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Support resources for families dealing with cancer and other serious illnesses

Started by James Cox6 · · 👁 78 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 …
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#3081 ·
mistybadger55 said:The metastases in my mom's brain have grown to 12x19 and 15x19 mm. Even though those sizes can be handled—and actually are treated in practice—with Gamma Knife, Dr. Mihaljević just said NO today. Short, simple, and brutal. His reasoning? "The primary disease progression isn't under control," meaning because Mom has metastases in her lungs, adrenal glands, and several other lymph nodes.
I just don't get it: has anyone ever walked into a clinic with brain metastases where the disease was actually under control? If there are targets appearing in the brain, it means the disease spun out of control a long time ago. But they just refuse to treat it...😢😢
I don't understand this and I never will. It’s pathetic and tragic—they just write a person off, when maybe treating those spots could have bought them a few more quality months of life.
I feel like breaking something right now.

Dear mistybadger55, brain surgery or even Gamma Knife isn't some simple fix; it’s incredibly complex and carries massive risks. Given your mother's current state, attempting a procedure like that would only skyrocket those risks, making the success of the surgery itself questionable, let alone any hope for quality of life afterward. There are simply too many metastases; the disease isn't dormant or stable. However, I think the core issue here is that Gamma Knife isn't typically used when there are multiple metastases present in the brain. On the bright side, those specific targets are sensitive to radiation, which she will definitely receive, and that should shrink them down—which might open up new options later.
Hang in there!
bluetiger72 bluetiger72 Newcomer
1 message
joined Apr 2012
#3082 ·
I’ve been reading your posts for quite some time now, hesitant to join in, but I finally felt I had to write something.
Basically, my mother has been fighting this battle for six years straight: ovarian cancer, then breast cancer, followed by issues in the pelvic region, rounds of chemo, and most recently, some bowel issues. She went for a PET scan which showed activated lymph nodes, leading to more chemo and eventually surgery where they had to implant an ostomy bag because the tumor itself was untouched—it had grown into the sacrum. There are metastatic blood vessels in the liver, though they say it's just on the periphery rather than deep inside, and they aren't large. Her pathology results came back positive, so she’s facing another round of chemotherapy. She has lost so much weight and is in terrible pain, though my doctor mentioned those pains are likely from the original ovarian cancer and that she responds well to treatment. Honestly, I don't even know what to think anymore. When I was 15, I lost my father to suicide, and my sister is only 15 now; we live 186 miles, and I feel like I'm at my wits' end. I’ve also become incredibly paranoid about my own health, constantly getting tests done. My CA125 levels were normal at 15.2, and my abdominal and breast ultrasounds were fine, but I've become totally hyper-vigilant; it feels like every symptom I see is a potential catastrophe. On top of that, I gave birth just three months ago, so my hormones are all over the place. Mom says she’s noticed lumps in her groin area (lymph nodes), and I’m just lost. Has anyone else dealt with a similar situation?
Forgive me for such a long post....🙂🙂🙂 🙂
mistybadger55 mistybadger55 Member
22 messages
joined May 2011
#3083 ·
Angela Wright said:Look, mistybadger55, brain surgery—even using a Gamma Knife—isn't some simple procedure. It’s incredibly complex and risky. Given your mom's current condition, such an operation would just ramp up those risks, and honestly, there's no guarantee it would even be feasible, let alone improve her quality of life afterward. There are too many metastases; the disease isn't dormant or stable. But in my opinion, the real issue here is that Gamma Knife isn't typically used when there are multiple metastases present in the brain. The silver lining is that these specific targets should be sensitive to radiation, which she will definitely receive, potentially shrinking them and opening up other options later.
Hang in there!

