Support resources for families dealing with cancer and other serious illnesses

feralridge3 said:When you look at the trajectory toward the end, a sudden exit almost feels like hitting the jackpot on a lottery ticket. 🤷
I’d honestly rather be taken out quickly than endure a slow, agonizing grind for a year or two.
I know my diagnosis isn't quite there yet, but there's this little worm crawling around in my brain every now and then, stirring up fear.

It’s a grim progression, sure, but as long as you're still breathing, you have the chance to participate in clinical trials that could grant you more time—more years followed by even more years thanks to the next breakthrough, and so on.
That's just how people function out in the real world. We see endless stories on global forums about people dealing with these kinds of tumors everywhere, and there are people living fifteen years on that exact same path.
Cancer is a chronic condition, plain and simple. The whole goal is to refine medications to the point where you can manage that chronic illness and live a full life alongside it.

..Greetings to everyone... it is currently 5:00 in the morning, and sleep remains an elusive stranger..

..To provide a brief overview: back in the summer of 2009, my mother suffered two epileptic seizures; however, both her CT scans and MRI with contrast were entirely normal by September, leaving the doctors quite puzzled as to the underlying cause. She was scheduled for a follow-up MRI in March of this year, but she decided to get ahead of things and underwent another MRI with contrast on January 29th. This time, they discovered a tumorous mass in her brain. Following a biopsy, it was confirmed just two months later that we are dealing with a glioblastoma. She underwent surgery three weeks ago, and the primary surgeon informed us that they managed to resect everything up to the healthy tissue—they described the tumor as being roughly the size of a hazelnut. We have already consulted with her oncologist, and now we are simply waiting for her chemo and radiation treatments to commence in a few weeks. The initial therapy should last about six weeks, followed by a year of cyclical treatment—twenty-three days of rest followed by five days of chemo.

..It truly feels like the worst possible thing that could happen to my mother or to any of us; life can shift on its axis in a single heartbeat, leaving us feeling utterly powerless.
..I would be deeply grateful if someone could share more information regarding glioblastoma—how one is supposed to cope with such a diagnosis, what kind of prognosis we might realistically expect for my mother, and so on.

..Thank you all for your assistance.. and I try to remain positive through it all, as there really is no other way to live. 🙂

ambertrucker9

feralridge3 said:🙂
The waiting is brutal. 😲
I don't know how you do it. 🙏
Both of my surgeries had two or three week waits, and I was losing my mind just anticipating them. Even a one-day delay felt like the end of the world. 🙄 From what I recall, you've been waiting months for this procedure now.
Is the tumor growing?
Hang in there. 🙂

🙂 How are you doing? Where are you at in your treatment?

I'm still stuck in this waiting game...😕

My last MRI scans were back in May of last year when they found the recurrence. It had been a year since my surgery, and the tumor had grown back to almost its previous size. Who knows what’s happened over this past year? Has it grown more? 🤷 I honestly don't know.
The wait is getting harder to handle because it's all dragging on so long. It's only natural that I have bad days.
Thinking about how much a positive attitude and sheer willpower can actually change things helps me get through. When I arrived at the hospital two years ago for my pre-op scans, the doctors were shocked I could even walk in under my own power. The tumor was pressing on my spinal cord and nearly paralyzed me. That recovery was down to my refusal to give up and my drive to stay on my feet.👍
So, I'm wishing you strength and a positive mindset. Having a rough day here and there is totally normal.
Stay strong. 👍

I’m looking for some insight from anyone who knows more about this devastating disease. My mother was diagnosed with multiple myeloma last December—it actually took them two months just to get to a definitive diagnosis. The disease had already progressed quite a bit; her bone marrow biopsy showed massive plasma cells. She’s completed four rounds of chemo and one round of radiation so far, and honestly, she’s handled the treatments remarkably well. Right now, she’s headed to Mayo Clinic for a stem cell transplant. I’m trying to wrap my head around the reality of this condition—what does the typical life expectancy look like, and what kind of road lies ahead for us?
Thank you.

Maria Lee54 said:🙂 How are you doing? What stage of treatment are you currently in?

