Support resources for families dealing with cancer and other serious illnesses

Here’s a quick update on how things went today:
After Mom got her head shaved at the salon, we headed over to that boutique shop in Downtown to pick out a wig. Honestly, their selection was impressive. She tried on a few different styles, and this one short one she tried last turned out to be the winner—it actually matched her natural hair color almost perfectly. And by some stroke of luck, it was also the cheapest one in the bunch.😁 The lady working there even told us we wouldn't need to pay a cent more because everything is covered under the insurance plan.
We also picked up a versatile scarf and a hat for the evenings.

Oh, I almost forgot—we also grabbed all the specialized maintenance products for the wig:
shampoo (200ml) - $19
conditioner (200ml) - $21
hairspray - $20
and a foam mannequin head to keep the wig's shape intact - $18

Mom is happy with it, and I am too, of course. We’ll see how it holds up in practice once we get used to it. For now, while we're just hanging out at home, she’s either going bare or wearing a scarf; she hasn't quite gotten used to being without anything yet, jokingly saying she looks like an egg. But she really does have a lovely head shape, so I think it'll be totally fine once she settles in after a few days.

Nancy Hernandez43 said:During my second round of chemo, I decided to just go for it and shaved my head down to about half an inch. Today, my hair has finally grown back to that exact same length. Honestly, I think it makes things a little easier on my daughter when she sees me right there alongside her, going through the same thing. Right now, we’re both just letting our hair grow out naturally, though we do have to trim the ends every once in a while so we don't end up looking like total witches. Every time we do, my husband lets out this huge groan and goes, "Are you kidding me? Again?"🤣

Nancy Hernandez43, hats off to you. Respect.
And here I was thinking I was being such a saint, just because I finally bit the bullet and chopped my long hair off to shoulder length.🙄 Hmm.
It honestly strikes me as weird that both of your wigs didn't even last through a full season. My mom only pulls hers out when she’s heading somewhere special or if we have guests over, so she isn't wearing it every single day. At this rate, I'd expect hers to actually hold up longer than three months.
Honestly, I’m just really glad to hear that your mom already has an inch of thick hair growing back.👍

quietraven0 said:Nancy Hernandez43, I have to hand it to you...
I honestly thought I was being quite daring myself when I decided to chop my long hair down to shoulder length during the off-season🙄 hmm
It strikes me as rather peculiar that both of your wigs didn't last very long. My mother intends to wear hers only for special occasions or when guests drop by, rather than on a daily basis, so one would assume it might actually endure longer than three months...
Regardless, I am genuinely pleased to hear that your mother’s hair has already grown back an inch, and thick at that👍

I suspect your mother's wig had a short lifespan simply because she has to present herself in public perhaps two or three times a day... on the other hand, we live in a city where even finding basic maintenance products isn't easy—we only just managed to order and start using them this year.

Rest assured that your mother's hair will grow back, just as it has for everyone else who has navigated chemotherapy and recovery. I can only hope that for us, this is the final time, and that our mothers can return to that vibrant light they possessed before falling ill...

Stay strong. Just carry yourself with courage and grace in that new wig... I'm sure your mother will adjust to it before you know it. 👍

feralridge3 said:I shave my entire head once a month. It’s been a full year since I finished radiation. In the spots where my hair didn't fall out entirely, it's just flat, though at the edges where the radiation was lighter, it actually grew back thicker and curlier. But where the radiation hit hardest? It's thin and patchy. 😢 Can anyone even imagine what that looks like? 🙄
I keep holding out hope that it'll all grow back, but lately, I've started thinking about getting a wig.
Then again, I've gotten pretty used to wearing scarves and just being hairless.
And honestly, there's a certain practicality to having no hair. 😁 Before my tumor was discovered, I had hair that reached halfway down my back. Think of all the time, shampoo, conditioner, and all those other products I used. Now? I don't need any of that—just some baby shampoo. 😍

feralridge3, I am so glad you were willing to be this honest.
I can't even begin to picture what it looks like. I'd guess that after radiation, it might take a bit longer for things to grow back compared to after chemo, but it eventually happens. From what I can tell, losing your hair hasn't crushed your spirit, and honestly, that's what matters most. 👍
How have you been doing lately, anyway? Is everything under control?

Nancy Hernandez43 said:Don't worry, your mother's hair will grow back, just like it has for everyone else who has gone through chemo and recovery. I just really hope this is the last time we have to deal with this and that our mothers can return to being the bright, vibrant people they were before getting sick.

I truly wish that for you too. Every single victory against this nasty disease feels like a win for all of us. It gives us strength and keeps us moving forward. I’m staying hopeful that we’ll start seeing more and more good news coming out of the medical community.

quietraven0 said:feralridge3, I honestly really appreciate you being so candid with us.
I can’t even begin to wrap my head around what that experience is actually like. I assume the recovery window after radiation might be a bit longer than it is following chemo before things start growing back, but eventually, it happens. It seems to me that losing your hair hasn't managed to dampen your spirit at all, and honestly, that's what matters most.👍
How have you been holding up lately? Is everything staying under control?

