Resources and support for families dealing with cancer and serious illness

wanderingharbor61 said:Ivanicapeca🙂🙏🙏🙏,

For those of you who have gone through a PET/CT scan, I was wondering what kind of paperwork you actually need to bring along, whether an oncologist's mandatory Second opinion on a specific form is required, and what the typical wait times look like these days?

Sending my best to everyone fighting this—hang in there and stay hopeful, and to your loved ones who are looking out for you, I wish you all the patience and strength in the world to get through these challenges and reach recovery together!

wanderingharbor61, I just sent you a private message—actually, two of them. Hang in there!

And I’m also jumping in with that question; if anyone has some firsthand experience dealing with PET/CT scans at the Mayo Clinic, please share how things went!

Brandon Clark3 said:Sending love to all you wonderful, brave souls

My dear husband was diagnosed with - skull base tumor
- status post transnasal tumor ablation (Pathology: carcinoma - operated 02/25/08)
- liver metastasis
- unknown primary site

From everything they've told us, the only thing we know for sure is that it's spread to his liver. They don't even know where the primary tumor is located yet. He just finished his first round of chemo (carboplatin) three weeks ago and actually handled it pretty well. But the oncologist keeps saying there isn't much time left, and honestly, I’m losing my mind because I just can't deal with that right now. We have a PET/CT scheduled for mid-month which should finally pinpoint where that primary cancer is hiding. Right now, they have him on a cocktail of meds (Tramal, Transtec, Citolon, Zyprexa, Aloxi) just to keep him stable, but it leaves him feeling so foggy and hollow—almost like he's giving up on the fight. I can't let him do that; I love him way too much. It breaks my heart to see him like this... the pain is relentless, the weight loss is scary, he won't eat, and he's just completely exhausted by it all.
I really need a Second Opinion. If anyone knows a great oncologist here in the States or even overseas, please let me know! Or if there are any alternatives... what would you recommend? Who should I call???
He's currently in the hospital for his second round of chemo. Thank God his blood counts (white cells, platelets...) looked okay. You all have given me so much info here—suggestions about beta glucan, aloe... and so much support from those who have lost loved ones. I am endlessly grateful, even though I'm not exactly a tech whiz when it comes to using the computer.
Someone mentioned immunotherapy before (I think it was Grace Fowler), so I'd love to know more about that; where, what, and how???
We've only been in this fight for two months. We found out totally by accident, so it's been such a massive shock. Emotions are all over the place, but I guess that's normal, right? One day he was perfectly healthy, and then suddenly...

Love and faith are what keep me going...

Honey, I am so incredibly sorry you're going through this. In our situation, it was actually the opposite—I was the one sick, and he was the one digging, searching for every possible alternative and being my rock every single step of the way, just like you are for him now. Looking back, I think it was harder on him sometimes because I just had to lean on him and trust that he’d do everything humanly possible.
Right now, the most important thing is making sure he doesn't lose any more weight. There are various supplements (like Megastat and others) you can get via prescription that provide the body with essential nutrients. It's vital to keep his blood counts stable so he can keep up with the chemo treatments and physically handle them.
Definitely reach out to Grace Fowler via private message regarding the immunotherapy stuff.
There is also a place called Second Opinion Inc. based in Washington, D.C. (www.second-opinion.com). I haven't personally used
them, but if I were in your shoes, I'd give them a shot. You can find all the details on their website. Basically, you give them his complete medical records, they translate everything, and they request a second opinion from world-renowned cancer institutes. You'll find their number there—just give them a call. They usually get answers back very quickly, which is so crucial. It costs $107 for American cardholders.

Keep showing him all that love and faith. And truly believe, because there is always hope, even when oncologists say time is running out. You'll find plenty of examples of that right here on this forum.

Can someone walk me through how a bone scan actually works? Like, what’s the process, and how long am I looking at for the actual procedure?
Also, does anyone know the typical wait time for an appointment or getting the results back?
I read somewhere that it can sometimes take a few hours, and you have to stay super still... I'm asking because my dad just had spinal surgery, and staying in one position for that long is going to be a real struggle for him.
Thanks!

