Support resources for families dealing with cancer and other serious illnesses

To be honest, I haven't posted for a while because I wasn't really sure what to say. My dad, who is dealing with stomach adenocarcinoma that has metastasized to the liver, just finished his first round of chemotherapy. It lasted six days. He received Cisplatin along with five doses of 5Fu (a 22-hour drip followed by five consecutive bottles). They sent him home, and now he’s looking at a four-week recovery period. On the first day, he felt a bit weak, though I guess he attributed that mostly to being stuck in bed for six days straight. He's usually a very active guy. The only thing he's feeling right now is a bit of tightness when swallowing, almost like a sore throat. His doctor prescribed some kind of gel for it today. While searching online, I came across a site about mushroom-based health supplements. I reached out to them and they seem okay, but the cost is a bit steep. For a 60-day course of therapy, it would cost roughly $5667. I suppose the money isn't the main issue if it actually works. I'm curious to hear your thoughts—has anyone here had experience with this? Truthfully, there was a moment where I felt like I just wanted to buy everything I could find to help. I took the advice of Angela Wright and bought some Native propolis; he's also drinking plenty of nettle tea, and I'm making sure he eats lots of fresh fruits and vegetables, plus beet juice, of course. Does anyone else have advice on how to improve blood counts and prepare for the next chemo cycle?? I truly tip my hat to all of you for your courage and strength. Reading these posts really makes me feel like I'm not going through this alone.

dustyranger11, I don't have any firsthand experience with Quest Diagnostics, so I honestly can't tell you anything reliable... My mom hasn't gone there yet. I’m guessing she'll head in after her third round of chemo. Hmm, actually, maybe she should probably be scheduling that right now?

According to what they have listed on their website:
Physicians from the following specialties may refer patients for an FDG-PET/CT diagnostic procedure: oncology, pulmonology, gynecology, dermatology/venereology, internal medicine (including hematologists, gastroenterologists, and endocrinologists), and pediatric oncology—basically, anyone treating conditions where clinical indications for FDG-PET/CT have been proven effective

Maybe the best move is just to give them a ring and get the lowdown straight from the source (you know, listen to the experts!)

Anyway, how's your dad doing? Hang in there, okay? Don't let it get you down!

Linda Wright5, sorry about that, I just cleared out my inbox

So, my mom finished her first round of chemo back on June 27th... she’s doing this six-cycle thing following the Mayo Clinic protocol. We’ve got a bit of a gap before the next one starts on July 28th because her oncologist actually gave her an extra week to recover after that first hit... I mean, she wasn't totally sure how Mom's body was going to react to the initial shock, you know? Usually, they run on a 1+3 schedule, but we're just taking it day by day right now...
I honestly didn't have the guts to post anything until now. After she finished her cycle, I was just sitting there, terrified, waiting to see how her body would actually react... I mean, I guess we can be pretty happy with how things are going so far (even though, let's be real, how she reacts doesn't really tell us if the therapy is actually working)... She didn't deal with any nausea, just some loose stools—actually, it was basically straight-up diarrhea—on the very first day she started the treatment. And her hair hasn't fallen out yet (though, honestly, I'm still watching her like a hawk)... 🙂)
So, three days after her period wrapped up, she suddenly starts getting these little sores on her bottom lip—which is just great, because she’s been super diligent about brushing and rinsing with chamomile and sage all along... I mean, what else are you supposed to do? Luckily, they didn't spread deeper into her mouth, and thankfully they've already started clearing up. She was using some Gelclair and an alcohol-free propolis, which is basically her go-to cure for everything, even though nobody really suggested that for this specific situation... 🙂)

I mean, honestly, we’ll be counting our lucky stars if this whole therapy thing wraps up with nothing but these side effects... but man, I don't know... I’ve got my doubts... From what I’ve heard, the body starts getting seriously worn down after that third cycle? I guess everything is different for everyone, obviously, but I’d be so incredibly grateful if someone could just jump in here and share what they actually went through...

