Posts by Sarah Ramirez59

ruggedfox11, I am so incredibly sorry. I really wanted this to work for you, and I truly believed it would... I'm just so sorry.

Please, do yourself a favor and watch this documentary. It’s definitely going to make you cry, but honestly, I would have given anything to have seen it while my husband was still alive. It would have cleared up so many fears, feelings, and uncertainties. I would’ve felt more confident instead of just relying on my gut and feeling totally alone in everything. Some things would have gone differently, too.
It shows you how things *should* work versus how they unfortunately actually work here in the States.

Honestly, so much! For you, and for everyone else out there fighting this alongside their families.
Just take it one day at a time. That’s really the best advice I follow myself. You have to let yourself appreciate the tiny wins, like seeing that spark of joy in his eyes when he sees you 🙂
Or even just the fact that he can squeeze out a few words. It might fluctuate, kind of like what my husband goes through. There have been times where he can't get anything out—just random syllables that don't mean a thing—and then suddenly, things improve. Then they dip again. It’s a roller coaster.

See, my biggest fear is actually forgetting who he was before all of this started. When you were talking about your Dad, it felt like you were describing my husband.

Grace Ross20 said:No matter how much I argue, the doctor insists he doesn't need another CT or stereotactic surgery. She says they shortened his radiation to three weeks because of his current condition, and that he’ll likely never regain his speech.
She also gave me this "gentle" warning to start looking into assisted living facilities for when he's discharged, because apparently, nobody is going to be able to handle him at home since he weighs 220 pounds. He isn't fat; he's just a tall, strong guy.
It feels like she’s basically written him off, and now I'm just lost.
The truth is, my mom and I can't manage him on our own. How are we supposed to help him get up or even bathe him?
I feel like a total piece of trash for having to push Dad into a care facility.

I am so sorry.
Honestly, I've been waiting all day for you to check in so I could see how things went.
My husband handled his radiation and chemo pretty well, but I spent every single day watching this girl—who was practically semi-conscious, kind of like your dad—getting driven to her radiation sessions. First in a wheelchair, then on a gurney, just watching her get worse every day. That's why I reached out to you.
Her mom was given the exact same advice. And honestly, that was it.
Is Dad feeling any better after the therapy he received?

Grace Ross20 said:Angela, please, I need help.
So, my Dad hasn't even started therapy yet because the EQUIPMENT BROKE DOWN. I have nobody to talk to because there isn't a single doctor on the floor right now, and it's the weekend too.
Basically, he's in a coma today—like, a total coma. He just sleeps; he can't talk or even get out of bed. He ate when I fed him and drank some water and juice, then went straight back to sleep, and they haven't given him anything to help him rest.
I asked the nurse if they gave him any Decadron, but they said they only give Medrol unless the doctor says otherwise. They also told me he should be better once therapy starts, but I asked how they plan to take him for radiation in this state, and the answer was just that he's fine as long as he can swallow the Temodar. Is that really okay with them?! He’s in this condition, and they think he's ready for radiation?!
I don't know what to do anymore. Waiting until Monday for the doctor is going to drive me insane.
Please, tell me, will he stay like this? He's in diapers and can't speak, but he understands me, and he's eating and drinking. He still has strength in his left arm, but nothing in his right.
Please, just give me something to hold onto so I can make it through the weekend. 😢

I'll try to weigh in... and Angela, feel free to correct me if I'm wrong when you get online.
He's sleeping because the edema—the swelling around the tumor—has gone crazy. If you haven't already, ask for the doctor on call and find out if he's getting Mannitol (to bring that swelling down) and why they aren't giving him Decadron intravenously.
They can transport him to radiation in his bed, but it won't necessarily make things better. In fact, it could make it worse, because radiation can actually cause the edema to flare up even more.

Take a look at www.onkolab.org and ask Dr. Mishir about it. Unfortunately, patients have to cover those costs out of their own pockets. I know the price tag usually runs anywhere from $3,500 to $6,000.

They’re asking you for that European health insurance card you pick up at Medicare. I’m over at the Jukic office right now. They actually have a kiosk there, so you can get it done super fast. It’s surprisingly easy here. You just need your health insurance card.
As for the payment part, I honestly have no clue. Maybe someone who’s been through this will chime in, but I suspect you might unfortunately have to handle everything on your own. When I went in for my consultations and paperwork review, they didn't charge me a dime.

