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Support resources for families dealing with cancer and other serious illnesses

Started by James Cox6 · · 👁 241 views · 3.9K replies

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Participants James Cox6Lisa White54shadowmason6Angela Wrightbrightgardener8Melissa Moore39James Martinez3Grace Stewart6Megan Fowler78Zachary Howard2Ashley Rodriguez41Douglas Lee13rowdyheron17placidheron24slyseal28jadesailor14Michael Newman3jadetinker42Benjamin Grant6wanderingharbor61cosmicviper76Dana Baker37Jason Torres5Peter Chavez6 …
Hannah Taylor76 Hannah Taylor76 Newcomer
2 messages
joined Sep 2011
#2721 ·
In my family, uterine and ovarian cancer is practically part of our DNA. Thankfully, everyone has managed to beat it... My aunt had everything removed, my mom, my grandmother, even my grandmother's sisters... As for me, I'm only 24, but I've already started dealing with issues like polyps... though I've successfully taken care of those...
Today, I received news that a dear friend is losing his battle with cancer... there really aren't any words of comfort for that... he fought just as hard as all of you have... I know how to help, but the tumor has to be caught in its early stages... it can linger for a while, but the person shouldn't have to endure endless rounds of chemotherapy... I won't go into too much detail publicly, but please, if you need anything, feel free to contact me; I'll explain everything I can, dear hearts...
I mainly came here to offer some support, and perhaps even a fighting chance to someone, whether it's through financial assistance or various charitable organizations... bless your hearts...
And maybe I also came here because I am just so incredibly heartbroken over him 🙂 because just four days ago, we were joking around and laughing together... and now, we are simply waiting... waiting for the moment he leaves us...
Kenneth Gonzalez7 Kenneth Gonzalez7 Newcomer
7 messages
joined Nov 2008
#2722 ·
Hannah Taylor76 said:Uterine and ovarian cancer is basically baked into my family tree—it’s just one of those things we deal with. Thankfully, everyone has managed to beat it, thank God. My aunt had everything removed, my mom, my grandma, even my grandma's sisters... it's everywhere. I'm only 24, but I've already started seeing issues like polyps popping up. Luckily, I got those taken care of without any trouble.
Got word today that a friend of mine is losing his fight with cancer... there really aren't any words that help at this point. He was fighting just as hard as all of you—really giving it everything he had. I know people talk about ways to help, but let's be real—with cancer, it really has to be caught in those early stages to stand a chance. It can linger for a while, sure, but you can't have someone going through endless rounds of chemo forever. It's just brutal. I wouldn't want to make too much of a scene about this in public—it's just not my style—but look, if any of you are feeling lost or just need some clarity, please, feel free to reach out. Seriously, don't be shy; you can all contact me anytime, and I'll do my best to walk you through it. My heart is truly in the right place here, and I'm happy to explain everything.
I’m just dropping in here to let you all know I’ve got your backs—honestly, I just want to offer some support. And hey, if there's any way I can help out financially through some of the local non-profits or community associations... well, my heart goes out to you all. Just know you aren't alone in this.
Maybe I should just hop on here and write something out... honestly, I'm just feeling incredibly sad about him right now. 🙂 Because just four days ago, we were all just joking around and laughing... and now? Now we're just sitting here waiting... waiting for everything to fall apart.

Hey, shoot me a DM about this Boldan stuff, please!
vividsailor7 vividsailor7 Active Member
217 messages
joined Sep 2011
#2723 ·
Kate Brooks2 said:Hey everyone! I'm back again with more updates and more headaches. We actually managed to get his white blood cell count up from 2.6 to 7.2 by this third cycle, which felt like a huge win. But then today, they ran an EKG and told us his heart rate was racing. They couldn't even explain why! They just handed him some pill and decided to push ahead with the treatment anyway... Honestly, I am completely lost right now.

It’s critical to know what kind of medication they gave him, what his actual heart rate was, and if there were any specific abnormalities on that reading—like PVCs, SVTs, or AFib. Best regards.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#2724 ·
vividsailor7 said:It really comes down to what kind of pill it was, how high the heart rate actually climbed, and whether there were underlying issues involved—like PVCs, PACs, or AFib. Best regards.

