Support resources for families dealing with cancer and other serious illnesses

I sent over an email asking if there’s any way, if at all, he could still fit me into that original time slot...

Kimberly Wright said:I sent an email requesting—if there's any way at all—to keep my old schedule...

Look, from what I’ve seen, most people just sit there in silence and take the hit when something like this happens to them. In my experience, the ones who actually make some noise are usually the ones who walk away with exactly what they wanted.
Use that to your advantage—be a nuisance and don't back down!

Angela Wright said:You know, from what I've seen, most people just tend to stay quiet and suffer through things when they deal with situations like yours. It seems to me that the ones who actually make some noise are usually the ones who end up getting what they're looking for.
You should take advantage of that—keep pushing and don't back down!

Yeah, I've noticed the same thing, though I'm not sure if being loud is going to change much in this specific case, especially since Mayo Clinic is such a massive private institution.

I finally got a reply to my email. They told me they can't fit me in before February 15th, but if someone happens to cancel their appointment, they'll give us a call sooner.
I really wish there was a resigned-looking emoji for this moment.

This is absolutely insane.

If anyone reaches out to you, call the FBI immediately—but before you do, play along and act interested just to see if you can bait them into revealing their info.
The bottom-feeders peddling fake medication are the absolute lowest scum on the planet.😠

😲😲

It is certainly a good thing I came across this information so that I might know how to respond properly should I ever find myself in such a situation.

Regarding what was mentioned above
A friend of mine has been dealing with some serious spinal issues
and she's actually been out on medical leave for two years now
then one day, this random guy calls her up and asks if she’s experiencing
any kind of neck or back pain problems.
Of course, being my usual naive self, she gets interested and
ends up giving the man her address.
He actually showed up at her place to demo some sort of device—a massager, I think—
convinced her it would be the absolute cure for her condition, so she sat down with him.
She ended up shelling out $1667 😲

nimbleheron2 said:Regarding what was mentioned above.
A friend of mine is dealing with some serious spinal issues.
They've been out on disability for two years straight.
Then one day, some random guy calls her out of the blue just to ask if she’s got it.
What kind of neck or back pain are we talking about here? Give me some specifics.
Of course, my naive little girl will get all wrapped up in this and...
Give the guy his address.
Some guy showed up and started pitching this massage device like it was the second coming of Christ.
He convinced her that those breakouts would clear up just fine, too.
She just cashed out. $1667 😲

He should just hop online, pull up some price comparison sites, and see how the numbers actually stack up against the competition.
My old man fell for it too and picked up one of those massage guns—probably the exact same model. I did a quick search online and found the identical device from the same manufacturer, only the price was three times lower than what he paid. He wasn't having any of it; he called them up demanding a full refund because he felt completely ripped off, even threatening to take the whole thing to the local news. In the end, they gave him his money back, though they did shave a little bit off the top for some reason. $100 Just because he "used" it for a single month. 🙄

There are plenty of companies out there, but I honestly can't tell if this one actually pulled her medical records or if it was just some freak coincidence. It’s hard to say for sure, especially since back in the States, everyone and their mother seems to be dealing with spinal issues these days.

My mother-in-law is about to start chemotherapy soon—she’s dealing with colon cancer that has spread to her liver and bladder. They managed to remove the mass from her intestine, but now we’re heading into the really tough part, the actual fight. I was wondering if anyone could suggest anything—maybe certain supplements or remedies—that might help ease those nasty chemo side effects? Any advice would mean the world to us. Thanks so much in advance!

Hello
I am asking for your help. For four years now, my sister has been dealing with issues regarding the lymph nodes in her neck. She has undergone two separate pathology reports, and neither one could identify the cause. The second test was conducted exactly one year ago. On her right side, she has several enlarged nodes that are clearly visible. A recent MRI scan from this past summer shows them as a single cluster. After researching online and talking to others facing similar struggles, we traveled to Chicago to get a PET-CT scan on our own initiative. The results are as follows:
SUV max=5.7, SUV max=2.6 SUV max=1.1 CONCLUSION: increased glucose metabolism in the lymph nodes on the right side of the neck, and in one small right retroclavicular node; given the intensity of metabolic activity, this could indicate either active inflammation or malignant etiology. We recommend repeating a fine-needle aspiration under ultrasound guidance or a biopsy. There is also slightly higher glucose metabolism in a lesion in the upper medial quadrant of the right breast; morphologically and metabolically, this is most likely benign, but analysis is also recommended.
Has anyone here dealt with something similar? She is currently making arrangements to go abroad for the surgical removal of these nodes, as her previous two procedures were performed in Canada. She isn't experiencing any pain, which makes me wonder if it's just inflammation. If anyone has experience with PET-CT scans, please reach out. I am looking for positive physician recommendations or any guidance you can provide. I am in a state of total panic right now... thank you all.

