Posts by Angela Wright

stormyfalcon68 said:Thanks for the quick reply, Ivanic.
We're talking about the hospital in Miami here.
He hasn't had a single radiation session yet—they haven't even brought it up as an option until now.
I'll see what the doctor has to say today, and then I'll decide how to move forward.

Get in there and demand straight answers. Don't let them push you around; be assertive!

stormyfalcon68 said:Unfortunately, I’m joining your ranks now.
I’ve been reading through these threads for a year, and honestly, I just want to thank everyone here for everything you share.
You guys have given me strength and hope, and more importantly, you've taught me about rights that nobody bothers to mention when you're drowning in this disease.

Two years ago, my Dad was diagnosed with Stage I lung adenocarcinoma.
I don't even need to tell any of you about that initial wave of shock and pure terror.
He actually handled the first line of chemo incredibly well; after just two cycles, he went into remission. He felt great—no major panic, just full of hope and the will to keep fighting.
But things have been sliding downhill since this summer. He’s losing weight, his appetite is gone, and the pain is getting more intense and frequent. Even the Tramal isn't doing much anymore, if it works at all.
The latest CT shows progression in the primary tumor and a metastasis on the 9th rib, even after two cycles of Pemetrexed.
Now the shortness of breath is starting—that feeling where you just can't get a full breath. We end up making constant trips to the ER for oxygen, Medrole, and IV fluids just to get some relief.
His oxygen saturation levels are actually fine, so they say he doesn't technically "need" the oxygen; put simply, the issue is his airways being blocked.
His CRP spikes quite a bit; antibiotics bring it back down to a normal range, and then we're right back where we started. Aside from the illness, his blood work is actually pretty decent for a 70-year-old.
Both physically and mentally, he’s fading. The constant pain is exhausting, and on the bad days, the pain triggers these suffocating episodes.
During one hospital visit, the doctor on duty basically refused to give him the level of care he expects given his diagnosis, claiming there was nothing more they could do, while he sat there gasping for air like a fish out of water.
Then, she leaned in and whispered, "Just wait until Monday for the next chemo cycle, if that even makes sense anymore," which just crushed his spirit even further. Now he's retreating into himself.
We’re currently preparing for a follow-up appointment, where the doctors will likely decide if he’s even strong enough to continue chemo or if it's too much. I’m lost. I don't know what to do or how to act to make this easier for him.

Exactly.
I would ask why they haven't done palliative radiation on his ribs. That would stop the pain immediately and shrink the tumors.
Also, if that hasn't happened, why hasn't a thoracic surgeon been consulted about a palliative procedure to clear those airways?
Furthermore, why hasn't an anesthesiologist been brought in to craft a specific cocktail and titrate his painkiller dosages?
Which hospital is treating him?

