Support resources for families dealing with cancer and other serious illnesses

The CT is all done, so I guess we just have to wait and check back in a week 👍

So, on Friday, my L1.5 levels were sitting at 95 hgb and 250 platelets, and they gave me some Neupogen. Fast forward three days later—today—and now my L0.5 hgb is down to 81 and platelets are at 60????

wiredcanyon39 said:On Friday, the labs showed hemoglobin at 9.5 and platelets at 250, then they started Neupogen. Now, just three days later, the levels have tanked to hemoglobin 8.1 and platelets at 60????

Look, Neupogen is specifically used to boost white blood cell counts. Hemoglobin and platelets aren't fixed by that; they only go up through transfusions, and doctors usually only do that when there's a massive drop because of the risks involved, like severe allergic reactions. Maybe switching to Neupogen would yield better results. Sure, it can have nasty side effects like bone pain, but it actually works. Just ask around. On a different note, a friend of mine dealing with Hodgkin's was trying to boost her own blood counts using a regimen of steak, garlic, and blueberry juice.
edit I'll shoot you a PM once I get to my computer and have a decent internet connection. I'm stuck scrolling on my Android right now.

Angela Wright said:Neurlastin is mainly used to boost white blood cell counts. As for hemoglobin and platelets, those usually only get bumped up through a transfusion, and even then, only if the numbers drop off a cliff—plus, those come with their own set of risks, like nasty allergic reactions. Maybe Neupogen would be a better bet here? I mean, yeah, it can have some pretty rough side effects, like bone pain, but it actually works. You should ask about it. Honestly, a friend of mine dealing with Hodgkin's was trying to boost her own blood counts using things like steak, garlic, and blueberry juice.
edit I'll shoot you a PM once I find my computer with decent internet access. I'm just scrambling on my Android right now.

Thanks,
The doctor thinks everything looks fine and expects the white blood cell count to climb in a few days. Regarding the iron levels, she mentioned they should bounce back quickly since the patient is young. I guess I'm not too worried about the platelets; during the first round of therapy, they dropped all the way down to 27, but then jumped up to 300 within a couple of days. Right now, they're sitting at a "solid" 60.

Hey everyone! 🙂
I have a quick question—or maybe a plea, depending on how you look at it. Basically, my dad is eating through a gastrostomy tube because he can't swallow normally, and we're having a massive headache trying to get the syringes we need to administer his food. His doctor suggested reaching out to some kind of association to help source them, but she wasn't specific about which one. If anyone here has dealt with this before, please help me out—any names, phone numbers, or leads would be amazing. It’s honestly wild to me that even though these syringes are available in pharmacies and my dad is technically entitled to 30 of them every month, you just can't get them via prescription. Just another classic example of how the American healthcare system works... but hey, I'll save that rant for another time.

Thanks, guys! 🙂

Elizabeth Mendoza10 said:Hey everyone! 🙂
I have a question—or maybe a plea, depending on how you look at it. Basically, my dad is being fed through a gastrostomy tube because he can't swallow normally, and we are running into a massive headache trying to get the syringes used to inject the formula. His doctor suggested reaching out to some kind of association to help source them, but she wasn't specific about which one or how to actually go about getting them. If anyone here has dealt with this before, please, I need help. Does anyone know the name of an organization, a phone number, or anything useful? On a side note, I find it absolutely ridiculous that while these syringes are sitting right there on pharmacy shelves, and my dad is technically entitled to 30 of them every month, you still can't just get them via a prescription. It’s just another classic example of how "efficient" the American healthcare system can be. But hey, I'll save that rant for another time.

Thanks, everyone. 🙂

Maybe check with a hospice support group. You could try picking up one of those sterilizers meant for baby bottles. There are versions designed specifically for the microwave. In my opinion, that’s probably your best bet for something that's both practical and budget-friendly in the long run.

Angela Wright said:Anything is possible. But—let’s not get ahead of ourselves—maybe just wait until the doctor weighs in on the next steps of the treatment plan.