As for me, I’m still stuck in this endless waiting game...😕

My last MRI scans were done back in May of last year, which is when they confirmed the recurrence. At that point, it had been a year since my surgery, and the tumor had grown back to nearly its previous size. As for what has happened over this past year—who on earth knows? Whether it has grown further 🤷 I have absolutely no idea.
The waiting is becoming increasingly difficult to bear because this whole ordeal has dragged on far too long, and frankly, it’s perfectly normal for me to have some incredibly rough days.
What helps me get through is the personal conviction I hold that a positive attitude and sheer willpower truly can work miracles. When I arrived at the hospital two years ago, the doctors were actually stunned by the preoperative scans—they couldn't believe I had walked into the facility on my own two feet. The tumor was pressing against my spinal cord, nearly leaving me paralyzed. That initial success was a direct reflection of my will and my refusal to give up; I fought to stay on my feet.👍
So, I want to wish the same for you: plenty of goodwill and bright thoughts. Having an occasional bad day is completely natural.
Hang in there, 👍

🙂

I am currently in the recovery phase. 🙂
It’s almost been two years since this whole parade began. I finished my Temozolomide chemotherapy about four and a half months ago, and now I'm just trying to get my life back to some semblance of normalcy. Physically, I’ve improved because I make sure to exercise regularly, and mentally, I feel better and more stable. I’m a little less scattered and chaotic than I was five months ago. The only area where I don't see any real progress is my memory. It feels like there's a massive draft blowing through my head. 😍

I had an MRI in the middle of January, and the results were good.
I’m heading back for another one in mid-May.

I’m happy because I can finally get out into the mountains again. That is really what keeps me going right now. I look forward to every single new hike, and that’s how I live—just living from one trip to the next.
Hopefully, my memory will return eventually. It really makes no sense to meet someone like Buddy and then immediately forget that we even met. 🤣

Brenda Thomas96 said:I am asking for help from anyone who knows more about this malicious disease. My mother was diagnosed with multiple myeloma last December. It took them two months to reach a diagnosis. The disease had progressed significantly; her bone marrow biopsy showed giant plasma cells. She has completed four rounds of chemotherapy and one round of radiation. She tolerated all treatments exceptionally well. Currently, she is heading to Mayo Clinic for a stem cell transplant. I want to understand more about this illness—what is the life expectancy, and what should we expect moving forward?
Thank you

🙂

http://www.mijelom.net/

This website contains a wealth of information regarding myeloma. Does your mother have any bone lesions? Which immunoglobulins are involved? What specifically did the doctors say? I assume Dr. Nemet is overseeing 😕
I don't know your mother's age, but this is typically an illness affecting older adults over 65; you rarely think to look for it in younger people. Though, I must admit, I have been hearing about younger cases lately; the youngest case recorded so far was 27 years old.
My father suffered from this, so if there is anything not covered on that link or if you have specific questions about the disease, feel free to ask here or send me a private message. I am happy to help with whatever information I can provide. 🙂
In my father's case, it took a year and a half from the onset of the first non-specific symptoms until he received a diagnosis. Compared to that, two months is actually quite fast.

Hey there,
My mom is dealing with metastases in all her bones after fighting breast cancer for 15 years. To be honest, I’m pretty livid because her oncologist didn't bother sending her for marker tests for several years. By November 2007, her CA 15-3 was at 26.81, which is way over the limit. We were clueless back then—we didn't realize we had to stay on top of the specialists ourselves. Now we know better, so I guess I'm playing "internet doctor" to make sure nothing else slips through the cracks.😠
Sorry for the sarcasm, but even this past fall (2009), Mom went to see her oncologist to complain about this constant, shifting pain that moves all over her body. And what does the doctor do? Nothing. She didn't even order the markers by the end of 2009, just brushed it off saying everything looked fine and the mammogram was okay.😢
Mom just finished her first round of chemo, has two more to go, and will be doing four radiation treatments. Does radiation actually help with the pain?
The pain is our biggest hurdle right now. It’s brutal—it’s especially bad if she tries to lie on her back or stays still for too long.😢
Has anyone ever heard of Naltrexone or tried using it?
Also, how is Sevredol for pain management? Or are those Durogesic patches actually better?
She took some Sevredol for a few days, but once the chemo hit, she couldn't keep anything down because of the vomiting. It feels like none of it is touching the pain. Do these medications take a while to actually start working?
I’m really hoping someone with more experience can help me navigate these dilemmas.
Thanks in advance🙂

Angela Wright said:Jerak is a chronic condition. The whole point of medicine is to refine treatments to the point where you can actually manage and live with the disease.

