Support resources for families dealing with cancer and other serious illnesses

Congrats, Lisa White54, keep it up!!! Wishing nothing but the best for you and your husband..

wiredotter75 said:Congrats, Lisa White54! Keep crushing it. Sending nothing but the best vibes to you and your husband..

My husband was basically written off by doctors... but look, in medicine, two plus two doesn't always equal four. I'm rooting for you to pull through, and for all the other fighters out there too. I mean that from the bottom of my heart.

My dad’s traveling from San Diego to Washington, D.C. tomorrow morning to head to the oncology ward for his first radiation session. He’s trying his best to eat and do some leg and arm exercises, but he’s been stuck in bed for five days now and can barely walk—his motor skills are pretty shot. He was at the hospital a week ago for his treatment planning and felt absolutely terrible; he’s recovered slightly since then, but they told him if he can't even sit up, they won't proceed with the radiation. I'm honestly terrified that once they start, they'll just leave him there because he can barely handle the trip from San Diego to D.C., even with an ambulance. Or worse, will he have to make that trek every single day? He's under Dr. Miller's care, but I'm wondering if the doctor actually evaluates how the whole treatment flow is going or what...

Victor, fingers crossed that some doors swing open for you soon so you can get back in the fight and win...

On another note, I need some advice regarding a family member. We're dealing with prostate cancer in a man in his 70s. The surgery is done, but it looks like there's widespread metastasis. Who are the best oncologists in Washington, D.C. for this kind of diagnosis that we could see privately on short notice?

Based on actual medical experience, what are the odds that carboplatin chemo actually works to shrink a large-cell lung adenocarcinoma?

Hey everyone, 🙂 I know this is heavy territory. This is my first time actually posting here, though I’ve been lurking and reading everything lately... I have a question, so if anyone out there actually knows their stuff, please jump in. 🙂
So, long story short, my uncle has been fighting lung cancer for a while now. Basically, after four rounds of chemo, right when he was supposed to start the fifth cycle, the doctors pulled the plug. They decided his health had declined too much to even attempt another round. He was in pretty bad shape back then, and they basically sent him home with the implication that it was just "it"—meaning, they can't do anything else for him. I should probably mention—and I haven't brought this up until now—that the cancer already spread to his kidneys and a small part of his brain. Anyway, after the initial wave of depression and total despair hit us, we decided to flip the script. We're choosing to fight 🙂 no matter what happens... through to the very end.
It’s been about two weeks since that decision. My uncle’s appetite has actually come back, but he can't eat on his own; we have to feed him, mostly blending everything into a mushy consistency. He’s also having major balance issues, so he needs help just to walk. Most of the time he’s stuck in bed, only getting up for bathroom breaks or to sit up for a meal... he spends at least 90% of his time lying down. For the last few days, he’s been complaining about pain in his back and lower glute area. Honestly, I figure most of it comes from being horizontal all day 🤷 because a few years back, I spent about a month stuck in bed myself, and let me tell you, I know exactly what that kind of soreness feels like. 🙄 Usually, we’d give him a massage whenever he asked, and he’d say he felt a little better afterward.
But here’s the kicker after this whole saga... yesterday, my mom went to see his doctor to pick up some prescriptions for the meds he's taking. They chatted for a bit, and when my mom mentioned the massages, the doctor shot us down immediately. She said we shouldn't be massaging him because of the metastases. 😕 And that was it. No further explanation.
So, what I'm wondering—if anyone here understands this, how and why exactly could massage be bad for metastases? It's not that I don't trust her, it's just the first time I've ever heard that, and I'm genuinely curious about the logic behind it.
Thanks 🙂 and sorry for the massive wall of text...

While this won't negatively impact metastases, we have to keep in mind that patients dealing with extensive metastatic disease are at a higher risk for developing venous blood clots.
These clots can potentially lead to deep vein thrombosis—which usually shows up as leg swelling and pain—but there is a real danger here: if you attempt a massage, those tiny clots could dislodge, traveling through the bloodstream straight to the lungs where they might cause a life-threatening pulmonary embolism.

