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

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.

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.

Angela Wright said:Losing limbs is a neurological failure. 😔
Regarding Decortin 40 mg, I’m terrified that it isn't actually the most appropriate steroid therapy available. When my mother was being treated, we went through absolute hell with dexamethasone because the doses she required far exceeded what you could find in a standard prescription pack. If I recall correctly, a single pack barely lasted her two and a half days. I actually asked her oncologist back then if switching to Medrole would be an option since the milligram count is higher, but she insisted that for glioblastoma, dexamethasone is the one and only way—anything else is just ineffective. In the end, operating in a total gray area, I ended up sourcing dexamethasone vials myself just so I could administer the injections to her.
Just ask them.

At the start of the illness, before we even knew what we were actually dealing with (we only suspected cancer), Mom was getting dex. She was also receiving Medrole. I remember this clearly because I saw it listed on the patient transfer sheets at the nursing station, though I have no idea why they were using both. Anyway, three days ago, we ended up at the emergency room in Jordanovac and it was a complete disaster. 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 it wasn't really an emergency admission. It was pure luck that we left, because follow-up tests revealed she has pleural effusion and cancer progression in her lungs, and this progression happened within just three weeks of her last check-up. 🙂 The results are a total catastrophe. The attending doctor at the ER didn't admit her... honestly, he didn't even tell me there was an effusion; he just said everything was fine, which I only discovered by reading the discharge papers myself. Despite Mom telling him repeatedly that nothing hurts—she hasn't taken a single painkiller since treatment began—he insisted on prescribing Tramal and patches. He wouldn't take no for an answer. So, the next day, I go to see my primary doctor, who was actually more panicked than I was. She’s a deeply compassionate physician, and after hearing about the patches and the Tramal, she told me she’d come for a home visit the following day to handle those patches herself. Then, she drops this bombshell: she tells me Mom probably won't be able to undergo radiation, so it might be best to get her moved to a high-end facility like the Mayo Clinic. I just sat there staring blankly, completely lost. 🤔 .... And then today, the doctor arrives for the home visit, examines Mom, and everything seems okay. We sit there for a few minutes, staring at each other in stunned silence because the doctor had fully expected Mom to be in a coma. Ultimately, she didn't apply the patches and agreed that 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 to Jordanovac to deal with that fluid—if it even is fluid—because Mom isn't experiencing any discomfort related to it; she sleeps like a log, stays active, 😁 and isn't showing signs of fatigue (so far). I keep wondering if that isn't just a trace from the previous effusion, but compared to the actual cancer progression, it could be fluid. I just don't understand why the ER doctor said nothing and why he was so adamant about the Tramal and the patches. To make matters worse, he dismissed the Tramal as just a way to manage pain, and regarding the Decortin, he claimed 40 mg is far too low. He said she should be getting at least double that, yet that was exactly what her pulmonologist prescribed. Now I am seriously contemplating switching back to dexamethasone. Is that even possible since she’s been on Decortin for three days already? Or maybe switch to Medrole if that’s superior? My doctor will likely only prescribe whatever she deems necessary, but is it even legal for me to make the switch?

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.

Ugh, well, it looks like I’m joining your ranks now too...
I’ve been lurking here and reading all your posts for about a year now, and honestly, I just want to say thank you so much to everyone for everything you share here...
You guys have given me so much strength and hope, plus I've learned about so many rights we actually have, which is crazy because nobody really informs you about any of that while you're drowning in this whole sickness thing...

About two years ago, my Dad was diagnosed with Stage I lung adenocarcinoma...
And man, I don't even need to tell any of you about that initial shock and pure terror we felt at the start...
He actually responded so well to the first round of chemo—after just two cycles, the disease started going into regression! He was feeling great, not panicking, just full of hope and ready to keep fighting...
But things have been slowly spiraling downhill since this summer; he started getting weak, losing his appetite, and the pain is just getting stronger and happening more often, and even the Tramal isn't doing much anymore, if it works at all...
The latest CT scan shows the primary tumor is progressing and there’s a metastasis on the 9th rib, even after two cycles of Pemetrexed...
Now the shortness of breath is kicking in, like he literally can't take a full breath, so we're constantly making pilgrimages to the ER just to get him some oxygen, Medrole, and an IV to take the edge off...
His oxygen levels are actually okay, so they tell us—in layman's terms—that he doesn't technically need home oxygen, it's just that his airways are totally blocked up...
His CRP levels spike quite a bit, then antibiotics bring them back down to a normal range, and then it’s just a cycle of starting all over again... Other than that, his blood work values are actually pretty decent for a 70-year-old, despite everything...
Physically and mentally, he’s just slowly fading away; he's so exhausted from the constant pain, and on the days when the pain hits hard, he gets these terrifying episodes where he can't breathe...
During one visit to the Mayo Clinic, the doctor who took him in basically refused to give him the kind of help he expected given his diagnosis, saying there wasn't much more they could do, all while he was gasping for air like a fish out of water...
And then, almost in a whisper, she tells us, "Just wait until Monday for the next chemo cycle, if that even makes sense anymore," which just totally crushed his spirit and sent him sinking further into his shell...
We're currently getting ready for a follow-up appointment with the doctor, and they'll probably be the ones to decide if we should push through with more chemo or if he's just become too weak... I honestly don't know what to do anymore or how to handle this, or how I can possibly make any of this easier for him...