boldridge3 said:At the start of the illness, before we even knew what we were dealing with—we just suspected cancer—Mom was getting Dex. She was also on Medrole. I remember that clearly because I saw it on the nursing transfer list, though I have no clue why she was prescribed those specifically. Anyway, three days ago, we ended up at the emergency room at Jordanovac, and honestly, it was a mess. We thought they might admit her, and my primary doctor suggested trying the ER just in case they’d keep her, even though we knew she didn't strictly meet the criteria for admission. It was pure luck we went, because the scans showed pleural effusion and lung cancer progression, which happened in just the three weeks since her last checkup. 🙂 The results are an absolute disaster. The ER doctor on duty wouldn't admit her... actually, he didn't even tell me about the effusion; he just said everything was fine, but I found out by reading the discharge papers myself. For meds, he insisted on Tramal and patches, even though Mom told him she wasn't in any pain—she hasn't taken a single painkiller since treatment started because nothing has hurt. But he wouldn't budge; he insisted on the patch and the Tramal. So, the next day, I go to see my primary doctor, who was actually panicking more than I was. She’s a really compassionate doctor, and after hearing about the patches and the Tramal on top of everything else, she told me she’d come by for a home visit the next day to apply the patches herself. Then she drops this bombshell: she thinks Mom probably won't make it to radiation, so it might be best to look into placing her in a high-end facility, something like a private specialty hospital. I just sat there staring at her, completely lost. 🤔 .... Then today, the doctor comes for the home visit, examines Mom, and everything seems okay. We sit there for a few minutes, just staring at each other blankly because the doctor was expecting Mom to be in a coma. Anyway, she didn't apply the patches and said Mom shouldn't take Tramal if she isn't in pain. As she was leaving, she whispered to me that Mom looks fantastic. She gave her a referral back to Jordanovac to deal with that fluid—if it even is fluid—because Mom isn't having any issues related to it; she’s sleeping like a log, 😁 and isn't getting tired at all (for now). I keep wondering if that isn't just a "scar" on the lungs from before the effusion, but compared to the cancer progression, it could be fluid. I just don't get why the ER doctor didn't say anything or why he was so adamant about the Tramal and patches. And what’s even worse, he gave her Tramal for pain, but regarding the Decortin, he claimed the dose was too low. He said she should have had at least a double dose of 40 mg, yet that's exactly what her pulmonologist prescribed. Now I'm seriously considering switching her to Dex. Is that possible since she's been on Decortin for three days already? Or maybe swap Dex for Medrole if that's better? My doctor will likely just prescribe whatever, but I don't know. Am I allowed to switch them?

You can't just go rogue and change things without the primary doctor's okay.
It's unbelievable how everyone just tinkers with medications on their own without communicating with each other or even the patients. They're terrible. Total autists.

Grace Ross20 said:Does anyone have a good physical therapist to recommend, and what has your experience been like?
So, my Dad just wrapped up 15 days of chemo and radiation, and now he’s stuck waiting a month before we can jump back into treatment.
He’s starting to regain some speech, and his right hand is coming back too. But since he’s been lying there immobile for a month, his muscles have completely wasted away.
I honestly think he could be walking again if an expert really rolled up their sleeves and got to work. Do you guys think that’s actually doable?

A relative of mine is a physiatrist specialist, and she actually came by the house to examine my mom and draft a plan for home-based physical therapy. Once we got the green light from Medicare, they approved a home health physical therapist for us. I'm not sure if other physiatrists typically do house calls, but we got lucky—my mom had sessions three times a week all the way through. We had this incredible therapist who worked so hard with her; she formed a real emotional bond, too. She was such a massive support system. We actually ended up becoming friends.

boldridge3 said:Here I go again. My mom is scheduled for radiation on November 21st. She isn't doing great, honestly. Her arms and legs are starting to feel weak... but so far, thank God, there hasn't been any actual pain or neurological issues. For meds, they put her on Decortin 40 mg in the morning along with gastroprotection and Apazolom20 mg. She’ll take that until her radiation starts and through the treatment, then taper the Decortin dose down by 5mg at a time until she stops. From what I can tell, they listed it as palliative radiation, so I'm guessing I shouldn't hold my breath for a miracle?

Losing strength in your limbs is definitely a neurological symptom. 😔
Regarding the Decortin, I'm worried that might not be the most effective steroid therapy available. When my mom was going through this, we went through absolute hell with dexamethasone because the doses she needed were way higher than what you find in standard packaging. If I remember right, a single pack would barely last her two and a half days. I actually asked her oncologist if she could switch to Medrole since the milligram counts are higher, but she told me that for glioblastoma, dexamethasone is really the only way to go—that nothing else works as well. In the end, I was operating in a bit of a gray area, sourcing dexamethasone vials myself just so I could give her the injections.
Just ask them.

Ashley Reed98 said:My boyfriend went through exactly what you all are facing right now. He passed away three weeks ago—brain tumor. I knew this thread existed, but I honestly couldn't bring myself to read it until now. I kept holding onto this tiny sliver of hope for his recovery; even with such a brutal diagnosis, seeing how bravely he fought everything, always staying optimistic... it gave me something to cling to.

