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

Does anyone happen to have any insight—perhaps even some firsthand experience—regarding the possibility of accessing Avastin as a therapeutic option? I’m looking for anything at all... experiences, availability, whatever you might know. Thanks.

Hey everyone, we had the vision exam today, and unfortunately, the damage is permanent. We’re at the stage where he’s lost his sight entirely. Tomorrow we have to head to psychiatry because he’s incredibly hyperactive and hasn't slept a wink. I'm worried about everything—especially the kids—and I'm already thinking about seeking out some psychological help. Alma, thanks for the support. Honestly, I don't even know what else is coming our way. I just hope we all find the strength to get through this together. Alma, thank you again. Just stay brave, guys; take it one battle at a time. I still hold onto hope that things will turn out okay, no matter how grim the prognosis or diagnosis looks. For those asking, we are being treated at the Mayo Clinic by Professor Santek, who is truly a wonderful man. Best to all.

ruggedmarlin2 said:Does anyone happen to know if there's any actual way to get Avastin as a treatment option? Any experiences? Anything at all? Thanks.

Avastin is an FDA-approved drug here in the States, and if it's covered under Medicare for a specific diagnosis within a certain treatment protocol, then yes, you can get it...

But look, if you want a straight answer, you need to be more specific about what we're actually talking about and where exactly the issue lies.

Hey everyone, his joints have started hurting incredibly badly. Yesterday, he couldn't even stand up. Is this happening because of the illness, the dexamethasone, or something else entirely? Could it be his liver? I’m losing my mind here—I don't know how to help him when he refuses everything. He won't take any painkillers. Has anyone dealt with this before?

Elizabeth Fisher13 said:The worst time for our family was when my mother-in-law was diagnosed with the exact same tumor as your husband. She had surgery back in February, went through radiation and chemo, and she’s starting her third cycle of Temodal in a few days. It’s... a lot. It isn't life-threateningly bad, thank God, but it isn't great either. Physically, she might be holding up, but mentally? She’s completely fallen apart. She's jumpy, tearful, and stuck in this loop of self-pity. That phobia, that constant fear—it just won't let go. She's afraid to drive, afraid to be alone, afraid of blood tests, afraid of the treatment, afraid for us... It’s draining us all. She’s on Xanax regularly, and we give her all the support we can; we try to keep things positive. I totally get where she's coming from. GBM is a brutal tumor, and she doesn't even know the true prognosis. When she breaks down mentally, it hits everyone. We haven't been able to function normally for a year now because from last September until February, we were bouncing from clinic to clinic, only to have doctors look at us blankly and say, "She's fine." We're just taking it day by day. Some days are better than others. I pray to God there are more "good" days ahead. I truly hope your husband hits some better stretches during this illness. Hang in there!

Man, hang in there. Honestly, I don't know how much they actually realize about their own condition, but wouldn't it be easier if they didn't know at all? Life would be simpler. For us, it's just pure exhaustion.

steelpilot62 said:Listen, everyone, his joints have started hurting incredibly badly. Yesterday, he couldn't even stand up on his own two feet. Is this being caused by the disease itself, the dexamethasone, or something else entirely? Could it be his liver acting up? I’m losing my mind here—I honestly don't know how to help him when he refuses everything. He won't even touch pain medication. Has anyone dealt with something like this before?

I think dexamethasone could be an option, especially if there’s significant swelling involved. Ibuprofen might offer some relief too—you can find it in certain topical massage gels, like the ones used in Deep Relief. When my mom was dealing with this, we arranged for her to see a physical therapist who set up a home therapy routine. It made a massive difference because the therapist would actually perform massages and guided passive exercises right there with her. Generally speaking, when you're dealing with swollen joints, simply elevating your arms and legs can help quite a bit.
He’s looking for home health assistance and wants his doctor to run a full blood panel and liver function tests, just to rule out any issues with his liver.

steelpilot62 said:Hang in there, everyone! Honestly, I can't tell if they truly grasp the weight of what they're facing, but part of me wishes they didn't. It would be so much easier for them if they were just blissfully unaware. For us, though, this is a total nightmare regardless.

