Posts by Carol Newman21

casualrider21 said:My angel is gone😢🙂 😢🙂🙂🙂🙂
The pain and the grief... they're just too much. They've completely broken me.

He was strong and alert until the very last second. The nurses called me from the hospital because he was calling out for me. I ran like a maniac. Even through all that agony and suffering, he was just looking for ways to make things easier for me, never even thinking about himself. He managed to say what he needed to say. And then, he told me he wasn't in pain anymore. My hero.
That night killed me.

I used to hope that, with time, kind words and thoughts would help.
Now, none of it matters.

I am beyond heartbroken.😢🙂

casualrider21, I'm so sorry.

feralridge3 said:I usually have stupid questions...
🙄
Surely not all at once? 🤷

Right now I’m taking native propolis. Those capsules are disgusting. Every time I try to swallow one, my stomach turns. 😲 Next time I'll just get the drops.

And one more thing,
will Temodal make my hair fall out?

Hey,
hope you guys handle the treatment okay.
Temodal doesn't cause hair loss; that usually comes from radiation. But there's a catch—at the hospital, they used a targeted radiation machine, which is way better than the old stuff because it only hits what needs hitting, leaving the rest of the body—or the head—protected.
With that kind of targeted radiation, hair only falls out right where the beam hits, and it grows back pretty fast. My dad's hair was already fully grown back after a month, so you can't even tell.
I'm here if you need any advice.
Hang in there.

Angela Wright said:It doesn't really work like that. Bloodwork happens at the outpatient clinic. They draw blood from a vein before every new cycle, and then after therapy, they do a finger prick to check everything. Our doctor would write the lab orders ahead of time. If anything came back outside the normal range, you’d have to contact the on-call doctor at the clinic immediately. We never ran into an issue like that.

As for the dosage, you get a vial for each cycle to take at home. You take it in the morning on an empty stomach and just follow whatever instructions the doctor gives you regarding blood tests or other stuff.

The best thing you can do is write down all your questions on paper so you can go through them with the doctor without getting confused.

I know the whole procedure inside and out—unfortunately, far too well. You can find a smoother path if you have the right people in your corner.
Believe me, I've been through a lot of this, sadly.
You misunderstood me. I didn't say anyone takes chemo by themselves; obviously, you do it under an oncologist's supervision. I was just pointing out that there might be a way to make the checkups easier by using a local clinic or lab. She isn't living in the city, and commuting every day is going to be brutal. Even though Temodal is relatively easy to handle, the weather could really make things worse for her.
I'm just trying to help. That's how we handled our tests.
🙂

feralridge3 said:I’m not trying to make things harder than they need to be, I just don't know how this works. 🤷
It’s hard for me to imagine they’ll let me manage my own blood work and dosages for seven months straight. 🤷

Honestly, I’ll just see what he tells me tomorrow, based on whatever smart stuff he picked up from his colleagues at the symposium.

I didn't think you meant you were administering chemo by yourself. It's under his supervision—he writes down everything you need to do regarding blood tests and such. You can just go to a local lab, and then fax the results directly to him. I sent you a private message. Let me know what happens so we can figure out the next step.

feralridge3 said:I made a note about something for nausea.
My first round of chemo was clearly light. I didn't have many issues—just some headaches for a few days after the dose. I could still get out into nature, go for walks, just relax. It probably won't be that easy this time. 😢

If I'm taking it five days a week, it would work for me to head to the hospital on Mondays and Fridays. I can take the doses for the other days at home. I'll try to work it out. Driving to Chicago every single day in an ambulance during the summer heat isn't exactly something I'm looking forward to. 🙄

I asked around at my local pharmacy here in town about Temodal, and the woman told me they'd need to order it. Someone mentioned a pharmacy near Times Square; apparently, they stock those expensive meds.

You mentioned having four boxes—the 20mg and 100mg ones. Does that mean two boxes of one and two of the other?
Thanks again.

