Support for families dealing with cancer and other serious illnesses (Part II)

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...

Dear Contina, thank you so much for finding the strength to write this out. I can only say that I intend to pass your advice along to help others facing similarly hopeless situations—if there is any silver lining to be found in such a terrible experience, it’s learning how to support one another.

I’ve actually joined the Glia association; they provide a wealth of useful information and have a wonderful psychologist who volunteers her time to truly listen to you. The best part is how they connect people facing similar struggles, so I’m hoping to attend their weekly meetings more often to hear about others' experiences.
I fear that, at this moment, no one can truly understand us unless they are walking this exact same path—and even then, the entire burden falls squarely on our shoulders as family members.

Contina, where was your husband's tumor located? My Dad's is in the left frontal lobe, and it has already spread to the basal ganglia.
On Tuesday, I’m taking all the documentation to see Dr. Chudy. He has been a true revelation for us, and I am sincerely hoping he will listen to my concerns.

Look, regarding radiation—once you get it done, that’s pretty much it. With Glioblastoma, the protocol is standard and basically identical everywhere, unless you're looking at proton therapy or maybe Gamma Knife/CyberKnife, provided the tumor size and location actually allow for it.
The entire head gets irradiated to hit that maximum dose.
When it comes to Glioblastoma, the best prognosis goes to those who undergo surgery. People who manage to survive long-term do so by living from one checkup to the next, getting an MRI every four months. The second there's any sign of recurrence, they go back in for surgery. That’s how they manage to pull through for years.
I would push for Munich and start radiation simultaneously—hopefully fast, God willing. Time is a luxury we don't have.

Terry Lopez18, you need to toughen up. God knows I get how you feel, but you have to steel yourself and deal with this whole load of crap that comes with a diagnosis. Stand your ground every time someone gets rude and shut them down properly. It’s actually quite satisfying when you’re one step ahead of them; like when a colleague tries to patronize you and you just crack back that you're a fashion designer, like me, for example. 😂 I’ve constantly fought back against more medical staff, and quite successfully too. One nurse at the Mayo Clinic once took issue with me because I was the only one in the entire hospital holding the keys to the oncology pharmacy; she ended up leaving for Cathedral Hill early because she had a mass to attend to, while my old man had missed his dose of Temodar for the next morning, so he had to rush out at dawn just to make sure she took her meds on time.
And then there was the one on her ward who gave me a series of Mannitol concentrations that were totally off from what was prescribed, and then proceeded to lecture me like I was an idiot, claiming that 20% Mannitol in a 1L bag was the same as 40% in a 0.5L bag (I'm calculating the concentration in my head right now, I don't remember the exact numbers, but the logic is obvious).
Then there’s the outpatient clinic located in a basement—you're sitting there dealing with a diagnosis like this, and every few minutes they wheel someone covered in a sheet past you on their way to the pathology department from oncology. It’s incredibly tasteless.
Honestly, I could write a book about it.

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.

Alright, I’m heading to see Chudy this Tuesday; this surgery would be an incredible opportunity.
I'm just wondering how the billing process works at that clinic in Germany? I noticed they require some form of insurance, but does my Medicare cover any part of this? What are the approximate costs, and is there any way at all to secure financial assistance from anyone?

I apologize for asking all these questions here. It isn't that I'm being lazy; it's just that I am finding it genuinely difficult to track down any solid information on these matters. If anyone happens to be informed...

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.

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.

Grace Ross20 said:Alright, I'm seeing Chudy this Tuesday, and the surgery could be an amazing opportunity.
I’m just trying to figure out how the billing works at that clinic in Germany. I see they require some kind of insurance—will my American insurance cover any of this? What are the prices looking like, and is there any way to get financial assistance from anyone?

I hate having to ask all these questions here; it's not because I'm lazy, it's just that finding actual information on any of this is incredibly difficult. If anyone already knows the drill...

Medicare will cover the treatment, but only if you can get three of our local doctors to sign off stating that it's absolutely necessary and that we simply can't perform it here in the States. Those opinions then go before a Medicare board for approval or denial. It's a whole process, and honestly, most people end up paying for everything out of pocket first and then waiting to get reimbursed by Medicare later.
In reality, getting that covered is a massive uphill battle. Plan on having to fund this yourself. You might want to look into humanitarian aid or try asking them for a discount. It's a fight.

It looks like I finally managed to talk him into it, so Dad will be starting his treatment very soon.
Now I’m wondering—while he’s undergoing this initial phase, I’m planning to head over to Dr. Chudy to get a second opinion. Does that seem like a reasonable sequence of events to you all? Moving from chemo and radiation toward a potential surgery?
Usually, the standard protocol is surgery first, followed by chemo and then radiation...