If there isn't an existing heart condition on the table, they usually just toss a Normabel at you to see if it brings the rhythm back down. They typically won't even consider pivoting to a different therapy unless that fails to do the trick.
vividsailor7 vividsailor7 Active Member
217 messages
joined Sep 2011
#2725 ·
Angela Wright said:Unless there's already some underlying heart condition, they usually just throw Norvasc at you to see if it settles things down. They only really consider switching up the therapy if that doesn't do the trick.

Exactly, and it’s happening alongside an existing heart condition.
hollowmarlin66 hollowmarlin66 Newcomer
1 message
joined Sep 2011
#2726 ·
Hannah Taylor76 said:Our family deals with uterine-ovarian cancer in our genes; everyone has successfully beaten it, thank God. My aunt had everything removed, my mom, my grandma, even my grandma's sisters... For me, it just started showing up as issues like polyps when I was only 24, but I managed to get those taken care of...
I was just told today that a friend is losing his battle with cancer... there's really no comforting words for this... he fought just as hard as all of you have. I know how to help, but the cancer needs to be caught in its early stages... it can linger for a while, but the person shouldn't have to go through endless rounds of chemo. I won't say too much publicly about this, but please feel free to reach out to me; I'll explain everything to you dear hearts...
I mainly came here to offer support, and maybe even a chance for someone if I can help financially through certain organizations... dear hearts...
And maybe I also came here because I am just so heartbroken over him 🙂 because just four days ago we were just joking around and laughing... and now we're just waiting... for him to leave us...

You say you know how to help, but what about your friend and his struggle?
Yes, I’m being blunt, but I assume you're referring to alternative medicine, which is something I’m particularly sensitive to and have a strong aversion toward.
Hannah Taylor76 Hannah Taylor76 Newcomer
2 messages
joined Sep 2011
#2727 ·
hollowmarlin66 said:You’re asking for help, but what about your friend and their struggle?
I realize I’m being blunt, but I suppose it boils down to an alternative approach—something I am particularly sensitive to and, frankly, have a strong aversion toward.

Unfortunately, they passed away yesterday... considering they fought this disease for six years, dealing with metastasis through more than four lung surgeries and various rounds of chemotherapy... it was just too late. It’s a shame you have such an aversion to that kind of medicine... but of course, everyone is entitled to their own perspective. Personally, I don't have the luxury of keeping my distance anymore.
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#2728 ·
feralridge3 said:Well, my friends, I have to admit... I was quite skeptical at first, but here we are... 😉
If you don't recall, I underwent a brain MRI back in May, and the results suggested that a recurrence might be on the horizon. Consequently, chemotherapy was prescribed... However, I went ahead and paid for a follow-up scan this past Friday, only to find that my metabolic levels have shifted, and now the report states quite clearly, in black and white, that there is no sign of any recurrence in sight...
Honestly, there aren't enough words in the English language to truly capture the sheer, overwhelming relief I felt when they finally told me the malignant cells had retreated... 🙂🙂

It always brings me such immense pleasure to hear news of this nature... It truly feels like a second birthday for you, now that everything is finally back under control after all you've been through...

Hang in there, enjoy the moment, and please... don't forget to conserve your strength...
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#2729 ·
I haven't been around here for very long, but things aren't looking much better back home... unfortunately... the number of people in our family dealing with illness just keeps climbing...

yet every single battle, every new hardship, every ounce of effort and willpower only serves to make us stronger...

Right now, we are looking for a supplement to help bolster the body's defenses. We used to rely on Ensure... could someone briefly outline the process for getting it, where it might be more affordable, and any other essential details that doctors typically fail to mention?

Thanks in advance, and hang in there, fighters!
gentlemoose62 gentlemoose62 Active Member
105 messages
joined Jul 2008
#2730 ·
Nancy Hernandez43 said:I haven't been around here long, but things aren't getting any easier back home either... honestly... the number of people sick in our family keeps growing...

But every fight, every new struggle, every ounce of effort and willpower just makes us stronger.

Right now, we really need a supplement to help boost the immune system. We used to use Ensure... can someone briefly explain how to get it, where it's cheapest, and any other important details doctors usually leave out?

Thanks in advance, and hang in there, fighters!

