Resources and support for families dealing with cancer and serious illness

Carol Sanchez2 said:Can anyone suggest a decent shop or wig salon that specializes in real human hair? My Mom is going to need one soon, and she’s adamant about looking natural. She tried some synthetic ones, and frankly, they were an absolute disaster.
Thanks!

Supposedly there is a boutique called "Queens" near the Capitol Center. My cousin scouted every single shop in Washington, D.C., and that was the only place that hit the mark—incredible selection and great prices, so she picked hers out on the spot. I'm heading over there this Saturday to pick one up for Mom.

steelbadger83
What is the deal with those immunotherapy injections? I'm currently waiting on mine. On top of that, my Mom is taking those liver enzymes and selenium supplements. I should be receiving the immunotherapy shots shortly. How exactly is the timing supposed to work? Do you take them before, after, or during chemo?

steelbadger83, you're a fighter, thanks.
My sister-in-law is currently on her second round of chemo—it's been about a month since the first one—and she’s receiving white cell support. Her hair has started falling out, and the nausea is really hitting her hard. The first round went smoothly without any issues, but this second cycle, which kicked off on Monday and includes a session tomorrow, Friday, hasn't been easy at all. She was actually terrified when she saw her hair starting to thin. We think she can manage to get through this current round somehow, but for the next one, she'll definitely need to be prescribed something specifically for the nausea. In the meantime, she's been taking natural propolis constantly.

George Palmer7 said:steelbadger83, you're a fighter, thanks.
My sister-in-law is currently on her second round of chemo—it’s been a month since the first one—and she’s receiving the white cell treatment. Her hair has already started falling out, and the nausea is hitting her hard. The first round went off without a hitch, but this second cycle, which started Monday and wraps up tomorrow, Friday, hasn't been easy at all. Seeing her hair fall out was terrifying for her. She’ll manage through this current round, but for the next one, she’s definitely going to need some anti-nausea medication. She’s been taking natural propolis constantly.

It’s a universal shock when the hair starts coming out. When they warned my Mom about it, she was absolutely stunned. We all have that same sense of invincibility, don't we? That "it won't happen to me" mentality. It's the same way we assume we'll somehow bypass the heavy hitters of serious illness. In my experience, chemo is an incredibly individual ordeal. My advice to her would be to just bite the bullet, get a short haircut now, and pick out a beautiful wig. Being prepared is everything because once the shedding starts, it moves with startling speed. My Mom actually has a bald patch forming in one spot right now, so I'm heading out this Saturday to buy her a wig. I want her to have that ready so she doesn't have to stress about whether she can face the world or go outside. Let's make sure she has everything she needs to feel ready.

therapy - hair loss - wigs
Mom is wrapping up her second week on Temodar. Since she had surgery back in April, part of her head where the incision was had already been shaved. Once we got home from the hospital, we decided to just shave the whole thing. Honestly, she didn't take the "loss" of her hair too hard. If anything, she actually kind of likes it. Her hair was always a bit thin anyway, and before all this started, she usually had this sort of "messy" hairstyle going on. Now, she looks like a little girl! As for getting a wig, we’re going to hold off for a while. Who knows, she might not even want one.
The hair hasn't really started falling out yet. To be honest, I'm not entirely sure how the process works with these kinds of treatments.
No nausea so far! She’s still sticking to her routine with raw propolis, Taheebo tea, Breuss's juices (beet, carrot, currant), and occasionally we sneak some Noni into the hospital for her.
Regarding other prognoses... those came after talking with the doctors without Mom in the room.
Best to everyone!

steelbadger83 said:...and she was getting Imel injections (she’s still on them because they have to be taken for five years)...

Could someone please explain a bit more about Imel? Specifically, regarding those Imel injections—where do people actually get them, how does the process work, and what is their exact role in the overall treatment plan for carcinoma?
Thanks!