Donna Hernandez21 said:Could someone please tell me a bit about bone scans? How does it actually work, and how long does it take?
How long is the average wait for an appointment? And for the results?
I read somewhere that it can sometimes take a few hours, and you have to stay super still... I'm asking because my dad just had spinal surgery, and staying in one position for that long is going to be really tough for him..
Thanks!

Hey there!!
So, a bone scan is basically a painless, straightforward test. Once you finally get an appointment—which usually means showing up by 8 AM—they inject a contrast agent into your vein, and then you’re pretty much on your own for maybe 12 hours or so... I guess. The actual imaging part only takes about ten minutes. Results usually come back in about 7 to 10 days. I've personally had them done at Mayo Clinic several times, and they always follow the exact same protocol.
Fingers crossed you get an appointment quickly and everything comes back looking good.
Best, Grace Fowler

Hi everyone, I’m feeling pretty anxious and down, just like I always do before every chemo session. What I really want to know is how and when the follow-up exams actually happen... that physical exam where they check my abdomen and lymph nodes can be so misleading. I've had eight rounds so far and I'm heading into my fifth now, so I'm wondering when I might expect results like a CEA or CT scan. I'm just so worried about potential metastasis... I would be incredibly grateful to anyone who knows anything about this. Please feel free to message me privately too!
Wishing you all so much luck on your healing journeys!

Grace Fowler said:Hey there!!
A bone scan is actually a painless, straightforward procedure. Once you get your appointment—which usually means showing up around 8:00 AM—they just inject a bit of tracer into your vein. After that, you're basically on your own for about 12 hours until the imaging happens, though the actual scan itself only takes about ten minutes. You can usually expect the results within 7 to 10 days. I’ve had them done at Mayo Clinic several times myself, and the protocol is always exactly the same.
Fingers crossed you get an appointment soon and that everything comes back looking good.
Best, Grace

Thanks so much! 😘

The waiting is what really gets to me... with every new report, the uncertainty feels more real. It's like this "enemy" is finally starting to take shape.

Since you’ve all been so incredibly kind as to offer help, I’ll jump in with my own situation. My mother underwent surgery just a week ago. She was diagnosed with small intestine cancer—which is supposedly quite rare. It has already metastasized to her kidneys and liver. They had to perform a small bowel bypass so she can actually eat, and now chemo is the next step. She’s lost 50 pounds and is incredibly weak, so we are terrified of starting chemotherapy. To be blunt, the prognosis is grim; doctors are giving her a maximum of one year even with treatment.
I want to ask if there are any supplements or remedies (outside of what the doctors prescribe) that could help ease the side effects of chemo?
Keep in mind we don't live in Washington, D.C., but we can travel if there is a specialist who would see her at Mayo Clinic. This is my first time facing this disease personally, and since I have zero direct experience beyond hearsay, I am feeling overwhelmed, confused, and completely helpless.
Thanks in advance for any suggestions or support.

Nancy Thomas18 said:Hi everyone! I’m feeling so anxious and just plain miserable, just like I do before every chemo session. I was wondering when and how they actually do the follow-up checkups? That whole thing where they palpate my abdomen and lymph nodes feels so uncertain. I have eight rounds scheduled and I'm heading into my fifth now... I'm really worried about metastases, so I'm wondering when I can expect things like a CEA test or a CT scan. Thank you so much to anyone who can help me out. Feel free to DM me, I would truly appreciate it!
Best wishes to everyone for a speedy recovery!

I doubt anyone here can give you a straight answer without accidentally confusing you or, heaven forbid, scaring you even more. Only your oncologist can tell you for sure when you go in for your next round. Every protocol is different, and every doctor follows their own specific plan. Usually, a CT scan is done as a checkup once treatment wraps up, though if there's any suspicion of something, they might do it sooner—which doesn't seem to be the case for you.
But hey, that's just my Second opinion based on what I've been through...
I know it's incredibly tough and those fears about metastases are terrifying, especially the worry that something might be missed. But honestly? From what I can see, you're in remission and everything is moving right along. You had your surgery, you moved straight into chemo, and
I'm guessing they're monitoring how well the chemo is working, which is likely going great since they're sticking to the same protocol. In my case, they checked my CA125 marker before every single chemo session so I could track my levels. If they're drawing blood before your sessions, they're almost certainly checking CEA and other markers too.