I wish the doctors would actually give us some real answers!!!
here I am reposting my previous update
Just giving you guys a little more info... My dad (lung and bronchial cancer with metastasis in his kidneys and brain—he just had Gamma Knife surgery) started his first round of chemo in Rhode Island using a platinum-based protocol (not entirely sure how the specifics work, but I'm trying to wrap my head around it). He was puking for days straight. We had to rush him to the ER for IV fluids; Reglan and Torcan-čepić didn't do squat, and things only started looking up after five days once I finally managed to track down some Zofran. Right now, he’s just completely wiped out and exhausted. He’s dealing with back pain and can't sleep either (he’s taking Zaldar for the pain, but it isn't cutting it, and the doctor suggested adding Ibuprofen, which he can't touch because of an ulcer). To top it all off, he’s even dealing with bleeding hemorrhoids now. He’s already talking about skipping his next scheduled sessions on the 23rd, 24th, and 25th since they follow that same protocol, and he’s got a follow-up brain MRI on the 29th (honestly, I have no clue how he'll handle an MRI right after chemo, considering how much the first round wrecked him). His labs look okay, though his hemoglobin is sitting at 109.

Does anyone have any advice?! Any recommendations?!

I picked up some medical-grade baking soda for him, but I'm not sure if I should have him drink it. I'm also wondering if he should take "that one thing everyone keeps talking about." In the meantime, he's taking Ganoderma and AHCCImunomax

Sending love to everyone, hang in there!!
07/13/2013 3:00 PM

wanderingcobra76 said:It won't trigger metastases, but patients dealing with advanced metastatic pain are definitely at a higher risk for developing blood clots in their veins.
Those clots can turn into deep vein thrombosis—you know, where the leg gets all swollen and painful—but if you try to massage it, you might actually dislodge those tiny little clots. Then the bloodstream carries them straight to the lungs, which can lead to a pulmonary embolism, and yeah, that can be fatal.

thanks a ton for the info 🙂
is there anything we can actually do to prevent this or just help out when it comes to those potential clots?

driftingcrane27 said:Thanks so much for the reply! 🙂
Is there anything one could actually do—perhaps for prevention or just some general support—regarding those potential blood clots?

Not really during home care. Typically, anticoagulants are only introduced if a patient is hospitalized and facing an increased risk of thrombosis—for instance, following a surgical procedure. Otherwise, there is always the risk that such medications could lead to uncontrolled bleeding, so they aren't administered routinely outside of a clinical setting.

Hey everyone! Sorry if this belongs in a different thread—if it does, please just point me in the right direction! So, my cousin is currently going through chemo (we’re honestly so relieved that her test results keep getting better and better!🙂), and she’s been using these deep headscarves to cover her hair loss. Unfortunately, the shop in Indianapolis where she’s been buying them doesn't carry them anymore, so I want to pick some up for her while I'm visiting Washington, D.C., but I have no clue where to start looking... If anyone knows where I can find that specific style of headscarf or something similar and practical in the D.C. area, please let me know 🙂 thanks in advance!

wanderingcobra76 said:It won't trigger metastases, but patients dealing with advanced metastatic pain are at a higher risk for developing blood clots in their veins.
Those clots can turn into deep vein thrombosis, which usually shows up as leg swelling and pain. The scary part is that massage could potentially dislodge those tiny clots, sending them straight into the lungs. That's how you end up with a pulmonary embolism, which can be fatal.

My dad has lung cancer with metastases in his neck lymph nodes—which have been acting up on and off for a while now—and in his chest. He's also dealt with chronic back pain for years, so my mom massages him almost every day. I guess I'm wondering if massaging him is actually a bad idea given everything else going on.

