Support resources for families dealing with cancer and other serious illnesses

Hi there,

My mom is currently on Xelod, and she's developed these sores around her fingernails because of it. They're constantly bleeding, even if she just barely touches them. She’s been cleaning them with alcohol regularly and using a healing spray, but nothing seems to be working. :/
Has anyone else dealt with this?

Kimberly Cox58 said:Hello everyone, good day. Could someone please share their experience to help me with a few things? My husband is fighting colon cancer. He just finished his last of six chemotherapy rounds. Initially, our doctors told us that once he finishes those six cycles, we would know how things stand in about a month—they’d do an ultrasound, a CT scan, check the markers, etc. However, now they're changing the story and saying we need to wait another 3 or 4 months before even doing the tests. Can anyone advise if it really takes that long to see how successful the chemo was, or can we know sooner? While we're hoping for the best, we're wondering if waiting this long makes sense, because if something *is* wrong...
Please advise, and thank you for the help.

Follow-up scans usually happen 3 months after chemo, based on clinical status.

Jamie Barnes15 said:Hi everyone!
Can anyone tell me what it means when they say in the retroperitoneum of the lumbar regions, near the abdominal aorta and the inferior vena cava, there are no enlarged lymph nodes visible, but there are small, multiple lymph nodes measuring between 7mm and 9mm in diameter?
Also, I have a minimal amount of fluid in my pelvis.
I had a testicular tumor, underwent a lymphadenectomy, completed two preventative chemo sessions, and my results have been clear for 4 years with regular checkups every 10 months. But now, after this latest scan, they told me to repeat the tests in 3 months without giving any real explanation.
Please, if anyone knows anything about this, let me know. Thanks in advance!

They really need to know which histological type it is—seminoma or non-seminoma, such as teratoma, trophoblastic, or embryonal.
The findings suggest a possible recurrence, even though it doesn't seem likely to me.
Check CBC, CRP, ESR, LDH, AFP, and beta HCG.

velvetdrifter15 said:Hi,

My mom is taking Xeloda, and because of that medication, she's getting sores around her fingernails. These wounds are full of blood and bleed every time they are touched. She regularly cleans the wounds with alcohol and applies a healing spray, but there's no improvement at all. :/
Do any of you have experience with this?

That needs to be looked at by a surgeon or an oncologist. They might possibly prescribe Vitamin B6.

velvetdrifter15 said:Hi,

My mom is taking Xeloda, and it’s causing these sores to break out around her fingernails. They’re constantly bleeding and just ooze blood whenever anything touches them. She’s been cleaning them with alcohol regularly and using a healing spray, but nothing seems to be working. :/
Has anyone dealt with this before?

I haven't personally gone through this, but honestly, scrubbing wounds with alcohol isn't exactly the smartest move. It can be pretty harsh. A better option would be something like Octenisept, and you might want to try applying some Silver Sulfadiazine; the silver ions in it really help speed up the healing process.

vividsailor7 said:It’s important to identify the specific histological type—whether it's a seminoma, a non-seminomatous teratoma, or something trophoblastic or embryonal.
The results suggest there might be a recurrence, though I personally don't think that's likely.
Keep an eye on CBC, CRP, ESR, LDH, AFP, and beta HCG.

Embryonal at 95%, plus 5% immature teratoma.

Markers look normal; everything else is fine, aside from what I already mentioned.

Nancy Lee said:stormytinker4, my dad spent months on Codeine and it did absolutely nothing. His doctors were baffled—they kept insisting they’d never seen a case where it didn't work, but well, here we are.
I'm thinking about taking him to see a homeopath before he loses his mind if this cough doesn't settle down soon.

I hear you. It hasn't been doing much for my dad either 😢 ... what dose was he taking?

I can’t seem to find a straight answer online—do enlarged lymph nodes in the retroperitoneum always point to something serious, or could they just be a result of some inflammation?

stormytinker4 said:I believe you, since it hasn't been doing much for my husband yet either 😢 ... what dose was he taking?

