Support resources for families dealing with cancer and other serious illnesses

Happy New Year 2009! Wishing you guys a ton of luck and some serious backbone. It’s funny how it works—a healthy person has a million different things they want, but once you're sick, you've only got one single wish left. I'm pulling for everyone to get that one thing they need.

Honestly, I’ve just got one simple wish... for all of you, my dear friends, and for myself too... HEALTH! Everything else can wait or find another way, but many people don't get a second chance at time!
Love yourselves and your loved ones!

Hey there, fellow warriors—Happy New Year! I’m really hoping this one turns out to be at least twice as good as the last one for all of us. Honestly, I just want to wish you guys what you need most: health, pure and simple. Let's all come out on top of this uphill battle we're fighting. Truly, from the bottom of my heart.🙂

Angela Wright said:cosmiceagle4, you've already shared this link. Look, don't take this the wrong way, but you’re starting to get a little exhausting. 😳
We all realize you're just trying to be helpful, but there is such a thing as overdoing it. When people are dealing with cancer, they aren't stupid enough to be unable to decide for themselves whether they want alternative options or specifically a drug like Tykerb.
Ever since you joined this forum, your posts have been exclusively about these topics, without ever sharing any direct or indirect personal experiences or engaging with what everyone else is actually discussing here, which really creates the impression that you're just trying to sell something—mostly smoke and mirrors...
Please, just stop if you have any dignity left. It isn't right👎. The people coming here have moved mountains, tried everything under the sun from conventional medicine to alternatives, and they are still facing death... please, just stop. 🙂

I'm sorry, I didn't mean to be pushy.
I simply hold a deep conviction that this is the right path. Perhaps it isn't for everyone...

cosmiceagle4 said:Look, I didn't mean to be pushy.
I just have this bone-deep conviction that this is the right way to go. Maybe it isn't for everyone...

Let me offer a suggestion: people who are actually suffering might "feel" the weight and reality of their situation much more acutely than you and I, since we aren't the ones fighting for our lives. Do you honestly believe that following this path is the "right way" when it leads to such staggering mortality rates? The issue is that sometimes, well-intentioned advice can feel like a slap in the face to terminally ill patients who have tried every single thing under the sun and found zero relief. In this instance, the road to hell is paved with nothing but good intentions.
My mother started down that same "righteous path," and it led absolutely nowhere. Now, I’ll spend the rest of my life wondering what if she had just stuck with what mainstream medicine offered—maybe she would have had a better quality of life, or maybe even a few more years with us...
It's easy to throw suggestions around from where you're sitting, but once you're on the other side of the line, I am deeply convinced the perspective shifts entirely.

Nancy Thomas18 said:I'm already heading into my third checkup by next month—the first round was a whole ordeal with CT scans, ultrasounds, lung imaging, CBCs, and tumor markers. Then came the PET/CT over at Mayo Clinic along with all the bloodwork... and of course, the mandatory colonoscopy. Now, in February, I've got more CBCs, markers, lung scans, and an ultrasound scheduled, followed by another colonoscopy right after that.

Thanks, Nancy Thomas18—I actually just found out which tests are coming up next🙂
Pelvic CT, CBC, markers... I think that covers it.
She should be back for a follow-up in early March

And until then, she still has two rounds of chemo left to push through...
The radiation gave her diarrhea for two weeks straight, so she basically lived on Indian tea, toast, and plain congee... she dropped about 13 pounds and is still trying to bounce back from that
Her gut still hurts, though it’s definitely better than it was before...
She’s supposed to start therapy next week, but honestly, I have my doubts about how well her digestive system will handle it😢
And I really can't force her to eat or drink everything that’s supposed to "improve" gut health when she hasn't even fully recovered yet...🤷
But still, there's this little spark of hope inside me... maybe her gut isn't as bad as it seems, and maybe she'll find the strength to crush this penultimate round of treatment🙂

It’s been quite a while since I’ve popped up on these boards, so I just wanted to swing by, say hi to everyone, and send nothing but the absolute best vibes your way! My mom, who has been battling breast cancer, is actually doing stable right now, and we’re just waiting on her next checkup later this month—fingers crossed for some great news... We're staying optimistic! Honestly, I really hope that becoming a grandmother in just a few days will give her that extra boost of strength and keep her spirits high. That’s part of the reason I’ve been a bit quiet lately; during my pregnancy, I really wanted to take a break from thinking about all those heavy, difficult days we went through... Sending so much love to you all! Kisses

Happy New Year, everyone... wishing you all so much strength and nothing but wins in your fight against this sickness!

