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

neonheron32 said:I can't quite recall the doctor's name, but Dr. Radić from Mercury used to treat my grandfather when he was dealing with immune thrombocytopenia and gammaglobulinemia. She once sent him over to the hospital near Dr. Radić—I think it was his wife—because they suspected some kind of brain growth, though thankfully it turned out to be nothing. But that was five or six years ago.

I don't think we're talking about the same person. I just looked it up, and there's a hematologist named Delfa Radic Kristo, which actually lines up with what you mentioned about the thrombocytopenia.
Aside from Jason, there are two other doctors named Radić at the hospital—one is a neurosurgeon, and the other is an internist at the cardiovascular institute, so that’s likely who your grandfather saw.

Brandon Lopez6: Hey, how did grandma's surgery go?

Here’s the situation: Mom was at the hospital from 11 yesterday until this morning. We saw Dr. Radic today, and they put her back on Dex—2x8 mg. She’s scheduled to start radiation on CT on the 27th. Still, I’m planning on heading over to the clinic to get everything sorted with the paperwork in person.

restlessowl3 said:Here’s the deal: Mom was at the hospital from 11 yesterday until this morning. We saw Jason Radic today, and he put her back on Dexa—2x8 mg. She’s scheduled for CT radiation on the 27th. But honestly, I’m still thinking about taking those papers straight to the ribs.

With whom?
Jason Radic is a solid oncologist.

Angela Wright said:Whose doctor?
Jason Radic is a solid oncologist.

Under the darkness. Though honestly, I’m pretty disappointed by how things went down last time. And who exactly was giving your mom the Dexa? Her GP or someone else???

restlessowl3 said:Total darkness. Even though I’m feeling pretty discouraged, that's how things went down last time. And who on earth was giving your mom the Dex? Was it her primary care doctor or someone else???

My doctor kept writing prescriptions for tablets, even though I managed to hustle at a private pharmacy to get them to sell me the vials for injections instead. I actually had a home health nurse teach me how to give shots under the table. See, those vials are technically only meant for hospital use, and they're the only way to hit the dosage required for brain tumors. My cousin swore up and down that you could just use vials bought from a big chain like CVS, but clearly, my mom was just trying to cut corners on the quality. We had to run back for new prescriptions every couple of days because she was burning through a box and a half daily. These days it's easier thanks to those standing orders, I think, but honestly, in my opinion, the injection is a much better way to go.

Angela Grant22 said:Brandon Lopez6: how did your grandpa's surgery go?

The surgery was pretty intense. He lost a lot of blood, so they had to give him a ton back, but honestly, his recovery has been textbook (thank God). He started waking up the very same evening, and by morning, he was wide awake.
The tumor was huge—about 17 cm—and they actually had to clear out part of a rib too. Thank God they didn't have to remove the whole thing. It reminded me of another old guy in the room who’d been operated on just a couple days before mine was admitted for kidney cancer; when they opened him up, they realized they had to take the rib out as well.
He's back home now. Next Wednesday is the follow-up, where they'll tell us if he needs radiation or chemo, or basically if the tumor spread.
For now, everything is good, thank God, and we're just hoping it stays that way 🙂.

But I really need some advice.
He’s never been an overly emotional guy—at least, he never showed it. I don't think I've ever seen him cry in my entire life. Ever.
Before the surgery, my family kept saying he was getting super emotional and tearful, constantly on the verge of tears, and honestly, I thought they were exaggerating because... I just couldn't see it. It didn't fit who he is.
Well, he's been like this both before and after the surgery, and even now that he's home.
It’s not that he’s sobbing or wailing; it’s just that he talks through tears. Like, we'll be talking about, I don't know, the lunch Grandma made, and he'll be talking with this lump in his throat and tears in his eyes. We aren't even talking about the surgery or the cancer—nothing sad at all—but he's just visibly shaken.

Does anyone have advice on how we can help him? I've heard stories and read plenty on other threads, and obviously, staying positive and not giving up is key, but I'm terrified he might just lose heart.
Before the surgery, he was given some calming pills from the clinic, and they helped (obviously), but I don't think he's allowed to take them anymore. Plus, I'm not sure if numbing those emotions is smart; it feels like it could just trigger more anxiety or depression (speaking from experience with my own long-term daily Xanax use).