No, my mom has two brain metastases, specifically the sizes I mentioned. Based on that, Dr. Mihaljević actually said a Gamma Knife procedure was an option. He turned it down because of the metastases in her lungs, adrenal glands, and the fatty tissue in her gluteal region.
How certain are you that the metastases are sensitive to WBRT (whole-brain radiation therapy)?
From what I've read on some US medical sites, melanoma metastases can be pretty resistant.
Nicole Wilson3 Nicole Wilson3 Newcomer
1 message
joined Apr 2012
#3084 ·
Hi everyone. I don’t really know how to start this, but I need to reach out to people who actually understand what this feels like. My mom is fighting bladder cancer that has spread to her groin, along with lung cancer that’s currently in remission following surgery. She was discharged from the hospital ten days ago after three weeks of radiation intended to stop the constant bleeding and the pain she deals with every time she tries to go to the bathroom. Unfortunately, nothing has changed, and now she’s facing another surgery for a recurrence in her bladder.
Her doctor told us they’ve done everything humanly possible on their end, and I truly believe them. But we still feel completely helpless because she’s still in agony, still bleeding, and there hasn't been any improvement. I know you all get it because you're living through it too, but I can't bear watching her writhe in pain. To make matters worse, she refuses even the mildest morphine patches. How do you convince someone that refusing pain management isn't the answer? I even asked her doctor to sit down and explain things to her, but she just won't budge. Has anyone dealt with something similar? Any advice at all would mean the world.
I also have a favor to ask. Given our current financial situation, we can't afford to buy pull-up style incontinence briefs—not the adhesive kind, which the hospital provides, but the ones she'd actually wear. On top of that, she's resisting using them. Does anyone happen to have some size Small pull-ups they could donate or sell for a very low price? I would be so incredibly grateful if someone could reach out or point me toward a resource that might help.
I want to wish you all so much strength and courage while you navigate this. I'm sorry, I just don't know what else to say in a situation like this, so please forgive me.
dustybadger81 dustybadger81 Newcomer
5 messages
joined Apr 2012
#3085 ·
Hey everyone... I don't even know how to start this, but long story short... about a month and a half ago, my whole world just flipped upside down—like, several times over—and I can't seem to find my footing again. My mom was diagnosed with lung cancer, and then just a few days later, they found bone metastases. They’ve already started gaining ground and have damaged two vertebrae... there's this terrifying risk that if she makes one wrong move, her spine could fracture and leave her paralyzed. Honestly, I have hundreds of questions swirling in my head, but right now, I don't even know where to begin. It just doesn't make sense how all of this was caught so late in the game. She's had one round of radiation to help manage the pain and one chemo session so far. She was supposed to go back for more radiation last week because it spread to her right knee, and then head straight to chemo, but things took a turn for the worse on Tuesday. She developed sepsis and ended up in the ICU under isolation. She's still there today, and I can see her mental state just spiraling... I think it's because she's stuck in that room alone without a TV or anyone to talk to, and you know how visits in the ICU are—you get maybe an hour or two, and then she's just left there by herself for the rest of the day. Does anyone here know someone who has dealt with a case similar to my mom's? I just want to know if there's anything we can actually do... how much hope are we even allowed to hold onto? Mom is relatively young, only in her early forties, and it just breaks my heart seeing her like this when I feel so helpless...
Maria Sullivan32 Maria Sullivan32 Newcomer
1 message
joined Apr 2012
#3086 ·
Hey to all the brave souls here 🙂

My dear mom is 58. It’s primarily colon cancer, now metastasized to her bones, lungs, and lymph nodes. This whole process has been going on since 2006.
Because of the insane bone pain from the metastases, she went in for palliative radiation last week. Now, she’s been vomiting for six days straight. We have the ER on speed dial every single day, and they seem more and more dismissive whenever I call about her injections.
Does anyone have experience with how to stop vomiting after radiation? Is it normal for this to drag on this long? On top of that, she’s dealing with stomach pains in the upper abdomen—just below the ribs but above the actual stomach—that we just can't settle.
We’re losing our minds over the cocktail of meds and injections she’s getting. So far, nothing has worked. (Zofran, Buscopan, Ranix, Reglan, Torecan, Normabel, Diazepam)

Please, if anyone has any experience, an answer, or even just an idea. I’m about to lose it with doctors constantly brushing us off and acting like everything is fine when it isn't.😠

Hang in there, everyone.👍
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#3087 ·
mistybadger55 said:No, my mom has two brain metastases, about the size I mentioned earlier. According to Dr. Smith, those could have been treated with Gamma Knife. However, he turned her down because she also has metastases in her lungs, adrenal glands, and fatty tissue in the gluteal region.
How certain are you that the metastases will respond to WBRT (Whole Brain Radiation Therapy)?
From what I've read on American medical sites, melanoma metastases can be pretty resistant.