Grace Ross20 said:It looks like I finally managed to talk him into starting treatment soon.
Now I'm wondering, while he's undergoing treatment, I’m planning to see Dr. Chudy for a second opinion. Does that sequence make sense—chemo plus radiation followed by a potential surgery?
Usually, it’s always surgery first, then chemo and radiation...

They’ll run radiation combined with Temodar for 30 days, followed by a month-long break. After that, they perform a follow-up MRI. If there's a positive response to the therapy, they move on to five cycles of Temodar, taken five days at a time. Temodar is administered orally.
As for whether they'll consider surgery after that follow-up MRI, that will likely be the deciding moment. In that scenario, once the surgery is done, they would continue with the Temodar therapy.
That is the standard protocol for Glioblastoma.

Greetings. Does anyone happen to have experience regarding stomach cancer treatment at Avian? I’m actually curious about how the process works over there. Is registration handled via their website or through a phone call? Also, do medical records need to be translated into Italian, and roughly how long is the wait for an appointment? I am also wondering if they utilize superior medications compared to what we have here, and approximately what the total cost might look like—specifically for chemo and radiation, since the surgery was already completed here. Thank you all, and please forgive this mountain of questions.

Or perhaps someone could kindly point me in the right direction—where might I go to uncover this information if it isn't available here?

Harold Harris8 said:Or maybe someone can point me in the right direction if I can't find this kind of info here?

I remember a woman on this forum whose mother was given only a few months to live due to ovarian cancer back home. They moved her over here to the States, and the woman ended up living another solid 10 years.
Get in touch with the hospital directly via email. Tell them you’re looking into treatment options there and ask exactly what the requirements are. You'll likely need to have all medical records translated into English, but they’ll probably insist on doing their own evaluations anyway—which might include repeating a pathology biopsy. You should be able to pick up the physical copies of those reports from the pathology department at the main hospital.
Good luck!

It’s been exactly one year since I went under the knife and they got all that nasty stuff out of me. My doctors told me I caught it just in time. Honestly, I hit the jackpot, and I’m just praying everything stays on this track.
Today carries some heavy symbolism for me, so I’m treating it like my second birthday.
I want to send some love to all the warriors out there fighting the good fight, and to their families who are stepping up and giving it their all to take care of them.
May God watch over you and give you the strength you need. Hang in there, okay?

Hey analogcanyon4, what kind of tumor were we talking about exactly?
I'm seriously pulling for you—I really hope you stay healthy and that this whole nightmare stays in the past for good 🙂

Thanks, Jason Taylor. I had cervical adenocarcinoma. They couldn't just clear it out with a cone biopsy because it was too big—around 17 mm—so they ended up doing a radical hysterectomy to get everything out. It worked perfectly, though. Thank God there was no lymphovascular invasion.

Has anyone here dealt with bladder removal? How long does the recovery actually take, and is it necessary following chemo or radiation? What is life really like with a stoma?

Dad finally starts his treatment tomorrow—chemo and radiation.
The reality is that he took a massive turn for the worse literally overnight. He can't even pull on a pair of pants anymore; he’s losing his balance, struggling to speak, and mostly just swearing.
I honestly don't understand how he’s supposed to handle radiation in this state. Is there any actual possibility of improvement here? Is there anything I should be holding onto hope for?
It is simply impossible to believe things could spiral this quickly in just a few days. 😢

Grace Ross20 said:Dad finally starts his treatment—chemo and radiation—tomorrow.
The thing is, he took a massive dive overnight. He can't even pull on his pants; he’s basically collapsing, can barely speak, and just spends his time cursing everything in sight.
I honestly don't see how someone in this state can handle radiation. Is there any chance he could turn a corner, or should I stop hoping?
I just can't wrap my head around how things went south this fast in only a few days. 😢

Call 911 right now and get him to an emergency neurology ward to stabilize him. The edema caused by the tumor is spiraling out of control, and his intracranial pressure is spiking hard against his brain. If you don't get aggressive anti-edema therapy started immediately, those episodes are going to get worse until he slips into a coma. There is absolutely no way he's ready for radiation; it'll just fuel the swelling and they won't be able to start the treatment.
He needs to be in the hospital ASAP so they can administer IV Mannitol and high doses of Decadron. They might even need to perform a CSF drainage via puncture (it's called stereotactic surgery) if the meds don't do the trick. My mom went through this exact nightmare, and we literally had to get down on our knees and beg the surgeons to do it. She went in on a gurney in a coma and was walking again 30 minutes later. Only then would she have been stable enough for radiation.

Dear Ivanica, thank you so much, truly.
Please, just tell me one thing: what happens if they tell me this isn't just edema, but that the tumor itself has progressed? I’ve been reading through threads about Glioblastoma and I understand what edema is, but I'm struggling to figure out how to distinguish whether the edema is the primary issue or if it's the tumor itself acting up? If that makes any sense.

P.s. She's currently at the Mayo Clinic in oncology; I'm heading up there after 2:00 PM to have a word with the doctor.