That’s just him trying to play games with the situation. Honestly, let him be; he'll get over it. He’s still brand new to this and hasn't found his footing yet. Just tell him if he actually wants to talk, he should lay everything out on the table so you can all hammer out a deal.

Exactly. He’s crying because he’s scared. It’s all still so new, and he doesn't even know if chemo is next or what the plan actually is. That's just how it starts. I dealt with those dark thoughts for a few days myself, but everyone handles them differently. Whatever. You just gotta pick yourself up and push through. Just because he's crying doesn't mean he's giving up.

Anyway, had my regular checkup today and everything looks good. I've officially been in remission for 9 months now.🙂

driftingsurfer14, any word on Taton? Has anything started yet?

copperbison4 said:Exactly. He’s crying because he’s scared—it’s all so new, and he doesn't even know if chemo is next or what the roadmap looks like yet. That's just how it starts. I dealt with negative thoughts for a few days myself; he handles them his way, and others handle them differently. Well, you just have to pick yourself up and keep pushing. Crying doesn't mean giving up.

On another note, I had my regular checkup today and everything looks great. I've officially been in remission for 9 months now 🙂
.
driftingsurfer14, any news on Dad? Has anything started yet?

Congrats on those clear 9 months! 🙂

I've been a bit swamped lately (I'm due to give birth any day now!), so I haven't been posting regularly, but I'll try to drop in whenever I can to update everyone on Dad—I know firsthand how much every single experience shared on this forum means. 🙂
The biopsy and CT results came back, and they're good. It means the cancer hasn't spread, which is wonderful 🙂. So, the doctor started Dad on his first round of chemo last Thursday. It lasted nearly 5 hours, and he actually handled it quite well—aside from one bout of sweating, a spike in blood sugar that required insulin, and some throat tightness. I told him he needs to stay hydrated (thanks for the advice, copperbison4!).
He was relatively okay for the next three days (though his blood sugar was acting up a bit). On the fourth day, he felt terrible—headaches, malaise, digestive issues, and a fever by the afternoon 😢. I insisted we head to the ER last night because his temperature hit 38.3.
We went to the local hospital since it's closest to us. They did a chest X-ray, a CT scan, and a urine test. The results were fine—no signs of infection—but they insisted he go to Mercy Hospital. After waiting two hours for an ambulance, the staff at Mercy told him he was okay and should just come back in the morning. They saw him again this morning and said he should return for a follow-up this Thursday. He was supposed to have a mole removed today, but they pushed it until after his second round of chemo.
He has 8 rounds of chemo (R-CVP) to go, and I'm honestly hoping they get easier, even though most of your stories suggest otherwise 😢.

Angela Wright said:My doctor actually wrote out prescriptions for pills, even though I managed to work things out at a local private pharmacy to get the injectable vials instead. A visiting nurse—off the books, of course—taught me how to administer the shots myself. Technically, those injections are only meant to be handled in a hospital setting, but they’re the only way to hit the dosage required for brain tumors. My cousin swore up and down that you could just use vials bought from a place like Walgreens, but it seemed like my mom was just trying to cut corners with hers. We had to run back for new prescriptions every couple of days because she was going through a box and a half daily. It’s a bit easier now with those standing orders, I think, but honestly, the injections feel like a much better option.

They taught me how to give the shots too, since the visiting nurse isn't officially allowed to. Even though we get all the equipment and the vials directly from the doctor, she actually managed to coordinate with some home health agency to have people come by and handle the injections. You can actually set that up through Medicare.

Has anyone dealt with brutal headaches and fevers following chemo? What's actually safe to take in that situation?

