Posts by feralridge3

Carol Newman21 said:I know exactly how the whole process goes, unfortunately quite intimately. You can certainly take the path of least resistance if you have the right people backing you up.
Believe me, I have been through more than my fair share of this, sadly.
You misunderstood me; I didn't say anything about self-administering chemo. Of course, it's done under an oncologist's supervision—that's standard. I was simply pointing out that there might be a way to make all those tests and checkups easier by using a local clinic or lab. Since she isn't living in the city, commuting every single day is going to be a nightmare, even if Temodal is relatively easy to tolerate. Plus, the heat alone might make things worse for her.
I’m just trying to help; that’s exactly how we handled our testing.
🙂

Personally, I'm hoping I'll handle the treatment just as easily so I can actually get back out into nature once the temperatures drop this fall. Right now, nothing. It's just too hot, and this heat is really getting to me.
I'm heading into Chicago tomorrow.
The package hasn't arrived yet; I was really hoping it would show up before my appointment with the oncologist.

I picked up some propolis today.
Are the capsules supposed to be taken before meals?

Angela Wright said:It doesn't quite work like that. Bloodwork is handled at the outpatient clinic. They draw blood from a vein before every new cycle starts, and then after the treatment, they do a finger prick to check how things are looking. Our doctor would have already sent over the lab orders beforehand. If anything came back outside the normal range, you’d need to contact the on-call doctor at the clinic immediately. We’ve actually never run into an issue like that.

As far as the dosage goes, you get a vial for each cycle to take home. You drink it in the morning on an empty stomach and just follow whatever specific instructions the doctor gives you regarding blood draws or any other potential scenarios.

Honestly, the best thing you can do is write down every single question you have on a piece of paper so you can present them clearly to the doctor. It prevents any confusion.

That's solid advice; I forget everything regardless. 😲
I'll know more details this Tuesday.
I get my blood drawn right here in my own city; it's always been done that way.
To me, it makes perfect sense that I'd have to go into the hospital on the first and last day of the cycle.

Angela Wright said:Natural propolis👍

I think I'm going to give the propolis a shot.
I actually stopped taking the beta glucan; lately, I've just been sticking to beet juice.

Carol Newman21 said:I don't understand why you're pushing for the hospital if you already have Temodal at home.
Just get your blood work done—CBC and everything else—and if the results look good, you can start therapy. Then, once the treatment cycle is over, run the labs again...
That's exactly what an oncologist should be advising you.
As for buying the Temodal, I already mentioned this: you're just creating unnecessary stress and making things harder for yourself. You know when your next cycle starts, so just head to the pharmacy two or three days early and pick it up. It’s fine to keep it at home; there's no need to keep driving all the way into the city for no reason...
You're just complicating an already complicated situation and making life harder than it needs to be.
Forgive me if I'm being a bit blunt, but I truly just want to make things easier for you and help.

My father felt perfectly fine while he was on Temodal. He'd go for a light walk in the morning when it was still fresh, and then another relaxing one in the evening after the sun went down—nothing strenuous, just easygoing.

He was on the highest dose and handled it all quite well, thank God. Just be careful with the sun and watch out for blood pressure spikes.
Like I said, I'm here if you need anything.

I'm not trying to complicate things; I just honestly don't know how the process works. 🤷
It's hard for me to imagine they'll actually let me manage my own blood work and dosages for seven months straight. 🤷

Actually, I'll see what the doctor says tomorrow, and we'll see what "wisdom" he picked up from his colleagues at the symposium.

Angela Wright said:Well, the only side effect was some fatigue and exhaustion. However, my mom started declining rapidly toward the end of her chemo, but that wasn't because of the Temodal—it was because the disease itself was progressing. She actually had a different diagnosis than what you're dealing with.
Watch your overall physical condition and boost your immunity. Walks are fine, just don't overdo it and always make sure you have company. Stay out of the sun!