Like I said, don't thank me. Just pray to God for help.
I don't get why you're pushing to be in the hospital if you already have the Temodal.
The day before, just get your CBC and everything else checked. If the labs look good, you can start therapy. And once you finish, check the blood again...
That’s the advice your oncologist should be giving you.
Regarding buying the Temodal, I already told you: you're just creating unnecessary stress and misery for yourself. You know when your next cycle starts—just go to the pharmacy two or three days early and order it. It can sit there. There's no point in driving all the way into the city for nothing....
You're just complicating things and making life harder than it needs to be.
Forgive me if I'm being blunt, but I'm just trying to make things easier for you.

When my father was on Temodal, he felt perfectly fine. A light walk in the morning while it's still cool, then something relaxing in the evening once the sun goes down. No forcing anything.

He was on the strongest dose and handled it well, thank God. Just watch out for the sun and your blood pressure.
Like I said, I'm here if you need anything.

feralridge3 said:I have questions, I just keep forgetting what I actually wanted to ask. 🙄

If they aren't administering it to me, does that mean I can take the capsules at home following their instructions?
Last year was a total grind, commuting to Chicago every single day for radiation right in the middle of summer.

Where did you get the Temodal?

I'm guessing you bought enough doses for all 6 cycles upfront (since you have some left). Does the oncologist insist on having all the doses right away, or can I pick them up cycle by cycle? That would be much easier. 🙄

I'll try to remember other questions; I just need a minute. 😁

Sorry for the late reply, I wasn't at my computer.

-In principle, yes. Whatever they give you is yours, but seriously—take something for nausea beforehand.
-When you're getting Temodal through Medicare, you usually don't take it home because the hospital gives you the daily dose on-site, and that's that. Try talking to your oncologist; since you aren't local to Chicago, maybe they'll let you take it home.
-At the pharmacy, with the oncologist's prescription,
Now you've confused me—if you're buying them, they're yours, so obviously you'd take them at home. Just check with your doctor on the timing and dosage.
-I don't think there's any point in buying all the doses ahead of time. Just order them from the pharmacy a few days before chemo starts and call it a day.
-Let me know if you have more questions. Believe me, I've exhausted every possible source of information, so I'm happy to help however I can.

feralridge3
I have the 20 mg and 100 mg doses. When determining the dosage, they look at body weight, the specific type of tumor, how fast it's spreading...

The good thing is they're capsules, so no needles involved. The therapy runs five days a week. As for how many cycles you'll need, that depends on how well it works and how your body handles it. My advice? Take some Zofran (let me double-check that name and get back to you) about half an hour before the pill to deal with nausea. That’s what we did, and everything went smoothly enough.
My father has already gone through four of the heaviest doses, and the lighter ones before those I'm donating now. Thank God, he handled it all fine, but unfortunately, the tumor has become resistant to Temodal, so we're moving on to a different chemo.

I hope it helps you.

feralridge3
I haven't given mine to anyone, so no worries—it's yours if you need it.
I'm assuming you mean Dr. Shante. If it's him, you're in good hands; he's one of the best. I actually grabbed a few minutes to chat with him just before he left for his trip. If he’s the one, just stick with him and trust that he'll pull out all the stops to help you. I know from experience. Once he's back, have a real talk with him about whether the dosage of my Temodal is right for you, since there are several different strengths. If it's yours, it's yours.
It would honestly make me happy to be able to give this to you and help out.
Definitely reach out, and hang in there. Everything can be worked out.

Hey everyone.
I’ve been right where you are. To cut to the chase: I have four doses of Temodal left over. We ended up paying for them out of pocket because our insurance wouldn't cover it, but now that the disease has progressed, we're moving on to a different chemo regimen. If anyone knows someone who needs Temodal, I’m more than happy to give it to them. It’s recommended for Glioblastoma Stage III.
It expires in October 2009, so I need this gone fast.