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?

Angela Wright said:So, here's what I'm thinking...
I really wonder why they haven't started palliative radiation on his ribs yet, because honestly, that would probably stop the pain immediately and let him finally settle down...
Also, if they aren't doing that, why hasn't a thoracic surgeon been brought in to look at a palliative procedure to clear out those airways?
And another thing—why hasn't an anesthesiologist been consulted to whip up a custom cocktail and fine-tune his painkiller doses?
Which hospital is he being treated at?

Thanks so much for the quick reply, Angela!
He's actually over at the hospital in Miami...
They haven't even mentioned radiation once, and he hasn't had a single session so far, so they haven't even brought it up as an option...
I'll see what the doctor has to say today and then figure out my next move...

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!

Just wanted to give you guys a quick heads-up on how things are moving along...
The latest CT scan wasn't great news at all, showing some progressive metastasis...
We're just hanging tight until Wednesday when the medical board meets to decide our next move and see if there's even any point in pushing forward with the chemo...

Thank you all so much for your kind words—it truly means a lot. In a few days, I am planning to sit down and write out a full account of his treatment process and how everything unfolded.

It is all quite difficult to navigate, honestly. This past week was particularly brutal; it has been a month since he passed, and yesterday marked what would have been his 34th birthday. I am just trying to find my way through it all, one day at a time.

I am sending each and every one of you an abundance of courage and strength 🙂.

stormyfalcon68 said:Just wanted to give an update on how things are moving
The latest CT scan looks pretty bad; the metastases are progressing.
We’re waiting until Wednesday for the medical board to review everything and decide what the next steps are—if there’s even any point in sticking with chemotherapy at this stage...

Based on the current line of therapy they're using? No. They'll look into a different line of treatment or potentially surgery if the area can actually be touched.

Has anyone here had any experience with Gliadel wafers? My understanding is that they're inserted directly into the tumor site to help the chemotherapy penetrate more effectively, if I'm reading this right.

Please, I need some help here.
My mom finally got discharged to wait at home until her next follow-up—we're basically just waiting to see if the chemo and radiation actually did anything. In her discharge papers, the oncologist prescribed her to continue with Dex, but when I went to the pharmacy, they told me that Dex injections aren't covered by Medicare. $57 It’s going to cost us for 12 days!
I honestly can't afford to shell out for this right now, especially since nobody mentioned that Dex wouldn't be covered... I'm just totally lost here.

I am looking for some advice. My partner was diagnosed yesterday with testicular cancer at the Mediko clinic in Cleveland.
The whole thing started last week when he complained about losing his ability to speak. It happened twice in one week, and that’s when he finally decided to tell me. He also mentioned, "You know, my left testicle has been bothering me for a while now."
That was last Wednesday.
By Friday, we were already seeing his primary care physician, who ran a full blood panel, checked his markers, and several other tests. On Monday, she told him he needed to see a urologist and a neurologist immediately, so we booked everything at the Mediko clinic in Cleveland.
We went to the clinic, and the urologist confirmed it is indeed testicular cancer and surgery is required. The neurologist said his stuttering—this inability to speak—could be anything, and insisted we get an MRI. We got the MRI done, but this morning they called us urgently to say the scan wasn't clear enough and needs to be reviewed by a neurosurgeon at the Mayo Clinic.
I didn't know how to get him to the Mayo Clinic, so I scheduled a private appointment with Dr. Ante Melada for next Tuesday.
I also managed to book an appointment with an oncologist today at 5:00 PM so he can talk things through with us.

He has actually been feeling sick for a while; he knew something was wrong, but he kept quiet.
Does this bad MRI result mean the cancer has metastasized to his brain?
What are our next steps? How does this process work?

Panic is setting in, but I am trying to stay rational and piece this together.

First, the surgery for the testis (do we need a referral from the GP?), then the Mayo Clinic to check the brain, and then...
Or should we be doing this in a different order?

Best regards,
Midnight

Brenda Mendoza57 said:Please, I need help.
My mom was discharged to wait for her next checkup to see if the chemo and radiation actually worked. In the discharge papers, the oncologist prescribed continuing the Dex with dexamethasone, but the pharmacy tells me that the injectable version isn't covered by Medicare. $57 That's for just 12 days!
I can't afford that right now, and nobody told me there would be an out-of-pocket cost for the Dex; I'm totally lost here.

It’s actually a good thing they’re even willing to sell you the ampules, because according to the indications, that stuff is strictly meant for hospital treatment. We ended up buying the ampules ourselves and mixing them with the tablets prescribed by the doctor—we basically split the daily dose into three separate doses to make it work.
Your other option is to see if your local health department or social services office can provide the injectable Dex for you.