If all I'm going to deal with is fatigue and exhaustion, then sign me up right now. 😉
I honestly already saw myself stuck in bed; I mean, once Temodal becomes as expensive as a penthouse in Manhattan, it'll definitely knock me sideways. 🤷
Ever since they poked around in my brain, I've come to some pretty heavy conclusions. 😁

Summer is coming and it’s going to be scorching, so I'm not planning on pushing myself too hard with any big outings, but it would really help if I could get out into nature once in a while—even if it's just sitting under a tree reading a book. 😁
I know I have to be careful with the sun.
I actually bought a hat made from special UV-protective material.

As for immunity, I was taking beta-glucan for about nine months. My oncologist told me to stop because I'd been on it for so long and needed to take at least a three-month break.
Now I've picked up some of that beet juice.
What else do you recommend?

Angela Wright said:My mom was on Temodal and only threw up twice, and even then it was just water.
She didn't have any real issues.

I’m over here mentally bracing myself for absolute misery, and then you come along and completely disappoint me with how easy it was for her. 😁
Did she feel weak or anything?
Honestly, if I could just catch a scent of the mountains during chemo—nothing crazy, just a little stroll for an hour or two at my own pace—that would do more for me than seeing five different psychiatrists.
That would be way more helpful than any therapy session.

Carol Newman21 said:Sorry for the late reply, I wasn't near my computer.

-In principle, yes, those are what you take. I’ll just reiterate my advice: please make sure to take something for nausea beforehand.
-When you're getting Temodal through Medicare, they don't usually give you enough to take home because they administer the daily dose right there at the hospital and that's it. Try talking to your oncologist; since you aren't based in Chicago, they might be able to authorize some for home use.
-Or you can get them at a pharmacy with an oncologist's prescription.
Now you've confused me—if you're buying them, then they are yours, so naturally, you can take them at home. Just consult with your oncologist regarding the timing and dosage.
-I don't think there's any need to stockpile doses in advance; just order them from the pharmacy a couple of days before chemo and you're set.
-I'm here if you have more questions. Believe me, I've exhausted every possible information source, and I'm more than happy to help with advice.

Something for nausea—noted.
My first round of chemo was clearly a breeze. I didn't have many issues, just a few headaches a couple of days after the dose, and I was out enjoying nature and walking around; it was lovely. I doubt it will be quite this easy this time around. 😢

If I'm taking it five days a week, it would be ideal for me to go into the hospital on Mondays and Fridays. On the other days, I could just take the dose at home. I'll try to work something out. The thought of a daily ambulance ride into Chicago during the summer heat is definitely not something I'm looking forward to. 🙄

I happened to ask about Temodal at a local pharmacy in my town, and the woman told me they'd need to order it in. Someone mentioned a pharmacy over by the main square in downtown; apparently, they stock those expensive medications.

You mentioned you had four boxes—the 20mg and 100mg ones. Does that mean two boxes of one and two of the other?
Thank you once again.

cosmicorca said:I haven't really posted in this thread until now, though I've had plenty of reasons to😵. A friend happened to bring this topic to my attention—specifically regarding Casey Palmer's brief battle with that "vicious enemy" (Casey Palmer, sending you my sincerest condolences once again), so I've been following along quite closely over the last ten days or so.

Well, it wasn't exactly an accident. 😉
I knew you’d be more than willing to share your experience to help others out.

cosmicorca said:I won't ramble on any longer; I'll just leave you with that famous phrase I've been using quite a bit lately:"They both fell!" 🙂

🙂

Casey Palmer5 said:Guys, I went cave diving today. My crew set up some occupational therapy for me, and honestly, it felt better than any Normabels could ever manage.

Kudos to the crew. 👍
I really think that’s the best kind of support they could have organized for you.

For me, those few easy hiking trips I've taken since my tumor diagnosis meant more than any medication or psychiatrist ever could.
Once I get out into the woods and up into the mountains, there isn't anything left in this world that can ruin my mood. 😉

slyseal28 said:I wanted to tell you that if it truly had to be this way—it would have been better if he hadn't suffered for so long. I've spent days watching my love suffer, begging me to do something, to help him find peace. On one hand, I selfishly pray to God to keep him by my side just a little longer because I can't imagine life without him... but on the other hand, I pray for it all to end... because this isn't humane.