I honestly think there’s a silver lining when it comes to brain tumors: most of the time, people aren't even fully aware of how bad things have actually gotten. Take my mom, for example. She was absolutely convinced she could just handle getting to the bathroom all by herself. If I wasn't watching her like a hawk, she’d try to make the trip alone and end up collapsing somewhere in the house. It got to the point where I had to call my husband to rush home from work just to help me lift her up, because trying to do that solo was an impossible mission. The same thing happened with her medication. She’d be taking a handful of dexamethasone and then two doses of Phenobarbital a day. At one point, I actually had to step in and physically stop her from swallowing a massive handful of Phenobarbital all at once. To her, it didn't matter—everything felt exactly the same. In my opinion, her awareness was only partially there... it really just all depends on which part of the brain is being hit.
Oh my God, just thinking about it is enough to make my stomach knot up all over again. 😢

Angela Wright said:I think it’s possible, especially if they're swollen from the dex. Ibuprofen might help; some massage gels have it (I think Deep Relief does). For my mom, we arranged a visit from a physiatrist who set up her home therapy. It helped a ton because the physical therapist would come by to massage her and go through passive exercises. Also, when joints get swollen like that, keeping arms and legs elevated really helps.
Get home health services and ask the Doctor to run a blood panel and liver function tests just to rule out any liver issues.

In my opinion, one silver lining with brain tumors is that most people aren't fully aware of their condition. My mom, for instance, was convinced she could make it to the bathroom all by herself. If I wasn't watching her constantly, she’d try to go alone and end up collapsing somewhere in the house. I’d have to call my husband to rush home from work just to help me pick her up—it was an impossible task for me alone. It was the same deal with her medication. She’d take a handful of dex and two Phenobarbital pills a day. At one point, I actually had to stop her from swallowing a massive pile of Phenobarbital all at once. To her, it all felt the same. I think her awareness was partially there... it really just depends on which part of the brain is affected.
Oh my God, just thinking about it gives me that heavy knot in my stomach again. 😢

Oh, thank you so much for reaching out! (If we can talk privately). I've been using Deep Relief, and it helped him a little. We're doing both tablets and Phenobarbital (as a preventative). My husband knows exactly how many pills he takes; if I accidentally slip him a sedative because he's being so restless, he'll throw it straight in the trash immediately because it messes with his routine. So, I end up crushing it into juice or yogurt. Did your mom actually manage to sleep through the night? We are struggling so much with sleep; he just can't do it. He was recently at the Rib and got some sleeping pills, so we'll see. Every time I complain to the doctors, they just tell me it's part of the disease process...😢

steelpilot62 said:Thanks for reaching out! If you don't mind, let's stick to first names. We've been applying DeepRelief, and he seems to be feeling a little better because of it. We’re currently managing things with both tablets and Phenobarbital as a preventative measure. My husband is incredibly strict about the dosage—he knows exactly how many pills he takes, and if I accidentally try to slip him a sedative, he'll toss it straight in the trash. He gets extremely restless, and any disruption to his routine sends him into a tailspin. In those cases, I just have to crush them up and hide them in his juice or yogurt. Is your mother actually able to sleep through the night? We are struggling big time with sleep; he just can't seem to catch any rest. We were over at the Mayo Clinic recently, and they prescribed some sleeping pills, so we'll see if that actually helps. Every time I vent to the doctors about how hard this is, they just give me the same old line: "It's just part of the disease process."😢

My mom didn't really struggle with that specific issue. Her main battle was with her perception of time. She’d go lie down right after lunch, and then when she finally got up, she’d head straight for breakfast—meds and everything included. She absolutely refused to believe it was actually the afternoon; I literally had to turn on the TV just so she could check the news ticker to verify if I was telling the truth or just trying to drive her crazy. Luckily, she didn't deal with any sudden mood swings or personality shifts; she just became somewhat blunt and dull.
Unfortunately, that’s just how the disease works. Personality shifts are an incredibly common part of the process.
I want to send you all the strength in the world to endure this fight. Every single time it takes something away from you or hits you hard, just remember: that isn't who you are. It’s the tumor doing that, not you. 😢

The father-in-law results finally arrived, and they’re claiming everything looks fine, suggesting we just wait 3-4 months for the next check-up.
Now, what’s actually bothering me is that he’s still coughing. Given that he dealt with pneumonia, is it possible this is just a lingering effect from that? There was absolutely no mention of metastasis in the reports.
Is there a specific cough syrup or something else that might offer him some relief?
Regarding those results, should I proactively reach out to the oncologist to schedule the regular follow-ups, or should I just sit tight and wait for her to contact us?
Also, would it be worth doing a blood count and checking his markers once a month, purely as a preventative measure?