Everything is just totally screwed... Has she been MIA lately or what!? Does anyone actually know how she’s holding up? I’m seriously crossing my fingers over here... I really hope she made it through that last round of chemo...

shadowmason6 As stated by:
My mother completed her first round of chemotherapy on June 27th... she is following the Mayo Clinic protocol, which consists of six cycles in total. Her next session is scheduled to begin on July 28th. Her oncologist decided to grant her an extra week of recovery time after this initial round, as she wasn't quite sure how my mother would react to the treatment... normally, the regimen follows a 1+3 schedule...
I didn't quite have the courage to post anything until now. Once her cycle finished, I found myself waiting in suspense, wondering exactly how her body would react... I suppose we can be satisfied with the outcome (though, of course, a reaction isn't necessarily a reflection of the therapy's actual efficacy). She didn't experience any nausea, just some loose stools—actually, it was quite a bout of diarrhea—on the first day of receiving the treatment. Her hair hasn't fallen out yet (though, for the time being, I am still remaining cautious)... 🙂)
Three days after her cycle ended, some sores started appearing on her lower lip—despite her being incredibly diligent about brushing and rinsing with chamomile and sage... Fortunately, they didn't migrate deeper into her mouth, and they seem to be receding already. She’s been applying Gelclair and an alcohol-free propolis, which is basically her go-to remedy for everything, even if no one actually suggested it for this specific situation... 🙂)

We might be able to call this a success if the therapy wraps up with nothing more than these side effects... though I find myself feeling rather skeptical... There are whispers that the body begins to wear significantly thin after the third cycle? While I realize everything is highly subjective, I would be truly grateful if someone could share their own experiences...

Absolutely screwed... Has she been silent lately...? Does anyone have any word on how she’s holding up? I'm keeping my fingers crossed... I really hope she made it through her final round of chemotherapy...

It appears that your mother is handling the treatment quite well... In our case, her hair began to thin significantly before the second round of chemo, and by the time she finished that second session, much of it had already fallen out. Regarding that general sense of physical exhaustion, she only started feeling it once the second round was complete. I’ll admit, I was terrified about whether she would be able to endure the whole process or not, especially after reading so many posts where people claim everything takes a turn for the worse after the third round... but, as you have already realized, everyone reacts to this in their own highly individual way... and I suppose you will eventually find out exactly how she responds...

To be honest, my mother never actually dealt with any nausea, which was perhaps the most unsettling part for all of us... we were constantly on edge because she was undergoing chemo during the summer months, and the endless travel required made everything feel so much more precarious... 311 miles Those hospital trips in a car without air conditioning... she never once mentioned feeling weak. Honestly, you could just see it on her face when things were taking a turn for the worse—that sudden, telltale flushing would appear, and that was my cue to insist she lie down and get some rest... As for her bowel movements, we are still dealing with her constipation to this very day. She never had any diarrhea.

Propolis really is such a versatile remedy for so many different things, and honestly, I’m just glad to hear that it actually worked for you...

She hasn't checked in for quite some time...😢 I truly hope everything turns out to be alright...

Hang in there, everyone... stay strong in the fight...

Betty Sanchez82 said:Basically, I haven't posted for a while because I honestly didn't know what smart thing to say. My dad, who is dealing with gastric adenocarcinoma with liver metastases, just finished his first round of chemo. It lasted 6 days. He received Cisplatina and 5 doses of 5Fu (22-hour drip, so basically 5 bags in a row). They sent him home now, and we're looking at a 4-week recovery period. On the first day, he felt a bit weak, which he chalked up to being stuck in bed for 6 days straight. Normally, he’s a very active guy. The only issue right now is this tightness when he swallows, almost like a sore throat. His doctor gave him some kind of gel for it today. While searching online, I stumbled upon a site about mushroom-based health supplements. I reached out to them and they seem okay, but the price tag is a bit steep. For a 60-day course, you're looking at roughly $5667. Money isn't really an issue if it actually works. I'm curious to hear your thoughts—has anyone here had experience with this stuff? Honestly, there was a moment where I just felt like buying everything in sight. I took Angela Wright's advice and bought some Native propolis; he's drinking plenty of nettle tea, I'm pushing fresh fruits and veggies, and of course, beet juice. Does anyone else have tips on how to boost blood counts and prep for the next chemo cycle?? Sending so much strength and respect to all of you for your courage and fight. Reading these posts really makes me feel like I'm not alone in this.