My mom wrapped up her chemo sessions at the end of last year, and now we’re just sitting around waiting for those first deep-dive tests at the beginning of February (MRI, blood work, markers, the whole nine yards)
We’re trying our best to stay chill, but honestly, the fear just kind of crawls under your skin... I can't help but wonder why the oncologist scheduled everything for two and a half months after the last round of chemo... why wait that long? And why aren't they doing a PET scan right away?
Plus, while she was going through chemo—which left her dealing with constant diarrhea—she dropped about 5 or 6 pounds. She hasn't put any of it back yet. It doesn't seem like it's gonna be an easy fix. But, she seems to be doing okay (or at least, that’s what she tries to make us believe...)
I think I might have mentioned this to Nivija before, but maybe someone else here can use this tip regarding the diarrhea situation we finally cracked recently. We found that Kuzu powder (the stuff that usually thickens soups) actually helps quite a bit. Lately, I've been making her this drink with Kuzu and umeboshi plums, which is supposed to be great for gut health. It’s all macrobiotic stuff, but I read that plenty of moms even use Kuzu to help stop diarrhea in babies...

shadowmason6 said:Wishing everyone a happy New Year, along with plenty of strength and success in their fight against illness!

My mother finished her chemotherapy sessions toward the end of last year, and we are currently waiting for the first detailed screenings at the beginning of February (MRI, CT scans, and tumor markers)...
We are attempting to stay relaxed, though naturally, fear tends to linger within us... I find myself wondering why the oncologist scheduled the tests for two and a half months after the final chemo session... why not sooner? And, why not an immediate PET scan?...
Additionally, my mother lost about 4 to 6 pounds during chemo (where diarrhea was a persistent side effect). She hasn't regained any weight yet. It seems recovery isn't quite that straightforward. However, she feels relatively well—or at least, she tries very hard to project that image...
I believe I have already reached out to Nivija, so perhaps this recipe might assist someone else struggling with diarrhea, as we only recently discovered it. It appears to us that Kuzu powder (which is typically used as a thickener in cooking) can be helpful. Lately, I have been preparing a drink for her consisting of Kuzu and umeboshi plums, which is often recommended for strengthening the abdomen. These are ingredients from macrobiotic cuisine, but I have read that many mothers even use Kuzu to help stop diarrhea in infants...

Wishing you all the best as well; try not to let the fear settle in too deeply. Keep moving forward bravely!

Our oncologist mentioned to us that before a PET/CT, they find it difficult to send patients for imaging because they don't want to put them in a position where, besides the results potentially heightening the patient's anxiety, a misdiagnosis occurs. Essentially, besides the chemicals introduced into the body for the scan showing "spots" near malignant formations, those "spots" can also appear near fatty tissue. Please correct me if anyone here knows more... I also suspect there is a waiting period allowed for the body to begin recovering from the chemo so that more accurate results can be achieved...

Looking at my mother's case, I can say that this does happen. Fortunately, however, the oncologists acted promptly; she underwent surgery and we are now entering the second cycle of chemo, even though her immunity is weak and issues with neutrophils are resurfacing...

Regarding the weight concerns, a loss of 4 to 6 pounds is quite realistic, given that any prolonged treatment is an enormous shock to the system. Regaining weight will be difficult, but the most vital thing is that she maintains an appetite and that the weight doesn't continue to drop...

We aren't dealing with diarrhea at the moment, but I am curious as to where you source that drink and those plums?

Thank you for sharing your advice!

Nancy Hernandez43 said:We aren't dealing with any diarrhea issues yet, but I'm curious where you pick up that tonic and those plums?

I really hope this isn't just all hype from some commercial—anyway, I get the mugwort and the umeboshi plums (along with the shiitake, tamari, miso... and all that other stuff, mostly because a macrobiotic consultant suggested it) at Whole Foods markets. Honestly, I wish they had some actual competition around here because the prices are getting pretty ridiculous. Some items are stocked at Sprouts too, though I haven't checked out that newly opened Garden yet...
I mean, who knows how much of a difference a macro diet will actually make, but I guess we're pinning our hopes on it...
With that kind of eating, it’s pretty much impossible to put on weight, too. A while back, this lady on the forum (sending her my love 🙂) convinced me that the number on the scale doesn't matter nearly as much as how the patient is doing overall, so we try not to sweat the small stuff. Mom, on the other hand, keeps cracking jokes about her new waistline, while I just end up handing her my pants because they're way too big on me now...