Now that he’s gone... I’m just taking it one day at a time, but the void he left is massive. I miss him so much. Every single day, that ache just gets deeper.

Thinking of all of you. 🙂

I am so sorry, honey. Let him rest in peace, and try to move forward with your head held high, carrying his memory in your heart. I'm certain that's exactly what he would want for you.

boldridge3 said:The follow-up for her lungs isn't scheduled until November 16th, but I’m calling her doctor tomorrow to see if they can squeeze her in sooner. She feels great right now, and waiting until mid-November just feels like too much wasted time.

You absolutely should! She needs to get started on that cranial radiation ASAP.

boldridge3 said:Mom's head CT results came back today. To make a long story short, they found four distinct lesions. Her primary care physician is telling us they're metastases...

They’ll likely jump straight into cranial radiation. When you're dealing with small cell lung cancer, those brain metastases are usually incredibly sensitive to radiation therapy.
I really, truly wanted to believe it wasn't a metastasis, but this damn small cell cancer just loves to migrate to the brain. 😔
Make sure you get an abdominal ultrasound done too; more often than not, it hits the liver before it ever reaches the brain.

Brenda Mendoza57 said:Is there an alternative treatment protocol used here in the States if Temodar stops working?
I noticed Avastin is available in other countries.

A mix of Vincristine and CCNU.
Avastin has shown some effectiveness, but I believe it’s typically reserved for third-line treatment.
The harsh reality is that in about 90% of cases, once a patient relapses on Temodar, they just aren't strong enough to handle a second line of treatment.
When it comes to GBM, the gold standard is surgery—getting in there and re-operating every single time there's a sign of recurrence. It's the only way people actually manage to beat the median survival rates.

Brenda Mendoza57 said:Hey everyone

I’ve been reading through most of this thread, but I have a question.
My mom has glioblastoma and she’s about to wrap up three weeks of radiation and chemo. They actually cut her treatment short because she was admitted to the hospital in pretty rough shape.

The doctor isn't available right now, so I’m stuck wondering what comes next. How does the therapy continue from here, and how will she receive it since she just spent time in the hospital?

Thanks so much

They won't start anything else until her general condition improves. They’ll run a follow-up MRI once this round is done to see if there’s any improvement or at least some stability in the tumor. Based on those results, they'll decide on the next steps. If everything goes according to plan, she'll move on to five cycles of Temodar, which she can take at home. She'll just need to head into the outpatient clinic before each cycle for blood work and a quick check-up.

Grace Ross20 said:Hey everyone, just wanted to check in. Dad is still holding steady; he’s picking up new words every day now and is actually lifting his right arm and leg.
He’s handling the treatment well, though I’m trying not to get ahead of myself with too much excitement—radiation side effects usually don't show their face until later on.

Contina, how is your husband doing? Any news?
I’m heading to a lecture on clinical trials next week, so they’ll likely bring up DCVAX; I assume you've already looked into it. Could this be our big break? The trials are pretty advanced, but I have no idea how long it takes to actually become part of a standard protocol.

Back when I was posting in the Glioblastoma thread, I mentioned DCVAX while it was still in the in vivo stage. So, they really have moved into clinical studies... that's great news.
To try and get into a test group, you have to submit an application directly to the clinic running the study and see what their specific candidacy requirements are.
From what I recall, it’s an immunotherapy made from the tumor tissue itself. Now, I can't remember if a patient has to have surgery first or if they can use something from a biopsy... I'm not entirely sure.
I did a quick Google search, and it looks like the only studies currently in the US and Europe are in England and Germany.
The one in Germany isn't recruiting anymore, and looking at their criteria, they require the patient to have had surgery since they need the actual tissue to create the preparation.
https://clinicaltrials.gov/ct2/show/...EU%3ADE&rank=1

Regarding the protocols, the drug has to prove it's more effective than the current standard of care, which requires more randomized studies involving larger groups of people. If everything lines up, the pharma company applies for FDA registration, and then the new protocols are officially introduced.