The oncologist mentioned that it takes about a year after radiation for hair to grow back, though there is a chance it might not return if the follicles were damaged. 😢
It’s been a year since I finished my radiation treatments, and my hair situation is exactly as I described earlier.
To be perfectly honest, I’m not holding my breath expecting it to fully recover. For now, it doesn't bother me, and I’m not even thinking about buying a wig yet. I’ll probably reconsider once I reach the stage where I'm heading back to work—though maybe I won't even need one then. With this look, I could probably scare off any animal in the woods.😁 😂

I’ve completed four cycles so far; I have two more to go, and I should be finishing up my Temozolomide chemo by mid-November. I had an MRI a month ago, and so far, nothing has popped up in my head that shouldn't be there.

A little more on the latest cancer research developments

quietraven0 said:I truly wish the same for everyone, because every single victory against this wretched disease feels like a win for all of us... It provides us with the strength to move forward, and I can only hope we see an increasing stream of good news...

Exactly so—every individual triumph feels deeply personal, though it remains painfully difficult to accept the losses of those whose struggles we have followed so closely...

It is a harrowing experience, yet we all emerge from these battles stronger... if only for ourselves and those we hold dear...

feralridge3 It appears there is no content provided to rewrite...
The oncologist informed me that it would take roughly a year following radiation treatments for my hair to start growing back, though he did mention the sobering possibility that if the follicles themselves sustained permanent damage, it might never return at all... 😢
It has been exactly one year since I completed my radiation treatments, and yet the situation regarding my hair remains precisely as I described previously...
To be perfectly honest, I am not placing much hope on my hair making a full recovery... For the time being, it isn’t really bothering me, and I have no immediate intention of investing in a wig. I might reconsider that once I reach the stage of returning to work, though even then, I may find it unnecessary; with the way my head looks right now, I could probably scare off any animal in the woods quite effectively... 😁 😂

I have completed four cycles thus far, with two remaining, which means I should be wrapping up my temozolomide chemotherapy by mid-November... I underwent an MRI about a month ago, and as of now, there isn't anything appearing on the scans that shouldn't be there...

Just trust that eventually, everything will find its way back to where it belongs... Still, given this particular dose of humor, it is quite evident that you possess a certain strength, and I suspect you will discover solutions even if your hair doesn't miraculously grow back in those spots... 👍

Update — I set up an appointment at ExxonMobil for some orthomolecular diagnostics. Our Association pooled enough funds to cover this testing—it's pretty pricey. $1133
I’m just hoping this gives us enough insight to help a friend tweak her diet and supplements; she needs to stay strong since chemo is right around the corner.
Speaking of which, people are driving me crazy. They keep treating her like she's already a walking ghost, and honestly, it's exhausting. It’s hitting her hard. I keep telling everyone to just act normal—like she’s perfectly healthy. She’s going to pull through—we have to believe that—especially since there are no metastases and her odds are actually great. She just needs to keep her head up and not slip into pessimism.
I'm worried about how the chemo will hit her. Is the hair loss really unavoidable???
I think it's going to take a massive toll on her mentally... 😢
She’s always been so proud of her hair. Losing it is going to be brutal...
Just awful...

Has anyone heard of Calivita? No one seems to have answered me yet...
I was thinking about trying their syrup to see if it helps manage some of the chemo symptoms...

What else should we be bracing for? What's coming next?
Are the nauseasies that bad right from the start?

Sarah Perez59 said:Update - I've scheduled an appointment over at ExxonMobil to run some orthomolecular diagnostics. Our Association pooled enough funds to cover this screening since it’s pretty pricey - $1133
I'm really pinning my hopes on this test providing enough insight so my friend can tailor her diet and supplements properly. The goal is to bolster her system before she starts chemo.
Regarding her situation, honestly, people are what get under my skin the most. They just treat her like she's already a walking corpse, and it's frankly appalling. She's finding it incredibly hard to deal with. I find myself constantly telling everyone to just act normal, like she’s perfectly healthy. Aside from that, she’s going to pull through—we have to believe that, especially since there hasn't been any metastasis and her actual chances for recovery are excellent. It’s vital that she stays positive too; we can't have her becoming the pessimist here.
I am terrified of how the chemo is going to hit her. Is the hair loss really unavoidable???
I think it's going to take a massive psychological toll on her... 😢
She has stunning hair, and it's always been her pride and joy. Losing it is going to be devastating...
Just awful...