Look, I just hope that with something this heavy, we can at least get to a place where living with it for a few years feels manageable.

dustyrider9 said:Hello,
My mother is dealing with metastases in all her bones, fifteen years after being treated for breast cancer. To make matters worse, her oncologist neglected to order the necessary markers for several years; by November 2007, her CA 15-3 levels were at 26.81, which is well above the acceptable limit. We didn't realize back then that we needed to be more proactive in managing her specialists. Now we know, so I'm essentially "educating myself via the internet."😠
Forgive the irony, but even this past fall (2009), she saw her oncologist to complain about intense pain that shifts locations every single day, yet the doctor still failed to order the markers through late 2009, claiming everything was fine because the mammogram looked okay.😢
Mom has finished one round of chemo, has two more to go, and will undergo four radiation treatments. Does radiation help reduce pain?
The pain is our biggest struggle right now; she can only find relief if she lies perfectly still on her back.😢
Has anyone heard of or used Naltrexone?
How effective is Sevredol for pain compared to Duragesic patches?
Mom took Sevredol for a few days, but she couldn't continue after chemo due to vomiting. It feels like nothing is actually touching the pain. Do these medications require long-term use before they start working?
I am asking anyone with more experience to help me navigate these issues.
Thanks in advance.🙂

This is a tragedy. Such negligence and sheer carelessness. I am truly sorry. 😢

Yes, radiation is intended to reduce pain, among other things, and in your mother's case, I believe that should be the priority. Bone pain is some of the most brutal pain there is. 😢

Essentially, Sevredol and the patches serve the same purpose. Sevredol is morphine, while the patches are morphine analogs that typically require a lower dose than the Sevredol tablets. Duragesic is excellent because it protects the digestive system, and once you apply the patch, it lasts for three days—you don't have to worry about specific pill timings. Furthermore, your mother will likely deal with nausea from both the chemo and the radiation, so bypassing the oral route would be a smart move.

Naltrexone is used for treating alcoholism. It won't help here.

You must consult with a specialist regarding these analgesics; there are many different formulations and methods of administration.
Your mother's current dosage is likely low—I don't even know what the dosage is—but analgesic dosages will increase over time. In my opinion, the patches are great; ask her doctor about them. Once she starts radiation, the pain should subside significantly.

Does anyone actually know if an oncologist is required to send a woman with breast cancer that’s spread to the local lymph nodes for a bone scan?😕 It’s always been such a mystery to me... I see so many women getting those scans, but nobody ever suggested one for my mom🤷, and then at the very end, a CT scan reveals there were metastases in her spine and ribs all along?

I also had another question—Angela Wright, do you happen to know what the deal is with that colorectal cancer screening program? I have this feeling like things have stalled. Specifically, I’ve heard that some people received their notices while others didn't... For instance, my dad never got anything in the mail.

redharbor23, thanks for the advice and for being there for me. My dad went to the urgent care clinic today because his pain was getting unbearable, hoping they could actually do something about it. They just gave him some patches, so I’m really crossing my fingers that they actually work. It kills me that I can't spend more time with her. I've got a 3-month-old in my arms right now and a 2-year-old at home who's basically a little whirlwind, so it's just been us girls lately. When I do manage to get over there with the kids, she lights up seeing us, but man, it wears me out. Anyway, I'm typing this one-handed while holding the baby.
If she had just gone in to have those markers checked back in late 2008, things would probably look a lot different by now. Her levels are through the roof, and if they'd caught it then, we'd have had so much more time and a much better shot.😢

