Support resources for families dealing with cancer and other serious illnesses

Angela Wright said:Grdana, try looking at your situation through the lens of life itself: nothing is certain, there are zero guarantees, and everything is constantly shifting. We decide how we handle that. It might feel impossible sometimes, but really, it just comes down to a choice. You have to be brave enough to set things up on your own terms and keep weighing those options internally. That’s why some people choose to stay in the dark, at least until they're forced to face it. Constant fluctuations... you know how it is... 😉

Only people who've dealt with actual hardship and massive losses can truly understand that, and it didn't break them like it would most others. Without that kind of experience—maybe if someone's just born with a rare talent...

P.S. Those typos reminded me of those old fairy tales, Grdana. 😁

Angela Wright said:Grdana, you really ought to try viewing your current situation through the lens of life’s broader patterns—the fundamental realities, if you will. Everything is inherently uncertain; there are zero guarantees, and things are constantly in flux. How we choose to navigate that volatility is entirely up to us. Even when it feels utterly impossible—which it often does—it really just comes down to a matter of personal resolve. You have to find the courage to define things on your own terms and constantly weigh those options internally. I suppose some people prefer to stay in the dark, at least until they're forced to face the music. It's all about those fluctuations... you know? 😉

Oh, absolutely—there are no guarantees. Life is unpredictable, which is precisely what makes it beautiful (for the most part, anyway).
I tend to be a rather rational person by nature, and as such, I rely on knowledge and data as my primary way of interfacing with the world around me. That said, I can certainly accept the fact that certain things remain unknown—perhaps they always will be...
And I really need to get moving... the main issue with this fluid in my lungs is that I can't quite make it to the gym to work it out properly. Yesterday, instead of taking the subway, I decided to walk, and I ended up trekking all the way to 8.1 miles ..

crimsongull20 said:Only those who have endured genuine hardship and profound loss—without being broken by it—can truly understand. Without such experiences, perhaps only a rare few with innate talent could grasp it.

P.S. That typo reminded me of the legend of Grdana. 😁

Everyone deals with significant losses at some point in their lives.
For me, the weight comes from how much everything seemed to hit all at once—just a concentrated cluster of grief.
My girlfriend’s father was out fishing just two months ago—an active, healthy man—and now... he's gone.
Five years ago, I lost my brother to liver failure, and then my sister passed away just last month... it makes you sit back and wonder, at times, what exactly is wrong with the universe.
On top of that, I'm navigating things with my mother; she's 82 and terrified of an upcoming surgery. Her thyroid has grown so large they’ll likely have to perform a sternotomy just to reach it—it's a daunting prospect for someone her age, and understandably so.
Then there's my father (84), who suffered a stroke last year. He hasn't spoken since, but I can see him declining; the dementia is setting in, and he's fading more every day.

Yesterday, I found myself thinking back to how my girlfriend and I celebrated New Year's Day... back when life wasn't quite this cluttered with—forgive my language—this absolute mess.

It's strange how certain problems that used to feel monumental now seem trivial, almost insignificant... though I find myself wondering when this relentless cycle will finally break. It doesn't look like it's happening anytime soon, clearly.

The only thing I can really do is find my own ways to cope—focusing more on self-care, watching my diet, maybe taking a trip somewhere,
... trying to actually live a little, because you never truly know what tomorrow might hold.

nimblepanther14 said:Everyone hits a rough patch eventually.
It just hit me all at once... everything piling up in such a short window.
My girlfriend’s dad was out fishing just two months ago... totally active... and now he's gone.
I lost my brother to liver issues five years back, then my sister last month... sometimes you just wonder what is wrong with us...
On top of that, I'm dealing with my wife, who's terrified about thyroid surgery. Her thyroid has grown so much they have to cut through her sternum... she's 82 and understandably scared.
Then there's my husband (84), who had a stroke last year. He doesn't speak anymore, and honestly, he's just fading... dementia is setting in.

Yesterday, I caught myself thinking about how my girlfriend and I spent New Year's Day... things weren't this messy back then...

Suddenly, current problems feel so trivial... I keep wondering when the chaos will finally stop... clearly not anytime soon.

All I can do is find my own ways to cope... watch my health, watch my diet, maybe take a trip...
...try to actually live, because you never know what tomorrow brings.

I get it. I've lost about 80% of my immediate family, and based on your parents' ages, I'm likely quite a bit younger than you. My two grandmothers are still here, ages 86 and 91, but most of their children—except my mom and one aunt in her seventies—are gone.