That "mushroom health" thing: it's called Miko San. I went to see them last month and ordered a 10-day dose for about $1167. The guy there tells you that you need to spend money for at least 60 days, but really it should be 100! I show up and what do I see? 16 liters of liquid in glass bottles weighing 100 pounds. And I don't even have a car! Since I couldn't haul that much, I just took half (for 5 days) and paid for a full box of 12 bottles. Dad started taking it (you're supposed to drink nearly a liter a day following a specific schedule). But since his throat was burned from the radiation, it was stinging him—honestly, almost everything stung—and it was hard to take on an empty stomach. By the second day, his throat was so swollen he couldn't even swallow a pill or a sip of water, let alone a whole liter of this stuff a day. So, his "fasting cure" effectively started right then and there. We ended up opening two bottles and calling it quits.
If you decide to go for it and it doesn't end up working for him (I don't know yet, since things are still changing with him), I'll gladly give you whatever I have left (10 bottles).
I've scheduled an appointment with a private oncologist for next week, but I'm also thinking about contacting the oncologists over at Quest Diagnostics. I'm planning to get a brain MRI and tumor markers done there, since those jerks who were supposed to do it before completely dropped the ball.
I spent the entire night dealing with him. He keeps calling me and banging on the walls because he forgets where he put things. He can't even handle his cell phone; he thinks it's a remote control. He's constantly demanding pain meds. He's talking nonsense. This morning, he thought he was in the hospital and started yelling at me for giving him pills "for no reason" when I hadn't even checked his temperature. It's just terrible; this confusion started happening on Saturday.

Hang in there, ladies. Just stay strong. 🙂

I know exactly how heavy this all feels. I’m dealing with the same damn struggle myself. There are still a few people who haven't checked in for a while, and I’m just sitting here hoping everything turned out alright with them. dustyranger11, you mentioned earlier that you just need to vent, even if it feels like nobody’s actually listening. Well, believe me, we are reading. 🙂

Cancer is a real bastard.👎

The sleepless nights aren't quite as much of a battle at our place anymore, mostly because Mom is just too exhausted and ends up sleeping through most of it, which honestly makes things a little easier on my end. My mornings usually start with a bit of a shock to the system, but I manage. Today she had some donuts and Prosura for breakfast—she eventually got the Megostat too—because that's what she craves. I just give her whatever she asks for. Most of the time, she can barely even hold a donut in her hand; she’ll take a tiny bite, stop chewing, and then just start rubbing the donut against her hair. You can't really tell her to stop doing it anymore; you just have to gently move her hand away. It’s the same deal with technology, too—she can't tell the difference between a phone and a remote control anymore. I keep the volume low on the phones and just keep the remotes out of reach. I'll set something on the TV for her to watch, and she'll just stare at it. At this point, I think just having the TV on is enough for her; she isn't really following the plot or anything.

Melissa Kim45 said:Hang in there, everyone. Seriously. 🙂

I know how much this sucks. Honestly, I’m struggling too. There are still people who haven't checked in for a while, and I just hope they're doing okay. dustyranger11, you mentioned earlier that you just need to vent even if nobody's reading. Well, newsflash: we *are* reading. 🙂

Cancer is a damn nightmare.👎

The sleepless nights aren't as much of an issue here anymore because Mom is just too weak—she mostly sleeps through the night, which actually makes things a little easier on my end. My mornings usually start with a massive reality check, but whatever. Today she had some donuts and Prosura (she got the Megostat later, too); she really craves those things. I give her whatever she asks for. Most of the time, though, she can barely hold the donut in her hand; she’ll take a tiny bite, stop, and then just start rubbing the donut against her hair. If I tell her to stop, she won't listen—you basically have to physically move her hand away. She’s also reached that stage where she can't tell a phone apart from a remote control. I keep the volume low on the phones, and I just don't let her touch the remote. I'll set something on for her to watch, and she'll just stare. At this point, I think as long as the TV is on, she’s fine; she can't really follow what's happening anyway.