I can’t seem to find any peace; I’ve just been sitting here crying for my father. I honestly don't even know what all of this implies yet, but I can see enough to know things are looking grim. Every time I dig deeper into research online, the outlook feels even heavier. The only moment of stillness I get is when I'm right there by his side, because I truly never expected us to be facing this. Back in the winter, he took a nasty fall on some black ice, and he hasn't really recovered since. I had hoped there might have been some connection between that fall and how he’s feeling now.
He isn't seeing his doctor until tomorrow afternoon.
Here are my father's results from today: Within the parenchyma of both liver lobes, there are numerous oval, sharply defined hyperechoic zones surrounded by hypoechoic borders, varying in size with diameters reaching up to 10 cm. These findings on the ultrasound are consistent with liver metastases, though they could also represent a primary liver tumor process. In the pancreatic region, there are visible hypoechoic oval zones of various sizes, which may correspond to enlarged lymph nodes, though a primary pancreatic tumor cannot be ruled out either. The gallbladder, spleen, and kidneys appear normal. The liver is enlarged, and some of the aforementioned metastases are protruding through the liver's contour.
I feel completely helpless; I think I would actually find it easier to deal with my own health struggles than this.

@driftingsurfer14/">@@driftingsurfer14

I ended up in the hospital because my fever was out of control. They were hitting me with Tylenol—looks like they were doing two 500mg pills or one 1000mg pill three times a day, spaced out every 6 to 8 hours. Every time the meds wore off, the fever would just go nuts again. One day it got so bad they had to give me an IV to bring the temp down, and man, I started sweating almost instantly. That actually helped.

So, you can ask the doctors if he can at least get some 500mg Tylenol at regular intervals, but honestly, I think it’s more important to figure out what’s actually causing the fever instead of just masking it with pills all day. I guess that’s why there's that rule about calling the unit once things hit 100.4... 🤷 watch to see if these issues keep happening and insist that the doctors deal with the root cause.

stormytinker4 said:Looking at the opening post and the heartbreaking experiences most of us face while fighting this brutal disease, I wanted to share some positive stories and successes in healing. My own father didn't even get the chance to try different treatments; he lost his battle before he could truly begin, passing away just a month after his lung cancer diagnosis. After losing him, I made it my mission to help anyone else facing this illness—offering advice, sharing links, anything I can. I’ve spent countless hours Googling and searching for answers, building up a massive collection of links, and I feel like I’ve actually learned quite a bit along the way. Maybe this isn't exactly what this forum is for, but I believe every single experience, especially a positive one, provides hope and strength to those still fighting cancer. So, here are firsthand accounts from three cancer patients I stay in constant contact with...

A lung cancer patient who was sent home with palliative care recommendations... He wasn't eating, couldn't get out of bed, had lost his voice, couldn't move his left arm, and was completely disoriented. After one month of taking Pawpaw, his condition stabilized with slight improvements. After two months of Pawpaw, his voice has almost fully returned, he uses his left arm nearly normally, he's walking, eating, has an appetite, and feels great...
A lung adenocarcinoma patient who had surgery several years ago and went through chemo... The cancer returned with metastases. After one month of taking Pawpaw, this man, who used to be bedridden, was out shoveling snow in front of his house for three hours...
A breast cancer patient, inoperable due to the size of the tumor, whose chemotherapy had to be stopped because it severely impacted her heart function. After a month and a half of taking Pawpaw, the tumor shrank by a few millimeters. After two months, some markers are back within normal limits, though others are still slightly elevated. They are waiting on test results to see the status of the tumor. The patient feels wonderful...
All these patients consumed cow's milk cheese with flaxseed oil and flaxseeds alongside the Pawpaw, while cutting sugar, meat, and flour from their diets and sticking to an alkaline diet.
I hope these results offer some hope to those suffering. Good luck to everyone in their fight!! I read something on one of the links that felt very true: cancer is far too serious and heavy a burden to rely on just one single method of treatment! Whatever you think might help, give it a try!! 🙂

Could someone please explain to me what Pawpaw actually is? And does anyone have any insight regarding treatment with baking soda?
My grandfather is using Matrifen patches and Tramal. It has metastasized to his liver and generally his abdomen. He is in severe pain... after dealing with long periods of constipation, he now has constant diarrhea, is irritable, and is enduring intense pain. Please, if anyone has dealt with this diagnosis or this type of therapy, write to me with your experiences. Any advice is welcome because we just don't know which direction to take... He was diagnosed with malignant melanoma back in 2008. He’s gone through two surgeries and three rounds of chemotherapy. His condition is worsening; he is visibly wasting away... he's flickering out like a candle 😢 ....

copperbison4 said:@driftingsurfer14/">@@driftingsurfer14

I was actually stuck in the hospital myself due to a fever—they had me on Tylenol—it felt like I was taking two 500mg tablets or one 1000mg dose three times a day, spaced out every 6 to 8 hours. Every time the meds wore off, the fever would just spike again. One day was so brutal they had to give me an IV fever reducer, which made me start sweating almost instantly—thankfully, that helped.