Regarding the whole hair loss thing—from my own experience (and yeah, I’ve dealt with this twice now, plus I’m starting "Celestol" again in just a few days)—all I can say is you might as well just shave it all off right away. It's easier that way... and honestly, since Medicare covers a certain amount toward prosthetics, you can get a wig out of it. So, it's not even that huge of a deal, I guess. To be fair, it doesn't really bother me that much because my hair always grows back looking gorgeous and healthy anyway... (I actually have pretty long hair right now). But sometimes I still think to myself... if the price of my life is being without hair, then fine, I'll happily be bald for the next hundred years. :-)
Best,

Amanda Williams64 said:Can anyone shed some light on mistletoe—specifically the injections? Where do people actually get them, how are they administered, and what exactly is their role in the broader cancer treatment landscape?
Thanks!

From what little I understand—and I’m hoping to have more clarity by tomorrow—this is widely utilized throughout Europe (though apparently not here). In places like Austria, for instance, oncologists and homeopathic practitioners almost universally recommend them. However, in Austria, you typically need an oncologist's prescription; I’ve read similar accounts regarding the process in the USA as well. This likely falls under the umbrella of immunotherapy. The theory is that it significantly bolsters the immune system, and from what I gather, the treatment regimen is quite extensive. As soon as I can dig up more concrete information, I will update this thread. I believe steelbadger83 mentioned using them herself.
steelbadger83, PLEASE SHARE YOUR EXPERIENCE WITH THESE MISTLETOE INJECTIONS!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The injections are called Iscador, and if I recall correctly, there are different series—like 0, 1, and 2. Right now, I’m actually on series 2.
It’s basically an immunostimulator, and it’s been shown to have anticancer properties too, which I guess is why we use it.
I started doing two injections a week just under a year ago, though you have to be careful because you shouldn't take them if you're dealing with any bleeding or if you happen to run a fever. Once you finish a box, you take a one-week break, but since I'm on series 2, I actually take a two-week break instead. Also, you probably shouldn't give them within at least 48 hours of chemotherapy, just to be safe. Each box comes with seven injections that you follow in order, since they're numbered. Usually, the reaction is just some redness and swelling, which seems normal, but it shouldn't be anything too extreme. If the reaction feels like too much, I think you're supposed to cut the next dose in half—basically, put half the contents in one syringe for yourself, then fill a second syringe with the remaining half, pop that one in the fridge, and use it two days later. I haven't really dealt with any other side effects, at least personally.
Right now, I’m just doing one injection a week, with those two-week breaks between each box. I order them through a pharmaceutical marketing company, and two boxes cost about $250, which ends up being enough to last me for three months.

steelbadger83 said:The injections are called Iscador; if I recall correctly, there are series 0, 1, and 2. I am currently on series 2.
It functions as an immunostimulator, and its anti-carcinogenic properties have been established.
I started with two injections per week just under a year ago, though one must avoid them if dealing with bleeding or a fever. After finishing a box, you take a one-week break—though with series 2, the gap extends to two weeks. As a precaution, you shouldn't administer them within at least 48 hours of chemotherapy. Each box contains seven injections, which are administered in numerical order. A typical reaction involves redness and swelling, which is expected, provided the reaction isn't excessive. If the reaction is too intense, you simply halve the dose: put half the contents into one syringe for administration, then fill a second syringe with the remaining half, store it in the refrigerator, and use it two days later. Aside from that, I haven't experienced any other side effects.
Currently, I am taking one injection weekly, with a two-week hiatus between boxes. I order them through a pharmaceutical marketing rep, and two boxes cost roughly $250, which lasts for three months.

PLEASE TELL ME, WHO ON EARTH RECOMMENDED THESE INJECTIONS TO YOU? AND DO YOU HAVE ANY CLUE WHAT OUR AMERICAN ONCOLOGISTS ACTUALLY THINK ABOUT THEM?

I know someone who went through brain tumor surgery followed by rounds of chemo.
The doctors couldn't get the whole thing out because of its wedge shape—it would’ve required another major surgery—so he just decided he was done with the operating table.
He started taking this supplement called Biocil, and somehow, the remaining part of the tumor just dried up. Honestly, his doctors were floored.
Now, this guy holds an executive position at his company, stays busy, and feels fantastic.
Was it a case of spontaneous remission or did the Biocil actually do the heavy lifting? Who knows. But man, it felt like a massive glimmer of hope when things looked so bleak.
You can find everything you need to know about Biocil online if you're curious.

