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Support resources for families dealing with cancer and other serious illnesses

Started by Angela Wright · · 👁 42 views · 1.2K replies

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Participants Angela Wrightmelloworca6Kimberly Cox58vividsailor7crimsongull20wearytrucker22Jamie Chaseneoncrane83slysurfer14Roger TaylorNancy Leevelvetmoose9Amy Torres4Chris Howard92Frank Johnson4Linda Ortiz49nimblepanther14feraldrifter6amberridge21Kevin Bishop10Charles Williams13coppermason13restlessowl3Dana Thomas6 …
electricmaker22 electricmaker22 Newcomer
1 message
joined Nov 2013
#981 ·
Bitchy as always, but maybe try some bronco cough drops... I know a few people who swear by them.
steeleagle152 steeleagle152 Newcomer
9 messages
joined Jun 2011
#982 ·
My dear dad lost his fight with that monster tonight. :'(

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mistyjackal842 mistyjackal842 Active Member
206 messages
joined May 2012
#983 ·
steeleagle152

I am so incredibly sorry for the loss of your dear father. I’ve been following your fight to save him, and my heart just goes out to you... I guess I feel it so deeply because I went through something very similar with my mom recently. Even the hospital was the same one, though they weren't in the exact same departments. Honestly, I wouldn't wish that kind of experience on anyone—going to the Mayo Clinic and dealing with the inhumane treatment I had to endure during my mom's so-called "care." They denied my father antibiotics at the Mayo Clinic, just like they did to my mother, and... well, that's why she lost her battle too.

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Linda Patel21 Linda Patel21 Active Member
108 messages
joined Feb 2014
#984 ·
steeleagle152, I am so sorry. Sending you my sincere condolences.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#985 ·
steeleagle152 said:My dear dad lost his battle with that monster tonight. :'(

Sent from my Samsung Galaxy using Reddit

Please accept my deepest condolences.😢
I hope you and your family find peace as you mourn him and eventually find the strength to move forward. Hang in there.
melloworca6 melloworca6 Regular
551 messages
joined May 2010
#986 ·
For the hundredth time on this thread, I’m reminding you all to actually follow the rules in this Health PDF:

Maria Fisher46 said:Hey everyone on the forum,

We're adding some more detail and clarification regarding the rules for discussing alternative treatments—basically anything that falls outside the realm of mainstream medicine:

The rules have been updated and expanded. Please read them carefully—breaking them will result in sanctions.

The PDFs for Health and Child Health are strictly regulated. Forbidden. There are three ways people usually handle this: you can share your own story to shine a light on what worked—basically just saying, "Hey, this helped me, but don't feel like you have to do it if you don't"—or you can just ask around to see if anyone else has had success with it. Then there's the third option, which is just pushing an agenda or being overly positive and affirmative about something.

Let’s talk about all those "alternative" treatments that aren't actually medicine. The medical community views them as genuine threats to people's lives and health. I'm not going to get into the specifics of things like MMS drops, colloidal silver, or that "Vitamin B17" nonsense—those are just straight-up poisons. But regardless of what anyone claims helped them, if it isn't legitimate medicine, it's dangerous. Period.

b) regarding all those various "healing" methods that don't actually fall under real medicine—excluding just the herbal remedies, vitamins, minerals, and dietary supplements (for the record, discussing homeopathy, bioenergy, biorezonance, and stuff like that is strictly off-limits), regardless of whether someone personally feels like those methods actually worked for them.

c) You aren't allowed to tell someone—either straight up or by dropping hints—to quit a treatment that their doctors have prescribed according to standard medical protocols.

You can talk about herbal remedies, vitamins, minerals, and supplements here, provided we aren't discussing life-threatening poisons. Also, don't you dare suggest—directly or otherwise—that anyone should ignore their doctor's orders or go against professional medical advice. Stick to the rules.