Donna Brooks20 said:I’m asking for help. My partner was diagnosed yesterday with testicular cancer at the Mediko clinic in Cleveland.
It all started last week when he complained about losing his ability to speak. It happened twice in one week, and that's when he finally decided to tell me. Then he just added, "You know, my left testicle has been bothering me for a while now."
That was last Wednesday.
By Friday, we were already at the GP's office, where she ran a full blood panel, checked his markers, and a few other things. On Monday, she told him he urgently needs to see a urologist and a neurologist, so we booked everything at the clinic in Cleveland.
We went to the clinic, and the urologist confirmed it’s testicular cancer and that surgery is necessary. The neurologist said his stuttering—or rather, his inability to speak—could be anything and insisted we get an MRI. We got the MRI done, they reviewed it this morning, and then called us in a rush saying the reading wasn't sufficient and needs to be reviewed by someone in neurosurgery at the Mayo Clinic.
I didn't know how to get him to the Mayo Clinic, so I scheduled a private appointment with Dr. Ante Melada for next Tuesday.
I also scheduled an appointment with an oncologist today at 5:00 PM so he can talk things through with us.

He’s actually been feeling sick for a while; he knew something was up but kept quiet.
Does this bad MRI mean the cancer has metastasized to the brain?
What do we need to do next? How does this whole process work?

Panic is setting in, but I’m trying to stay level-headed and organize our next steps.

Testicular surgery (do we need a referral from the doctor?), then the Mayo Clinic to check the brain, and then...
Or should we be doing things in a different order?

Best regards,
Midnight

Man, I feel for you. I'm worried he waited too long and that there might be metastases in the brain.
Melada is a great doctor. He'll explain exactly what's happening and what comes next. He'll definitely need surgery, followed by more tests to see if there are any other sites involved—most likely a PET CT and probably a bone scan.
If there is a metastasis in the brain, radiation might be an option, but don't rule out surgery like Gliadel if the spot is small enough and localized. Melada will suggest the best path immediately.
Regardless, you're looking at a major fight ahead. First the surgery, then almost certainly chemotherapy.
Hang in there.

Angela Wright said:As for me, I'm worried. I fear he waited too long, and there's a chance the tumors have already spread to the brain.
Melada is an excellent doctor. She will explain the situation and the next steps clearly. Surgery seems inevitable, followed by further testing to check for other sites—likely a PET CT and a bone scan.
If a tumor is in the brain, radiation might be the move, but don't rule out surgery if the site is small enough and localized. Melada will provide the recommendation immediately.
Regardless, you're facing a massive fight ahead. First surgery, then almost certainly chemotherapy.
Hang in there.

Thanks for the quick reply. It’s a relief to hear you say Melada is a primary specialist. She's a solid doctor; we'll rely on her guidance.
Is there actual hope for a cure here, or has this all gone too far?

Hi there!
I’m looking for some advice if anyone here has dealt with something similar or might have some insight.
My mother-in-law just finished a six-week stretch of chemo and radiation following surgery for a grade 4 glioblastoma. They’ve tapered her off all her medications, including the Decortin, and now she’s just waiting for her follow-up MRI in December.
The thing is, she’s been dealing with daily diarrhea for about 7 or 8 days straight now. We initially assumed it was a side effect of the treatment, but our oncologist told us that shouldn't be the case since she isn't currently undergoing active chemo.

Does anyone know if this could still be linked to the therapy somehow, or is it more likely that her intestinal lining has just been completely wrecked by everything?
If you have any suggestions on what might help settle her stomach, I would truly appreciate it.

Donna Brooks20 said:Thanks for getting back to me so fast. I feel a little better knowing you said Melada is a solid doctor and will point us in the right direction.
Is there actually any hope for a cure, or has this all just gone too far?

Look, if we're talking about metastatic disease, that’s a heavy hand to be dealt, no doubt about it. But honestly, so much depends on the specifics—everything from how far it's spread to the actual grade of the malignancy.
Listen, what is what, you have to lay all the facts out on the table, face them head-on, fight, and try not to let it consume your thoughts.
For the rest of us, this should serve as a textbook example of why you never ignore symptoms; you check them out immediately.

Linda Patel27 said:Hi there!
I really need some advice if anyone knows anything or has gone through this.
My mother-in-law just finished six weeks of chemo and radiation following surgery for a Grade 4 glioblastoma. They’ve taken her off all her medications, including the dexamethasone, until her follow-up MRI in December.
The problem is, she’s been dealing with daily diarrhea for about 7 or 8 days now. We thought it might be a side effect of the treatment, but her oncologist told us that shouldn't be the case unless she were still actively undergoing chemo.

Does anyone know if this could actually be linked to the therapy, or is it more likely just damaged intestinal lining or something else entirely?
And if you have any suggestions on what she should take, I would be so grateful.

It isn't from the therapy.
Get her those Prolife probiotic ampoules. My daughter struggled with diarrhea for twenty days straight and nothing worked until she had that first dose of Prolife.