We had our PET-CT scan on January 22nd. Scheduling was seamless. We called about ten days ahead of time to set everything up. The only requirement was paying in advance and faxing over the receipt before our appointment.

Drew Thompson5 said:My mother-in-law is about to start chemo soon; she's got colon cancer that's spread to her liver and bladder. They managed to get the mass out of her colon, but now comes the really hard part—the actual fight. Please, if anyone can help me find something to take to make the side effects of the chemo a little easier on her... I would be so grateful.

I haven't been hanging around this forum for a little while, so I'm not sure if this has come up lately, but... my mom went through six cycles of chemo following the Mayo Clinic protocol—which, looking back at what people say here, seems like it might actually have relatively mild side effects compared to some other stuff—after having surgery for advanced colon cancer. Besides the medical side, she stuck to a macrobiotic diet, which I honestly think is what helped her push through the treatments more easily... though I know no doctor is ever going to tell you that, so if you decide to go that route, please, please talk to a specialist to get a solid meal plan first... she also used some supplements. Back then, she was taking BioBran (it was a powder, I think, maybe 1000mg). You should look up what it does online... She struggled quite a bit with diarrhea, which she managed somewhat through her diet—lots of rice and adding Kuzu to her meals—and for those mouth sores that popped up during just the first two cycles, she rinsed with sage tea (definitely something you want to start doing from day one of treatment) and used Gelclair for her mouth.
Given those metastases you mentioned, I'm guessing your mother-in-law might end up on a different kind of regimen... maybe Avastin? That’s what they call a "smart drug," so maybe the side effects won't be quite as brutal...
I also think it’s super important to focus on how she recovers from the surgery and builds up her strength before the chemo kicks in, and then focusing on detoxing her system afterward to minimize the drugs' negative impact...
Keep us posted so we know how she's doing! We're all rooting for her...

shadowmason6 said:I’ve been away from the forum for a little while—so I'm not sure if this has come up lately—but I wanted to share what my mom went through. She did six cycles of chemo using the Mayo Clinic protocol (which, looking back at the discussions here, seems like it had relatively mild side effects). This was all following surgery for advanced colon cancer. Aside from her diet—she switched to macrobiotics, which I’m convinced helped her get through the treatments much easier—she also used some supplements. At the time, she was taking BioBran powder (around 1000mg, if I recall correctly)—definitely look up the benefits online! She struggled quite a bit with diarrhea, though we managed to ease that somewhat with her diet—lots of rice and adding kuzu to her meals. For those mouth sores that popped up during the first two cycles, she used sage tea rinses (which is a great thing to start on day one!) and a product called "gelclair."
Given the metastases you mentioned, I’m guessing your mother-in-law might have a different treatment plan... maybe Avastin? That’s what they call a "smart drug," so hopefully, the side effects won't be too intense.
I really think it's crucial to focus on how she recovers from surgery and builds up her strength before starting therapy—and then helping her body detox after, to minimize the drugs' impact.
Please keep us posted so we can see how she's doing! We're pulling for her...

She’s been recovering for almost two months now, but she’s lost so much weight—it’s tough to see. She barely eats anything; it's mostly just whey, some fruit compotes, or a protein shake, and that’s about it. The hardest part is that she’s being really private about the details of her illness and treatment, so we aren't entirely sure what the next steps are, other than knowing chemotherapy is likely. I'm trying everything I can to reach her, but I just can't seem to get through. She often runs a high fever—over 101°F—and she actually started using morphine patches yesterday. Communicating with her surgeon is a nightmare because he’s always swamped, and getting hold of the oncologist is basically impossible. Sorry, I just needed to vent a little—I feel a bit better now. Thanks so much for all the info and the support; I'll definitely check back in soon.