Btw, thanks to you too!

I haven't posted for days because we have been going through an intense drama. It was bad for several days; we thought it was psychological. However, his behavior became increasingly strange, and his thoughts were disconnected. On December 30th, he went for a psychiatric checkup because we suspected the dosage of his psych meds was too high. The psychiatrist agreed the doses were excessive and swapped one medication. Yet, less than two hours later, he took a sudden turn for the worse. He almost lost consciousness completely. He could stay on his feet, but he had no idea where he was. We rushed him to the ER, and a CT scan showed multiple brain metastases with edema. He has been hospitalized in neurology for 8 days now. He regained consciousness and recognizes us, answering questions logically. However, when we aren't present, he becomes quite restless and loses touch with reality, so he is bedridden. He barely speaks and hardly eats anything. Today, they "cursed" him with a sedative injection—the explanation being his restlessness.
The oncologist suggests radiation in New York City, since they won't take bedridden patients in Miami. But now, finding a facility is a massive struggle. They estimate he has a maximum of two months left.
It all happened so suddenly. We are all prepared for the worst and are fully aware of the situation. We are trying everything to find him a spot at a hospital near the Vineyard or at the Mayo Clinic (though they say it's pointless to even try there because it's completely full).
One doctor's initial assessment even suggested that traveling might be futile and that a trip to New York City could actually worsen his desperate condition.
We will know more tomorrow once the specialist team analyzes the results.
All in all, it is desperate.
How effective is radiation for melanoma brain metastases, really?

slyjackal38 said:How effective is radiation therapy actually when it comes to treating melanoma metastases in the brain?

Let’s be real—if even a portion of this isn't surgically removable...😢 Melanoma is just a nasty, deceptive beast. Honestly, I suspect treatment might only slow things down slightly, but I truly can't say if it would actually improve his quality of life.
Then again, you never really know...

After everything I've personally been through, I still couldn't tell you what I'd do in your shoes. Would I keep fighting tooth and nail, doing everything possible just to buy more time? Or would I focus on providing the best palliative care imaginable, surrounding him with loved ones and letting nature take its course?

You need to have an honest, human conversation with the doctors and make a decision together as a family.

I am so incredibly sorry; my heart goes out to you, because I know exactly what this feels like.

Just remember: whatever choice you make, it will be the right one.

Angela Wright said:To be honest, if even a part isn't operable...😢 Melanoma is just such a disgusting, sneaky disease...

After everything I have personally gone through, I am still unsure what I would do in your position. Whether to keep fighting and try everything possible, or to provide the best palliative care, surround him with loved ones, and let nature take its course.

You will need to speak openly and on a human level with the doctors to reach a shared decision.

I am so terribly sorry and my heart goes out to you; I know exactly what you are going through.

Just know that whatever decision you make, it will be the right one.

Thank you so much for this. It means a great deal to me.
You are truly an angel in this thread.

My dear fellow forum members, I truly hope you all find yourselves fulfilled in every way throughout 2009! I’ll be praying that you emerge victorious in every single one of your battles this year...🙂

Tomorrow, my father heads in for his first CT scan following his surgery and radiation treatments... please join me in prayer that those bastards haven't returned.🙂

shadowmason6 said:I truly hope this doesn't turn out to be just another glorified advertisement—I currently source my kombu and umeboshi plums (along with shiitake, tamari, miso, and several other items, mostly following the advice of a macrobiotic consultant) from Whole Foods markets. It would be quite refreshing if we had some stronger competition in that sector, given how steep the prices can be. Some items are stocked at Sprouts, and I haven't yet had the opportunity to check out the newly opened Garden...
I am uncertain exactly how much benefit a macrobiotic diet will provide, though I must admit, we are placing a significant amount of hope in it...
With that particular way of eating, shedding even a few pounds proves to be quite a challenge. A while back, a fellow forum member (whom I send my best to, 🙂) convinced me that the number on the scale isn't nearly as vital as the patient's overall condition, so we try not to fret excessively over it. My mother, however, insists on joking about her expanding waistline, while I find myself handing her my own trousers, which are already far too large for me...