Look, I don't know if this sounds like an ad—and trust me, it isn't, I have zero ties to the manufacturer—but I just want to help. I lost my own mother to KLL just ten days ago.
If I had known about this back then, I would have tried everything. We hunted down every supplement under the sun, but we never found this. Maybe it could have given her more time, though at her age and with how long she'd been sick, maybe it wouldn't have changed the outcome.

A friend of mine who recently had lung cancer surgery has also started taking it, though it's way too early to tell if it's making a difference.

From what I've read, it's approved for use by the relevant authorities in Mexico and is being monitored by medical professionals.

I’m really hoping this sudden silence isn't some kind of bad omen or a sign that something terrible happened.😕 Please, just check in when you can, even if you don't have the best news to share.😎

Amanda Williams64 said:I truly hope this sudden silence isn't the quiet before some kind of storm. It’s unsettling, isn't it? One moment there's activity, and the next, nothing but an eerie stillness. I can only pray it isn't a sign of something tragic unfolding behind the scenes.😕 Please, reach out—even if you don't have much good news to share.😎

I suppose I’m holding onto that same hope, too...

My husband has been dealing with some new developments lately. We’ve finally finished up that wider area radiation treatment—he wrapped up his 27th session just recently.

And so, it begins—they’re moving forward with the targeted radiation treatments. They’ve got about fifteen cases lined up over at the Mayo Clinic, since the local hospital doesn't have the 3D CT equipment necessary to handle this properly.

My aunt just went through surgery to remove two brain metastases. Since they were located in the left temporoparietal region, they were pressing against her speech centers and affecting the coordination in her right arm and leg. It seems like the worst is over, though, because she’s starting to talk again and can even walk to the bathroom on her own. We were terrified she might end up paralyzed or lose her ability to speak, but thank God, the surgery was a success. As for the primary source, the doctors suspect a growth on her face—something she’s had for years that never really bothered her, though it has been growing lately. They think it might be a calcified parotid gland that's undergoing some changes. Now, we’re just waiting for her to recover from the surgery before moving on to a tissue biopsy of the gland and, hopefully, its removal if everything goes well.
After that, I’m not entirely sure what the next steps are—maybe chemo or radiation... I just don't know.
We’ve been using Biocil-culi, which we've heard great things about, along with Tahitian Noni-koga from Calivita. Her diet is strictly vegetarian, mostly whole grains and veggies, very little fruit, and she follows macrobiotic principles. One thing to note: the instructions for Biocil mention that people dealing with this should strictly avoid foods high in B-complex vitamins, like bananas... just thought I'd share that info with you all.😳
Sending you all so much love and support.🙂

Iscador is actually registered over in Austria or Germany and is even included on the lists used by oncology hospitals. It’s got a proven track record as an immunostimulator and works to help fight off cancer cells.
As for our local oncologists here in the States, their opinions are pretty split, I suppose, mostly depending on how open they are to alternative types of treatment.
Personally, I feel like I should try anything that seems reasonable to me, and I don't want to limit myself strictly to conventional medicine, though I know I might not always be thinking about it the right way.

I ended up going through six jars of Biocil. If I had one complaint, it would definitely be how expensive it is. But the truth is, I managed to get through both chemo and radiation without any major issues, and I even made it through this past spring without dealing with any seasonal allergies. Plus, I didn't catch any of those nasty viruses the kids usually bring home, which is pretty unusual for me. It's also true that my test results look good, though I think it would be a bit much—maybe even totally unfounded—to claim that it was all thanks to the Biocil. Regardless, it certainly didn't hurt me.