Look, when it comes to all types of tumors, radiation remains one of the most effective tools available. Take my mother’s glioblastoma, for example—radiation did the heavy lifting there. She had a single recurrence in the brain, about 1cm, but they wouldn't do Gamma Knife; instead, they sent her straight to radiation (she had initially declined oncological treatment after surgery, then developed the recurrence six months later). In her specific case, chemo didn't really move the needle.
My understanding is that if you're dealing with just one target in the brain, they go with Gamma Knife, so I honestly have no clue what the doctor was thinking.🤷
mistybadger55 mistybadger55 Member
22 messages
joined May 2011
#3088 ·
Angela Wright said:Radiation is still the most effective tool we have against tumors—period. When it comes to my mom's glioblastoma, radiation was what actually did the heavy lifting. She had a recurrence in just one spot in her brain—about 1cm—but they wouldn't even consider Gamma Knife for her. Instead, they just pushed for more radiation. To be fair, she initially turned down oncological treatment right after surgery, which led to that recurrence six months later. As far as chemo goes? It didn't do much for her at all.
From what I understand, if they’re only targeting a single spot in the brain, they go with Gamma—so I honestly have no clue what the doctor was getting at.🤷

I think a Gamma scan works if it's one up to 3 cm, or maybe two up to 2 cm—but honestly, it doesn't matter anymore. That option is off the table.
How did radiation affect your mom? Did that recurrence actually shrink, or did it just stop growing? For how long? I’m assuming we’re talking a few months here. Also—what kind of side effects are we looking at? I know it hits everyone differently, but I’d like to have at least a rough idea of what to expect.
mistybadger55 mistybadger55 Member
22 messages
joined May 2011
#3089 ·
bluetiger72 said:I’ve been lurking here for ages—reading everything you all post—but I just couldn't bring myself to jump in until now. So, here I am.
My mom has been fighting this battle for six years now—it’s been an endless cycle of ovarian cancer, then breast cancer, then something else in the pelvic region. We’ve gone through chemo, and lately, she’s been dealing with bowel issues. A recent PET scan showed activated lymph nodes, so it's back to chemo, followed by surgery where they had to install an ostomy bag. They couldn't touch the actual tumor because it’s grown into the sacrum. There are metastatic blood vessels in her liver too, though they say it's just on the periphery, not deep inside. They aren't large, apparently. Her pathology results came back positive, so she’s heading straight back into chemo. She’s lost so much weight, and the pain is just brutal. My doctor told me the pain is likely from the original ovarian cancer and that those areas usually respond well to chemo, but honestly—I don't even know what to think anymore. I lost my father to suicide when I was fifteen—my sister is only fifteen now. We're just trying to get through this. 186 miles I honestly don't even know what to make of them anymore. I’ve been spiraling—completely paranoid—doing my own checks. My CA125 came back normal at 15.2, and both my abdominal and breast ultrasounds were fine, but I can't help it. I've become totally obsessive; every little symptom feels like a looming catastrophe. Plus, I gave birth just three months ago, so my hormones are still a complete mess. To top it off, my mom says she's feeling some lumps in her groin area—swollen lymph nodes—but I don't even know what to think anymore. Has anyone else dealt with a similar situation?
Sorry for the long post...🙂🙂🙂🙂