Can we please stop talking about that famous B17 vitamin or apricot kernels in here? Seriously. There’s an "Alternative Medicine" PDF available, and if I recall correctly, there’s even a dedicated thread for that stuff. Feel free to go there and vent as much as you want. But in this space? It’s banned until the medical experts actually give it the green light.

Edit: Everything has been cleared out. Stop dragging this topic through here. If anyone is confused about why, just send a DM to the moderators or start a new thread on the main forums.
Ronald Hughes10 Ronald Hughes10 Newcomer
3 messages
joined Dec 2013
#987 ·
It's my first time posting on this forum, and honestly, I don't even know where to begin...
Back in May, after an operation where she lost two-thirds of her stomach, her spleen, and part of her pancreas, my mom was diagnosed with pancreatic cancer. I don't even dare think about how much weight she's lost. She's made the decision to decline any further treatment.
The PET CT scan from July confirmed the diagnosis, though it left some shadows on her lungs that might be metastases.
Even if she actually wanted to fight it—which she doesn't—she’s just too weak for chemo right now, and frankly, the prognosis is questionable, as is her quality of life.
As for her quality of life currently: thankfully she isn't in pain, but instead, she deals with constant, intense, and incredibly unpleasant nausea. She's vomiting very frequently, constantly spitting saliva, complaining about acid reflux, and groaning; you can see how much she's struggling. Because of all this, she can barely eat... she's actually afraid to eat because there's no food she can rely on not making her vomit—there are simply no rules. One day a bit of cooked fish will upset her, and the next, she'll eat beans without any issues. To help with the nausea and appetite, we've tried almost everything: from the usual ginger remedies and baking soda to Zofran, Megostate, and several other prescription medications, even homemade hemp oil. Nothing works. Everything seems to help for a couple of days, and then it stops working entirely. I don't know if it's because she's given up or if the medicine just isn't doing its job anymore.
She doesn't get out of bed at all except to go to the bathroom, but now her foot is swelling and hurting. She doesn't want doctors coming to the house, but the doctor says it could be from lack of movement, maybe a blood clot, or perhaps some kind of vein inflammation... so we're applying boric acid compresses.
It's all just terrifying—I'm already losing my mind; I feel helpless and so angry at everything—at her, at myself, just at everything, and I don't know how to cope anymore.
I'm scared that if she sees what kind of state I'm in, things will only get worse, but I'm at my breaking point and I just don't know what to do... I know no one here can truly fix this, but just having a little bit of emotional relief helps.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#988 ·
Ronald Hughes10, look, if that’s what Mom has decided, then that’s what she’s decided. Some people will tell you she’s making a mistake, but honestly, others who have stood in those exact same shoes will probably tell you she made the right call...
The reality is this: we are talking about a terminal illness. At this stage, the goal shifts to palliative care—managing the symptoms and actually improving her quality of life rather than fighting a losing battle. Try sitting down with her and explaining it like this: tell her you respect her decision and that you accept her choice not to pursue aggressive treatment, but ask her, out of respect for you and your own peace of mind, to at least embrace palliative care.
You should also reach out to a local hospice organization. You can find plenty of contacts online; just give them a call. They have field volunteers who specialize in this, and they can help you figure out what else can be done to make things easier for both her and for you.
Keep being this brave.
Nathan Chase7 Nathan Chase7 Member
11 messages
joined Oct 2012
#989 ·
I’m not a member of the family, but I really need some advice.
A close friend’s father was diagnosed with a brain tumor a few months ago.
It’s terminal; they aren't planning surgery because the survival rate is basically zero percent.
She’s actually finishing up medical school, so she understands the clinical reality of this better than most—she knows exactly what’s happening.
He’s been going through radiation and chemo, and he just had an MRI. She got the results back today, and the tumor has spread significantly. They can't even tell if he has weeks or months left, and they’re sitting down to talk to him about it today. 😢 We were all just holding onto this tiny shred of hope, praying there might be a miracle or at least a few more years together.
My question is—how should I act to actually be helpful to her?
Whenever she calls, I usually find myself at a loss for words. I end up falling back on the usual clichés: "stay strong," "hang in there," "it'll be okay," "just breathe," "I'm here for you," or "call me anytime, day or night."
I feel like I’m being completely useless, and I genuinely want to be someone she can lean on.
How should I carry myself, and what can I actually say?
I’ll also be seeing her father, her mother, and her sister soon... 😢
Is there anything meaningful or wise I can say to them?
Olivia Cook48 Olivia Cook48 Newcomer
7 messages
joined Dec 2013
#990 ·
Just writing the first sentence of this post, and the tears have already started flowing...
After finally letting myself cry, I want to say THANK YOU to all of you for sharing your struggles with others who are stuck in the exact same unbearable situation.
I’ve been scrolling through your posts, finding hope on one page only to be met with crushing disappointment on the next... but pages follow pages, and I suppose my post will just be one more in a long line of them, unfortunately.