Just talk openly with your doctor. We often hold back questions because we're scared of the answers, but I always felt so much better once I started asking. Seeing those marker levels drop during chemo gave me so much hope that I was on the right track. It made facing the next round way less scary because I knew the treatment was actually working... I just had to focus on getting it done.
Don't let the doubts and fears eat you up! Just stay focused on healing and trust that everything is going to be okay...

Huge thanks to everyone who helped us navigate the medical system and understand our rights regarding patient suffering. I truly appreciate you all.
I see new people joining this forum and reading this thread, and honestly, it breaks my heart. It’s sad because it means there are always new people facing this reality. But, if you or someone in your family is dealing with a tumor, cancer, or anything similar, I think coming here is the right move. Personally, I’ve learned things here I never would have found elsewhere, and more importantly, I found support. I finally got answers to questions that were eating at me. What mattered most was talking to people who actually *get it*—people who understand that messy mix of emotions, fears, restlessness, pain, helplessness, and doubt.
My dad is currently undergoing radiation and chemo every six weeks. He’s handling it remarkably well; no nausea or major side effects from the chemo, and knock on wood, his appetite is great. He’s constantly asking what we brought him to eat when we visit, and he’s always asking for cigarettes because he’s such a heavy smoker... just always asking for his smokes and a cappuccino... that's my guy!
The other day, I actually had a good laugh. I gave him a kiss on the head and said, "You're my favorite, Dad," and he just looks at me and goes: "Well, how many others do you have for me to be the favorite?"
He’s always loved to joke around. Even now, he hasn't lost that sense of humor or his positive outlook, which is absolutely vital.

I want to tell everyone—since I see so many people writing about it—don't get bogged down by medical prognoses or doctors' assumptions about how much time someone has left. Every person is an individual. Every case is different, even if the diagnosis looks the same on paper; you can't just put people into neat little boxes. Those prognoses can be incredibly counterproductive because they can strip away a person's will to keep fighting. This thread is proof that so many people defy those doctor's predictions. Let them be our hope, our faith, and our inspiration to keep pushing forward.

Best wishes to everyone. Stay brave and take on the new day!

Hey everyone!
Got a few things on my mind:
-Ewing sarcoma—specifically metastatic, type 2. Can anyone dive deeper into this for me?
-What’s the consensus on using ozone therapy for people dealing with any kind of cancer? I’m asking because I personally know two kids who saw a huge boost from it, so I’m curious if anyone else here has gone down that road.
-Has anyone ever tried or used: Aloa arborescent, Ocean 21, or Oxi-Max?
Also, what about ozonated water? Apparently, you can pick some up at local health food stores and just add a few drops to a glass of water. Has anyone actually done this?

Thanks!

Linda Peterson37 said:I just wanted to add one more thing for everyone here, because I see so many people discussing this, and that is to please not get too weighed down by medical prognoses or their assumptions about how much longer someone might live. Every single person is an individual, isn't it true? Everyone's battle is unique, and even when diseases look identical on paper, they manifest so differently that you really can't just sort them into neat little boxes. Those clinical predictions can actually be quite counterproductive because they have the power to strip away a person's spirit just when they need it most to keep fighting. But looking at this thread, isn't it wonderful proof that there are so many people out there who defy those doctor's predictions? Perhaps we should all look to them as our source of hope, faith, and inspiration to keep pushing forward.