Regarding Myko Sana—sure, there are some published studies and evidence regarding efficacy, but honestly? It feels like a massive cash grab on their part. They seem to be looking for enough funds to cover those highly sophisticated cytostatics and smart drugs that undergo much more expensive, extensive clinical trials before hitting the market. So, given the price tag they're asking, there isn't really any justification for it.
The foundation of those mushrooms is Beta-glucan, which you can get in capsule form for a much cheaper price.

So, the doctor is recommending six rounds of Taxol and Herceptin (due to lung metastases). Starting chemo on the 13th.
We've stepped back from Myko Sana for now—after receiving the treatment recommendations, I felt I needed more specific info, but I never actually got an answer (even though they told me to just email them for more details).
As for Beta-glucan, we're passing on that for now too; the doctor suggested it shouldn't be used during chemo, but rather after?
I feel like such a nuisance—constantly questioning, searching for advice, looking for recommendations, only to run into conflicting opinions. Since I tend to be quite suggestible and just want what's best, I suppose I'm open to everything.
Today, I picked up some Aloe Arborescens syrup and Sesame oil (from a Bio Terra shop).
Now I'd love to have some Aloe Arborescens to make my own preparation (so, if anyone is from the Mediterranean and has a plant older than three years they'd be willing to sell—I'm interested).
And any extra advice is, of course, welcome.😉

Since I'm typing anyway, my husband is struggling too. He's been dealing with prostate issues for a few years now; his PSA test is consistently above the normal range. It dips here and there—but never below the threshold—and then after three months, it spikes again. It's just this constant cycle. The diagnosis is always "chronic inflammation," and they basically tell him, "Well, at your age, everyone has prostate issues; we'll see you in a few months for another PSA test." Since the PSA never stays in the clear, he gets prescribed antibiotics that don't seem to help at all. About a year and a half ago, he had a biopsy that showed everything was fine. But after that biopsy, the PSA levels just kept climbing higher and higher, leading to more rounds of antibiotics that still didn't work. The urologist sent him for another biopsy, but the old man managed to dodge it—he wasn't feeling up to it, so he delayed things (don't ask). But it's finally been settled: he's going back for the biopsy on October 9th.
If anyone has experience with this, please share.😉

Lisa Ross81, listen, taking antioxidants while you're actually undergoing chemo is a terrible idea because they basically act like magnets for the toxins meant to wipe out those malignant cells. It’s fine if you want to use them to boost your system during the breaks between cycles, but since Beta-glucan is such a potent antioxidant, you really need to be careful about how you time it.
As for the prostate situation, I don't have a ton of direct experience there, but I know Dr. Trnski over at Vinogradski is an absolute expert in his field. You should head over to him for a second opinion or even have him perform the biopsy himself. My late uncle lived to be 95 thanks to his care from him, and that was 20 years after his initial prostate diagnosis.

Angela Wright said:Maybe try reaching out to some hospice volunteer groups? You could also look into getting one of those sterilizers for baby bottles—the kind you just pop in the microwave. Honestly, I think that’s probably the most practical and cheapest long-term option.

Thanks, we'll give that a shot! 🙂

Today was Dad's last round of radiation 🙂. Fingers crossed that once they run the scans, everything looks perfectly targeted—hopefully he won't need any extra sessions and can finally head home. He’s feeling pretty down being stuck in the hospital—just wants to be back in his own space—and honestly, I think being around Mom and my sister would do him a world of good.

😢 It’s bad. Really bad...
A nurse at the nursing home told us to bring some clothes that
she can put on her when...
I saw Mom today... and honestly, no matter how much I mentally prepared myself—oh god...
Her mouth was open and her breathing sounded like this heavy, labored rattling... her eyes were
closed.
I went over to her and just stroked her hand... she was cold, and she didn't open her eyes... so I
gently ran my hand through her hair and whispered, "Mom, I love you." All I saw were tears slipping down her face.
I cried harder than I ever have in my life.
I kissed her, but her forehead felt cold too, almost like dew... and I just kept talking to her...
The doctor there said her heart is failing now (she's on an IV with all those heavy painkillers since she isn't eating or drinking anything), and they aren't sure if she'll make it through the night, or if she might pass away as early as tomorrow...
I can't even put into words what I'm feeling or how chaotic my head is right now... my sweet mom... my precious girl...
I just can't wrap my head around it, especially since it's only been a month and a half since the diagnosis. I know this damn disease didn't just appear overnight, but still...
😢
I am just so heartbroken...