I am looking for your advice, guidance, or anything at all that might help my mom and me.

Two weeks ago, we got the diagnosis: lung cancer.
Mom is 65. Until now, she was a perfectly healthy woman.

Discharge papers:

Right lung carcinoma (adenocarcinoma)
Adrenal gland metastasis
Bone metastasis

From the report:
Chest and heart imaging: left infrahyaloid infiltrative shadowing.
Abdominal ultrasound: two lesions up to 7mm in the left hepatic lobe, corresponding to hemangiomas. Left adrenal gland is enlarged. Tumor markers: CA 13.0, CYFRA21-14.0, NSE 6.8.
Thoracic CT shows a mass measuring 4.5x3.4x4.2cm in the upper segment of the lower lung lobe, which completely obstructs the bronchus for the right lung's lower lobe. No signs of mediastinal lymphadenopathy. Visualized skeletal parts show no signs of osteolysis. Liver shows no focal lesions. Both adrenal glands are enlarged and, based on CT characteristics, likely represent metastases.
Bone scintigraphy: increased metabolic activity in the posterior aspect of the left rib, the area of the left acetabulum, and the adjacent part of the left ischium; etiology remains unclear. There is a spot of slightly increased metabolic activity in the distal part of the left femur shaft (near the medial contour). Increased metabolic activity in the right knee appears to be degenerative in nature.
Started the first cycle of PKT.

Please don't try to interpret the medical jargon for me; just identify the most critical parts. I am not a medical professional and I have never dealt with findings like this before.

It all started with pain in her leg and "in her lungs," as Mom would put it. Her primary care doctor treated her for pneumonia for three months. In those three months, she lost 12 pounds (she's down to 117 lbs now). It wasn't until we pushed persistently that she finally got a referral to a pulmonologist. They sent her straight for a bronchoscopy, and that's how I finally reached the truth.

The doctor at the hospital told me immediately that this was strictly for chemotherapy and that we should prepare for the worst—anywhere from two months to two years. They were vague about the bone findings—at least, that's what she told me. But the disease is such that it can be characterized as metastatic. (That doesn't make sense to me—shouldn't they be doing more tests to confirm that???)
She started chemo just four days after the diagnosis. She handled the first round terribly. The second had to be delayed because of low white blood cell counts, but she finally received it yesterday.
Yesterday, I finally sat down with her oncologist. He said something to me that I just cannot shake. I'm gathering all the paperwork and we are going to go get a private opinion to verify everything. Looking at the results, he suggested that if the knee issue is a metastasis, it isn't large. So, what do you even do then? Surgery? Nothing makes sense.
Honestly, the doctors are just so disinterested and cold; they leave you feeling totally distrustful... it's awful. Every day I was at the hospital asking questions, digging through the internet just so I'd know what to ask, and the answers were always: "wait," "we don't know," "results haven't arrived yet," "don't get your hopes up..." And now Mom has been discharged home, and we haven't told her that it might be in her bones. She's terrified of that because she knows that once it hits the bone, you're looking at six months.