Drew Thompson5 said:She’s been recovering for nearly two months now, but she’s looking terrible—lost so much weight and barely eating anything. It’s mostly just whey protein, some fruit compote, maybe a protein shake, and that's about it. The hardest part is that she keeps all the details regarding her illness and treatment close to the chest, so we’re left in the dark about whether she'll end up needing chemotherapy or something else. I’m trying everything I can to get through to her, but I'm hitting a wall. She’s frequently running high fevers over 101°F, and yesterday they started her on morphine patches. Trying to coordinate with the surgeon is a nightmare because he’s constantly unavailable, and getting a hold of the oncologist is practically impossible. I needed to vent a little, and I feel a bit better now. Thanks for all the info and the support; I'll definitely keep you all posted.

Whenever an oncology patient runs a high fever, they need to head straight to the hospital to get put on antibiotics immediately.

Hi everyone... I just wanted to step in and share what my family is going through right now. My mom is battling osteosarcoma—a malignant tumor in her femur. I haven’t been able to catch up on every single one of your posts because there is just so much to read, but I felt the need to reach out. She’s already undergone two surgeries at a major hospital in Chicago, and during those procedures, she contracted a staph infection. It's turned into a real nightmare because the bacteria is resistant to penicillin. To make matters worse, they called her today with some devastating news: amputation might be the only way forward. She’s in such an impossible position right now. The doctors are weighing two paths: either try one last desperate attempt to clear the infection—which isn't a guarantee at all—or move straight to the amputation. The scary part is that if we wait too long trying to fight the infection, there's the risk of the tumor metastasizing. They need a decision within the next two weeks. I’m doing my absolute best to stay strong and composed when I'm with her. I know she doesn't need to worry about my emotional state on top of everything else she's enduring. Anyway, that's where things stand... I just really needed to vent to people who might actually understand, because it feels like no one else truly gets it...

Drew Thompson5 said:She’s been recovering for nearly two months now, but she’s lost so much weight; her appetite is practically non-existent, so she mostly just survives on whey protein, some fruit compote, and maybe a protein shake here and there. The hardest part is that she keeps all the specifics about her illness and the treatment plan close to her chest, so we’re left guessing whether she’ll end up needing chemotherapy or something else entirely. I try everything I can to reach her, but I just can't get through. She’s dealing with frequent high fevers—usually north of 101 degrees—and yesterday they finally started her on morphine patches. Communicating with the surgeon who performed the operation has been an uphill battle because he’s always swamped, and getting a hold of the oncologist is even harder. I suppose I just needed to vent a little, and I feel a bit better now. Thank you for all the information and the support; I’ll be sure to check back in.

Drew, I’m keeping my fingers crossed for you.🙂

My mom went through a similar decline, though she actually kept a decent appetite and ate quite regularly.🤷
I suppose that’s just what happens when someone has had their entire stomach removed.
In a way, that’s how I find a bit of comfort.
But watching her, I don't see any signs of improvement; honestly, it feels more like she’s slowly fading away. On top of that, there have been a few instances where her vision in her left eye just... vanished.
My optimism seems to be draining away a little more with every passing day.

When I reached the point where I couldn't sleep anymore because of the constant worry, I somehow managed to finally get a hold of my mom's oncologist... it was the first time we really spoke openly. She explained her reasoning, which, to be honest, aligns almost perfectly with my own fears.
The tumor was just too large for it not to have spread somewhere. Of course, that isn't a certainty, which is why that PET scan is such a critical piece of the puzzle, since it dictates the whole direction of the therapy.
And then there’s this issue with her vision...
It made me wonder if it might have metastasized to the brain.

Long story short, after a lot of struggle—but thanks to the incredible help and dedication from my mom's oncologist and her primary care doctor—mom had a head CT today, and thank God, there are NO metastases in the brain.

She felt absolutely terrible today, but I still feel a tiny bit of relief knowing that her head is "clear."

urbanorca10 said:Hi everyone... I figured I’d jump in here and share what my family is going through. My mom is battling osteosarcoma—a malignant tumor in her femur. I haven't had a chance to catch up on all your posts because there are just so many, but I wanted to reach out. She’s already undergone two surgeries at a major hospital in Chicago, and during one of those procedures, she picked up a staph infection. It’s turned into a nightmare because the bacteria is resistant to penicillin, and just today, the doctors called to tell us that amputation might be the only way forward. She’s in such an impossible position right now. The first path is trying to find some other way to fight off the infection—though there's no guarantee that will actually work—but the risk is that the tumor could metastasize in the meantime. The alternative is to just go through with the amputation immediately. We have about a two-week window to make this call. I’m doing my best to stay composed and strong for her, because I know that on top of everything else she’s enduring, she doesn't need to worry about how much this is affecting me. So, that’s where we are... I just felt the need to vent to people who might actually understand, since it feels like nobody else really gets it...