Linda Morales66 said:Well, I figured it was time for me to check in after a while too...
I gave birth to my son on August 16th. :-)
My mom just isn't herself... we took photos of the baby and sent them to her; she flipped through them three times and
held onto them close... but after that—it’s like she just gave up. She refused to eat, became so weak that she looks like skin hanging off a frame... her hands shake... once they told her they’d have to use a feeding tube if she didn't start eating, she promised she would. She only ate for two days, and even then, just a few spoonfuls of something soft, and then it went right back to how it was. Now she won't eat again, won't drink anything... they've put her on an IV. She doesn't talk at all, barely waves a hand or mumbles something... she just sleeps the whole time.
As for chemo or physical therapy, we can only dream about that; she’s far too weak, so none of that has even been started. She just lies there in silence...😢

Could you tell me how old your mother is? A loss of appetite can often be triggered by pain medications, especially Tramal. My mom scaled back on the Tramal a bit; last night she just took one Voltaren and nothing else, and she ended up eating all day long, so now I’m actually getting worried because her appetite has come back. She’s starting to gain weight again, which honestly concerns me too. She eats whatever she can get her hands on and has even started eating meat—chicken thighs and veal—and she talks about food constantly; she even had deli meats and ham, which she never used to do (this woman never even touched a cigarette in her life, let alone a drink, except maybe at weddings and stuff). She lived such an ascetic life, and she certainly didn't deserve what happened to her, whereas I, for instance, have spent my whole life drinking and smoking, barely move at all, and my blood pressure averages around 185/110. At my last weigh-in, I was 149.5 kg, and now I'm at 133 (and it's not just fat; I have a heavy frame and plenty of muscle mass, so nobody even believes me when I tell them my weight). My knees have started acting up, but I'm walking normally for now and I'm not taking any painkillers (except for the occasional Normabel for emotional distress—because of my mother) and so, life goes on. Right now, I'm at the coast mostly because of my mom—the ocean air does her good, though the weather is being a bit difficult for us... we decided to head to the beach even if it's overcast (since we're going to get wet swimming anyway), but those UVB rays are important even without direct sunlight—Vitamin D. From what I've read, 2,000 IU a day is decent, but thirty minutes in the sun provides 10,000 IU—without Vitamin D, there isn't much hope for oncology patients... the sun penetrates deep into the body, not to mention the benefits of the seawater (or even freshwater). Summer is almost over, but we need to make the most of these last rays... anyway, I don't dare say that Mom is doing better... even though it seems like she is, everything could go south tomorrow... You have to push for what you believe in, and whatever happens, happens. Our goal is to shrink the tumor naturally if possible; if it doesn't work, it doesn't work. Then we'll have to face the alternative. Sending my best to everyone, and I wish for all of you to be rid of these nasty diseases that rob people of their lives (and especially their families) DEATH TO DISEASE, LIFE TO HEALTH!!!!!!

Hey everyone,

I haven't been posting much lately, mostly because I just haven't been in the headspace for it. On the 24th of last month, the best man I ever knew passed away. My dad finally lost his 14-month fight with kidney cancer. Even though we kept hoping things might turn around—despite what the doctors told us from day one about how bad it looked—it just wasn't meant to be.

To anyone else out there fighting this nasty disease, or helping someone else through it, I really hope you have better luck and more success. I guess, maybe, God can help guide you through it.

If I can offer any advice based on what we went through, feel free to reach out.

