeezed orange juice, and a beet-carrot-apple blend...

If you need any advice or just want to chat, reach out. I actually went through Hodgkin's myself. If I remember correctly, I even had tumors in the exact same spot as your son... they were so massive that surgery wasn't even an option at the time.

Hey everyone.

So, we’re officially diving into the fight against glioblastoma. My mom (she's 49) just got diagnosed. They managed to get the whole thing removed a month ago. We finally have an appointment to map out her radiation treatment for September 10th—which feels like ages away since we still have four weeks to kill.
We’re doing everything through the Ilica Tumor Clinic—has anyone here dealt with them before? What was your experience like?
The wait until the oncology starts feels way too long... though the doctors already gave us the usual line about how backed up they are.

I haven't been able to read through this entire forum because honestly, all the stories here just end up making me incredibly angry. It's hard to stay level-headed and try to be a pillar of strength when everything feels like it's falling apart. This whole situation is just hitting me so hard; I can't even wrap my head around what this diagnosis actually means. I'm just pissed off at God, the universe, everything.
What hurts most is knowing that the bulk of this weight is going to fall on my dad and my sister who's still living at home.

I’m spiraling down some rabbit holes, reading everything I can find. Looking into supplements, searching for alternative treatments, reading about RSO cannabis oil, teas from Zepce, and those Myko san mushrooms...

Please, if you have any experiences or advice, let me know.

I had my radiation over at Jordanovac and man, the crowds there are unreal. You wouldn't believe it, but from 8 AM until 7 PM every single day of the week, it’s just packed with people waiting for radiation... Even getting an appointment for planning takes forever. I totally get that when you're dealing with this stuff, four weeks feels like an absolute eternity, but there's just no way to change it...

Hey there! We just got a recommendation for some Graviola juice... but when I search online, I see a bunch of different kinds out there. Is there one specific brand or type that's actually better than the others? Or maybe some to stay away from?

Nicole Jackson4 said:Hi everyone.

We’re gearing up to fight glioblastoma. My mom (49 years old) was just diagnosed. They managed to get the whole thing removed a month ago. We finally got an appointment to plan out her radiation oncology treatment for September 10th—which is still four weeks away.

We’re being treated at the Ilica Tumor Clinic—what has your experience been like there?

Waiting this long to start oncology feels like an eternity... though they did warn us about the backlog.

I haven't been able to read through this entire forum because honestly, all these stories just crush me. It makes it so much harder to stay strong and try to be the pillar my family needs right now. This whole situation is incredibly heavy, and I'm struggling to wrap my head around what this diagnosis actually means. I'm just furious at God, at the universe... everything.

What hurts most is knowing that the heaviest part of this burden is going to fall on my dad and my sister who lives at home.

I'm constantly reading, searching for supplements, looking into alternative treatments, reading up on RSO cannabis oil, herbal teas from Zepce, and Myko San mushrooms...

Please, share any experiences you have.

Most of my own experiences are documented in the first archived section of this thread.
If you have a specific question, feel free to shoot me a private message.

Hi there.

After spending two months bouncing between hospitals because my 8-year-old was dealing with intense lower back pain, we finally got a diagnosis: Langerhans cell histiocytosis. We've started chemo.
If anyone has any advice on what to watch out for, things to buy, dietary changes, or just general info... I would be incredibly grateful. 🙏😔

What is the best way to truly show up for someone fighting cancer?

https://www.onkologija.net/post/kako...im-bolesnicima

Melissa Peterson35 said:Hi there,

After two months of bouncing from hospital to hospital because of intense lower back pain, my 8-year-old was just diagnosed with Langerhans cell histiocytosis. We've already started chemotherapy.

Any information at all on what we should watch out for, things to buy, dietary changes, or general advice... we would be incredibly grateful.

Ugh, that is a truly rare diagnosis. Even though, if I recall correctly, it isn't technically classified as cancer, it behaves very aggressively, which is why they treat it with oncology drugs. From what I understand, kids over age 2 whose condition is limited to the skin, lymph nodes, or bone have a really strong prognosis.
The most critical thing is ensuring they are treated by someone with actual experience in this.
Regarding immune boosters, whatever you decide to give, stay away from them immediately before, on the day of, and the day after chemo sessions. Use them only during the intervals between cycles.
Try scouring some foreign forums; there aren't many people with firsthand experience dealing with this here in the States.