What do I do now, people!? Am I grasping at straws or...

We bought her beta glucan, Zofran, aloe vera... everything I could find online that might help... she’s also been given some nutritional shakes (those high-calorie drinks).

Please, please write back...
Thank you, thank you, thank you.
Linda Patel21 Linda Patel21 Active Member
108 messages
joined Feb 2014
#991 ·
Hey Eurydice, I'm so sorry you're dealing with all this crap. It’s a rough situation, but I know people who have successfully fought this diagnosis. I don't know a ton about it myself, but honestly, you should probably get a second opinion from another doctor,
. I know Dr. Cepulic is solid. He runs a private practice, so it's not cheap, but if you can swing it... I really hope you find someone who actually knows their stuff regarding this type of carcinoma. Good luck!
mistyjackal842 mistyjackal842 Active Member
206 messages
joined May 2012
#992 ·
Grace Adams49

Maybe I can offer a little advice. Just keep being the friend you've always been. Honestly, it’s not really about the specific words you say; what matters most is just being there by her side. I recently lost my mom quite suddenly in the hospital, and having my best friend's support meant everything to me. She couldn't really come over to my place since she’s mostly raising her little boy on her own, but we talked on the phone all the time. She was at the funeral, too, and she made sure to send her condolences to my mom. Later on, I started going over to her house, and somehow, when I'm there, I can almost forget all the pain regarding my mom's illness... plus, I just love playing with her little son. Losing a beloved mother is probably the worst thing that could ever happen to me, at least for me. Especially because Mom had actually started to show some signs of improvement at first. I guess I envy everyone who still has their mother.

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Linda Ortiz49 Linda Ortiz49 Member
27 messages
joined Nov 2013
#993 ·
Olivia Cook48, I honestly don't know much about the diagnosis itself, but I'm sure someone will jump in soon who actually knows what they're talking about. I mean, unless I totally misunderstood you—if you were suggesting that bone metastases mean there's only a six-month window left... well, I actually know two women who have bone metastases, and one of them has been living with it for four years now, and the other has been dealing with it for about ten years since they first found out. In both cases, it all started with breast cancer, but everything has been kept under control successfully, and honestly, those women are doing quite well...
Casey Phillips18 Casey Phillips18 Member
13 messages
joined Sep 2008
#994 ·
Olivia Cook48, I am truly sorry. I know exactly how you must be feeling. 😢 In a situation like this, the only real options left are chemotherapy and radiation, since the tumor itself is inoperable due to metastasis—according to the discharge papers, there’s spread to the bones and the adrenal glands. That hemangioma on the liver shouldn't be a cause for concern, though, as those aren't malignant. When dealing with illnesses like this, bone pain usually suggests metastasis, which is typically treated with radiation. It seems quite important to understand how your mother is doing overall—is she still losing weight, or is she experiencing more intense pain?
Olivia Cook48 Olivia Cook48 Newcomer
7 messages
joined Dec 2013
#995 ·
Linda Patel21 said:Dear Olivia Cook48, I am so sorry you have to deal with all of this. Things aren't looking great right now, but I know people who have successfully fought this diagnosis. I don't know much about it myself, but maybe you should seek out a second opinion from another doctor,
. I know Dr. Cepulic is excellent. He runs a private practice, so it isn't cheap, but if you can swing it... I hope you find someone who specializes specifically in this type of carcinoma. Good luck!

Thanks for the support.
It’s clear things are grim. My sister and I were just discussing how we’ve completely redefined what "good news" means over the last two weeks. Suddenly, "good news" meant her white blood cell counts improved enough to start chemotherapy...
The very first night after we got the diagnosis, I actually thought to myself, *what if I just won the lottery?* What good would that money even do me? This is an incurable disease.
Everything always comes back to money; it seems like those with deep pockets are the only ones who can truly fight the illness.
I'll try to get an appointment with that specialist to get his take. I don't have any connections—no family doctors or anything—but you always have to try everything you can.
hollowridge88 hollowridge88 Active Member
50 messages
joined Aug 2014
#996 ·
Yes... honestly, that’s been the most uplifting news we've received so far.