I went through those losses in my twenties over a few years, and by my mid-thirties, my own health failed. I've been fighting to get it back for years now.

So, I know how it feels when the crap seems endless. There isn't much left to do but accept the reality and keep moving until you can't. 🙂

I’m inclined to agree with crimsongull20 ...that she truly lives life to the fullest 🙂
It certainly appears as though she’s carved out quite a high-quality existence for herself...

Angela Wright said:My own reasoning follows a similar path. When dealing with women in menopause, isn't it often better to simply remove the ovaries and uterus if they are functional or potentially problematic? I recall a late aunt of mine from the States who underwent a full removal. She told me her doctor described the uterus during menopause as nothing more than a sponge soaking up toxins. Was that his universal medical opinion or just specific to her situation? I cannot say. Yet, I frequently get the impression that this is indeed the reality for many women.

We have a CT scan and marker tests scheduled for this Tuesday, per the oncologist's instructions. We are currently debating whether to take her to a major medical center in Chicago. Is it even possible for them to perform a follow-up surgery to remove as much as they can, or would it be wiser to see if she can tolerate chemotherapy first? Then we decide.

Jamie Chase said:The oncologist wants us to get a CT scan and run some blood markers this Tuesday. We’re debating whether we should take her to the Mayo Clinic for a second opinion. Is it even worth trying surgery again to see if they can clear more out, or is it smarter to go straight to chemo first?

Just wait until you have the CT results and the blood work in hand before making any big calls. My take? If there's an opportunity to cut it out, you take it. Take those scans over to the specialists in Rochester to get their take on things. You don't have to rush into anything immediately.

Well, turns out I completely misread that X-ray... my pulmonologist confirmed everything with my lungs is actually fine 🙂
I really am sorry for causing such a stir—definitely a lesson learned for me on not jumping to conclusions too quickly...
As it stands, I just have these two small tumors in my neck... they're scheduled to be removed shortly 🙂

Just wrap this up so you can finally head out for your vacation 😉

Angela Wright said:Just get it done so you can head out for your vacation 😉

Oh, I intend to... Once I’ve finally recovered from this mess, I’m heading somewhere far away... 🙂

My uncle had throat surgery yesterday. It was a squamous cell carcinoma. It had spread a little bit, but based on the scans, it looked contained to the neck area, so they decided to go ahead with the removal and try to bypass chemo altogether. But, while they were in there, they found something near the base of the skull and sent it off for testing. According to the doctors, if that turns out to be malignant, things aren't looking great.

Does that mean the tumor might have spread to the skull or the brain?

neonheron32 said:My uncle underwent throat surgery yesterday for squamous cell carcinoma. It had spread slightly, but based on the initial scans, it looked localized to the neck area, so the doctors decided to go ahead with removal to try and dodge chemotherapy altogether. However, during the procedure, they discovered something near the base of the skull and sent it off for pathology. According to the medical team, if those results come back malignant, the prognosis is pretty grim.

Does that mean there's a chance the tumor has metastasized to the skull or the brain?

That’s exactly why they took a biopsy for analysis. Just because they found something involving the skull bone doesn't automatically mean it's invaded the brain itself.

I had the same thought, honestly, but that comment about the prognosis being grim if it turns out to be malignant really spooked me. You’d think once you cut it out, that whole problem would just be solved, right?
Thankfully, the surgery went smoothly. Now we’re probably stuck waiting a week or two for the biopsy results to come back.
It’s been a heavy blow for us, especially after losing my grandfather to lymphoma just two months ago. He was my dad's father. Most of his life, he was a heavy drinker and a smoker, but deep down, he was such a kind, gentle soul. This cancer hit him harder than anything else ever did, and for a second, we actually felt optimistic—like maybe this would be the wake-up call he needed to finally turn things around. For the first time, he actually admitted he had to quit drinking. And now, having to face the reality that it might already be too late for that change... it's a lot.
On the bright side, he's in great hands with an excellent ENT and a top-tier surgeon; they’re truly giving it their all. It’s just hard not to feel this lingering anxiety, wondering if they'll take every possible step if it turns out to be something serious.

Angela Wright said:Wait for the tumor markers and the CT results before making any calls. In my view, if there is an opportunity to remove something, one should always take it. Take those CT findings to a specialist in Boston for a second opinion. There is no need to rush into anything immediately.