🙂

It’s a lot like what my dad is going through. Today (I was at work, and I finally got my car fixed after that wreck) he was actually almost acting normal. He tried to get behind the wheel of the car; I barely managed to stop him. He remembers everything—every single word the mechanic told him. It really cut deep when he called me by my mom's name, and the kicker is, he knows he did it. He told me it felt weird calling me that, but it's probably because I'll be joining her soon (she passed away from a heart attack back in '95). I told him, "As long as you're breathing, there's hope." One day his throat is raw, the next it's totally fine, and he gets these fever spikes. I told him that tomorrow, once the sun goes down, we're going for a walk, even if I have to lead him around on a leash. I saw him today from the bus (I recognize the man; he's the one with the feeding tube and that large syringe used for meals). He was pouring beer into the tube. I couldn't believe my eyes when I saw that.
I asked Dad if he wanted a beer, and he said no—he'll let me know when he wants one or maybe some wine. I'll fulfill any wish he has.

Nancy Hernandez43 said:As you pointed out yourself, there is NO GIVING UP. Despite whatever prognosis they throw at you, life itself and the will to live are what truly matter!

I’m assuming if he's feeling pain—and specifically if that pain is radiating outward from where the nurse gave him the injection—it might be nerve-related? That would explain why it's spreading. I suspect some of the ladies here (Angela Wright and slyseal28) might have more specific insight to offer, but in any case: try to find some peace and keep your cool. This fight requires more than just courage; it demands a steady spirit too.

Hang in there!

Good evening! Thanks for getting back to me. We were at the hospital today, and they told us it’s most likely a nerve issue. Now we’re just holding onto hope—they say hope dies last, right?
We keep moving forward!

Linda Wright5 said:She’s 39, and yesterday marked exactly one year since her surgery. She was diagnosed with Stage IIIc ovarian cancer. We were recently told that her specific type is one of the most aggressive ones out there—I can't quite recall the technical term, something about the cellular structure—so even after cycling through four different types of chemotherapy, she hasn't hit remission; instead, we've just been watching the progression. Honestly, the doctors have called her a medical miracle for how much time she's gained. Back in November, they gave her maybe one to four months, yet here we are, having doubled that most optimistic forecast. She has been such an incredible fighter this entire time, and I am just so incredibly proud of her!

It is absolutely vital that she remains a fighter, because those clinical prognoses? They are nothing more than cold, hard statistics.
I'm keeping my fingers crossed that she stays just as strong. 👍

Betty Sanchez82 said:To be honest, I went quiet for a while because I genuinely didn't know how to put my thoughts into words. My dad—who is fighting stomach adenocarcinoma with liver metastases—just finished his first round of chemo. It was a grueling six days. He had to take Cisplatina along with five doses of 5Fu (that’s a 22-hour drip, five bottles in a row). They finally let him come home, and now he's facing a four-week recovery period. On the first day, he felt pretty wiped out, though he chalked it up to being stuck in bed for six days straight. Usually, he’s an incredibly active guy. His main complaint right now is this tightness when he swallows, almost like a sore throat. His doctor prescribed some kind of gel for it today. While searching online, I stumbled upon a site focusing on fungal-based health supplements. I reached out to them and they seem legitimate enough, but man, the price tag is steep. For a 60-day course of treatment, you're looking at roughly $5667. Honestly, if it actually works, the money isn't the issue. I’m curious to hear what you all think. Has anyone here actually tried this? There was a moment where I felt like just buying everything in sight to help him. I took a page out of Angela Wright's book and bought some Native propolis; he’s also drinking plenty of nettle tea, eating tons of fresh fruits and veggies, and of course, sipping on beet juice. Does anyone else have tips on boosting blood counts or prepping the body for the next chemo cycle? Sending so much strength to everyone here. Reading these posts really makes me feel less alone in this fight.

My dad is dealing with colon cancer that has spread to the liver.
I ended up using Biobran to boost his immune system, and I have to say, it’s been quite helpful. I’d also recommend Aloe Vera. My dad drinks nettle tea too, though honestly, you might get more out of it if you just lightly sauté the nettles and toss them in a salad with some seasoning—it keeps the nutrients intact better than boiling it. Keeping my fingers crossed for you.👍

cosmicviper76 said:Good evening. Thank you for responding... we were at the General Hospital today, and they told us it’s most likely a nerve issue, so now we are just holding onto the hope that all is not lost...
we keep moving forward!

I assumed it was a nerve problem because about twenty days ago I had a bicycle accident where I injured a nerve during the fall, and my arm still aches and feels numb, with the pain radiating down the entire length of the limb.