So, you should ask the doctors if he can at least take some 500mg Tylenol at regular intervals, though honestly, finding the actual cause of the fever is way more important than just masking it with pills. I guess that’s why they say to report back once it hits 100.4... 🤷 Keep an eye on those symptoms and insist the doctors get to the bottom of it.

And what caused your fever?
After spending the whole day at the rib, he ended up in infectious disease this evening. They'll be running tests tomorrow morning, so hopefully we'll know the cause of the fever and headache by noon. Fingers crossed it's nothing serious, because this has been a total nightmare.😢

Sandra Carter50 said:Can someone please explain what Pawpaw actually is? Also, does anyone know anything about treating this with baking soda?
My grandfather is currently on Matrifen and Tramal. It’s metastasized to his liver and generally throughout the abdomen. He's in massive pain. After dealing with long periods of constipation, he’s now facing constant diarrhea; he’s irritable and just struggling through intense pain. Please, if any of you have encountered this diagnosis or this specific therapy, share your experiences. Any advice at all helps because we are completely lost on which direction to take. He was diagnosed with malignant melanoma back in 2008. He’s gone through two surgeries and three rounds of chemo. His condition is deteriorating; he’s wasting away right before our eyes, flickering out like a candle. 😢 ....

Pawpaw is an exotic fruit. Just like many other "miracle" plants and supplements, there's plenty of folklore surrounding it, but usually, there are zero published before-and-after clinical findings to back it up.
As for the baking soda thing, that's just the product of some sick, disgraced doctor and pure quackery. That guy Simoncini carries the weight of many dead souls on his conscience, and he's actually facing legal proceedings for it. In fact, they stripped him of his medical license in Italy. Regarding alternative medicine, that belongs in the other sub-forum. Posting it here breaks the rules.

@driftingsurfer14/">@@driftingsurfer14

That happened right after my 6th round of chemo. It turned out to be pneumonia, and my white blood cell count was absolutely trashed at the time, so looking back, it was just another side effect of the treatment. My doctor was super thorough though—she insisted on everything from brain, chest, and abdominal CT scans to a bronchoscopy. In the end, the pathology report showed that the shadow on my lungs was just inflammation (honestly, I can't remember if it was some kind of fungus or bacteria or what), so they got it sorted out pretty quickly. I was also seeing an infectious disease specialist during that stretch who was working closely with my hematologist.

feralsurfer72, I’m so sorry to hear about your dad’s diagnosis. It’s brutal, and I know you're going through absolute hell right now—I've been there myself. Just hang in there and try to find some strength; you’re both going to need it for the fight ahead. No matter how bad the prognosis looks, there's always something you can do to make things easier for him, because they're the ones really suffering. Just stay by his side and give him all the love you've got. Wishing you guys nothing but luck with the treatment and hoping he stays out of pain.

copperbison4 said:@driftingsurfer14/">@@driftingsurfer14

That happened right after the 6th chemo round—later it turned out to be pneumonia. My white blood cell count was also absolutely disastrous at the time, so it all boiled down to being a side effect of the chemo. Still, my doctor insisted on running every test imaginable—brain CT, chest, abdomen, even a bronchoscopy—only for the histology to show that the shadow on the lungs was just inflammation (I honestly can't remember if it was some fungus or bacteria, I'm not sure), so they cleared it up relatively quickly. I was also seeing an infectious disease specialist during that period—they were collaborating closely with my hematologist.

We still don't have a definitive answer today, but they did rule out the meningitis they were worried about. They’re going to run an MRI, and they performed another bone marrow biopsy too.
If things got this messy after the first round, I dread to think what it will look like by the eighth. 😢