And I agree with you—let it all just go to hell.

Lately, I’ve been asking myself what I ever did to deserve this agony. 🤷
And why I didn't have the privilege of having everything wrapped up through a quick procedure. 🤷
Instead, I'm just torturing myself and my family like this.

I often think back to my boyfriend, whose brain tumor was diagnosed just two days before mine. He passed away three weeks later. He was only 24 or 25, I can't quite remember anymore, and he had a wife and a small child. It was devastating. 😢
Sometimes I wonder if he was actually relieved that it ended so quickly and that he didn't have to endure the prolonged struggle.

I'm right there with you—just let it all go to hell.

Angela Wright said:There’s no need to buy all your doses at once—in fact, it’s probably better not to. Your dosage might need to be adjusted based on your weight or other individual factors.

That is actually great news.
It’ll make managing the costs a lot easier on my end. 🙂

Carol Newman21 said:feralridge3
I have both the 20mg and 100mg versions available. When determining the dose, they look at body weight, the specific type of tumor, how fast it's progressing, and all that.

Since these are capsules, there are no needles involved. The therapy runs five days a week, and as for the dosage per cycle, it really just depends on how effective it is and how well your body handles it. My advice? Take an anti-nausea med (I think it's Zofran—let me double-check and get back to you) about half an hour before the pill. We used that, and everything went pretty smoothly.
My father has taken four of the strongest doses so far, along with the milder ones I’m donating now, and thank God, he handled them all well. Unfortunately, though, the tumor has become resistant to Temodal, so we are moving on to a different chemo regimen now.

I truly hope this helps you.

I actually have several questions myself, though I constantly find myself forgetting what I wanted to ask. 🙄

If they aren't giving injections, does that mean I can take the capsules at home following their instructions?
Last year was such a struggle for me, having to commute to Chicago every single day for radiation right in the middle of the summer heat.

Where did you purchase the Temodal?

I assume you bought enough doses for all six cycles upfront (since you have some left over). Does the oncologist require you to bring all the doses in at once, or will I be able to pick them up cycle by cycle? That would be much easier. 🙄

I'll try to remember any other questions that pop up; I just need a little more time. 😁

Carol Newman21 said:feralridge3
I didn't give them to anyone else, so no worries—they're yours.
I assume you're talking about Dr. Shante. If he is, he's honestly one of the best out there (I actually chatted with him just a day before he left for his trip). If it's him, just stick with him and trust that he'll do everything in his power to help you; I know from experience. Once he's back, have a talk with him because he knows exactly which "my" Temodal dosage would be right for you, since they come in several strengths. If it's yours, then it's yours.
It would truly make me happy if I could offer this gift and help you out.
Please get in touch regardless, and hang in there—everything can be resolved.

Actually, it's not about that doctor.
From what I understand, there are capsules in 5, 20, 100, and 250mg increments.
Which packaging do you have?

As far as I've gathered, the first dose is milder, and then it gets increased.
When he returns, I'll need to ask him which "size" is appropriate for me. I'll let you know then.
I'll leave my email and phone number in a private message.

I have a few questions:
If I'm understanding this correctly, we're talking about capsules, so no injections?
Is it 5 days a week, every 4 weeks, for 6 cycles?
How did the person handle those specific doses?
Just so I can prepare myself. The first chemo I went through was clearly quite mild, and I managed to push through it pretty easily.

Carol Newman21 said:Hi everyone!
I find myself in a very similar situation to yours, but let me get straight to the point. I have four doses of Temodal left that we purchased privately because our insurance provider wouldn't cover them. Now that the disease is progressing, we have to move on to a different chemotherapy regimen. So, if anyone knows someone who needs Temodal, I would be more than happy to donate it. It is highly recommended for Grade III glioblastoma.
It’s urgent—it expires by October 2009.