My dad has completely started boycotting anything remotely logical or health-conscious.
Even though his lab results—considering his actual diagnosis—are nothing short of phenomenal (his markers are dropping and are well within the healthy range)—he told my mom yesterday morning that he’s done with everything. He won't eat anything she cooks, he refuses all "supplementary" stuff (beetroot, teas, aloe vera), he's finished with the honey tonic, and he’s basically on a total fast. To top it off, he told her he’ll keep making our lives miserable until we finally just freeze him out—and once we do, he'll leave and we'll never see him again.
He’s been sticking strictly to this since yesterday.
For days now, he hasn't spoken to my mom or my brother—for reasons known only to him. He isn't answering calls, he isn't calling anyone, and whenever someone tries to visit, he "shuts them down" immediately by claiming he's too tired or has somewhere to be... effectively sending everyone home.
His reasoning? Apparently, there's no point in doing any of this if he doesn't see immediate results (???!!!).
PLEASE, EVERYONE, WHAT CAN WE DO? HOW DO WE GET HIM TO SNAP OUT OF THIS?!
Being kind isn't working, and being firm isn't working either. Please don't just tell me to take him to the doctor—his specialist essentially wrote him off the moment she saw him, offering absolutely zero hope for recovery (but I won't go into that, or I'll just end up in a massive rage).

northernfox9 said:My dad has basically started boycotting anything involving common sense.
Even though his test results are actually phenomenal given his diagnosis (his markers are dropping and are well within the healthy range), he told my mom yesterday morning that he’s done with everything. He said he doesn't want any more home-cooked meals, won't touch any "supplements" anymore (beetroot, herbal teas, aloe vera, etc.), isn't drinking his honey tonic, and just refuses to eat anything at all. He even told her that he’s going to make our lives a living hell until we finally give up on him—and once we do, he’ll leave and we’ll never see him again.
He's been sticking to this since yesterday.
For days now, he hasn't spoken to his mom or brother (for reasons of his own). He isn't answering anyone's calls, won't call anyone back, and if anyone tries to visit, he "handles" them almost immediately by making excuses about being tired or having somewhere to be, just to get them out the door...
The reason? He thinks there's no point in doing any of this because nothing he's done so far seems to have helped (???!).
PLEASE PEOPLE, WHAT DO WE DO? HOW DO WE GET HIM TO SNAP OUT OF IT?!
Being nice isn't working, and being tough isn't working either. And please, don't just tell me to send him to the doctor—she basically wrote him off the moment she saw him, and she offers absolutely zero hope for recovery (but I don't want to talk about that, or I'll just end up exploding in anger).

Oh man, that sounds awful... maybe just try telling him how much progress he's actually made with those supplements and remind him that with Bog's help, he can get through anything. Tell him you need him around because you love him, and that's why he has to keep fighting. My aunt once told me she didn't care about herself at all; in moments like this, it's actually pretty normal because people feel so helpless (I even felt that way for her myself). I told her that even if she doesn't care about herself, the rest of us do, and that thinking that way is just selfish. You simply have to fight. You all have to stay strong...

northernfox9 said:Please don't just tell me we should take him to the doctor. She basically wrote him off the second she saw him, and she isn't offering any hope for recovery whatsoever (but I won't go into detail because I'll just end up getting a massive lecture from people who'll lose their minds).

And regarding this whole situation—they wouldn't even admit her to the hospital, let alone talk about surgery. They just dismissed her entirely; that’s just how those places operate. You have to get things "moving" first, and then there might actually be some hope for an operation...

Hey there!!!
So, I’m all set for Monday—chemo starts then. I went ahead and shaved my head and picked out a wig... man, what can I even say... I don't know... but since I've been through this whole ordeal before, it's not exactly a total mystery what's coming my way. I'm really, truly hoping things go smoothly this time around...
it has to....
CHEERS

Grace Fowler, good luck! 😘

I mean, looking at how northernfox9 is reacting, it seems pretty obvious he’s just completely spooked, and honestly, that kind of behavior usually feels like a way to grab everyone's attention. Maybe he should consider sitting down with a therapist or even just talking things out with a priest?

Sending you so much love and luck, Grace Fowler, we are all rooting for you! 👍