👋 Hey, you've been gone a while! I was actually thinking about you and your mom the other day. How is she doing? Is she still going to Aviano? And did that issue—the swollen lymph nodes, right?—did that end up being a recurrence or is everything still okay?
I'm so sorry to hear someone else in your family is dealing with this, but I really hope there's still ways to help!
A specialist should recommend Ensure (or Prosure if they have diabetes), and then your primary care doctor can write the prescription. Don't spend your own money on it unless you absolutely have to!
It’s basically a complete meal replacement and can be taken 2-3 times a day, but your specialist will give you the exact plan. Personally, I used to love those tasty fruit purees made for kids...😛
The main thing is that it tastes good and is easy on the stomach.
Hang in there, and please check in on Zanovidan once you're settled!😉
Kate Brooks2 Kate Brooks2 Active Member
74 messages
joined Aug 2011
#2731 ·
vividsailor7 and Angela Wright, I truly appreciate your responses and the fact that you’re standing right here with us through this. My father-in-law has been getting his treatment on schedule for three days now, and after two more days, they’ll be running all the tests and scans again to see exactly how he’s responded to the chemotherapy so far. I am desperately hoping it has managed to wipe out as much of that godforsaken cancer as possible. We’ll just have to wait and see what the next steps are. Sending my best to everyone here—I'll be back in touch soon.
Kenneth Gonzalez7 Kenneth Gonzalez7 Newcomer
7 messages
joined Nov 2008
#2732 ·
Kate Brooks2, that’s wonderful news for you guys👍 I'm crossing my fingers that everything turns out okay.

A good friend of mine starts a five-day stretch of radiation at the tumor institute tomorrow.
They couldn't go the Gamma Knife route because the tumor is about 4cm—just too big for that.
If the radiation can shrink it down a bit, they might try Gamma then.
I mentioned CyberKnife to her, too. A colleague of hers has a connection over in Germany, so she’s going to look into all the options, but honestly, she’s ready to do whatever it takes.
She’s giving it everything she's got.

Quick question for the group—is there supposed to be a specific gap of time required between MRI scans?
She had her last one somewhere around the beginning of last month; do you think she could head back in for another MRI this month, right after she finishes the radiation?
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#2733 ·
Emily Edwards19 said:Kate Brooks2 I'm keeping my fingers crossed that everything turns out okay.

A close friend of mine starts a five-day stretch of radiation tomorrow at the local tumor institute.
They couldn't go the Gamma Knife route because the tumor is sitting at about 4cm.
If the radiation manages to shrink it down, they might revisit the Gamma Knife option.
I also mentioned CyberKnife to her; a colleague of hers has some connections over in Germany, so she’s going to look into all the options, but she’s ready to pull the trigger on whatever is necessary.
She’s willing to try absolutely everything.

I was wondering, though—is there supposed to be a specific gap in time between MRI scans?
Her last MRI was sometime early last month; could she, for example, head back for another one this month right after finishing her radiation?

An MRI doesn't involve radiation the way a CT scan does, so there shouldn't be any issue there.
Kenneth Gonzalez7 Kenneth Gonzalez7 Newcomer
7 messages
joined Nov 2008
#2734 ·
Angela Wright said:An MRI doesn't blast you with radiation like a CT scan does, so there shouldn't be any issues there.

Oh, awesome, thanks sooooo much.
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#2735 ·
gentlemoose62 said:👋 hey, you've been gone for a while, and I was actually thinking about you and your mom just the other day. How is she doing? Is she still going to Aviano? And that issue—if I recall correctly, the swollen lymph nodes—did that end up being a recurrence, or is everything still holding steady?
It breaks my heart to hear that someone else in your family is dealing with this, but I truly hope there are still ways to help...
A specialist should recommend Ensure (or Prosure if they are diabetic), and then your primary care physician can write the prescription; please don't pay out of pocket unless it's absolutely necessary...
It’s meant to be a complete meal replacement and can be taken two or three times a day, though a specialist would be the one to prescribe that specific regimen. Personally, I used to find those nice fruit purees for kids quite palatable...😛
The most important thing is that it tastes good and is easy on the stomach.
Hang in there, and please try to check in on Zanovidan once you've settled in...😉

Thank you for responding... yes, Ensure. We will definitely go through the prescription route, as buying it outright is such an expensive undertaking. Since we are already managing tube feeding for one person, we remembered that Mom used to rely on Ensure whenever she felt weak...

And thank you for asking. Regarding Mom, it turns out it was a third recurrence in the lymph nodes, which is inoperable, and she’ll be finishing her sixth round of chemotherapy in this new cycle in about three weeks. They have her on a new protocol that she seems to be tolerating okay, but she isn't much of a talker and rarely complains, so honestly, aside from what I see with my own eyes, I really don't know how she's truly holding up...