Nicole Wilson3 said:Hey everyone here fighting the same battle. I don't really know where to start, but here’s the short version—my mom is dealing with bladder cancer that has metastasized to her groin, along with lung cancer that's currently in remission following surgery. She was discharged from the hospital ten days ago after three weeks of radiation aimed at stopping the constant bleeding and the pain she feels whenever she urinates. Unfortunately, it hasn't helped much—she’s already facing another surgery to deal with a recurrence in the bladder.
The doctor leading her care told us they’ve done everything possible from their end—and I truly believe them. We’re just stuck. It feels completely helpless because she’s still in pain, there’s still bleeding, and nothing is getting better. I know everyone here will get it since you're all walking this same path, but I can't stand watching her writhe in agony anymore. She’s even refusing the mildest morphine patches... how do I convince her that this isn't the final resort? I actually asked the doctor to sit down and talk sense into her, but she just won't budge. Has anyone dealt with something similar? I desperately need some advice.
I’m putting out another request here—given our current financial situation, we just can't afford to keep buying pull-up diapers. Not the ones with the adhesive tabs, either—he gets those as well—and honestly, he won't use them anyway. Does anyone happen to have any size Small pull-ups they could donate? Or maybe sell at a decent price? I would be incredibly grateful if someone could reach out or point me toward another site where I might find something affordable.
I want to wish you all nothing but courage and strength for everything we're going through right now. I’m truly sorry—honestly, I don't even know what to say in a situation like this, so please don't hold it against me if I'm at a loss for words.

dustybadger81 said:Hi everyone... I don't even know how to start, but long story short... about a month and a half ago, my life just flipped upside down—multiple times over—and I can't seem to find my footing again. My mom was diagnosed with lung cancer, and just days later, we found out there are bone metastases. They've already started spreading and have damaged two vertebrae; there’s a real risk that if she makes the wrong move, her spine could fracture and leave her paralyzed. I have hundreds of questions swirling in my head, but honestly, I don't even know where to begin. It's hard to wrap my head around how this all went undetected until such an advanced stage. So far, she’s had one round of radiation for pain management and one chemo session. Last week, she was supposed to go back for more radiation since it spread to her right knee, followed by chemo, but things took a turn for the worse on Tuesday. She developed sepsis and ended up in the ICU under isolation. She's still there today, and I can see her mental state deteriorating—probably because she's stuck in a room without a TV or anyone to talk to. You know how visits in the ICU are; you get an hour or two, and then she's just alone for the rest of the day. Does anyone here know someone dealing with a situation similar to my mom's? Is there anything we can actually do? How much hope is realistic? Mom is relatively young, in her early 40s, and it breaks my heart to see her like this when I feel so helpless.

Maria Sullivan32 said:Sending strength to everyone fighting here. 🙂

My dear mom is 58. It started with colon cancer, and now it’s hitting her bones, lungs, and lymph nodes. This whole process has been going on since 2006.
Because of the insane pain from the bone metastases, she had palliative radiation last week, and now she’s been vomiting for six days straight. We're calling emergency services every single day, and they seem to roll their eyes (or whatever) every time I call regarding her injections.
Does anyone have experience with how to stop vomiting after radiation? Is it normal for it to last this long? On top of that, she’s suffering from stomach pains—right below the ribs but above the actual stomach—that we just can't settle.
We are losing our minds with the cocktail of meds and injections she’s getting, and so far, nothing has worked. (Zofran, Buscopan, Ranix, Reglan, Torecan, Normabel, Diazepam)

Please, I need some insight, an answer, or even just an idea before I lose it from doctors brushing us off and acting like everything is fine. 😠