For anyone interested in how marijuana affects patients fighting cancer, here is an objective article built entirely on scientific facts.

https://www.onkologija.net/post/mari...-uPdTAzXTcgjF0

Hey everyone, especially those of you supporting someone through a cancer battle. I’ve mostly just been lurking here, but I think it might help to finally vent a bit about what we're going through—my husband is fighting lung cancer. It’ll be exactly one year this coming October since he had a random lung scan and they found a tumor. We’ve been through four rounds of chemo, some palliative care because they couldn't remove the lung lobe since the tumor is pressing against his vena cava, and 24 radiation sessions. Now, three months after his last radiation, we just did a PET scan, and honestly, I'm terrified waiting for the results. He’s started complaining about shortness of breath, and I feel completely helpless. When he’s in pain, I give him Zaracet and he settles down, but when he can't breathe, I'm at a loss. I'm constantly fighting against his weakness, his lack of appetite, the occasional falls, and all of it. He’s 74 and I’m 70; we aren't exactly kids anymore, but I'd really love for us to have a little more time together. Sorry for the long rant, but it feels a bit better sharing this with people who get it rather than just keeping it all bottled up inside.

Dear mistyviper53, my dad also battled lung cancer. Regarding his appetite, he was prescribed this high-calorie supplement called Megostat to kickstart things, and he also relied on drinks like Ensure, which basically act as a meal replacement to help maintain weight. Thanks to those, he didn't lose any weight at all during his illness. We were able to get everything via prescription, but from what I understand, buying it over the counter can be incredibly pricey.
Regarding the breathing difficulties, he used a Ventolin inhaler along with something else, though unfortunately, I can't recall the specific name—I've pushed quite a few of those medical details out of my mind...

Hey everyone.

I've started reading the first part, but I just can't seem to find the time.

My mother was diagnosed with confirmed Grade IV IDH-negative glioblastoma (wild type) back in February. She underwent surgery at Rebro Hospital, but a follow-up brain MRI just one month after the procedure shows tumor progression.
Had a second surgery in March. One month after that, started oncology treatment combining radiation and Temodal—totaling 30 sessions at Osijek University Hospital.
The recommendation came in: get a brain MRI eight weeks after the last radiation session. The results show tumor progression. The neurosurgeon thinks surgery is an option, but there's a catch—it has spread to a position where operating would leave her paralyzed and unable to speak. Because of that, both she and the neurosurgeon have decided against a third surgery. It’s a tough call, but they've made their peace with it.
The oncologist just finalized the PCV protocol.

Does anyone have any insight on this? Has anyone here actually gone through this specific protocol before?
I can't seem to find much useful info online.
Her doctor was blunt with me. She admitted she'd never seen anything like this before and had absolutely nothing to tell me.

Thanks, everyone.
Sorry for the long post.

Chloe Bennett5 said:hello everyone!

I started reading the first part, but honestly? I just can't catch a break. Life's getting in the way and I can't seem to find the time.

So, my mom got hit with a confirmed grade IV IDH-negative glioblastoma (wild type) back in February. She had surgery at Johns Hopkins Hospital, but then just one month later, the follow-up brain MRI showed the tumor is already progressing. Just great.
Had my third surgery back in March. Then, about a month after that second round, they started the chemo combo—radiation plus Temodal. Did a total of 30 radiation sessions over at the Mayo Clinic in Indianapolis.
So, here’s the deal. The recommendation came down to get a brain MRI eight weeks after the last round of radiation, and yeah... the results are in. It shows tumor progression. The neurosurgeon thinks a second surgery is an option, but there's a massive catch. It’s spread to a spot where if they go in now, she’ll end up paralyzed or unable to speak. Because of that, both she and the neurosurgeon have decided to call it quits on a third surgery. They're just not going to do it.
So, the oncologist just decided on the PCV protocol.

Anyone out there have any info on this? Has anyone here actually gone through a protocol like this before?
I can't find much of anything useful online. Seriously, it's like a total dead end.
Her doctor straight up told me she’s never seen anything like this before and didn't have a single clue what to tell me.

thank you all
Sorry about that long-winded post.

Hello, how old is your mom?
My mom’s dealing with wild type too... It comes back fast, way too fast. Honestly, I'm terrified that we're going to be hit with that protocol sooner rather than later, so I really need to get the lowdown on how it all works.
So, I heard that glioblastoma is unfortunately even more aggressive when it hits younger people... That's why I was asking about age.
Good luck to you guys.

Nicole Jackson4 said:Hello, how old is your mother?
My mom also has the wild type... It recurs quickly, too. I'm afraid we'll be facing that protocol soon ourselves, so I'd like to know more about it as well.
From what I've heard, glioblastoma is unfortunately even more aggressive in younger people... That's why I'm asking about her age.
Good luck to you.

Thanks, Nicole Jackson4.

Mom just turned 60.
It all moves incredibly fast. We understand the diagnosis, but it's just hard.
Since her first hospital stay, she's been taking noni and raw propolis; she started using them while still inpatient. Because of that, she's handled the radiation and chemo quite well, and her blood counts have remained consistently good.

Good luck to you, too.

I'm hoping someone will chime in with information regarding that PCV protocol.