That is exactly right—we move forward, with the same strength and resolve... hope is there to guide us through it all... hang in there.

Nancy Hernandez43 said:I assumed it was nerve-related because about 20 days ago I had a bicycle accident where I injured a nerve from a fall, and my arm still hurts and feels numb—the pain just radiates all the way down my arm.

That’s exactly right—we keep pushing forward with the same grit and determination; hope is the compass that keeps us on track! Hang in there.

Thanks as well for those kind wishes, Nancy Hernandez43—it seems like surrender is simply not in our vocabulary.
Big kissesssssssssssss

Nancy Hernandez43 said:I assumed it was a nerve issue because about 20 days ago I had a bicycle accident where I injured a nerve from a fall, and my arm still hurts and feels numb—the pain just radiates all the way down the entire arm.

That’s exactly right—we keep moving forward with the same grit and determination; hope is the compass that keeps us on track! Hang in there.

I really hope you're taking something for that arm; Advil might be a good call for that kind of thing.
How is your mother doing?

dustyranger11 said:🙂

It’s remarkably similar to what my father is going through. Today—I was actually at work getting my totaled car repaired—he was almost acting completely normal. He even tried to get behind the wheel of a car; I barely managed to stop him. The thing is, he remembers everything. Everything the mechanic tells him sticks. It really stung, though, when he called me by my mother's name, and the kicker is that he knows he did it. He told me how strange it felt to call me that, adding that it's probably because I'll be joining her soon (she passed away from a heart attack back in '95). I just tell him, "As long as you're still breathing, there's hope." One day his throat is raw, the next it's fine, and then he'll spike a fever. I told him that once the sun goes down tomorrow, we're going for a walk, even if I have to lead him around on a leash. I actually spotted him today from the bus (I recognize him; he has a feeding tube and that large syringe they use to administer nutrition). I couldn't believe my eyes when I saw him pouring beer straight into the tube.
When I asked Dad if he wanted a beer, he said no, he'd let me know when he's in the mood, or maybe some wine. Honestly, I'd fulfill any wish he had.

I do the exact same thing with my dad—telling him to eat whatever he's craving—and he just snaps "NO!" at me. Does that hinder his recovery? I don't know, but it just breaks my heart. I love him so much!!!!!!!!!!!!!!!!!!!!!!!!!!!
Best regards

Our association, alongside several other American patient advocacy groups, has officially launched a petition demanding access to top-tier treatment for chronic, severe, and rare diseases. Specifically, we are pushing for these treatments to be covered by Medicare when recommended by a specialist. We kicked off the signing process yesterday at 6:30 PM at our booth during the "Summer evening at Central Park" fashion and music festival. We’ll be continuing today starting at 6:00 PM, and then from Thursday, July 17th through Saturday, July 19th, 2008, we will be stationed at the music pavilion in Central Park from 6:00 PM onwards.

For those of you who can't make it down to Washington, D.C., don't worry—we can send the petition form directly to you via email so you can circulate it among your own circles. Once signed, just mail the hard copies back to the association's mailing address.

Let's see if we can actually harness the power of the internet to make some noise!

slyseal28 said:Our association, along with several other patient advocacy groups, has officially launched a petition demanding top-tier treatment for chronic, severe, and rare diseases—specifically when prescribed by specialists—to be fully covered by Medicare. We kicked off the signing process yesterday at 6:30 PM at our booth during the "Summer evening at Central Park" music and fashion festival. We’ll be out there again today starting at 6:00 PM, and then we'll be stationed at the park's music pavilion from Thursday, July 17th through Saturday, July 19th, also starting at 6:00 PM.

For those of you who can't make it down to Washington, D.C., don't worry—we can send the petition form directly to your email so you can circulate it among your networks. Once signed, just mail the physical copies back to the association's address.

Let's harness the power of the internet and make some noise!