By the way, thank you as well!

It isn't an ad, but it certainly helps regardless. Doctors are constantly questioning whether she is too thin, as they seem to view weight loss as an automatic indicator that something is wrong with her body. To be honest, I don't even know what to think or believe regarding her anymore... The patient's general well-being is undoubtedly the most important factor, and so we move forward with my mother with optimism and courage. Living means fighting... and that is a truth that holds steady, both for us and for our loved ones who are ill...

brisksurfer said:To my dear fellow forum members, I wish you nothing but the fulfillment of all your desires in this year of 2009! I shall be praying that you emerge victorious in all your battles this year...🙂

Tomorrow, my father undergoes his first CT scan following his surgery and radiation treatments... please join me in prayer that those bastards haven't returned...🙂

I am crossing my fingers that those bastards haven't come back!!!!!!!!!

shadowmason6 said:Happy New Year to everyone, wishing you all tons of strength and success while fighting your illnesses!

So, my mom finished up her chemo at the end of last year, and now we’re just sitting around waiting for the first round of detailed tests in early February (MRI, CT scans, and those various markers).
We're trying our best to stay chill, but honestly, the fear is just kind of lurking under the surface... I can't help but wonder why the oncologist scheduled everything for two and a half months after her last chemo session... like, why not sooner? And, why isn't a PET scan happening right away?
Plus, during the chemo—which caused some pretty nasty diarrhea issues—she dropped about 4 or 5 pounds. She hasn't put any of it back yet. I guess it's just not that easy. But, she seems to be doing okay (or at least, she's working really hard to make it look that way...)
I think I might have already messaged Nivija about this, but maybe it'll help someone else too—we finally found a recipe for dealing with the diarrhea. It seems like Kuzu powder (the stuff used to thicken soups) actually works. Lately, I've been making her this drink with Kuzu and umeboshi plums, which is apparently recommended for strengthening the gut. It's all part of that macrobiotic diet thing, but I read that plenty of moms use Kuzu to stop diarrhea in babies.

Sending good vibes to everyone. Quick question: I live out in the sticks, so does anyone know where I could actually track down some Kuzu powder and umeboshi plums?

Nancy Hernandez43 said:I’m crossing my fingers those creeps haven't come back!!!!!!!!!

Thanks! 😘
Got the CT scan done... follow-up appointment is this Wednesday.

Regarding the tumor situation, you might want to check out the Myko Sana page—their treatments have been showing some really impressive results .

Hey everyone, I'm the new girl on the block.
First off, I just want to wish you all nothing but the best for 2009. I hope you guys find the courage and the hope needed to believe things will actually turn out okay. And honestly, I hope we all get to put these awful stories behind us together—by getting healthy.
My aunt—she’s basically as close as immediate family since she lives alone, never married, and doesn't have kids—is in the hospital right now. It’s almost been a month. She has malignant pancreatic cancer. It was a massive, terrifying shock to our whole family, and we're still just trying to wrap our heads around it.
It all started with some stomach issues, and we honestly thought she just ate something bad. But then, those digestive problems wouldn't go away, even after two weeks. Then her skin started changing color, and suddenly, without any pain at all, she turned yellow. Her liver tests were absolutely horrific, so we initially thought maybe it was a gallbladder issue. But man, we were wrong about that.
Four days ago, she had surgery where they performed a gastrojejunostomy—basically connecting her stomach to her small intestine—just so she wouldn't suffer from the blockage. That's when the doctors dropped the hammer: they said the tumor can't be removed. Now we're just sitting here waiting for her to recover from the surgery so we can see what the oncologists say, specifically if they'll even clear her for chemo. Though, the abdominal surgeons already hinted that it's looking pretty unlikely.
We haven't told her the full truth yet, and we're torn on whether we should even bother telling her if they decide not to proceed with chemotherapy. What do you guys think? Also, does anyone here have actual experience dealing with this specific disease? We have no idea what we're walking into, and this constant uncertainty is just... it's the hardest part. 😢The doctors are telling us that time isn't exactly on our side, but we're still clinging to the hope that she'll be okay for a little while longer.