First it was 2x1, then maybe 2x2 or 3x2, I can't quite remember. They even tried dissolving it under his tongue, but nothing worked.
The cough is just getting worse by the day😢 He tried taking Codeine again for two days, but stopped because it’s useless. Now they've started him on Methylprednisolone, 32 mg, twice a day, via IV. Now I'm just waiting for the swelling to come back.😢
He's still in the hospital. The cough is only manageable when he's lying down. If he sits up, stands, or heaven forbid tries to walk or talk, it's just brutal. He lost his voice again, too.😢
It's crazy how everything can flip in a single day. A few days ago, he was doing great—really great. We were out at the beach, walking around town, just living life. Then, out of nowhere, that coughing fit hits one day, and it just keeps going until he ends up like this. It's enough to drive you mad.
Anyway, I posted here recently about how the upper left lobe of his lung is affected, and there was a 3mm nodule seen on the right side. I was asking what a nodule meant back then. Well, that nodule is still there, but since all the other results look okay, they think it might be the target. We'll see next week. I hope it isn't, but if it is, I don't know what else would explain why he's in this state.

Jamie Barnes15 said:I just can't seem to find any info online—do enlarged lymph nodes in the retroperitoneum always signal something bad, or could they just show up like that for no reason?

Typically, retroperitoneal lymph nodes are considered normal if they stay within the 8-10mm range.

If someone has a history of malignancy, any enlargement in those nodes naturally raises concerns about potential metastasis (for instance, with testicular cancer, we're usually looking at the paraaortic nodes).
Given that your measurements are right on that borderline, it's really important to monitor them closely—just so you can react quickly if things actually do change.
That being said, it's certainly possible they are perfectly fine—it's crucial to compare your current CT scans with previous ones to see how they looked before. Right now, their size alone isn't specific enough to draw any definitive conclusions, is it?

wanderingcobra76 said:Retroperitoneal lymph nodes are typically considered normal if they stay under 8-10mm.

If someone has a history of malignancy, any enlargement in those nodes always raises the possibility of metastasis (with testicular cancer, we’re usually looking specifically at the para-aortic nodes).
Since yours are right on the borderline, it’s vital to monitor them closely so you can act quickly if things change.
That said, there is a chance they are perfectly fine—the key is comparing your current CT scans with your older ones to see if this is a new development. Right now, the size alone isn't enough to draw any definitive conclusions.

Those 7-9 mm clusters haven't been there for four years; I actually had them back when I was undergoing chemo.

Thanks for the input.

velvetdrifter15 said:Hey there,

My mom is currently on Xeloda, and it’s causing these nasty sores to open up around her fingernails. They're basically bleeding wounds—every little touch makes them bleed. She’s been cleaning them with alcohol regularly and using a healing spray, but honestly, nothing seems to be working :/
Has anyone dealt with this before?

Maybe she could try rubbing some calendula oil on her fingers? It’s seriously great stuff for cuts, burns, even fungal issues—it's hard to go wrong with it since it's all plant-based. You can grab some at a local health food store or just make your own. I use it on my kids all the time, and scrapes heal way faster!

Greetings.
My mother is experiencing red patches on her hands and legs due to chemotherapy, along with intermittent redness on her scalp. Her doctors prescribed a B-complex vitamin and suggested the issue stems from sun exposure. However, she isn't out in the sun; the only time she’s exposed is during the drive home from the clinic, and even then, her legs aren't catching any sunlight. Is there something specific we should purchase, or is this simply a normal side effect?

Nancy Lee said:It started at 2x1, then it shifted to either 2x2 or 3x2—I can't quite recall. They even tried sublingual, but nothing worked.
The cough just keeps getting worse by the day.😢 He tried taking Codeine again for two days, but he stopped because it isn't doing anything. Now they've put him on Methylprednisolone, 32 mg, twice a day, via IV. I'm just waiting for the swelling to start up again.😢
He’s still in the hospital. The coughing is easier when he stays lying down. But once he sits up, stands, or heaven forbid tries to walk or talk, it's pure misery. He lost his voice again, too.😢
It's crazy how everything can flip in a single day. A few days ago, he was doing great—really great. We were out enjoying the coast, walking through the city, just living life normally. Then, out of nowhere, that coughing fit hit him one day, and it just hasn't let up since. It's enough to drive you mad.
Anyway, I posted here recently about how the upper left lobe of his lung is affected, and there’s a 3mm nodule on the right side; I was asking what a nodule actually meant back then. Well, that nodule is still there, but since all the other tests look okay, they think it might be the target. We'll see next week. I hope it isn't, but if it is, I don't know what else would explain why he's in this state.