🙏🙏
The only thing is, I haven't actually launched my fundraising campaign for the Temodal treatment yet. My surgery was just two weeks ago, and my oncologist recommended Temodal as the most effective option for this malignancy. The problem is that for this specific type of tumor (anaplastic ganglioglioma—which is now a recurrence), Temodal isn't on the standard coverage list provided by our health insurance.
My mother spoke with him today. She is traveling to America for a symposium, so he mentioned he would consult further with the top oncological specialists regarding my diagnosis.
I’ve already prepared the details for the fundraiser. I am just waiting until next week to gather the final pieces of information before I officially kick off the campaign.
You are truly an answer to prayer.
If you haven't already given it to someone else, please count me in.

Casey Palmer5, please accept my deepest condolences.
I am absolutely stunned.

🙂🙂

Casey Palmer5 said:God, life just sucks sometimes.

🙂🙂
People keep telling me that the mountains aren't going anywhere. 😉 Which is technically true, I suppose, but it doesn't exactly do much to comfort me.
The book is called....
I'm not even sure if there's an American edition out yet. I picked up my copy a few years back at Barnes & Noble.

gentletiger46 said:feralridge3-here's a little bit of good news for you! I managed to track down a pamphlet on Hodgkin lymphoma published by the British Minister of Health that outlines the most common side effects of treatment. Here is what they have to say regarding radiation therapy:
See? Maybe those hairs will actually grow back after all; you just have to stay patient!!! 🙂👏

🙂
That really is wonderful news.
I honestly wouldn't want to have to wear a wig. 😢

crimsonscout23 said:Hi everyone.
My boyfriend's father just had a brain tumor discovered (it showed up on his CT and MRI scans). A neurologist there suggested she suspects it's malignant, even though they haven't performed a biopsy yet (there's some talk about getting him to Washington, D.C. as soon as possible for further testing).
So my question is: how can she possibly know if it's malignant without a biopsy being done first?
I apologize for dumping this all at once, but I'm still just so confused and shaken up by everything...

Look, based on the imaging results alone, a doctor can clearly make an educated guess as to whether a tumor will be malignant or benign. In my own experience, they told me not to worry and that the tumor would most likely be benign, but after the surgery and the subsequent biopsy, it turned out to be malignant after all. 😢

From what I've observed in hospitals and gathered from conversations with various physicians, I’ve come to realize that whether the tumor is malignant or not isn't even the most critical factor—the real priority is whether it's operable, meaning, can it be completely removed.

How exactly is a brain tumor biopsy performed? 🤷
Maybe this is a stupid question... 🙈

Lisa White54 said:See!
How are you feeling now? You really have to watch out for viruses right about now! Boost your immunity with absolutely everything you can find! Hang in there!!

I’ve been eating plenty of fruits and vegetables and taking glucan.
This flu really knocked the wind out of me; I was stuck in bed for five whole days.
Honestly, I don't even see the point of that last round of chemotherapy when the relapse happened anyway.
It just causes unnecessary suffering, and it feels like nothing is actually working. 😢

gentletiger46 said:feralridge3 - That’s incredible news regarding the chemo, hang in there! As for hair loss following radiation, I think I read somewhere that there’s a chance it might not grow back at all in the radiated areas. BUT—and this is a huge but—please take that with a massive grain of salt. I've been reading so much lately and under such high levels of stress that it's entirely possible I misread or simply misremembered something.

I actually asked my oncologist immediately after the radiation session how long it would take for my hair to regrow, and he told me there was a possibility it might not come back at all. 😢
Now that you've mentioned it, it all comes flooding back. I suppose I just pushed it out of my mind when I noticed the hair starting to poke through... but it just won't seem to get any thicker.

Actually, what's really weighing on my mind right now is whether the therapy after the second surgery will be the same. 🤷 Because if they put me through radiation again, I'm genuinely worried I'll be left without any hair at all. 😢