Apologies for the barrage of questions; I just want to make sure I'm making the right moves at the right time.

Hi,

I was wondering if anyone could offer some advice—feel free to send me a private message if that's easier. Does anyone know which hematologist or oncologist has the most experience specifically dealing with multiple myeloma? I'm looking for expertise regarding diagnosis and everything that follows.

Thanks,

Amanda Miller69 said:Finally, we got all the results back saying everything looks fine and we just need follow-ups in 3-4 months.
The thing that’s actually bothering me is that he’s still coughing. Since he had pneumonia, could that be what’s causing it? There was no mention of any metastasis.
Is there a specific syrup or anything else that might help him?
Should I reach out to the oncologist again regarding regular check-ups, or should I just wait to hear from her?
And just for peace of mind, would it be a good idea to do a CBC and markers once a month for prevention?

Sorry for the barrage of questions, I just want to make sure I know how to handle things promptly.

When have you ever seen a hospital call someone just to schedule a follow-up? 🤦 😁
We’re always the ones calling them; honestly, you practically have to harass them whenever you need something. If I were you, I'd go ahead with those monthly markers.
As for the coughing, look, he went through major surgery, so there’s bound to be significant scar tissue and adhesions, which definitely causes irritation. An antitussive might help. Even a doctor at the Mayo Clinic could prescribe something for that.
I am truly relieved that everything turned out okay. Given how things were going, I was genuinely worried about the outcome.
Now, just get back to living your life and stay on top of the check-ups. I’d do exactly what you suggested.

Alex Thomas7 said:Hey,

I was wondering if anyone could give me some advice—feel free to DM me if that's easier. Which hematologist or oncologist has the most experience dealing with multiple myeloma? Specifically regarding diagnostics and everything else involved...

Thanks

Any hematologist will do, but you definitely want Rebro!

We’ve got an MRI scheduled in a week. Fingers crossed that the tumors have shrunk at least a little, or better yet, completely vanished! Question: if by some chance the radiation and Temodal don't work—or if they only work a tiny bit—do they just keep going with Temodal monotherapy? I'm terrified they might take away our only lifeline... because he actually handles it really well. Thanks in advance!

steelpilot62 said:We’re heading in for an MRI in a week. Fingers crossed that things have shrunk at least a little, or in a best-case scenario, vanished entirely! Question: if it turns out radiation and Temodal didn't work—or only had a minimal impact—do they just keep going with Temodal monotherapy? I'm terrified they'll take away our only lifeline... because he actually tolerates it quite well. Thanks in advance!

No, they won't. If it fails to show results, it's undeniable proof that Temodal isn't doing the job, and continuing to poison someone with a drug that isn't working is just senseless. At that point, they move on to a different line of treatment, typically involving CCNU and Vincristine.
Generally speaking, it usually works because radiation is actually the heavy hitter against the tumor, especially when you pair it with Temodal—even more so if the tumor was surgically removed beforehand. If things look good right now and there aren't any neurological deficits typical of a tumor, you can expect a decent report. Even if the situation remains unchanged, a stable result is still considered a win, and they'll stick with the Temodal.
Try to face the reality here: with a diagnosis like this, everything we do is essentially a fight to buy more time. We want it to last as long as possible—at least until something more effective hits clinical application. If you let fear consume you, it will break you, and you'll start making mistakes you wouldn't otherwise make. I'm telling you this from experience, a kind of experience I wouldn't wish on anyone.

Hey everyone.
First off, I just want to say how sorry I am to everyone here who has lost someone they love. 😢

I don't check in here as often as I should, but trust me—I’m reading everything you guys post every single day and keeping up with all the updates. I actually post quite regularly over on another forum, but I want to make sure I keep checking in here too, just to keep everyone updated on what's going on with my dad—especially for those of you who have been following my previous posts.

So, here’s the update—Dad finished his last round of chemo about four months ago (he completed a full 12-cycle PE protocol). We just got the follow-up CT results back, and honestly, it’s looking pretty good—the metastases are continuing to regress. The largest one in his liver is down to about 2 cm now, along with a few smaller ones. The Doctor actually wanted to push forward with more chemo, but we hit a bit of a snag because his kidney function took a dive. To get things back on track, he’s been doing home infusions for the past two weeks—basically trying to flush everything out by drinking about three liters of fluid a day—just to try and bump up his creatinine clearance, which had dropped down to 36.
After those two weeks, the clearance improved to 41—which is better, I guess—but still not enough to move forward with the chemo. They can't start the cisplatin unless that clearance stays at 50 or above.
Since there wasn't really any other way to play it—we didn't just sit around and wait for chemo to kick in or whatever—the doctor basically told us we need to run a new CT scan in three months. If things have progressed by then, we'll be moving straight to a second line of chemotherapy. Just one of those situations where you're stuck waiting and watching.

