Support resources for families dealing with cancer and other serious illnesses

fadedtrucker5 said:Just tell me where I can grab this and what the ballpark price is! 🙏 Does the brand actually matter?
Also, if you happen to know—if my dad has the same blood type as me, can he just donate directly to me (he’s done over 100 donations by now)? Would those platelets hold up better than someone else's? We both have O+ and we're related.

You can order them online straight from the source; I'm guessing it'll be cheaper than hitting up a local pharmacy. The company is called unnamed.

melloworca6 said:I guess you can order directly from their website. It's probably cheaper than going to a CVS or something. I think the company is called unnamed.

I bought them today. I guess I’ve already taken four... maybe. 🙂 I suppose I'm hoping this works by Monday... Maybe you know something about this regarding the transfusion? 🙂

Look, I’m not a doctor, so don't take my word for it.

As for chemo, I remember my cousin's mom used to drink this concoction of carrot, beet, and lemon juice, along with kombucha and noni juice. It didn't cause her treatments to be delayed once because her blood counts stayed solid. There was one time she had terrible labs on a Friday right before a Monday session, and she went absolutely nuts drinking massive doses of those juices all weekend, and by Monday morning, her numbers were back where they needed to be.
Maybe that helps someone out. 🙂

melloworca6 said:Unfortunately, I have no clue; I'm not an expert in that field.

As for chemo, I know my cousin's mom used to drink carrot, beet, and lemon juice, kombucha, and noni juice, and they never even postponed her treatment because her blood counts stayed good. I recall one time her levels were terrible on a Friday when she was supposed to have chemo on Monday, so the woman just went all out with massive doses of those juices until Monday, and somehow her counts improved.
Maybe that helps someone. 🙂

I've been overwhelmed with everything today. 🙂 Plus, my doctors recommended I head up to an altitude of at least 3,000 feet, so here I am in the Blue Ridge Mountains... 🙂 We'll see what happens on Monday; I just hope this all works out. Thanks for the help. 🙂

fadedtrucker5 said:I’ve been dealing with everything all at once today. 🙂 On top of that, my doctors suggested I head up to a higher altitude—somewhere over 3,000 feet—so I’m currently hanging out in the Blue Ridge Mountains. 🙂 We’ll see how things look on Monday. I really hope this works out. Thanks for the help. 🙂

I'm crossing my fingers that this helps you out so you don't have to push anything back. 🙂

melloworca6 said:I’m crossing my fingers that this helps you so you don't have to put anything off. 🙂

Thanks. I just have to hang in there for 10 more days; I've already finished 32... This first round... Once I get through all the radiation, the chemo doses should be easy enough, I guess. 🙂 Thanks so much for the advice and the support. 😘 🙂

So, you’re almost at the finish line. 🙂

You can push through these last 10, especially since you've survived everything else thrown at you so far. Honestly, it's just a shame anyone ever has to deal with stuff like this in their lifetime. 😢

melloworca6 said:So, you're almost at the finish line. 🙂

I guess you'll push through those last 10 sessions if you managed everything else. It’s just... honestly, it's such a shame anyone has to deal with this kind of thing. 😢

This is nothing compared to all the other headaches life throws at you. I'd sign up for this any day just to never have a headache again—and not even one from surgery. 🙏 Treatment really isn't as bad as people make it out to be, the hospital staff is wonderful, and our neurosurgery department here is fantastic. Just staying positive. I feel happy every morning when I wake up; I love life and the people around me. Every cloud has a silver lining. 🙂

It’s honestly refreshing to read a post like this. 🙂

I think it's great that you're staying so positive and keeping such a healthy mindset. 😘 It’s a hell of a lot easier to deal with—or just live with—a diagnosis when you don't view it as some massive tragedy, but instead just accept it and try to make the most of life anyway.

Personally, I’m really hoping there isn't a comeback after everything you've been through, and that you can finally say goodbye to radiation and chemo for good. 🙂

fadedtrucker5 said:I picked some up today and I’ve already knocked back four of them... 🙂 I’m hoping this starts kicking in by Monday. By the way, do you happen to know anything about how this works regarding blood transfusions? 🙂

My mom was using propolis from that one supplier, and we actually ended up ordering five units at once through the mail because the bulk discount was insane—you basically get a free box if you buy in that quantity. She was taking massive doses, like three sets of five capsules every single day, while she was going through her treatment.
When it comes to transfusions, you aren't just talking about a simple "vein-to-vein" transfer. It’s actually a platelet preparation where they isolate them from the blood. In this specific situation, there isn't really a massive necessity for the donor to be a relative. That said, I do know a case where a fighter's husband had a violent allergic reaction during a platelet transfusion, so you should definitely ask the doctors first. Generally, platelets have to drop significantly and show a clear trend of continuing to fall or plateauing before anyone even considers ordering a transfusion.