Best,

Austin Moore, your blood pressure is at hospitalization levels! You’ve been so consumed by worrying about your mom that you've completely neglected your own health. With numbers like these, you're basically inviting a stroke at any moment, and you won't be around long enough to see her recover. I’m calling on your sense of maturity and responsibility here—go get medical help immediately!

So, even though they said the CT results were ready, the doctor just saw me in the outpatient clinic and told me the lymphoma has shrunk significantly—like, he’s saying we’re looking at almost complete remission! 😁 Small hiccup, though... my hemoglobin is down to 7.5, so we’re waiting on more blood work, but honestly, I'll take it if the tumor actually shrank. 😁

Angela Wright said:Lisa Ross81, antioxidants aren't really a good idea while you're actually undergoing chemo. They basically just bind to the toxins that are supposed to be killing off the cancer cells. It might be okay to use them between cycles to help bounce back, though. Since Beta-glucan is a pretty potent antioxidant, I'd probably stick to that if anything.
As for prostate issues, I don't have a ton of experience there, but I know Dr. Trnski over at Vinogradski is an absolute expert. You should go see him for a second opinion or even have him handle the biopsy. My late uncle lived to be 95 thanks to him, and that was 20 years after his prostate diagnosis.

My dad is scheduled for his second round of chemo tomorrow. Right now, he’s mostly sticking to Aloe Arborescens, honey mixed with some herbs, juices made from carrots, beets, and celery, green tea, and low-fat cottage cheese with flaxseed oil.
Is there anything in that list he should probably avoid while he's getting chemo? He's dealing with microcellular lung cancer.

Linda Morales66 said:😢 It’s bad. Really bad...
A nurse at the care facility told us to bring some clothes that
she can wear when...
I saw Mom today... and no matter how much I prepared myself—god...
Her mouth was open and her breathing sounded heavy, almost like gasping... her eyes were
closed.
I went over to her and stroked her hand... she was cold, and she didn't open her eyes. So I
just brushed her hair back and whispered, "Mom, I love you." A single tear just rolled down her face.
I cried harder than I ever have in my life.
I kissed her forehead; it felt cold, almost like dew... and I just kept talking to her.
The doctor there said her heart is failing now (she's on an IV drip along with all those heavy painkillers since she isn't eating or drinking anything), and the question is whether she'll make it through the night. She might be gone by tomorrow.
I can't even begin to describe what's going through my head right now... my sweet mother... my dear Mom...
And I just can't wrap my head around it. It's only been a month and a half since the diagnosis... I know this damn disease hasn't just appeared out of thin air, but still...
😢
I am just so heartbroken. .....................

Last night, around 10 PM—barely a month and a half after we got the full diagnosis—my mom passed away... just a few hours after my last visit and saying my goodbyes.

Linda Morales66 said:Last night, around 10 PM—about a month and a half after getting the official diagnosis—my mom passed away... it was just a few hours after I went to see her one last time to say goodbye..

I am so incredibly sorry, sending you my deepest condolences 😢.

Linda Morales66 said:Last night, around 10 PM—barely a month and a half after getting the official diagnosis—my mom passed away... just a few hours after I went to see her one last time to say goodbye.

Honestly, I am so incredibly sorry for your loss. I actually teared up reading this. I’ve been following your fight closely. Hang in there—stay strong, especially for the little one.🙂

I haven't posted much here, and honestly, I don't even know what to say right now. My mom had a CT today because her oncologist ordered it, and now we're just waiting on the follow-up to figure out our next move.
Physically, she's doing relatively okay; if she could put on a few pounds, that wouldn't be a bad thing. Mentally... I don't know. She's acting brave, but I can tell she's constantly overthinking everything.
But hey, she's doing alright for now, and that's the only thing that matters. We'll deal with the rest as it comes.

Thanks to everyone in this thread for selflessly offering help and comfort, and a huge thanks to Angela Wright. Her posts have helped me more times than I can count.

@ Raymond Jackson38, please accept my deepest condolences as well.😢

Platelets are at 20 and hemoglobin is down to 7. They already gave two units of platelets and two units of blood... I guess, what should we even be looking to do next?