We didn't really have much choice but to just sit tight and wait out those three months until the next round of tests—basically just crossing our fingers and hoping for the best. While we were waiting, Dad was taking Beta Glucan at home, along with some turmeric capsules that I actually filled myself using pure spice.

I had the CT scan done last week, and here’s what the results show:

The bottom line says there’s no progression compared to the scan from three months ago—which actually means we're seeing some good regression in the metastases.
So, looking at the liver scans—that main metastasis is still sitting there at 20 mm. It’s exactly the same size as last time, which is... well, it's what it is. There are also a few other tiny changes showing up. Interestingly, they didn't mention that other larger spot that was there before, so I'm assuming that one has finally shrunk down to nothing.
The CYFRA 21-1 came back at 2.15 (range is 0.0 - 3.31)—which is actually even lower than last time—and my blood work is looking better too.

I can't even begin to tell you guys how much that good lab result cheered us up—I was literally jumping for joy. 🙂
The doctor is happy with how things are looking—she actually scheduled us for a follow-up in three months to go over the new results.

Dad finally managed to claw back all those lost 30 pounds—he’s feeling pretty good now—and he hasn't stopped making jokes at his own expense. Typical. 🙂

I just wanted to drop in and tell you all to keep fighting with everything you've got—don't you dare give up now. I’m sending nothing but strength to everyone out there battling this evil, and I'm pulling for those lab results to keep getting better and better.

I'm scared too—every single day—because that’s just the reality when you're dealing with a disease like this. But at the end of the day, I have to believe things will turn out okay. I'm trying to stay optimistic, stay positive, and just keep hoping that everything is going to be alright.

Have you guys heard about Dr. Zhivkov? This fake doctor is out here peddling hemp oil at Marica's hair salon and scamming people who are seriously ill.
Watch your backs because these kinds of scammers are everywhere! Always double-check everything and don't go taking anything on your own without consulting a real doctor first.

Honestly, as if having incredibly sick family members or fighting a tumor ourselves wasn't enough, the system goes out of its way to make things harder. On paper, everyone has rights, but the second you try to actually use them, you hit a brick wall. Here’s a quick summary of my two-week nightmare: My oncologist issued a D1 referral for continued Temodal monotherapy, which covers all the diagnostic tests the doctor orders and stays valid for 365 days from the issue date. Per Medicare rules, the hospital is supposed to provide internal referrals for specific tests. The headache started when I arranged an MRI for my husband at the Neuron clinic (which has a contract with the KBC). I went back to the primary oncology office, and they told me they couldn't issue the red referral; instead, they sent me to the chemo and radiation outpatient clinic at Rebro. When I got there, they claimed they don't handle referrals for expensive scans—they only deal with the "small stuff" like basic labs. In desperation, I called Medicare to beg for help because we have an MRI scheduled and nobody will release the referral! Finally, I reached a coordinator who sent an official memo to the KBC demanding they urgently issue the internal referral for this necessary scan. All this new patient routing was supposed to help us, the patients, but it just complicated our lives. I finally got the referral with a note from the oncologist... "Dear and respected Ms. XXX, congratulations on your persistence." So, just so you know for the future: if you have D1 or D2 referrals, the facility treating you MUST give you the internal referrals needed for scheduling. That referral expires once the discharge papers are signed. For any follow-up checks after discharge, the patient needs a red referral written by the primary oncologist.

Angela Wright said:Have you guys heard about Dr. Zhivkov? This fake doctor is peddling hemp oil out of Marica’s hair salon and scamming people who are seriously ill.
Stay sharp, because these types are everywhere. Always double-check everything and don't go taking anything on your own without talking to a real doctor first.

The absolute worst kind of people—if you can even call them that! And any actual physician would flat-out reject any attempt at "treatment" using that oil.

I'm wondering about something, though I'm not quite sure where to ask: can a biopsy actually trigger metastases?