Hang in there, everyone. 👍

Ladies, I can't exactly say "welcome" to this thread
, but since you're here, we can at least share what we're going through. The common thread is that we're all dealing with mothers who are seriously ill. Mine has melanoma with metastases everywhere; we're fighting as hard as we can and just taking it one day at a time. I hope God gives you all the strength you need to handle what lies ahead (for you and for me).😢
I don't have any profound advice to offer—I just want to wish nothing but the best for all of you and your moms.
James Cox6 James Cox6 Active MemberOP
150 messages
joined Mar 2009
#3090 ·
mistybadger55 😢
Your username—which I just saw pop up in that health thread—was what actually pushed me to open this painful topic again 😢
So, you're here too? Along with your mom?
🙂
I don't really have anything profound to say—but honestly, it wasn't until my mother passed away that everything people told me, both online and in real life, finally started to sink in. I used to reject it all...
Sometimes I’m angry at myself for that, sometimes I'm not...
Oh, mistybadger55... how is your mom doing now?
James Cox6 James Cox6 Active MemberOP
150 messages
joined Mar 2009
#3091 ·
Here I am at 26 weeks and 5 days... back on this thread pregnant again, just like I was with Lara—the emotions just keep swelling, crashing, and resetting...
I honestly don't know what kind of comfort to offer on a thread where people cling to each other and grab at any tiny straw, thanking God just for a new day, a single breath, or another day of life...
Meanwhile, I lost my cool today because I hit a curb in my car and ripped off the fender...
I needed this thread—to reopen it, to read through it, to cry over my own life from 2009 and over all of you living through the struggles of sick parents and loved ones...
I would give anything in this world just to see my daughter again... everything... but hey, I hope we cross paths someday and she’s there waiting for me with the son I lost way back in 2007...

Forgive me—maybe it's just the hormones running wild, or maybe opening this thread is just an excuse to let out the emotions that went silent for me on September 8, 2009...

I wish you all the luck in the world. I hope your loved ones stay with you for a long, long time—cherish them... while you still can... I miss someone calling me "sweetie" so much... since seven months into 2009, no one has ever said that to me again...😢 I just have this deep need to hear it...
And it was my mother who used to say it to me😢
Linda Baker51 Linda Baker51 Newcomer
2 messages
joined Jul 2009
#3092 ·
dustybadger81 said:I just want to know if there's anything we can actually do. Is there even any reason to hope? My mom is still relatively young, only in her early forties, and it breaks my heart to see her like this when I feel so helpless to help her.

Your post really struck a chord with me, and not in a good way. I wish I could offer you some profound insight or a silver lining, but honestly, there isn't one. All I can tell you is what I suspect you've already heard a thousand times: you have to stay strong, keep your head up, and try to ease your mother's burden through your presence and your love.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#3093 ·
mistybadger55 said:I think Gamma Knife is used if one is up to 3 cm or maybe two are up to 2 cm, but it doesn't matter now, that option is off the table.
How did the radiation affect your mom? Did that recurrence shrink, or did it just stop growing? For how long? A few months, I assume. And what kind of side effects did she deal with from the radiation? I know it hits everyone differently, but I’d like to have at least a rough idea of what we might be looking at.