Yeah, mine is on 2x1 for now, plus his feet and ankles are starting to swell 😢 ... honestly, I think it would be even worse without the Codeine; he manages to sleep, and even when the coughing wakes him, he falls right back under... during the day, he's almost constantly sleeping—coughing, sleeping, repeat. During those brief windows when the coughing stops, he looks somewhat normal again. For a moment, he looks like my dad instead of some exhausted, frail old man... he’s become disoriented, too—staggering, losing his balance, things like that. I have this feeling that it won't be the cancer that kills him, but the cough itself. It's just draining the life out of him. I don't even know if he weighs 65kg anymore; he's completely wasted away, and don't even get me started on his complexion... he's gray, yellow, greenish... whatever he's coughing up was bloody at first, then black, then gray, and now it's lighter, sometimes yellowish, like smoker's phlegm. All in all, it's a catastrophe. This daily decline is just unbelievable 😢 ... regarding the nodule, I assume it's the target, but I don't think it has much to do with the cough or his current condition; it's just the disease progressing, and it might only get worse 😢 ... I don't know what to tell you or how to comfort you, because I feel the exact same way 😢 ... since the cancer is inoperable and he neither wants nor can handle chemo or radiation due to his overall weakness, I had pinned all my hopes on alternative options, which he won't even consider. My hands are completely tied...

Jamie Chase said:Hey
My mom’s getting these red patches on her hands and legs from chemo, and sometimes her scalp gets blotchy too. Her doctors gave her some B vitamins and claimed it’s just sun exposure. Problem is, she isn't out in the sun much—just driving home after treatment, and even then, her legs aren't hitting any direct sunlight. Is there something we should pick up for her, or is this just part of the deal?

Just have her primary care doctor write a referral for a dermatologist. It’s the easiest way to handle it... skin changes are a common side effect of chemo. My dad actually deals with his scalp peeling off because of it. He got a referral to a specialist who’s managing his treatment now, so he's basically under expert care while he goes through the chemo cycles.

Jamie Barnes15 said:embryonal 95% + 5% immature teratoma
The markers look normal, everything else seems fine except for what I just wrote.

wanderingcobra76 is right, but since the labs are stable, I seriously doubt we're looking at a primary disease here.

stormytinker4 said:on top of that, his feet and ankles are swelling😢 ...

The coughing—it started bloody, then turned black, then gray, and now it’s lighter, sometimes even yellowish, almost like smoker's cataracts.

If his legs are swelling, you need to check heart function first (EKG, TTE, chest X-ray, NT-proBNP, CK, CK-MB, arterial blood gas) and kidney function (urea, creatinine, urate, 24-hour creatinine clearance, proteinuria), because he might be struggling to breathe due to heart failure and potential respiratory insufficiency.
And if he's coughing up yellow stuff, it could be an infection (if he has COPD, it could be a COPD exacerbation), so regardless, getting a CBC and CRP done would be smart, along with starting an antibiotic like Amoxicillin 500mg once daily for 10 days.
But obviously, before any of that, you actually need to perform a meaningful physical exam.

Kimberly Cox58 said:Hi everyone. Can anyone share their experience to help me out? My husband is fighting colon cancer. He just finished his sixth round of chemo. Initially, the doctors told us we'd know how things stood about a month after he finished those six rounds—they mentioned ultrasounds, CT scans, tumor markers, etc. But now the story has changed, and they’re saying we have to wait another three or four months before doing any tests. Does anyone know if you really have to wait that long to see if the chemo worked, or can we find out sooner? We're hoping for the best, but we're worried about waiting so long if something isn't right...
I'd appreciate any advice. Thanks.

The questions you've asked are medical in nature, and it's hard for anyone besides his actual doctor to have a real grasp on the treatment and the status of the disease. That said, I want to point you toward some steps you can take yourselves that should show results pretty quickly, regardless of where the issue is located:

First, I suggest cutting out foods that weaken the body and fuel disease development immediately: processed stuff like margarine, oils, white flour, meat and deli meats, milk and dairy, and all types of simple sugars (white sugar, honey, and even raw fruit).