I rarely get the chance to get online since I can't do it at work, and I feel so disconnected from everything lately that I worry I might not be able to help others as much as I'd like, which is a shame... If I get the opportunity and have more information, I will certainly reach out...

Stay strong, fighter...
gentlemoose62 gentlemoose62 Active Member
105 messages
joined Jul 2008
#2736 ·
Hey Nancy Hernandez43! Ugh, I am so incredibly sorry to hear about the recurrence. But listen, you know as well as I do that this doesn't mean remission is off the table. Honestly, if she’s already on her sixth round of chemo, it means her body is responding well and she's actually making progress toward getting back to remission! How did her markers look when the recurrence happened?
Remember me—I dealt with two recurrences in my lymph nodes. I'm thinking of you guys all the time, we're in this together... If there is absolutely anything I can do, or if she just needs someone to talk to... I'm right here, we'll just figure out a time, okay? If she wants, I can send my number over via DM.
In any case, I'm crossing my fingers😉 that she powers through this sixth round and finally puts this thing to rest for good!
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#2737 ·
gentlemoose62 said:Hey, Nancy Hernandez43! Honestly, I’m so sorry to hear about the recurrence, but you know as well as I do that this doesn't mean remission isn't possible again. In fact, if she's already on her sixth round of chemo, it suggests she's responding well and might actually be heading toward remission right now. How did her markers look when the relapse occurred?
Just remember me—I dealt with two recurrences in my lymph nodes. I think of you all often; we are in this together... If there is any way I can help, or if she ever feels like talking... I am here, we just need to coordinate, okay? If she wants, I can leave my number in a private message.
In any case, I’m keeping my fingers crossed😉 that she powers through this sixth round and that the damn thing finally leaves her alone for good.

Thank you from the bottom of my heart, and truly—there is no need for pity. My mother isn't exactly the type of person who opens up to everyone, and as far as the illness goes, we collectively decided that it isn't something we discuss. Mentally, like anyone else, she has her ups and downs, but she remains incredibly stubborn in her fight. As for how she handles the treatment, it's debatable. If only she were honest herself, we would know much more (don't take this the wrong way, but the doctors only speak directly with her and she doesn't really pass the details along; my father doesn't participate in the consultations because she never asks him to, and the doctors know he doesn't speak Italian, so they try to spare him)... From what I can see so far, the markers aren't dropping, though her blood work is fine; it's only due to her own obstinacy that her cholesterol and triglycerides have spiked.

Since her battle has been going on for such a long time, and like everything else, there is no clear end in sight, it isn't easy to start this same repertoire of conversations every single day. Right now, our focus is split with another patient—a very young woman who has been fighting for her life for two months now over things that seem almost trivial...

So, my mother is in the best hands—the doctors at Avian are still professionals and are monitoring everything, so we aren't panicking. At least, I'm not panicking, because my life has turned into a constant cycle of work, home, work, and I barely have the headspace to even contemplate what comes next. Ultimately, you know yourself that every day is a blessing, and happiness lies in knowing you gave everything you could and received the best possible outcome. It would be a tragedy if we had simply left things to chance instead of fighting the right way. The hardest part is that if we are to worry about anything beyond our own struggles, it is either my mother or this young woman currently under our care. My fear is that we will all slowly lose our own strength because, in these battles, we tend to forget ourselves, and that isn't healthy either...

Regardless, thank you for every word and every bit of advice. All I know is that every one of us should strive to be a fighter, just like you...
Peter Mendoza6 Peter Mendoza6 Member
13 messages
joined Feb 2005
#2738 ·
I’ve posted here a few times before, but now I just want to say—to everyone fighting this: hang in there. Every single moment matters.
Sadly, my fighter lost his battle, and last Monday, those blue eyes closed for the very last time.
Angela Kim3 Angela Kim3 Newcomer
2 messages
joined Jun 2011
#2739 ·
So, which line of treatment actually uses FOLFOX, FOLFIRI, and Xeloda?
vividsailor7 vividsailor7 Active Member
217 messages
joined Sep 2011
#2740 ·
Robert Grant84 said:In which line of treatment are they using FOLFOX, FOLFIRI, and Xeloda?

Are we talking about colorectal cancer here?
Stage three carcinoma.

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