By the way, there are currently 40 GBM studies actively recruiting.
http://www.clinicaltrials.gov/ct2/re...toma&recr=Open
This website always provides the most reliable data on available studies for all possible diagnoses, along with precise details ranging from how to apply to the specific requirements, obligations, and benefits.

You've already got a thread about this, by the way.
Just layer on some Rivanol and apply Fact cream.

frozenskipper said:Do guys with high testosterone—you know, the strong, muscular types—actually have a better shot at fathering a boy compared to guys who are leaner or less physically imposing?

Not as far as I can tell.
It’s really more about the woman’s cycle—specifically whether she hits ovulation right before intercourse or if it happens a couple of days later.
Think of it like this: Y sperm (male) are the sprinters, while X sperm (female) are the marathon runners. The Y sperm are faster and might reach the egg first, but the X sperm are much hardier and can hang around in the female reproductive tract for up to five days, waiting to fertilize an egg that ovulates a bit later.
Of course, there are no guarantees in biology.

Grace Ross20 said:Look, I have to admit, Dad is doing better. I’m going to give it some time to see how his recovery actually unfolds. He’s started moving his hands and feet again, he’s eating, and he manages to squeeze out a new word almost every day. Plus, he’s handling the chemo and radiation pretty well so far.

How long does it usually take for the hair to fall out, and does it happen to everyone?
Right now, he's prescribed three weeks of radiation because of how critical his condition was when he was admitted to the hospital. Is there any chance they might extend that to six weeks if everything goes smoothly?

I’m not sure which specific protocol they are following, but when my mom was going through treatment, the standard was 30 days of radiation paired with Temodar, which you take an hour before the radiation sessions. You still take it on the off-days when there isn't any radiation scheduled. After that, they do a follow-up MRI to check for a response to the therapy, and then she moved on to five more cycles of Temodar.
Treatment gets paused or pushed back if the patient's general condition tanks or if their blood counts look bad.
As for the hair, my mom started losing hers right after her very first dose of Temodar. Once those first few strands started coming out, I just shaved her head and we went with a wig.
It’s possible Dad might get some radiation burns on his scalp. You shouldn't put anything on them except Gentian Violet. Just wash the area with plain, lukewarm water.

Terry Lopez18, try coming back and asking her for straight answers. You know how this works—you've seen it through your conversations with other doctors and by watching what other GBM patients go through. Be blunt with her: tell her you fully grasp how heavy this diagnosis is, but you won't sit by while she refuses to engage with a patient who still has a legitimate right to fight for more quality time.
Don't be afraid to use my own story as an example. I spent my days sprinting through the neurosurgery department at the Mayo Clinic, begging Paladin to perform a puncture while my mother lay there completely incapacitated after a repeated CT. He did it, and that one decision gave my mom the chance to undergo oncology treatment. It bought her another year and a half of life—time where she was able to experience some truly important milestones, allowing her to leave this world on much happier terms. Ask her nicely not to strip that opportunity away. As for palliative care, tell her not to sweat that part; she should be focusing on the curative side, which hasn't been exhausted yet. At the end of the day, anti-cancer treatment is primarily about extending quality of life, and then we hope for remission. Remind her that you are in a much tougher spot than she is. You can't exactly run around seeking second opinions for Dad when he's in this state, especially since they refuse to order a new MRI or CT. She’s already voiced her opinion, but she isn't basing it on actual findings—it feels more like medical guesswork. That’s just not acceptable. Please ask her to respect your position and Dad's rights as a patient to get a second opinion from a neurologist and a neurosurgeon before settling on whatever the oncologist suggests.

