Posts by Karen Torres42

Hannah James76@
Hang in there and take care of yourself. Please look after your dad, too—I really hope you both find the strength to stay mentally grounded through this. I’ve been feeling like I'm stuck in a black hole for days myself, but if there's one thing I know, it's that just being by his side will help lift his spirits. Stay strong. I'm so sorry. I can't offer any medical expertise, but I did read somewhere that elderberry juice—specifically the black elderberry kind—can be really helpful for platelet counts. I don't want to give you false hope, but that's just what I've come across. Hang in there!

Just checking in to let you know we finally met with the oncologist and the surgeon. After the consultation, they decided we should move forward with chemo and radiation, but of course, now the waiting game begins again. Everything moves at a snail's pace here—and honestly, the delays are ridiculous! I get that people need vacations, but the bureaucracy in this country makes everything drag on way too long. To top it off, apparently the radiation machine broke down! Just our luck. If this were any other type of cancer, they wouldn't have even made it to the first round of treatment with all these setbacks.
The situation isn't great. Does anyone know why my dad has swelling on the side where the tumor is located? It seems to be on the lung area. There's visible swelling on the outside. They tell me it’s nothing serious, but honestly, I'm hyper-vigilant about every little change now—I feel like I'm looking at everything through a microscope.
Sending strength to everyone here and a thousand hugs to you all!

We finally made it to the oncologist. We can start planning the treatment now, though it sounds like we'll be stuck in the planning phase for a little while.
My dad is actually talking again—he’s been completely silent until now. I think speaking with someone who truly understands what he's going through really helped break the ice.
I can't tell you how relieved I am that someone is finally looking out for us. We spent five months waiting for absolutely nothing! Honestly, even if this takes another month, it doesn't matter. The main thing is that he's communicating again. I was starting to think we had already lost the battle on a psychological level—maybe those are just the stages of processing a diagnosis? A huge thank you to everyone here; I'll post more soon.
If anyone has experience using Nexavar, please let me know what it was like for you.🤷

Sorry if I’m just out here fishing for advice—I’m honestly lost. We have so many conflicting opinions right now (and none of them are coming from the actual oncologists), to the point where after four months, they want to redo the biopsy because nobody trusts anyone else's findings. It’s been five months since we first discovered the issue, and the whole thing feels like it’s dragging on forever. He hasn't even started treatment yet, but he's already dealing with shoulder pain. Is it normal for this process to take this long? Also, does anyone have experience with major chest surgery followed by radiation? Does that even work? How does the tissue actually heal up—can you even radiate an area like that? I know, I know, way too many questions... it's just that this is the only place I can ask. We’re still waiting for an appointment with an oncologist; we went to one specialist who basically told us it wasn't his department, so now we're stuck waiting for another one who will probably say the exact same thing! It's pure agony—not even just the illness itself, but these doctors!
P.S. We started him on some propolis.

We just got the PET-CT results back. Honestly, I'm at a loss. There are still spots on the bones—specifically the hip and the upper arm—and we already knew about the ones in the shoulder and the pleura. I just feel empty. I know things could have been much worse, but still. A tiny bit of hope is keeping me going, though maybe I’m just kidding myself. Part of me wonders if I should just give up too. We’ll see what the oncologist thinks once they weigh in. Right now, I just feel hollow. I don't even know how to be there for him.
Does anyone here know anything about using bisphosphonates as supportive therapy? If I understood the doctor correctly, that's the plan.😢

Angela Wright said:There was actually a study done at the Ruđer Bošković Institute regarding propolis—they showed some efficacy against malignant cells in vitro and suggested it might even help repair damaged DNA in certain ways...but obviously, it isn't a cancer cure, which is why it isn't sold as one. It’s actually quite good that they are very clear about that distinction when labeling it.
The thing about propolis—and I truly believe this—is that it protects against infections, which can be incredibly dangerous for people undergoing radiation and chemo. I'd stake my reputation on that. My mom was bedridden for a full year and a half, from the neck down, and she eventually passed away. Unlike other people I knew with the exact same diagnosis, she didn't die from the disease itself, but from an infection. Even toward the end, she never once developed a single pressure sore. Since then, I've been a huge advocate for using it.
A more recent example is my own experience when I had my baby at 28 weeks. He spent 40 days in the NICU and dealt with two serious infections. Those were cleared up in just a week because—alongside his prescribed medications—I started giving him heavy doses of pure propolis through my breast milk. Given how tiny he was and the nature of those infections, we were expecting a much longer stay in the incubator and on a ventilator.

We picked some up today; it was definitely pricier at the CVS Pharmacy, so we're going to try buying it directly next time. I never thought of it as a "cure" anyway—just something to support the body and provide extra strength during the process.
Could you tell me what dosages you gave your mom?
Can it help regulate digestion? He's having some trouble there right now.
Sending warm hugs to everyone.

ironsailor22 said:You don't really need an oncologist's permission for propolis—anyone can take it, healthy or sick, since it’s good for the whole body. My mom used it for a while to help her handle the treatment better, but she stopped once things took a turn for the worse because it just wasn't making a difference anymore.
As for his mental state—doctors aren't going to be much help there. You have to be the one to try and motivate him to keep fighting through your own positive attitude and energy. I know that's incredibly hard, but give it a shot.

Thanks for the support. Do you happen to know anything about the dosage for that propolis? He started taking it and now he's dealing with diarrhea, so I'm not sure who to ask if it's okay to continue. They actually switched him off it for a medication that pushed him to the opposite extreme—no more diarrhea, but now he's constantly bloated. It's a total war of nerves here. I finally found someone he’ll actually talk to; he wouldn't give me two minutes of his time today, yet he spent nearly half an hour on the phone chatting with this other person. I think I'll ask him tomorrow to give them a quick call so he might open up a bit. They were even talking about visiting the oncologist. As for me, all he'll tell me is that he doesn't want to eat anything.

Azzura
I found some support group in Chicago, but we're nowhere near there—and even if he were in Chicago, it would just be him and my mom, and they'd be totally lost. Those people never seem to move from their front porches. You know how it is? I need to keep digging to see if I can find something closer to us. And our family doctor? She's a piece of work. She told a patient with confirmed metastases that a CT scan involved too much radiation. Well, what's more important right now—the radiation or actually seeing where the cancer has spread?! Maybe we should just consult a crystal ball instead!!🤷

Does anyone have advice on how I can help my dad mentally? He’s spiraling right now—even though he hasn't actually sat down with an oncologist yet, nor have we. We’re trying our best to get him in front of a doctor, but they just keep bouncing us from one hospital to another, making things difficult at every turn. Honestly, I’m terrified we won't even make it to treatment, and he’s already so emotionally fragile. It feels like everyone else visiting him is just speeding up his decline—it’s like these visits are just a way for people to say their goodbyes prematurely. And we haven't even had a real conversation with a specialist yet. Maybe this is the end, but I refuse to give up without a fight—I just don't know how to motivate him to fight, too. How do I make him realize we're in this together and he isn't alone?
Has anyone here used native propolis before? Is it okay to take it before consulting with the oncologist, and if so, what's the dosage?
P.S. We don't even have the full picture of where the metastases are yet. There's some in his shoulder and in the lining near his lungs. He had the primary tumor removed about nine years ago.
Thanks for any advice you can offer.

Just wanted to send some warmth to everyone here—and I’m joining the ranks alongside my dad. He just found out about his metastases, and we’ve been in the thick of it for three months now, fighting both the mental toll and the constant battles with his doctors. Wishing us all a massive amount of strength as we navigate these journeys.