I'm not sure if it's just my imagination or if it's becoming more common, but I get the sense that surgeons, over the last few years, have started offering timelines on how long a patient might survive after a tumor is removed—often without being asked. It makes me wonder: is it truly humane or even ethical for them to make these kinds of calls, especially when so many real-life experiences show how often they can be wrong?🤷
There is also something else weighing heavily on my heart... I am a member of a patient's immediate family, and I know that he has always been prone to feeling depressed and pessimistic, not just now since getting sick, but throughout his entire life. Naturally, we haven't shared the full, heavy truth with him (which is that there are metastases and that, according to the surgeon, he may only have about a year left). He is recovering beautifully from surgery, yet it feels as though his inner strength just isn't there... When is the right moment to sit him down and tell him everything?😕 Please, if anyone has any advice, help me!!

Elizabeth Gonzalez55 sent you a PM. Sending love!

Linda Peterson37 I read your post—honestly, it’s great. It’s so important that your dad hasn't lost his sense of humor through all this. Keeping a positive attitude is huge, especially when things get heavy like this.

Sandra Evans13 I see you're also new here, just like me, and dealing with a total rollercoaster of emotions. Look, no matter how we feel, while our loved ones are fighting this awful disease, we just have to keep moving forward—there isn't any other way to do it.

Can anyone recommend a good oncologist in the Washington, D.C. area? We want to know who to call if we need someone.

Sending my best to everyone. Hang in there!

I totally blanked on asking—has anyone here actually gone through with a Second opinion yet? I'm curious what your experience was like.

THNS

rustyscout31 said:He’s recovering great after surgery, but it’s like he just has zero energy... Should I tell him the whole truth right now? Like, the unfiltered version? 😕 Help me out here!!

If you ask me, NO. You already mentioned he’s feeling depressed, and honestly, hearing the raw data might just crush his spirit completely.
Sometimes it's better to soften the blow if it gives him the mental fuel to keep fighting and helps him stay focused on getting better.

I’m speaking from what we went through with my mom. If we had laid out her prognosis to her straight up, I don't even think she would have made it out of that depression. And let's be real—she used to spiral over much smaller things anyway.

At the end of the day, you and your family know him best, so you'll have to make the call based on his vibe. Good luck!

Sandra Evans13 said:Since you all were so kind as to offer your help, I’ll jump in with my own situation. My mother had surgery just a week ago. She was diagnosed with small intestine cancer (which is supposedly quite rare). It has already metastasized to her kidneys and liver. They had to perform a bypass on her small intestine so she can actually eat, and now chemotherapy is the next step. She’s lost about 45 pounds and is incredibly weak, so we’re honestly terrified of the chemo starting. The prognosis isn't good—it’s hard to even say this out loud—but the doctors are giving her a maximum of a year, even with treatment.
I wanted to ask if there are any supplements or remedies (outside of what the doctors prescribe) that might help ease the side effects of the chemotherapy?
I should mention that we don't live in Washington, D.C., but we can certainly make the trip if there is a specialist who could see her at a major hospital like Mayo Clinic. This is also the first time I’ve ever dealt with this disease personally; I have no direct experience beyond hearing stories from acquaintances, so I am feeling overwhelmed, confused, and utterly helpless.
Thank you in advance for any suggestions or support.

Regards,
If you're looking for someone at a top-tier facility, I highly recommend Dr. Majerović in abdominal surgery; he has clinic hours on Wednesdays from 12:00 to 3:00 PM. My own mother is dealing with advanced ovarian cancer that has already spread everywhere. She actually had an intestinal blockage and was within days of passing away. He performed a peritonealostomy (or something to that effect)—basically, they removed a significant portion of the small intestine, the appendix, the peritoneum, and several other things; it was a grueling 12-hour surgery. Mom had her operation 10 days ago, she's still hospitalized, has a stoma, and is slowly recovering. She says this procedure extended her life by maybe 3 or 4 years, since a full cure isn't possible. Honestly, don't get too hung up on the doctors' prognostications. When my mom was first diagnosed two years ago, her oncologist gave her six months, and thank God, she is still here with us.
As for alternative options, she could try native propolis (you can find it around $43 in pharmacies). I also read somewhere that eating popcorn can help alleviate chemo-induced nausea. For my mom, simple menthol candies worked wonders.
Wishing you the very best of luck.🙂