Grace Ross20 said:Starting today, they’ve put him on Decadron and Mannitol, but he’s still non-verbal and can’t move his right arm or leg because the tumor is on the left side.
Look, I am absolutely not letting them start radiation. I’m calling his oncologist personally on Monday and then heading straight to her office. I’m going to push for stereotactic radiosurgery. I know Mishir Krpan is an incredibly talented oncologist, which is why some of what she's saying makes zero sense to me—how can she possibly claim he’s ready for radiation right now?!
I told the nurse he urgently needs stereotaxy, and she just snaps back at me, implying the doctor knows best. So much for our healthcare system. They are incredibly rude and act like I don't have the right to say a single word, as if the state he's in isn't already bad enough due to their negligence. And don't even get me started on the "lack of beds" excuse; they kept telling me the ward was full, yet two beds in my Dad's room have been sitting empty for days. Not to mention other rooms where beds are just sitting there vacant. So much for the bed shortage.
I’ll say this: I know Dr. Mishir is brilliant and responsible, and I’m hoping she’ll be realistic when I finally get a hold of her.

You should have pointed out that she clearly doesn't know, because if she did, they would have repeated the CT scan immediately upon admission.
You have to snap back at every bit of nonsense they throw at you. You don't have any other choice.
You have to stay one step ahead of them, ALWAYS.
Demand a new CT. If this swelling is caused by fluid buildup, he needs either a one-time drainage or a shunt if the Mannitol and Decadron don't stabilize him. Radiation is going to cause constant edema, and if the Decadron can't keep it under control, all their efforts will be for nothing. If things don't improve with the current meds by Monday, you have a rock-solid argument for a CT. Ask them why it hasn't been done, whether they are considering it, and when the neurosurgeon will weigh in on the need for a puncture or a shunt... basically, play dumb. Act surprised and indignant, as if they hadn't already mentioned those options to you. 😉
Demand decisive answers to every single question you ask. You have that right, so act like it. Be assertive with the doctors, and if the nurses are being disrespectful, be just as blunt with them. They are here to care for patients, so they need to act professionally, and that includes basic decency.
By the way, being annoying and difficult works best. Be a nuisance and, when necessary, be difficult.

I honestly think we’re looking at nerve damage caused by the chemo. Brain metastases don't typically show up like this; they would have paralyzed an entire side of her body rather than just causing localized issues.
It’s going to be okay.

Grace Ross20 said:Angela Wright, please, I need your help.
So, my Dad hasn't even started his therapy yet because the equipment broke down. I'm stuck here with nobody to talk to since there isn't a single doctor on the floor right now, and of course, it’s the weekend.
So, he’s basically in a coma today—just totally out of it. He’s sleeping constantly, unable to talk or even sit up in bed. He managed to eat a bit when I fed him and had some water and juice, then just drifted right back into sleep. They haven't given him anything specifically to knock him out, either.
I asked my sister if they were giving him any Decadron, but she told me they’re sticking strictly to Medrol until the doctor gives the green light to change things up. She also claims he should start feeling better once the actual therapy kicks in. I had to stop her right there—how on earth are they planning to get him to radiation sessions when he’s in this condition? Their answer? As long as he can still swallow his Temodar, he's fine. Is that their logic?! They honestly think he’s in any kind of shape to undergo radiation right now?!
I honestly don't know what else to do at this point. I'm sitting here wondering who is actually going to be around to wait for Monday and see the doctor, because if I have to deal with this uncertainty any longer, I am going to lose my mind.
Please tell me, is this going to be his permanent reality? He’s in diapers now and can't speak, though he can still understand me and is able to eat and drink. He’s got some strength left in his left hand, but the right one is completely useless.
Give me something to hold onto—just enough to keep me afloat until Monday so I can actually make it through the weekend. 😢