Glioblastoma is a primary brain tumor, and along with pancreatic cancer, it’s easily one of the most aggressive things a person can face. In my mom's case, the tumor completely receded after 30 sessions of radiation combined with Temodar—which is really where you see the best results—followed by six cycles of Temodar alone. However, things started sliding downhill slightly after that last round, about six months in. Look, we can't compare different diseases apples-to-apples, but one thing is certain: radiation remains the most effective way to treat a tumor, regardless of its type. The catch is that it has to be highly targeted. If there's no possibility for that level of precision, you're stuck, which is why chemo is used once the disease starts spreading or metastasizing.
My advice? Go out and hunt down a second opinion from another neurosurgeon, maybe someone like Dr. Paladin over at Mount Sinai. If he or anyone else confirms that Gamma Knife isn't an option, then that's simply the reality. You've got nothing to lose by checking.
Kate Brooks2 Kate Brooks2 Active Member
74 messages
joined Aug 2011
#3094 ·
It’s been quite a while since I last checked in on this thread... and honestly, every single time I drop by and see more of us fighting this absolute evil alongside our loved ones, I am hit with this overwhelming wave of sadness.
Our patient just finished his ninth round of treatment today. Given how devastatingly everything started for us here, I have officially moved into the territory of believing in miracles. At the very beginning, just within the first month, he dropped 14 pounds and couldn't even touch food for days following that initial therapy. Now? He has gained all that weight back; he looks like a perfectly healthy man, and frankly, he carries himself like one too. His blood work following today's session is actually better than it was when he was admitted to the hospital five days ago. All his levels are looking excellent, with the exception of his hemoglobin being slightly below the normal range. After every single CT scan, we've received news that the tumor has shrunk and there are no metastases. To me, this whole situation feels like nothing short of a miracle... now we are waiting on the next CT, praying that at the very least it stays stable if it hasn't shrunk further. Just hang in there and keep fighting, because I know for a fact that miracles exist.
dustybadger81 dustybadger81 Newcomer
5 messages
joined Apr 2012
#3095 ·
Kate Brooks2, I am so incredibly happy to see news like this!! Seriously, from the bottom of my heart!!
Things aren't exactly looking up for my mom, unfortunately... The only tiny silver lining is she’s finally out of the ICU and moved to a regular ward—so she actually has a TV now—but she’s still stuck in a room by herself. She picked up some kind of hospital bug because her immune system is basically non-existent right now. They didn't tell me exactly what it was, just that it wasn't MRSA... We went to visit her yesterday and ended up calling over a nurse from another department—we'd heard rumors she's pretty intense with the patients—to just shave my mom's head. Was that a smart move? Honestly, I have no clue, but personally, I think it helped... it just avoids that constant stress every time she sees hair falling out. And if I'm being totally real, I didn't expect her to look even better without hair than she did with it 🙂 her face just looks... brighter, somehow. I'm having a bit of a struggle finding decent scarves or hats or turbans or whatever you call them... Today I actually stumbled upon this lady on Etsy who is a cancer patient herself and makes these headwraps, so I'm gonna reach out to her and buy some.
At first, Mom was refusing all food and those healthy juices, and we were just letting her be, but then I was like, okay, enough is enough!! So now I've been giving her Breuss biotin juice, squeezing fresh carrot and orange juice for her, and bringing her different things to eat every single day—she'll eat a little bit of everything, from cooked veggies to a roast beef sandwich... I also give her two spoonfuls of this honey an aunt brought back from Austria, and I've been brewing this special tea an aunt had mixed up at a pharmacy in Austria specifically for her diagnosis... Does anyone have any advice on what to get her for her immunity? Any suggestions for other supplements or something?
dustybadger81 dustybadger81 Newcomer
5 messages
joined Apr 2012
#3096 ·
Linda Baker51 said:Your post really hit me hard... honestly, it made me pretty sad. I wish I could give you some big, life-changing news or something profound to hold onto, but there just isn't anything like that to say. All I can tell you is what I’m sure you’ve already heard a thousand times—that you just have to stay brave, keep your head up, and try to ease your mom's pain through your presence and all the love you can give her.

Thanks so much, Linda Baker51!! I know I need to be strong, and I’m really trying my best... it's definitely not easy, but we're getting through it somehow... if only there was a way to actually fix things for her, you know? But I realize everything is ultimately in God's hands... so I'll just keep doing my part, looking for any little way to make things easier for her... who knows, maybe a miracle will happen...

I just wanted to tell everyone here that I really admire you all—keep staying strong, stay brave, and whatever you do, don't give up!!!!!!! And hey, if we do stumble or lose steam for a bit, that's exactly why we're all here... to lift each other up and keep moving forward together. 🙂
mistybadger55 mistybadger55 Member
22 messages
joined May 2011
#3097 ·
Susan Diaz91 said:mistybadger55😢
Seeing your username in that last post on the health thread actually forced me to open this painful topic again 😢
So, you're here too—along with your mom?
🙂
I don't have anything profound to say, but it was only after my mother passed away that I finally accepted everything people had been telling me, both here and in real life...
Sometimes I'm angry at myself for that, sometimes I'm not...
Oh, mistybadger55... how is your mom doing now?