The CT scan was completed today. Interestingly, the marker levels have dropped by half since the surgery.
I have the scan results here; would anyone be willing to help me "decode" them?

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Jamie Chase said:She had her CT scan today, and her tumor markers have dropped by half since the surgery.
I have the scan results right here—can anyone help me "decode" this?

http://i36.tinypic.com/5ls86w.jpg

http://i33.tinypic.com/8yfhg5.jpg

The chest CT shows pleural effusion and lymphadenopathy.
The abdominal CT indicates metastasis in the lymph nodes (from the ovaries), fatty liver, and ascites near the spleen.
What’s absolutely necessary right now is diuretic therapy. You'll need to titrate the Lasix dose based on her blood pressure readings and potassium levels.
A liver-protective diet is also essential.
As needed, an ultrasound of the chest—specifically the pleura—should be performed, followed by a guided therapeutic needle aspiration to drain the fluid.

vividsailor7 said:The chest CT scan shows pleural effusion and lymphadenopathy.
The abdominal CT reveals metastases in the lymph nodes (likely ovarian), fatty liver, and ascites associated with the spleen.
What is absolutely necessary here is diuretic therapy. Titrate the Lasix dose based on blood pressure readings and serum potassium levels.
A hepatoprotective diet is also required.
As needed per clinical indication, a thoracic ultrasound of the pleura can be performed, followed by a guided therapeutic needle aspiration of the fluid.

If I am understanding this correctly... she had tests done on the lung fluid, which came back negative for tumor cells. They punctured her lungs two or three times, if that is what you meant.
And this diuretic therapy—what is the Lasix dosage? Is it for the ascites?

My mother just had her follow-up appointment with the oncologist, and I’m left wondering—is it actually standard practice to wait two full months after surgery before starting chemo? Or is this just another instance of our healthcare system being inefficient? ☕

On another note, I’ve been looking into Alexa—apparently, it’s highly recommended to help mitigate some of the side effects during treatment. It isn't covered by insurance, so it has to be purchased out-of-pocket, but I told her that if there is any way to make this process more tolerable, we shouldn't let the cost be the deciding factor... what have your experiences been with it?

I’ve also heard whispers about certain supplements or treatments designed to prevent hair loss. If it's alright to ask that here, does anyone have any real insight or personal stories regarding those?

Thanks

This is a perfectly standard recovery window. Honestly, sometimes it takes three full months. As for those hair loss prevention treatments—just forget about them. It’s a necessary evil, and if you're lucky, it'll be the only real downside to this whole ordeal. You just have to accept it; grab some beanies or a wig, and you'll get through it. It isn't as catastrophic as it feels. Regarding Alicia, those are injections administered on chemo days specifically to prevent nausea; they require a prescription and an oncologist's recommendation. You'll definitely be offered something, but whether it's Alexa or a different brand is strictly a professional medical decision. We're talking about serious medication here, not some over-the-counter supplement. Whether it's covered by your insurance or out-of-pocket, I can't say. Just check with your local pharmacy.

Greetings from Boston!

I pushed through my first round of chemo on May 18th. It’s only now that I feel strong enough to actually sit at a computer. Though, frankly, I have some concerns:

1. For an occult adenocarcinoma (where the primary source remains unknown), my prescribed regimen is irinotecan plus cisplatin—six cycles total, administered once every 21 days. I haven't been able to confirm if this is the standard protocol. Does anyone know?

2. Despite being given Zofran tablets to manage nausea and vomiting, they were essentially useless. Is there anything more potent out there?

3. For the first four days, I couldn't keep anything down—no food, no water, just constant vomiting. Does anyone have a suggestion for something I might be able to eat that won't immediately exit my stomach?

4. Are there any general rules regarding the second cycle? Does it tend to hit harder, or is it potentially easier?

Any advice would be greatly appreciated. This was physically brutal, and I am genuinely unsure how I will manage to repeat this five more times.

Thanks, and greetings from Boston!

Kevin Bishop10, I already sent you that link where all the protocols are laid out clearly.
Try eating some air-popped popcorn; you can pick up one of those cheap machines pretty easily. It actually helps a lot of people. I also suggest rubbing some crushed flaxseed dissolved in lukewarm water on the area—let it sit for an hour, strain it, and then drink the liquid. For some folks, Coca-Cola works wonders too.
Ask your doctor for something else to handle the nausea. Aspirin, for instance, is a solid option.