Posts by fadedtrucker5

melloworca6 said:So, is this your last round of radiation? And how much longer do you have to deal with chemo?

Radiation goes until August 22nd, assuming the machine doesn't act up. 👍
First round of chemo is 7 days, then maybe a 23-day break, then 5 days of chemo, then another 23-day break, then 5 more days... basically doing this dance for 6 months. 👍

Back to counting grains tomorrow. 👍 I head in tomorrow morning for bloodwork. Just sit there for three minutes—praying to God while the machine processes everything—to see the verdict. If platelets are over 100, we move forward. If not... nothing happens. 😢

Starting Monday, I’ll be loading up on supplements. Last night, I actually managed 7 hours of sleep straight thanks to a pill. 🙏

Fingers crossed for good blood results tomorrow. Everything else is just manageable. 🙏
Love you guys 😍

melloworca6 said:It’s almost exhausting reading you. You’re just so incredibly positive. I guess. 😍 You have to be that way. I don't doubt for a second that with an attitude like yours, you'll manage to defeat this whole damn mess. 😘

🙂

So, I finally got the machine running today without any drama. It actually worked normally this time, which is a massive change from yesterday when I was stuck waiting around for four hours even after taking my Temodal. They were way too slow with the air purge, but I guess at least I didn't waste the whole day. 👍
Maybe I'll be working on my platelet count this Friday. I guess. 🎉 Still can't sleep. Insomnia is hitting hard, I guess, but maybe it’s bearable. If my blood counts stay steady, I might actually be ready to go. Seven days left of chemo. 🎉 I guess if the bloodwork looks good this Friday, that might be the final check. Maybe. 👋

Ashley Mitchell81 said:I’ve only scrolled through this page, so my apologies if this is old news.

Basically, researchers recently found that regular exercise—about 2.5 hours a week—actually boosts cancer survival rates. This doesn't apply to those dealing with severe anemia caused by the illness.

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You can check out this video on it.

Good luck to everyone.

Thanks. I work out several hours a day, and I guess it makes me feel pretty good.👍

goldeneagle7 said:I stumbled upon this thread by accident. I haven't read everything, but I suppose I’ve gained quite a bit of experience at my young age, given my own diagnoses and the people around me. Honestly, we handle all of it perfectly; maybe we just see life through a more beautiful lens now. Everyone pities me, and the second I end up back in the hospital due to a setback, they immediately go into a state of mourning. But personally? I actually enjoy being in the hospital. The staff, the doctors, the nurses... it’s just my way of life, I guess. 😁
I’m 16 and a half. I've got SLE, chronic hepatitis—they can't even decide if it's autoimmune or not—scoliosis, and both chronic and acute colitis. I guess.
Every time I find myself at Children's Hospital in Boston, I see so many kids battling leukemia. When those children smile... I guess it’s just the most beautiful thing. Their smiles are so genuine, so untainted. It almost makes me forget that corrupt people even exist. Maybe.
Many greetings. I suppose. 😁

That’s the right way to look at it, I suppose. Just enjoying each day... loving everything. Maybe.
I suppose I’m just lucky to wake up every morning. I try to appreciate the small things, I guess. 🙏

Good luck, I guess.

melloworca6 said:Great, I guess today finally turned out to be your day. 😘

Now everyone’s pushing that blackberry wine. 😳 People who actually enjoy drinking say it's amazing, but I can't imagine why; whenever I've tried any kind of wine, my stomach just turns.

Personally, I love wine. I'll probably have a glass with dinner. 😍

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.

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.🙂

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. 🙂

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. 🙂

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: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. 🙂

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. 😘 🙂

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. 🙂

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? 🙂

Angela Wright said:It’s just about the transfusion. My mom used unnamed propolis (she was also on Temozolomide) and her scans never showed any decline.

Just tell me where I can find it and what it costs, please! 🙏 Does the brand actually matter?
Also, if you happen to know—if my father has the same blood type as me, could he donate directly to me (he’s done over 100 donations already), and would those platelets be better than some random donor's? We both have O+ and we're related.

Hey everyone, I need some help..

Can anyone tell me how to get my platelet count up?
I'm on Temozolomide, getting 4 ml of unnamed via injection, plus head radiation.
My platelets have dropped by half in just a week, and I'm currently in my fourth week of chemo.
I’ve been taking three 200mg tablets of beta 1,3 glucan daily, along with beet, carrot, and lemon juice...

They're drawing blood again this Monday. If my platelets fall below 100, they won't proceed with the chemo; if they drop too low, I'll need a transfusion.

My question is—is there any way at all to boost my platelets in just three days?

Thanks for any advice 🙏

Maria Fisher46 said:Maybe try reaching out to wanderingcobra76, she's a radiologist... might be able to help. I guess. Regards. 🙂

Thank you so much 🙏

Hey everyone. Does anyone actually understand how to read a PET CT scan? Maybe someone could explain these results to me. Thank you so much.

I was certain it was just a stapler 🤷

wearydriver50 said:Has anyone tried ear candling? I wonder how you even do it and if it actually does anything later.
When you first head outside after being indoors, should you put cotton in your ears or is it unnecessary?

Is that the same old scam? I guess it’s supposedly proven that those things don't work at all... They just present the residue they claim is earwax as proof, but it’s probably just burnt wax.🤷
Why would you even want to clean your ears like that? If you can't hear well, maybe just go see a doctor for a professional flush..👍