dustyrider9,

The pain management clinic is reliable. They know their business. I assume they’ve already walked you through the specifics of using the patches. Regarding side effects, much of it depends on the individual, but don't be caught off guard by heavy sweating or constipation. You can adjust the dosage of the patches as needed, but do it gradually in 25μg increments.
I can only imagine how difficult this is for you. You want to be in two places at once, but with a baby, that’s impossible. And your mother is exhausted—dealing with the pain, the chemo, everything. It’s brutal. It’s a grim situation, but the priority right now is simply making sure she isn't suffering.
Hang in there however you can. There isn't much else to say. 🙂 If you need any advice, I'm here. I wish I didn't have to know about this, but life doesn't give you a choice. 😉

redharbor23, thank you so much for the advice and all the support... It really means a lot. My dad actually went into the clinic near Downtown today to see if they could get his pain under control better, and they gave him some patches, so I'm just crossing my fingers that they provide some relief. Honestly, the hardest part is feeling like I can't be there for her as much as I want to be. I’ve got a three-month-old baby in my arms right now, plus my two-year-old who's home with us, and since it's usually just us girls, things get pretty overwhelming... even though seeing the kids always cheers Mom up, it's also just so exhausting for her. So, if I'm typing this a bit sporadically, it's because I'm currently holding a tiny human...
"If she had just had those markers checked back in late 2008, they almost certainly would have caught something by now, especially since they're so high today, and they would have had so much more time and a much better chance"😢

First off, I honestly don't know what to say... I went through something very similar quite recently, and man, it was a whirlwind...😢😢😢 Just try not to let those marker numbers drive you crazy, because they can be such a fickle thing. Back in November 2008, my mom's CA 15-3 levels were at 3 25, and then just three months later, when everything really started escalating, they jumped to 250. And after that, everything seemed to stabilize for a while. Just focus on making Mom as comfortable as possible right now. Sending you so much strength...🙂

Thanks, everyone.🙂 Do you guys go super strict with what you eat? I’ve been reading that cutting out meat, dairy, and eggs is the way to go—maybe sticking to stuff like flaxseed oil instead. Does anyone have any actual, practical diet tips? Sorry for grilling you all, it’s just that I spend every single night glued to my laptop, digging through books about cancer research. It’s hard to find time to actually process everything when I’m stuck doing a million chores after the kids finally crash.
I honestly wish I could go back to a time when my biggest worry was☕. I feel like I’ve fallen headfirst into some alternate reality. I know everyone on this forum is going through hell, but this hit me so fast. Between having a newborn I’m basically raising solo because my mom can barely help, and an older kid who doesn't get why things are weird, plus my husband facing job instability... it's a lot. I know this isn't really what this forum is for, so I promise this is the last time I’ll go on a massive vent session like this. Honestly, I am grateful that my kids are healthy, and I just hope that we—including my mom—all make it to the end of this year in one piece, because it feels like the news is just one bad headline after another lately. I’m not looking for advice on this part, I just needed to get it out before I lost my mind. Thanks for listening.🙂

dustyrider9,

Just keep talking. 🙂 This space exists specifically so people can vent. It’s never just one single issue, either; suddenly, you're hit with a hundred different problems overnight. I don't understand how it works, but it seems like everyone experiences this—as if someone forcibly ejects you from your own life and drops you into some parallel universe where nothing makes sense anymore. Eventually, you get used to it because that becomes your new reality.

As for nutrition... there is an endless amount of advice online and in books, all over the place. What I do remember is that citrus was off-limits during chemo; after a transplant, my father could only eat cooked foods, and we had to buy bottled water. Beyond that, 🤷 some people switch entirely to macrobiotics. Whether that actually helps, I can't say, but my view is simple: eat whatever feels right and whatever you can manage. Appetite is non-existent after radiation anyway. It takes time to recover.

redharbor23 said:🙂

http://www.mijelom.net/

This site is packed with info regarding myeloma. Does Mom have bone lesions? Which immunoglobulins are we talking about? What was the doctors' take? I'm assuming Dr. Nemet is overseeing her care 😕
I’m not sure how old Mom is, but this is generally a disease that hits people over 65—it rarely crosses anyone's mind to look for it in younger patients. Though, I have to admit, I've been hearing about younger cases lately; the youngest I know was only 27.
My father dealt with this, so if there is anything you can't find on the link or if you have questions about the illness, please feel free to ask—right here or via PM. I am more than happy to help with whatever information I can. 🙂
For my father, it took a year and a half from those first vague symptoms to actually getting a diagnosis. Compared to that, two months feels like nothing.