He just isn't in any condition to handle radiation right now.
I’d start a full-blown revolution and demand an immediate on-call physician, unless they want to deal with formal legal complaints.
Look, the edema and everything you’ve described point directly to neurological deficits caused by rising intracranial pressure. You need to ask them exactly who is going to be held accountable if Dad slips into a coma and dies because they failed to provide the basic first aid his condition requires. Be assertive. Walk in there acting like you know exactly what's happening. Just because his specific doctors aren't on shift doesn't mean the rest of the staff is suddenly absolved of responsibility for his care. The standard protocol here should be IV Mannitol followed by Decadron to maintain any improvement, especially since Mannitol can cause a rebound effect. Forget about Medrol—that’s out of the question. He needs pure Decadron, specifically doses of 18mg or 24mg until he stabilizes. This is standard medical practice; they know this, and frankly, it’s a disgrace that you, as a layperson, have to remind them. He needs an urgent CT scan immediately to determine the extent of the tumor versus the hydrocephalus caused by CSF buildup. Once you have those results, use them to demand a neurosurgeon to discuss potentially installing a shunt. If they go straight to radiation, that edema is only going to spiral out of control.
HE CAN'T EVEN START CANCER TREATMENT!
If they aren't capable of providing the necessary therapy in a timely manner, they need to just own up to it right now and admit they can't handle him—then move my father to another facility immediately. I’m going to send a formal complaint straight to the department head, the clinic director, and the Department of Health to let them know exactly how they are (not) treating a patient suffering from brain edema just because it happens to be the weekend.

Look, there’s no better way to put it, so forgive me in advance—you need to be absolutely manic and wired, like a Pitbull on speed. LITERALLY!

Emily Grant said:Awesome... thanks so much for the help and advice... I’m going to get out of there ASAP because everyone at Dubrava Hospital acts like they know everything, and during checkups, they just copy and paste findings from the previous report... Menetrier is incurable for now, and as far as I know, there isn't even a specific code for it in the Medicare system yet. In all of America, only about 36 people are suffering from Menetrier disease...
thanks again!

Do yourself a favor and Google specialized referral centers and clinical trials for this condition. If a study exists, getting into one should be relatively straightforward because the patient pool is so small—and for a study to actually be credible, they need a significant number of patients for testing. These trials are free for you; usually, you only cover your own lodging, but even that can often be worked out with the pharma company if they really want you on board. Plus, if the drug turns out to be working for you, you'll receive it from them for free for life, regardless of how the actual study ends up.
Here is the link to start searching. https://clinicaltrials.gov
If anything is available, it will show up in the published listings. You can filter by whether they are still recruiting, and there’s even a world map with highlighted countries where studies are active. Clicking on those will give you the contact info and the requirements.
If you haven't already, reach out to the American Rare Disease Association to see if they can connect you with others facing the same diagnosis.

Emily Grant said:Hi everyone!!
My diagnosis is 1. Stage 1 gastric cancer (currently resolved)
2. Observation for malignancy (code Z 3.16)
3. Menetrier disease (a consequence of the cancer, and the disease itself acts as an active precursor for more tumors)

Since the doctors expect the cancer to return, I'm under constant monitoring. I am in unbearable pain, so for my therapy, I'm using Fentanyl patches and Luminal, but the medication wears off incredibly fast—the patch only lasts about a day and a half to two days... I'm bleeding from both ends (stool and vomiting), while my doctor insists this is "normal" because my stomach is just "clearing itself out." My cardia, esophagus, and stomach aren't functioning properly, and my duodenum is basically non-existent. The doctors aren't prescribing any specific treatment for my diagnoses; the only thing they've done is have a specialist at the Mayo Clinic pain clinic prescribe Fentanyl patches.
Like I said, I'm living in agony because the therapy DOES NOT HELP me.
On my last MRI, they also found a 6x3 cm cyst in my brain behind the left temple, plus two cysts on my liver... everything is going great, if you consider this "great," not to mention the depression...

Does anyone have any advice?

Pack your bags and head straight to a major medical center for a second opinion.
Around here, expertise is just limited—whether it's by the lack of qualified staff, the available diagnostic tools, or simply a lack of willpower to take a multidisciplinary approach and offer the best possible treatment for your condition.
And it's total nonsense that you're supposed to just endure the pain, because you shouldn't have to. An anesthesiologist needs to get to work on a cocktail of medications and titration to find the right dose that covers your entire spectrum of pain.
I recommend seeing Dr. Potter at the Draskovic clinic in the pain management department.