Oh, urbanorca10, 😢
my heart just breaks for you.

urbanorca10 said:Hi everyone... I just wanted to share what our family is going through. My mom is battling osteosarcoma—a malignant tumor in her femur. I haven't had a chance to catch up on all your posts because there are just so many. She’s undergone two surgeries at a major hospital in Chicago, but during those procedures, she picked up a staph infection. Now, that same bacteria is causing massive complications because it's resistant to penicillin. Just today, they called to tell us that amputation might be the only way out. She’s in an impossible position right now. The first option is trying to somehow "wipe out" this infection, though there's no guarantee it'll work, but the risk is that the tumor could metastasize in the meantime. The other option is to move forward with the amputation immediately. Everything has to be decided within a two-week window. I'm doing my best to stay strong for her... I know that on top of everything else she's enduring, she doesn't need to worry about how I'm holding up. That's really it... I just needed to vent to people who have been in these shoes, because honestly, nobody else seems to get it...

Unfortunately, amputation is often the only lifeline left when dealing with osteosarcoma, especially when you're fighting a stubborn infection like this.
Your only real move here is to seek a second opinion. Only another specialist can competently weigh the risks and suggest a path forward.
Log in to www.medicaladvice.com and post the same question. Otherwise, the association provides free second opinions for its members.

Kimberly Wright said:Drew Thompson5, I’m crossing my fingers for you!🙂

My mom has also lost quite a bit of weight—even though she has a great appetite and eats pretty regularly🤷
but hey, I guess that's just what happens when someone has had their entire stomach removed.
Honestly, that's how I try to look at it to stay positive.
But watching her, I just don't see any improvement—it feels more like she's slowly fading away. On top of that, there have been a few times now where her vision in her left eye just... went dark.
My optimism is definitely taking a hit every single day.

When I reached the point where I couldn't sleep because of the worry, I finally managed to get a hold of my mom's oncologist... it was actually our first time having a really open conversation. She explained things in a way that almost perfectly aligns with my own gut feelings.
The tumor was just too large for it not to have metastasized somewhere. Of course, it doesn't have to be 100% certain yet—that's why that PET scan result is such a big deal. It can totally change how they decide to handle the treatment.
And then there's this whole issue with her losing her sight...
maybe it spread to the brain..

Anyway, after a lot of stress—though with huge help and amazing dedication from both my mom's oncologist and her primary care doctor—mom had a head CT today, and thank God—NO brain metastases!

She felt absolutely terrible today, but I still feel a tiny bit lighter knowing her head is "clear."

As far as communicating with her doctors goes, it's basically an impossible mission. After the surgery, the surgeon gave my husband and father-in-law a "two-sentence explanation" about her condition, and I have to say, he didn't offer much hope at all. Plus, the oncologist is out of the office more than he's in, so two different doctors ended up handling two of her appointments. The only straightforward information we got was that she has to personally write a request for chemo and wait for the insurance board to approve it.
Regarding your mom, I am so relieved to hear there are no brain metastases! Maybe that vision issue is just a side effect from a medication or something similar. Just hang in there—tomorrow is a new day.

Angela Wright said:If an oncology patient runs a high fever, they need to get rushed to the hospital immediately to start antibiotics.

Well, at the hospital, they just told us this was totally expected—basically saying if the temperature hits over 101°F, we should just bring it down and call it a day. No antibiotics, no readmission, nothing... just a shrug.

Drew Thompson5 said:The hospital staff basically told us this was par for the course—once her fever climbed north of 101°F, they just brought the temperature down and called it a day. No antibiotics, no readmission, nothing.

It slipped my mind that she hasn't actually started chemo yet. In my experience, when you're mid-treatment and hit with a high fever, you have to get rushed to the ER immediately to get stabilized; an infection during chemo can be a literal death sentence.

She really needs to play it safe right now and avoid catching anything at all. She has to be physically "fit" before they can pull the trigger on the therapy, because if she isn't, the whole treatment gets pushed back—and every single day that delay happens is just giving the disease more room to run wild.