It’s still affecting the left frontal lobe, though since the recurrence, it’s started spreading to the right side too. We didn't get around to proton therapy—by the time I heard about it, they had already finished the planning here, and we decided it would just be too much wasted time to start over. With this relapse, the tumor grew so much in just four weeks that radiation wasn't even an option anymore, both because of its size and the doses already received during the first round. But honestly, I've had such a positive experience with the team here. They reached out immediately and were so incredibly willing to help.
And honestly, regarding what Angela Wright is saying about how to handle the staff—that’s the absolute best approach. It's the most effective way to deal with them. That's exactly what I learned from her. 🙂 You wouldn't believe how many times I've sat there listening to a sister try to explain things to a doctor... she’ll have read some book and then insist she knows better, all while they give her that condescending little look. But honestly? In the end, it worked out exactly how I insisted because I just knew I was right. Seriously, go get the book...

And there you go again, Angela Wright... over and over. Thanks, really.

I’m not entirely sure. I think it might be possible if radiation and chemo can shrink the tumor—which isn't very likely, but hey, nothing is impossible. Maybe > knows more about that than I do. Anyway, all the statistics seem to favor people who undergo surgery, and that's what I've been banking on. You should immediately ask the folks at the Mayo Clinic for a copy of the MRI, or wherever you had it done. Try to get in touch with Chudy or one of the neurosurgeons over at the Vineyard hospital. That’s just my experience.
My husband is still doing okay—or, let's say, relatively well. He’s mobile, though talking is getting harder; he struggles to find the right words, much like your Dad does, and his memory is a bit shaky... but he’s here, with us.

From July 2014 to October 2014, they were monitoring him thinking it was just a hematoma. That was at the Mayo Clinic. Then in October, after he took a turn for the worse due to increased edema and the tumor growing, they performed stereotaxy. It was Glioblastoma, deemed inoperable. They usually do stereotaxy when they think a tumor can't be operated on. But he ended up having surgery at Dubrava Hospital anyway, and they managed to remove the whole thing. Then came the radiation and a year of Temodar chemo. Sadly, in February of this year, there was a recurrence, so he went back under the knife and they removed the entire tumor again. We moved to a second line of chemo, CCNU + VCR. Unfortunately, the MRI showed the tumor had started growing again. So, we switched his chemo to Carboplatin.
After seeing that none of that was helping, I worked with our oncologist to get in touch with a doctor in the USA who is running a research study using the CUSP9 protocol. You should try looking it up online. It’s a combination of nine different drugs with low doses of Temodar every day. I have to tell you, my GP actually said it wasn't treatment, it was poisoning. But the first MRI after six weeks showed the tumor growth had stopped and it was actually breaking down (I don't know the technical term for it). The Radiologist said it was a significantly better result than before, though he warned me that experience with this diagnosis teaches you to always stay cautious. We are now in week 13.
As for the doctors and nurses... I've had all kinds of experiences over these last two and a half years. Some really great, some really awful. Honestly, most of the time you just have to be that person who constantly nudges them to get things done. But don't give up!

This is only my third post here. Up until now, I’ve just been lurking and reading—I simply didn't have the strength to write anything...

Grace Ross20 said:Henry did the assessment at the Mayo Clinic, and his doctor, Mishir Krpan, said she signed off on everything and the medication is ready, but things got stuck over in radiology.
They keep brushing me off, telling me there are over 90 people ahead of us and that kids are waiting too. Honestly, that sounds terrifying. I respect everyone else's struggle, but I really doubt there are currently that many urgent cases like my Dad's. Most of those people have already had surgery and are just waiting for radiation, but he hasn't even started treatment yet.

Thanks, I'm going to look into that clinic in Germany.

My husband went through surgery and then waited over seven weeks (even though they told me it’s proven to be best to start radiation by week five after surgery). In your Dad's case, you need to move now! I was practically living at the Mayo Clinic almost every single day.
I also suggest taking those MRI scans to another neurosurgeon for a second opinion. For instance, maybe try Chudy at Dubrava Hospital. He operated on my husband, and he did an amazing job—zero complications. At the Mayo Clinic, they actually told me the tumor was inoperable (Prof. Paladino and Henry, who handled his stereotactic surgery). They literally told us, "We're sorry, please find an oncologist as soon as possible."

The proton therapy center you're looking for is: Rinecker proton therapy center Munich,
www.rptc.de
tel. +49(0)89660680 or +498972467241 Dr. Saric, he speaks American English fluently. I can't find an email address specifically, but it's on their site. As far as I remember, there's a form on the website you fill out and email them, then send copies of the MRI and translated medical history via mail. There’s also a center in Milan, but I don't have any contacts there.
Sending you so much strength.

And definitely keep reading this thread and the Glioblastoma thread. I learned almost everything I know here, and it helped me immensely. So, Angela Wright, thank you from the bottom of my heart... and thanks to everyone else
who stayed strong enough to help.
Dr. Mishir is wonderful. At least, that was my experience.