Angela Wright said:My mom used to get propolis from unnamed; we’d order five packs at a time through the mail because it was way cheaper and you’d get a free box. She was taking massive doses—like 15 capsules a day—while she was undergoing treatment.
Regarding the transfusion, it isn't exactly a direct "vein-to-vein" thing, but rather a platelet preparation separated from the blood. Honestly, I guess there isn't a huge necessity for the donor to be a relative, though I do know a case where a fighter's husband had a nasty allergic reaction during a platelet transfusion, so maybe just ask the doctors. They usually only decide on a transfusion when the platelet count drops significantly low and shows a tendency to stay stagnant or keep falling.

I'm taking propolis exactly as the label says—two capsules twice a day before meals—along with 200 mg beta 1,3 glucan three times a day, plus some beet, carrot, and lemon juice. We'll see what the platelet numbers look like tomorrow. Please pray for me. 🙂

melloworca6 said:It’s actually quite nice to read a post like this. 🙂

I suppose it's good that you're staying so positive and keeping the right mindset. 😘 It’s probably easier to deal with an illness when someone doesn't view it as some grand tragedy, but instead just accepts it and tries to make the best of things.

I'm hoping nothing else comes back after all this, and that you won't have to deal with any more radiation or chemo. 🙂

Thank you, you're wonderful... People like you are what keep me going, I guess.. 🙂
The main thing is my MRI 6 months after surgery shows a cyst 🙏 , but for now, I'm healthy, and once I get through this, I'll go back to my regular life (aka work) 😍

I won't spiral if my platelets drop tomorrow; there isn't much more I can do besides what I'm doing now, though I really wish I could just power through this whole thing in one go. 🙂

😘

I’m not sure how much alcohol you can handle, but I know a woman who managed to fix her thrombocytopenia—low platelet count—using steroids and blackberry wine. Her platelets were sitting at around 30. Every single day during her period, she had to visit the doctor just to make sure she didn't bleed out. So, if you're allowed to have a drink every now and then, maybe give that blackberry wine a shot. It worked wonders for her blood counts, at least based on what happened in her case.

Anyway, I'm keeping my fingers crossed that your blood work comes back perfect. 🙂

melloworca6 said:😘

I guess it depends on how much alcohol you can actually handle. I know a girl who managed to fix her thrombocytopenia—low platelet count—using steroids and some blackberry wine. Her platelets were down to about 30; she basically had to see her doctor every single day during her period just to make sure she didn't bleed out. So, if you can manage a little drink here and there, maybe try that blackberry stuff. It worked wonders for her blood counts, at least based on her case.

Anyway, I'm crossing my fingers that your blood work turns out okay. 🙂

😘 🙂
Actually, I just got some blackberry wine from a local vineyard recently. 👍 I suppose I'll ask the hospital tomorrow if a tiny bit is okay given the Temozolomide. 🤷 The unnamed told me not to become an alcoholic—but surely a tiny sip won't kill me...
They lowered my unnamed from 8 to 4. 🙏 Maybe that’s why my platelets dropped. Who knows. In just one week, they went from 240 to 117. 😢
People say this happens to everyone, that it's normal for them to drop during this stage, but I really, really wish I wouldn't have to pause treatment. 🙂

fadedtrucker5 said:I’m taking the propolis strictly by the box instructions—2x2 before meals—along with 3x1 doses of 200mg beta 1,3 glucan, plus a beet, carrot, and lemon juice blend. We’ll see what the platelet count looks like tomorrow. Keep me in your prayers. 🙂

I honestly can't recall how we landed on that 3x5 dosage. I think we saw a testimonial on their website from someone who was using massive doses while undergoing treatment. I remember calling them to double-check, and they told me that for patients facing serious illness, higher doses are necessary. Your best bet is to just call them directly.