Greetings, everyone. I am posting here again regarding my mother, who has been battling gallbladder carcinoma for two years now—a cancer that has already metastasized to her liver and lymph nodes.
She underwent continuous chemotherapy for those two years, finally completing her last round this past March.
Following that, she was left with a 5.5 cm metastasis located in a single cluster of abdominal lymph nodes. In May, because that area began causing significant pain, she was referred for radiation therapy. She received palliative treatment consisting of 15 sessions at 30 units each (I am not particularly well-versed in these specific units). Remarkably, after only the fifth session, her pain had completely vanished.
I should emphasize that during the actual course of the radiation, she experienced absolutely no issues—no pain, no nausea, nothing whatsoever.
However, exactly two weeks after the radiation treatments concluded, she was suddenly struck by intense abdominal pain, stomatitis, and skin changes. I am aware of both the immediate and delayed side effects of radiation, so we consulted her physician. The doctor claimed these symptoms were a direct consequence of the radiation—specifically inflammation of the pancreas and stomach—and prescribed a painkiller along with Controloc. Given that the radiation passed through all her abdominal organs, I can certainly wrap my head around that possibility.
In addition to her medication, I have been providing her with specialized dietary supplements. It has now been a month and a half since the radiation ended, and the pain remains just as severe. I am asking if anyone here has experience with this type of radiation, or if someone knowledgeable could tell me: is it truly possible for such intense pain to manifest only two weeks after the treatment ends and persist for this long? Furthermore, if anyone has dealt with, or knows someone dealing with, metastases in the neck lymph nodes, could you please describe when your symptoms first appeared?
Thank you in advance.

My mom underwent surgery for a brain tumor about a year and three months ago. Her doctor mentioned that the side effects from radiation tend to peak around two months post-treatment, and warned us that some symptoms might look like a recurrence when they’re actually just lingering fallout from the radiation itself. Even now, over a year later, her scalp still feels incredibly itchy and irritated. We’ve tried everything from lavender oil and Burn Aid gel to aloe vera gel from Esij, but honestly, nothing seems to be making a dent. I was wondering if anyone here has dealt with something similar? Does anyone have any actual experience with this, or perhaps a specific remedy that really works?

wanderingcobra76 said:not during home care, no. Unless the patient is actually stuck in a hospital bed and there's a high risk for thrombosis—like if they just had surgery—then doctors might bring in blood thinners. Otherwise, those meds carry a massive risk of uncontrolled bleeding, so you definitely don't just hand them out routinely.

Well, there you go—you got the "professional" answer. Now, here’s my take based on what I actually went through: my mom had lung cancer. She was asking for massages constantly, so we’d just massage her legs ourselves. Honestly? I think she was just looking for some connection—some attention. Plus, between the constant lying around, the depression, and the sheer pain, her circulation probably tanked and her body just felt numb... everything just piles up on someone fighting this stuff. From my own experience, I don't see how a little bit of massage could hurt—unless a color Doppler scan shows actual clots. If there are clots, then yeah, forget it—you don't touch them because you don't want to dislodge a thrombus. But otherwise, a patient needs a ton of willpower and genuine care to make those brutal moments even slightly bearable. Family can actually DO a lot to help! Good luck.

coastalviper49 said:My mother underwent surgery for a brain tumor one year and three months ago. Her doctor mentioned that the side effects from radiation often peak about two months after treatment ends, and warned us that certain symptoms might mimic a recurrence when they are actually just lingering effects of the radiotherapy. Even now, a full year later, my mother suffers from an intense itching sensation on her scalp. We have tried everything from castor oil and Burn Aid gel to Aloe Vera gel from Esij, but nothing seems to provide relief. What has been your experience? Is there any specific remedy that actually works?

First of all, thank you for the response. I don't have firsthand experience with radiation side effects because my mother only finished her treatment this past June. She is currently dealing with severe side effects—honestly, they are horrific—though hers involve intense abdominal pain, loss of appetite, and stomatitis. She didn't have skin issues since she only had fifteen sessions, but frankly, this radiation has been far more brutal than her seventeen grueling rounds of chemotherapy. I am being completely sincere and not exaggerating here. It seems to me that your mother may simply have to endure this until it eventually subsides, as it appears nothing truly helps. My mother is hanging in there, despite having access to everything she needs and receiving maximum care, but this radiation damage seems to follow its own timeline regardless of intervention.

Pitance: Is the second round of chemo usually harder than the first?

So, my dad was dealing with vomiting for four days straight after his first session, and now he’s gearing up for round two. He’s on this PE protocol—something involving platinum—where they do it over two consecutive days: a 4-hour stretch followed by a 2-hour one.
He’s still totally unsure about how to handle the next one. Even though his labs showed he actually handled the first round pretty well, he’s still terrified of what might happen next.😢

swiftpanther102 said:Is the second round of chemo usually harder to stomach than the first?