Second: increase intake of cooked grains (brown rice, buckwheat, millet, barley, oats, amaranth, etc.), legumes (lentils, chickpeas, beans, peas, kidney beans, etc.), leafy greens, and root vegetables.
Fall is coming. Pumpkin can be prepared in countless ways and should probably be part of the daily menu.
Spices matter too. Ditch the standard industrial spice blends, paprika, pepper, and the like, and swap them for natural spices. I recommend using plenty of miso paste (fermented barley or rice).
Definitely use high-quality supplements: immune boosters, various probiotics, green magma, spirulina, etc.
If you manage to make these changes, health should improve quickly. You might even forget about the wait for the next phase of treatment.
Regards

Dana Smith13 said:The questions you’re asking are strictly medical. Honestly, unless you're talking to your own doctor, nobody else can truly grasp the specifics of your treatment or the actual progression of the disease. That said, I want to shift your focus toward things you *can* actually control—actions you can take right now that will show results fast, regardless of where the illness is hitting you:

First off, I strongly suggest cutting out anything from your diet that weakens the body and fuels disease progression. We're talking refined junk: margarine, processed oils, white flour, and more. Toss out the meat and deli meats, milk and dairy products, and all kinds of simple sugars—refined white sugar, honey, and even raw fruit.

Second: ramp up your intake of whole grains (brown rice, buckwheat, millet, barley, oats, amaranth, etc.), legumes (lentils, chickpeas, beans, peas, navy beans...), leafy greens, and root vegetables.
Fall is coming. Pumpkin can be prepared in a hundred different ways and absolutely should be part of your daily menu.
Don't forget spices. Ditch those standard industrial seasoning blends, paprika, pepper, and whatever else; swap them for natural spices instead. I highly recommend using plenty of miso (fermented barley or rice).
And definitely use high-quality supplements: Immune support formulas, various probiotics, green magma, spirulina, and so on.
If you manage to implement these changes, your health status should improve rapidly. You might even find yourself forgetting why you were even waiting to restart therapy.
Regards

Regarding the bloodwork—that's just not true. There are clearly defined protocols being followed, not just doing whatever someone feels like doing.
As for the diet, while it isn't inherently "bad," there's zero benefit to it if you aren't following it properly. Is it any different than, say, cutting out meat, dairy, or olive oil?

vividsailor7 said:Regarding the bloodwork—that's just not true. There are very specific protocols in place that get followed, regardless of what anyone prefers.
As for diet, it’s generally not a bad thing, but it isn't a cure-all. It’s no different than cutting out meat, dairy, or olive oil, right?

Have you actually tried it? Or are you just assuming?
I've been through the ringer myself, so I know exactly what the treatment and recovery process looks like.
Since you're a doctor by profession, I have to ask: is it true that dietary sugar generally fuels inflammation? And is there any actual discussion among physicians about advising cancer patients to cut out sugar entirely?

Anyone here on Cetuximab? If you are, shoot me a DM... thanks.

vividsailor7 said:wanderingcobra76 is right—since the labs look normal, I doubt this is the primary illness.

If his legs are swelling, you’d want to check heart function first (EKG, TTE, chest X-ray, NT-proBNP, CK, CK-MB, arterial blood gas) as well as kidney function (urea, creatinine, urate, 24-hour creatinine clearance, protein/urea ratio). He might be struggling to breathe due to heart failure, which could lead to respiratory issues.
Also, if he's coughing up yellow phlegm, there might be an infection involved (if he has COPD, it could be a flare-up). In either case, getting a CBC and CRP would be wise, and maybe starting an antibiotic like Flexid 500mg once a day for ten days.
But obviously, everything starts with a proper physical exam.

Thanks so much for the input!! He was given a diuretic—one pill a day for three days—but the swelling hasn't budged at all... I'll suggest those tests you mentioned to the doctor...

stormytinker4 said:Thanks so much for the reply!! He’s been taking one Lasix tablet a day for three days now, but honestly, there hasn't been any improvement whatsoever regarding the swelling... I'll definitely suggest those tests you mentioned to his doctor...

I have no idea what his serum electrolyte levels look like right now, but let’s be real—it's highly unlikely he's going to see any actual relief from just taking Lasix.