I'll definitely be there. 🙂 Best regards,

dustyranger11 said:It’s almost exactly like my dad. Today—I was actually at work getting my car fixed after a fender bender—he was surprisingly lucid, almost normal. He actually tried to drive the car; I barely managed to stop him. He remembers everything, too, including whatever his mechanic told him. What really cut deep, though, was when he called me by my mother's name, and he was fully aware he had done it. He even remarked on how strange it was to call me that, suggesting it’s probably because he’ll be joining her soon (she passed away from a heart attack back in '95). I just tell him, "As long as you're still here, there's hope." One day his throat is raw, the next it's fine, and then he’ll run a fever. I told him that once the sun goes down tomorrow, we're going for a walk, even if I have to practically lead him by the hand. I saw him today from the bus (I recognize him; he uses a feeding tube and that large syringe they use to feed him) and he was pouring beer through the tube. I honestly couldn't believe my eyes when I saw that.
I asked Dad if he wanted a beer, and he said no, he'd let me know when he's in the mood, or maybe some wine. I'd fulfill any wish he had.

Oh, I know that feeling all too well... my mom was constantly trying to escape the hospital... I actually had to lie to her and say I had a flat tire or something just to get her home.
She started losing her memory due to the shock as well... for example, someone would come over to visit, she'd chat with them... then the guests would leave, and she'd turn to me and ask when they were coming and why they were running late.😢
It’s wonderful that your dad still has that fighting spirit. Honestly, I drove my mom everywhere, even when she fought me on it... I forced her, and I don't regret it for a second.

cosmicviper76 said:I hope you're taking something for that arm; maybe some coffee would help...
How is your mother doing?

I appreciate the concern, though I'm not taking anything specifically for my arm. It’s been twenty days now, and the pain only really flares up when I put too much weight on it, like when I lean against it🤣.

My mother is doing okay. She is truly living proof that one shouldn't take medical prognoses as gospel. Physically, she looks quite healthy from the outside, but mentally, she is still struggling deeply... She often seems lost in her own thoughts; despite being naturally stubborn, she has become almost childlike lately. She’ll wander into my room just to ask, "Can I go out without my hair? What will people think?" Her hair has fully grown back after chemo, and she’s even had it trimmed twice, yet it seems she still sees that exhausted version of herself staring back from the mirror. Thank you for asking, but I believe things are moving in the right direction, and hopefully, by her next check-up on October 16th, she will be feeling even better.

Is your father's arm feeling any better?

Stay strong and keep your chin up...

slyseal28 said:Our organization, along with several other American patient advocacy groups, has officially launched a petition demanding access to top-tier treatment for chronic, severe, and rare diseases based on specialist recommendations, fully covered by Medicare. Signing began yesterday at 6:30 PM at our booth during the "Summer evening at Central Park" fashion and music festival. We will continue today starting at 6:00 PM, and from Thursday, July 17th through Saturday, July 19th, we will be stationed at the music pavilion in Central Park from 6:00 PM onwards.

For those unable to make it down to Washington, D.C., we can send you the petition form via email so you may distribute it to others... once signed, the forms can be mailed back to the association's address.

Let us attempt to harness the collective power of the internet...

I will certainly make it out to sign the petition this Thursday...

Nancy Hernandez43 said:I appreciate the concern, but I’m not taking anything by mouth. It’s been 20 days now, and the only time it hurts is when I put some pressure on it (meaning, when I lean against it🤣).

Mom is doing okay. She’s actually a perfect example of why you shouldn't take medical prognoses as gospel. Physically and overall, she looks great from the outside, but mentally and internally, she’s still quite fragile. She drifts off frequently; even though she’s naturally incredibly stubborn, right now she’s acting like a little kid. She’ll wander into my room and ask, "Can I go outside without my hair? What will people think?" Her hair has fully grown back after chemo—she’s even had it trimmed twice already—but it’s as if she still sees her old, exhausted self staring back from the mirror. Thanks for asking, but it seems things are heading in the right direction, and I think she’ll be feeling even better by her next check-up on October 16th.

Is your dad's arm doing any better?

Hang in there and stay strong!

I am so happy to hear about your mom; we're all crossing our fingers for that follow-up appointment.👍
My dad also has those moments where he acts like a child, despite being 70 years old.
He constantly asks for permission for this or that, whereas he used to make every single decision himself. Now, when we go to the doctor, he tells me I have to act as his lawyer.
His arm is actually starting to improve somewhat.
I bought him an air conditioner today and set it to a gentle 74 degrees, and he absolutely loves it... he was actually cheerful for once, which makes me so happy.
Pusaaaaaaaaa, Nancy Hernandez43, and hang in there—don't give up!
p.s. I’ll be signing that petition too.