Mom is 54. She has lesions on two vertebrae, and the doctors seem pleased with her current progress. As for the specific immunoglobulins—I honestly don't know, nor do I really know how to find out or why the distinction matters. Her mobility is limited; she uses a brace and relies on crutches to get around. We've been warned that a fall could be disastrous...

Brenda Thomas96 said:My mother is 54. The lesion is on two vertebrae. The doctors are satisfied with her current results, but I don't know anything about immunoglobulins—I don't even know how to look that up or what the difference is. Her mobility is limited; she wears a brace and uses crutches. We've been warned that she absolutely cannot fall...

It honestly doesn't matter. Don't let the technicalities confuse you.😉 Everything is detailed in the link I provided. To put it simply: plasma cells produce proteins called immunoglobulins (there are several types like IgG, IgD, IgE, and IgA) which serve as the body's defense mechanism. In myeloma, these plasma cells are altered and secrete massive amounts of non-functional immunoglobulins. This means your mother's immune system is compromised, making her highly susceptible to infections. Furthermore, these same plasma cells accumulate in the bones and degrade them, causing pain and requiring extreme caution during movement to prevent fractures where the damage has occurred.

The fact that she is heading for a transplant is a positive sign. 👍 It indicates she has entered remission following chemotherapy. A transplant functions similarly to chemo, but its effects are more long-lasting and significantly improve quality of life. The primary complication here involves the spine, specifically regarding the spinal cord and nerves.

I am not trying to alarm you, but without being hyperbolic, you and your mother face a long and grueling battle—mentally, physically, and financially. That is simply the nature of this disease. You will need immense patience, willpower, and optimism, as those are the only things we can truly control. My thoughts are with you. Good luck.👍

feralridge3 said:🙂

I'm in recovery mode. 🙂
It’s almost been two years since this whole thing started. I finished my Temodar chemo about four and a half months ago, and now I'm just trying to get my life back to normal. Physically, I'm feeling stronger because I've been working out regularly. Mentally, things are better too. I feel more stable. I'm definitely less scattered than I was five months ago. The only thing that hasn't improved is my memory. My brain feels like it has a constant draft blowing through it. 😍

My MRI in early January showed everything looked good.
I have another one scheduled for mid-May.

I'm happy because I can finally head out to the mountains again. That's what keeps me going right now. I look forward to every single hike. That's how I live—one trip at a time.
Hopefully, my memory will come back eventually. It would be pretty ridiculous to meet someone like Brad Pitt and then completely forget meeting him. 🤣

🙂 I'm so happy for you that you're slowly getting back to the person you were before all this 👍 and back to those mountains you love so much. That's wonderful. 🙂 As for that brain fog, I deal with it too. 😍 Trying to learn something new and actually make it stick? Forget about it. My memory just isn't there anymore.

The Daffodil Day fundraiser is happening this Saturday, March 27th, 2010. It’s all dedicated to supporting those fighting breast cancer. We'll be out at Times Square, the Mall of America, Hartsfield-Jackson Atlanta International Airport, and all over Downtown from 10 AM to 1 PM. Please, swing by and pick up some daffodils. It's a small gesture, but it really helps support our cause.
Please step up and show your support for those battling breast cancer.

Well, we were out in the city today—first time taking the baby out, actually—to pick up some daffodils for Grandma and to support all those good causes. We even stumbled upon a Krijesnica stand, so the girls scored some new t-shirts, though we ended up getting absolutely soaked by the rain. Honestly, that was the best part of the day. Now things have taken a turn for the worse. My sister called me (she’s staying at my mom's tonight) saying she’s having a massive nosebleed. It just won't stop, and I'm really hoping she doesn't end up having to call 911.
Has anyone here dealt with nosebleeds being a side effect of chemotherapy? She had her first round about nine days ago. Or could it be from pain medication? If anyone is online tonight, please let me know if you've seen this before.
Thanks in advance!