My sister forgot to mention that she’s feeling some lumps on her body that feel fixed to the touch and have these strange, irregular shapes; we were told that this happens when the tumor starts spreading or breaking out from the primary site... does anyone know what that might actually imply? How much of a concern should we be about those lumps?
Olivia Cook48 Olivia Cook48 Newcomer
7 messages
joined Dec 2013
#997 ·
Linda Ortiz49 said:Olivia Cook48, I don't know anything about the specific diagnosis, but I'm sure someone who actually understands this will chime in soon. Unless I misunderstood you—if you mean that bone metastasis means having only six months left—well, I personally know two women with bone metastases. One has been living with it for four years now, and the other has been dealing with it for nearly a decade since her diagnosis. In both cases, it started as breast cancer, but they've managed to keep it under control and they're doing just fine...

Thanks, Linda Ortiz49. I really hope my mom gets many more years, too. She’s already planning out the weddings for her three grandkids (the oldest is 4 and the youngest is only 8 months old).
That "six months" figure came straight from the hospital staff... and she is absolutely terrified of the idea of "it spreading to the bones." That's exactly why we decided to keep that part from her. She has her own way of looking at things. Once she finishes chemo, she goes in for surgery, and we're aiming for everything to turn out okay.

Back in the spring, she felt a lump in her breast and went straight for a mammogram and a biopsy. They told her it was just a cyst. Now, whether that's where this all started or not? We have no clue.
All I know is how fast this whole thing spiraled. It’s terrifying. Just a month ago, she was struggling with nothing more than a cough, and now look at her... it's devastating.
Olivia Cook48 Olivia Cook48 Newcomer
7 messages
joined Dec 2013
#998 ·
Casey Phillips18 said:Olivia Cook48, I am so incredibly sorry. I know exactly what you're going through. 😢 In a situation like this, the only options left on the table are chemotherapy and radiation. Because of the metastasis found in the bones and adrenal glands according to the discharge papers, the tumor is considered inoperable. That hemangioma on the liver isn't something to worry about since it's benign. When dealing with diseases like this, bone pain usually points toward metastasis, which they typically treat with radiation. It is absolutely critical to know how your mom is holding up—is she still losing weight? Is the pain getting worse?

She is experiencing bone pain. Specifically, her femur and a rib, based on what we've observed. So, does that basically confirm there are metastases in the bones!?

She was only 53 kg when they admitted her to the hospital. In my opinion, her general condition is poor. She can't sit for long, she can't walk, she can't even lie down... though the oncologist concluded during the pre-chemo exam that her general state was fine.
Now we are just waiting for the next round of chemo. The oncologist informed us that the next one will be a "long" one. I don't think he's talking about the duration. The first one lasted 4 hours, the second was 1 hour, and now apparently it's a "long" one.
On Tuesday, we are heading to the outpatient pain management clinic. I've already scheduled an appointment for her there.
Olivia Cook48 Olivia Cook48 Newcomer
7 messages
joined Dec 2013
#999 ·
hollowridge88 said:Yeah... honestly, that was the best news we’ve heard so far.

My sister forgot to mention that she has these lumps all over her body. They feel fixed when you touch them—weird, irregular shapes. We were told they’re just signs that the tumor has started spreading, essentially breaking out through her... but what does that actually imply? Just how dangerous are those lumps?

By the way, hollowridge88 is my sister. She completely blanked on mentioning those lumps.
Lawrence Wells Lawrence Wells Regular
312 messages
joined Jun 2006
#1000 ·
Olivia Cook48 said:By the way—hollowridge88 is actually my sister. I totally forgot to mention those lumps earlier.

Where exactly are these lumps located?

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