Susan Diaz91 said:Here I am, 26 weeks pregnant... once again, pregnant and back on this thread just like when I was with Lara—emotions just surge, ebb, and flow...
I'm not sure what comforting thing to say on a thread where people cling to one another for any scrap of hope, thanking God for a new day, for a single breath, for another day of life...
And yet, here I am, getting worked up today because I hit a curb and tore off my fender...
I needed this thread—to reopen it, to read through it, to cry over my younger self from 2009 and over all of you living through this with sick parents and loved ones....
I would give anything to see my daughter again... everything... but instead, I just hope we might cross paths somewhere, and that she’ll be there waiting for me with the son I lost way back in 2007...

Forgive me—maybe it's just the hormones running wild, or maybe opening this thread just unlocks all those emotions that went silent for me on September 8, 2009..

I wish you all the happiness in the world; I hope your loved ones stay with you for a long time—cherish them... while you can... I miss hearing someone call me 'sweetie' so much... since seven months into 2009, nobody has ever said that to me again... 😢 and man, I need to hear it...
My mom used to say it to me. 😢

Lara,🙂, I remember so clearly when you were going through hell with your mom—it started with her lungs, right?
My mom has had melanoma since 2005, but the damn thing stayed quiet until last spring. Now, unfortunately, we've hit a wall; most options are exhausted. She has two spots on her brain and several more in her lungs and adrenal glands. We're heading in on Monday to discuss whole-brain radiation, so whatever will be, will be.
I know the pain doesn't go away with time, but you probably just learn to live with it😢.
Just cry when you need to, but you also know you have reasons to keep pushing forward—two pretty good ones, actually😍 I don't follow pregnancy updates—is it a boy or a girl?
Kate Brooks2 Kate Brooks2 Active Member
74 messages
joined Aug 2011
#3098 ·
I can outline exactly what we’ve been incorporating into our routine, which might offer some useful guidance for your situation as well.
- quail eggs
- royal jelly
- turkey oil and seeds
- Imuno Power
- brewer's yeast
- homemade juice made from apple, beet, carrot, and lemon (half a liter daily)
- Propolis
We have completely overhauled the entire diet. We stripped out all white bread, sugar, salt, and heavy fats.
Every single meal now centers around vegetables; essentially, everything boils down to strict, healthy nutrition.
That said, we didn't force our patient into this lifestyle against his will; instead, we engaged him in conversation and provided books that he chose to read himself, which eventually helped him realize that a change was necessary. So far, there hasn't been a single complaint or any whining about missing unhealthy foods. He likely recognizes the progress being made, which fuels his belief in the power of a clean diet. Good luck!
mistybadger55 mistybadger55 Member
22 messages
joined May 2011
#3099 ·
Angela Wright said:Glioblastoma is a primary brain tumor—along with pancreatic cancer, it’s easily one of the most aggressive things a person can face. My mom’s tumor actually disappeared completely after 30 radiation sessions combined with Temodar (that combo works best), followed by 6 cycles of just Temodar. But after that last round, things started sliding downhill—about 6 months later. Look, you can't really compare different illnesses, but one thing is certain: radiation remains the most effective way to treat tumors, regardless of type. The catch is that it needs to be highly targeted—which is only possible if there's an option for it. Once the disease spreads or metastasizes, targeting becomes incredibly difficult, which is why chemo is used instead.
My advice? Try to get a second opinion from another neurosurgeon—maybe someone like Dr. Paladin at Mount Sinai. If he or anyone else tells you Gamma Knife isn't an option, then it really isn't. You've got nothing to lose.

We were already at Mount Sinai seeing Dinko Mihaljević. There is zero chance any doctor there is going to go against the decision made by one of their own colleagues.🙂 It's pointless to push it—it's smarter to just stop stalling and head in this Monday for the whole-brain radiation appointment. We'll see how things play out from there.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#3100 ·
mistybadger55 said:We were actually at the hospital seeing Smith. There is absolutely zero chance that any doctor from that facility is going to go against the opinion provided by one of their own colleagues.🙂 It’s better not to drag this out; just show up Monday for the appointment regarding whole-brain radiation. We'll see how things play out from there.

Go see the neurosurgeon over at Vineyard, but leave the reports and the opinion from the hospital behind—just bring the MRI scans.

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