Has anyone heard anything about Calivita? No one has gotten back to me yet...
I was thinking of trying their syrup to see if it might help ease some of the chemo side effects...

What else should we be bracing for? What's actually coming her way?
Are the nauseasies absolutely brutal right from the very first round?

Print out this brochure and hand it to her.
Everyone else, please forward the PDF via email.
Everyone is welcome to join the Association "New Day" if they want advice on how to interact with her or if they want to learn a bit more about what she's fighting.

Nancy Hernandez43 said:Just try to believe that everything will eventually fall back into place. Honestly, with that level of humor, it's clear you're a strong person—you'll find a way through this even if your hair doesn't grow back thicker! 👍

Hair loss is the least of my worries. 😉
Right now I'm actually reading that book, Against Cancer, the one the girls from the Association are always recommending.

feralridge3 said:Hair loss is actually the least of my concerns... 😉
Right now, I’m working my way through that American Cancer Society book that the ladies from the Association are always raving about...

👍

I tend to hover on the sidelines here, mostly because my own fears often leave me without the energy to truly engage. I don't spend my time poring over medical studies or reading thick textbooks; instead, I just find solace in reading your posts... My mother isn't much for reading either—she simply follows her intuition, listens to what her body tells her, and stubbornly pushes forward regardless of the odds.

Exactly two years ago, my father showed up at my door and uttered those heavy words: "I'm sorry, she won't make it, get ready..." and looking back, it really did seem that way. Today, after two years and six months since that initial diagnosis, following two grueling surgeries and two rounds of six chemotherapy cycles, she is still here, fighting selflessly by our side... (I suppose it’s selfish of me to say "we went through this," when I really should be saying "She is a warrior!")

She returned from her checkup tonight, and the next one isn't until late January. With every single follow-up appointment, the fear grows because it's so hard to fully trust the process... (it was stage IIIc ovarian cancer)... but for now, things are stable, and I am deeply grateful to God for that!

(I hope that perhaps, in some small way, I have shared a bit of strength with you all! Keep fighting—never give up...)

I’m looking for some advice on how to move forward here. I’ve posted about this before, but I need to revisit it. It concerns my father, who has been battling small cell lung cancer with metastases in his adrenal glands. We haven't done all the other scans yet. After his chemo, things didn't look better or worse—blood work and chest X-rays were basically stagnant. He fought through four months and four cycles of chemo with such incredible bravery, really holding his own, but after that last round, he just suddenly collapsed. In the ten days leading up to his fifth cycle, he wasn't eating or drinking much at all—maybe just a few ounces a day. Just the day before, he was sitting there with us, but by morning, he couldn't even move, let alone get to the car, so the paramedics had to come. Now, he's been on an IV for seven days and still refuses any food or liquid. He wants nothing. He moans quite a bit, too; when I ask if he's in pain, he says no. He always recognizes me, but we can't actually have a conversation. All I can get out of him is a nod or a shake of the head. The doctors say it has spread to his brain, though they claim there's no need for more imaging. He's getting pain management via patches and some sedatives, but nothing is changing. It’s not even clear to him that he isn't responding to the medication, though it seemed to me yesterday that he was a tiny bit more lucid and was moaning a little more.

Hey everyone

Does anyone actually understand why you can't just get a referral to see a specialist in another city for a second opinion? Apparently, it has to be requested by a family member now. On top of that, you can't just go once and then return to your original doctor. My mom is seeing specialists in New York City, but we wanted to head down to San Francisco for a second opinion, and now they're saying those results won't even count in NYC. They basically won't take her back. Does that make any sense? I am absolutely livid.

nimbletrucker72 said:I’m asking for some advice on what to do next. I’ve posted about this before, but I need to repeat it—my dad has small cell lung cancer with metastases in his adrenal glands. We haven't done all the other tests yet. His scans after chemo didn't show much movement—no improvement, no worsening—just steady blood work and lung X-rays. After four months of fighting and four cycles of chemo, which he handled incredibly bravely, he just suddenly collapsed. He hasn't eaten or drank anything—maybe two ounces a day—for the last ten days leading up to the fifth cycle. Just the day before, he was sitting right there with us, but by morning, he couldn't even move, let alone get to the car, so the paramedics came. Now he’s been on an IV for seven days and still refuses any food or drink. He’s moaning a lot; when I ask if he's in pain, he says no. He always recognizes me, but we can't actually talk—the only thing I get out of him is a nod or a shake of the head. The doctors say it's moved to his brain (metastases), but they claim there's "no need" for more imaging. He's getting pain medication via patches and something for sedation, but nothing changes. It's not like he understands why he isn't responding to the meds, though it seemed to me yesterday he was slightly more conscious and moaning a bit more.