rustyscout31 said:I can't tell if it's just a coincidence or a new trend, but I get the feeling surgeons over the last few years have started predicting exactly how long a patient will live after a tumor removal—without anyone even asking them! So, here's my question: is it actually humane or ethical for them to make those kinds of prognostications, especially since we know from experience how often they end up being wrong?🤷
And there's one more thing weighing on me... I'm part of the immediate family of someone who's sick. I know this person has always been prone to depression and pessimism, not just now, but their whole life. Naturally, we haven't told them the full truth (which is that there are metastases and, according to the surgeon, they only have about a year left). They're recovering great physically after surgery, but they just seem to have zero energy... Should we tell them the whole truth right now???😕 Help please!!

No, it definitely isn't humane or moral, especially for a surgeon, to give out those kinds of predictions if
nobody even asked them to!
I also agree that it might be better not to drop the full truth on them if they're already such a pessimistic person. Just let things take their course for now. If they're recovering well physically, I truly believe that focus will help their mental state too, so just stay focused on the recovery together. It'll make things easier for you, too. Feeling drained is totally normal after surgery...
As for what happens next, only God knows, so it's better not to look too far ahead. You'll handle everything as it comes...

Sandra Evans13 I see you're just as new to this as I am, navigating all these conflicting emotions. Regardless of how we feel, while our loved ones fight this terrible disease, we have to push forward. There is no other option.

Can anyone recommend a solid oncologist in the Washington, D.C. area so we know who to call if necessary?

Best wishes to everyone. Hang in there!

Thanks to Galeo and everyone else for the support. Fighting these demons is significantly easier when you realize you aren't alone.
I'm sorry I can't help with your question about Washington, D.C., but I'll let you know as soon as I hear anything.
Stay strong...👍

Thanks, Amanda Miller69!
My mom was discharged from the hospital today and is recovering well from her surgery. She’s finally eating again, which is a massive relief after three months of nothing. I’m definitely going to track down that doctor; hopefully, he can help her out too.
I came across these dietary supplements called IMMUNOMAX that are supposed to give your immune system a major boost, though they aren't cheap—the daily dose runs about $60 for the first month.
The dosage drops after that. Has anyone here actually tried them? They even have their own website: www.immunomax.info.

Sandra Evans13 said:Thanks, Fiz!
Mom finally got discharged from the hospital today, and honestly, seeing her recover from surgery is such a relief. She’s even starting to eat small amounts again, which is just huge. She hasn't been able to touch food for almost three months, so watching her actually enjoy a meal is everything. I’m definitely going to track down that doctor we talked about—I'm really hoping they can do some good for my mom too.
I heard about these capsules—they aren't actually medicine, just a supplement—called Immunoex. Immunoex What are those things people claim supercharge your immune system, but they’re actually pretty pricey? Like, I'm talking about stuff where a single daily dose costs a fortune. $60So, we’re officially one month in.
The dosage usually starts to taper down later on. Has anyone here actually dealt with this stuff before? I even found a dedicated website online under that same name. Check out the site at www.immunoex.info..

Hey everyone, what's up?
I actually looked into that Immunoex stuff over in the States because I heard it won some awards or something, but honestly? They don't treat it like anything special over there. It’s just viewed as another random dietary supplement. Most people in the US seem way more focused on hitting that max dose of beta-glucan—around 2.5 mg per kg of body weight daily. At the end of the day, though, it's totally up to us what we decide to take.
So, I just started seeing Dr. Stacy over at Cytomed... does anyone here actually know anything about how their stuff works?

Believe me, having faith is what actually sets you free and gives you that inner strength.

For boosting immunity: check out ANTIEOPLAZMIN on page
treatments by Dr. Anatoly Komarov http://adonis-kas.com
Nutritionist Dr. CVETA MALUS 01-363-9509, 091-51 118897

Someone with a brain tumor—who had already gone through 30 rounds of radiation plus Temodar—actually used all of this. It was posted on a blog back in 2006, right after they'd been diagnosed the year before. I'm still waiting to hear an update to see if the gentleman is doing okay today. I'm praying to God he is...

Sending love to everyone!