Don't go expecting any massive breakthroughs in such a short window. When I started my mom on high doses, it was about ten days before she actually began her treatment. There was a point where she had slipped into a coma, and I was literally mixing crushed propolis into yogurt to give her through a feeding tube. After they performed a decompression, she regained consciousness and was able to proceed with her therapy. Thanks to that propolis, her blood counts never dropped, and she avoided any infections, which is absolutely critical during this kind of treatment.

Angela Wright said:I can't quite recall how we landed on that 3x5 dosage... I think we just read some testimonial on their website from someone taking those kinds of loading doses during treatment. I remember calling them to double-check, and they mentioned higher doses are necessary for patients who are seriously ill. You're probably better off just giving them a call.

Don't expect any massive leaps in progress in such a short window. I started my mom on loading doses about ten days before her therapy kicked in. She actually slipped into a coma at one point, so I was feeding crushed propolis in yogurt through her feeding tube. They performed a decompression, she regained consciousness, and then continued with the treatment. Thanks to that propolis, her blood counts never dropped and she avoided infections entirely, which is critical during this whole process.

I really need to ask the hospital about all this—I guess I don't dare increase the dosages on my own, even if it's just propolis.🤷

I suppose I'll just hope for the best and try to stay positive until proven otherwise... Right now, at 8:40, I have to head to the Social Security office to prove I'm not disabled and capable of working, and then it's straight to the lab for blood work.
Anyway, everything will be fine; the date is good—August 8th. Everything usually works out when the dates align like that.🎉

Sending love to everyone—I'll let you know how it goes. Thank you, you've been wonderful.🙂

fadedtrucker5 said:I really need to run all of this by them—the hospital staff. I don't feel comfortable bumping up the dosage on my own, even if it's just something like propolis.🤷

They’ll probably just tell you not to take anything at all while you're undergoing treatment.

fadedtrucker5 said:😘 :g rli:
I actually just got some homemade blackberry wine from a local vineyard :to p: I'll ask at the hospital tomorrow if I can have a little bit, considering the Temozolomide 🤷 My doctor told me not to become an alcoholic—but I doubt they'll care about half a glass...
They lowered my unnamed from 8 to 4 🙏 Maybe that's why my platelets dropped... Who knows. They went from 240 to 117 within a week : (
I mean, they say this happens to people, that it's normal for them to drop during this stage, but I really wish I wouldn't have to pause treatment :m oli:

Great, if it’s homemade, it’s even better.🙂

This girl was on corticosteroids, so she was drinking that wine even though you aren't supposed to drink alcohol while on steroids either. The main thing is to space out the pills and the wine (if you take your meds in the morning, have this in the afternoon or evening).
Definitely ask if it's okay, but since you won't be drinking it by the gallon, it shouldn't be an issue.

fadedtrucker5 said:I have to ask all of that at the facility—at the hospital... I don't dare increase my doses on my own, even if it's just propolis 🤷

I'm just hoping I'm doing alright; I'm going to force myself to stay positive until proven otherwise... Right now, at 8:40, first I'm heading to the Social Security office to prove I'm not disabled and can still work, and then off to get blood work done...
Anyway, it'll be fine. It's a good date—August 8th. Everything usually turns out well on good dates like 8/8 🎉

Love you guys—I'll let you know how it goes. Thanks everyone—you're wonderful 🙂

Today is your day. 😘

As for the propolis, honestly, nothing bad will happen if you take a slightly higher dose, especially if it's just a high dose for a couple of days.

I used to take Noni because of some of my own issues, and even though the instructions said 1-2 caps, I was knocking back 3 a day (my unnamed levels were cut in half 🎉), and my mom—who's a nurse—when she went through chemo, she was taking 5-6 caps, especially the weekend before chemo, and she never had to delay a single session.

And if you ask doctors about stuff like this, most of them will just wave you off.

Platelets at 110! Finished chemo, got my Dex injection, and did some radiation. Next checkup is this Friday.🎉 👋

The doctor said I can eat whatever I want, maybe even have some red wine.👋

Thanks everyone, much appreciated.

Oh, and everything is fine with Social Security—they say I'm not disabled after all.🙂 🤣Who knows what those people actually know.

Nice, looks like today was finally your day. 😘

Now everyone’s going to start raving about blackberry wine. 😳 You know those wine snobs who swear by it? Well, I can't wrap my head around any of it—tried some once and it made my stomach turn.