So sorry about your dad. 🙂
It's the same story everywhere... "no need to scan"... I honestly can't believe it. 🙄 🙄
There is absolutely a need to scan... just so you understand how serious this is.
They told my mother the exact same thing back in San Francisco... "no need for imaging." Once we moved her to another state... they scanned everything and found she had brain metastases (even though there were no visible signs in her behavior, her motor skills, or anything else the brain controls).

And once things started going south... her hand started shaking, she lost her balance, and her speech got slurred.
If you can... push them to do a CT of the brain immediately.

Though, medically speaking, doctors feel it doesn't matter because the chemo is the same whether it's for the primary cancer or the metastases. Finding out if there are brain metastases won't change his treatment plan—they already know that based on their diagnosis. They're just being cheap. 😢

Look, I’m just gonna come out and say it...
I’ve been scrolling through all these complaints about doctors—their "expertise," how much they actually care, the service... it's pathetic.😠
It honestly makes my blood boil just thinking about it. Reading these comments just fuels this massive urge I have to go confront them myself,🙂 to look them right in the eye, spit in their faces, and tell them they’re the most miserable, soul-less excuses for human beings I’ve ever met...😠
I know it won’t bring my dad back, but man, my soul would feel so much lighter for it.
If I had enough people backing me up, I’d probably march through the streets of New York City and rally the whole damn town to help me drag the truth out into the light and call these people out for exactly what they are. 😠
That said, there are exceptions. To the good ones? Major respect. Hats off to you.🙏
My blood pressure is through the roof right now.

Stay safe, everyone. Keep fighting—for yourselves and for the people you love...👍

Now my own nightmare is starting all over again with my mom... I’m waiting on test results every single day. Maybe I’ll FINALLY be the one posting some actual good news for once. 🎉

Sending love. Hang in there.😘👋

casualrider21 said:I feel compelled to interrupt this thread abruptly...
As I sit here reading through all these complaints regarding doctors—their supposed expertise, their lack of genuine interest, the quality of service provided...😠
It fills me with such a profound sense of resentment when I reflect on everything, and seeing these comments only serves to fuel my desire to confront those individuals personally, 🙂 to look them in the eye and tell them they are quite possibly the most pathetic excuses for human beings I have ever encountered...😠
I am fully aware that doing so won't bring my father back, yet I cannot help but feel it would grant my soul a modicum of peace.
If only I had any support, I suspect I might actually rally the entire city to join me in exposing the truth and calling out those responsible... 😠
Of course, there are exceptions to these rules... and for those rare professionals, I hold nothing but the utmost respect.🙏
At the moment, my blood pressure is through the roof.

Please, take care of yourselves and continue to fight, both for your own sake and for the people you love most...👍

My own ordeal continues now with my mother... I find myself waiting for test results every single day, hoping that perhaps I will FINALLY be the one to share some good news. 🎉

Sending love. Hang in there.😘👋

Unfortunately, one wishes they could right the wrongs of the world, and if one hasn't been able to do so for themselves, then at least for others. But even then, one is left with that same bitter residue from remembering how much we are forced to struggle for our most vital asset: our health.

Now it is your mother's turn, and I sincerely hope you reach out soon with positive news—we could all use a little more positivity and good energy in our lives... kisses 😍

casualrider21 said:I need to just come out and say it...
Reading all these complaints about doctors—their competence, their lack of care, the way they treat people...😠
It makes my blood boil when I think about it all. These comments just fuel this burning desire I have to confront them personally, 🙂 to look them right in the eye and tell them they are the most pathetic, soul-crushing excuses for human beings I've ever encountered...😠
I know that won't bring my dad back, but man, would it give me some peace of mind.
If I had enough support behind me, I’d probably rally the entire city to rise up so we could drag the truth into the light and give those people exactly what they deserve. 😠
That said, there are exceptions. To the good ones out there: I tip my hat to you.🙏
Right now, my blood pressure is through the roof.

Stay strong, everyone, and fight—for yourselves and for the people you love...👍

Now my own nightmare continues with my mom... I'm waiting on her test results every single day, and maybe, just maybe, I'll finally be the one posting some good news. 🎉

Sending love. Hang in there!😘👋

Dear casualrider21, your reaction is totally understandable. But look, there are two sides to every coin. In our work at the Association, we actually collaborate quite a bit with physicians who have truly poured their hearts into this. They're constantly being hounded by hospital administration, the government, and Medicare with budget cuts and mindless bureaucracy. They're backed into a corner, their intelligence and expertise are insulted, and they aren't even allowed to practice medicine according to the Hippocratic Oath. They're essentially paralyzed, often facing the threat of being fired if they try to fix even one small thing.
Sure, there are terrible people in the profession, but most of them are just regular folks like us who are simply breaking under the pressure.
I am so incredibly sorry for everything you've been through, but this is all just the end result of a rotting system that starts at the very top. Doctors and patients are just tiny pieces of that massive chaos.