So, here’s the situation: my dad has been dealing with constant vomiting for four days straight following his first round of chemo. He’s actually scheduled to head back in for the second session in just a couple of days. They're running him on a PE protocol—something involving platinum—where he gets the first dose over a four-hour stretch, followed by the second dose given in two one-hour increments.
He’s still second-guessing how he'll handle the second round. Even though his test results show he actually took the first one pretty well, he's still absolutely terrified of what might happen next. 😢

The rule is that there are no rules, and you’ve got to stick to that—just sit tight and see how the situation plays out.

wanderingcobra76 said:Look, you shouldn't be doing that at home. Seriously. The only time you're seeing blood thinners being used like that is when a patient is actually tucked into a hospital bed under constant supervision—say, right after some major surgery where the risk of a clot is through the roof. Otherwise? You're playing with fire. If you start handing those out routinely without a doctor watching your every move, you run a massive risk of causing uncontrolled bleeding. It's just not something you mess around with in your own living room.

Thanks again. 🙂 You can never learn enough... honestly. It’s like trying to fill a bucket with a massive hole in the bottom. Just keeps going.

I don't even know where to start with this one. Just... wow. It’s like watching someone try to build a skyscraper out of toothpicks while riding a unicycle. You think you've got a handle on the logic, then suddenly—bam—everything just falls apart into this weird, nonsensical mess. I was sitting there, coffee in hand, thinking maybe they had a point, but honestly? It’s just pure chaos. Reminds me of that time I tried to fix my own sink in Chicago—ended up flooding the kitchen and having to call a plumber who charged me triple just because he smelled my desperation. Same energy here. Total disaster. kaže:
So, you got the professional answer, but honestly? Here’s my take based on what we went through. My mom had lung cancer, and she was constantly asking for massages. We ended up just massaging her legs ourselves. If I'm being real, part of it felt like she was just craving that connection—just wanting someone to notice her. But there's a physical side too; when you're stuck in bed all day dealing with pain and depression, your circulation goes to hell and you just lose feeling in your body. Everything kind of just stagnates when you're that sick. From what I saw, a little massage doesn't hurt anyone. The only massive "no-go" is if a Doppler ultrasound shows blood clots in the veins. You definitely don't want to mess with those or risk dislodging anything. But besides that? It can help. You really have to go into it with a lot of heart and intention. You're trying to make those brutal moments a little more bearable. Family and close friends actually CAN make a huge difference. Hang in there.

That was a pretty intense response. Seriously. 🙂 Thanks... Honestly, things have taken a turn for the worse. My uncle is pretty much bedridden now; he just lies there all day in this weird, half-conscious fog. He’s getting weaker, too—struggling to swallow and barely eating anything compared to how he used to be. It really looks like his nervous system is just starting to pack its bags and head south. 😢 Well, it is what it is... I just really hope he knows he isn't going through this alone and that he’s got people around him who actually give a damn. Honestly, all I want is for him to feel as little pain as possible, and for things to just... end, you know? Like, for him to pass when there's someone right there by his side holding his hand. That's it. Sending strength to everyone else out there fighting their own battles, too. 👍 Against this... honestly, I don't even know what words to use to describe it. I just know that lately, I’ve been pretty damn pissed off about "that."

swiftpanther102 said:John Doe: Is the second round of chemo usually harder to handle than the first?

Basically, my dad was dealing with vomiting for four days after his first session, and now he’s facing his second one. It's the PE protocol—something platinum-based—administered over two consecutive days, with the first four hours being one dose and the next two hours being another.
He’s still pretty unsure about how this second round will go because, frankly, he's terrified of what might happen, even though his bloodwork suggested he handled the first round fairly well. 😢

My mom actually cruised through her first cycle quite easily; she felt fine and her labs looked solid. The second one was a bit more of a struggle, involving some nausea and dizziness. By the third and fourth cycles, she started feeling the chills 😉, but the fifth one was an absolute disaster. She couldn't get out of bed for five days straight, her blood counts were completely shot, and her platelets dropped down to 16, which ended up preventing her from even starting the sixth cycle.