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Support resources for families dealing with cancer and other serious illnesses

Started by James Cox6 · · 👁 125 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
#961 ·
Drew Allen said:The line that really jumped out at me was, "The procedure is simple, painless, and prevents tumor growth for the next ten years." Does anyone actually know anything about this?

Gamma Knife technology isn't anything new to us here in the States. That claim about preventing tumor growth for ten years sounds like classic cherry-picking—it was almost certainly pulled from context and likely referred to one specific diagnosis for one specific patient.
With Gamma Knife, certain tumors that were previously unreachable due to their location or how invasive the surgery would have been can now be treated.
Maria Lee54 Maria Lee54 Member
42 messages
joined Oct 2008
#962 ·
Drew Allen;22269579 said:
The sentence that really caught my eye was, "The procedure is simple, painless, and prevents tumor growth for the next ten years." Does anyone know anything about this?

Based on what I've been through, I have to agree with Angela Wright—only certain types of tumors can be treated this way. Unfortunately, that wasn't an option for me, even though we tried. They set up a frame for it (the prep work is honestly pretty unpleasant), and after the MRI, I was just waiting for the doctors to map out the targeted radiation plan. Instead, I got called in for a meeting where they told me the procedure wasn't possible in my case. But I've talked to several patients who had this done successfully, and the results look great.
brisksurfer brisksurfer Newcomer
6 messages
joined Jun 2009
#963 ·
casualrider21 said:My angel is gone
The pain and the grief are just too much. They have completely broken me.

He was strong and so aware until the very last second. The nurses called me from the hospital because he was calling out for me. I ran like a maniac. Even through all that agony and suffering, he was looking at how to make things easier for me; he didn't give a single thought to himself. He managed to say everything he needed to say. And then, he told me he wasn't in pain. My hero.
That night destroyed me.

I hope that in time, the comfort of words and thoughts will help.
Right now, none of it matters.

I am beyond heartbroken.😢🙂


I just read this... honestly, news like this is exactly why I don't have the strength to come on here. 😢

win, my deepest, most sincere condolences! 😢 I know exactly how devastating this would be for me... I am glad your dad fought until his final day, and I am certain someone up above is watching over you. 😘
bluewalker30 bluewalker30 Member
26 messages
joined Aug 2007
#964 ·
Does anyone know where I can pick up Herceptin and what the damage is going to be? I don't live in the US, and the waiting list here is an absolute nightmare.
slyseal28 slyseal28 Member
11 messages
joined Mar 2007
#965 ·
bluewalker30 said:Can anyone tell me where I can pick up Herceptin and what the cost looks like? I don't live in the States, and the waiting lists here are just endless.

You can head to any private pharmacy with a private prescription from your doctor along with your most recent discharge papers.
Steven Ward25 Steven Ward25 Newcomer
1 message
joined Mar 2009
#966 ·
bluewalker30 said:Does anyone know where I can purchase Herceptin and what the cost looks like? I don't live in America, and the waiting list here is just incredibly long...

I recall hearing something about the price once—if I remember correctly, it was around $17,000, which was mentioned as the total needed for a full year of treatment, assuming doses were given every three weeks at 200 $0.00...

You might want to do a little digging online to find some more specific or up-to-date details...

Best of luck to you...🙂
quietraven0 quietraven0 Newcomer
4 messages
joined May 2009
#967 ·
Last night was absolutely brutal, and I honestly can't quite put my finger on why.
Maybe it’s because I wasn't prepared for how intense Mom's symptoms would be—specifically the pain—right after that very first chemo session. I managed to pick up some Zaldiar for her, but it barely made a dent in what she's feeling.
I don't know if it's something else; some people swear by the full moon theory, but I don't really buy into that stuff. Whatever the cause was, it just completely tanked my optimism. I felt this overwhelming sense of exhaustion washing over me.
When I'm dealing with all the stress that builds up during the day, my go-to move is usually cleaning the house. I’ll scrub and tidy until everything is spotless, and once the place is actually shining, I feel exhausted, sure, but also somewhat satisfied.
But the nights... man, some nights are just hard. I wish I were the type of person who could just have a good cry to let it all out, but unfortunately, that's just not how I'm wired.
How are the rest of you handling this? Do you have any tricks for getting through those especially heavy moments?
Frank Wright13 Frank Wright13 Newcomer
3 messages
joined May 2012
#968 ·
quietraven0 said:Last night was brutal, and I have no clue why.
Maybe it’s because I didn't expect Mom's symptoms—specifically the pain—to hit this hard right after the first chemo session. I picked up some Zaldiar for her, but it barely made a dent.
Who knows what caused it? Some people blame the full moon, which I don't really buy, but whatever it was, it completely killed my optimism. I just felt totally drained.
When I'm stressed during the day, I usually deal by cleaning the house. Once everything is sparkling, I feel exhausted but at least satisfied.
But the nights... some nights are just rough. I wish I could just have a good cry to let it all out, but that’s just not how I’m wired.
How are the rest of you handling this? Any tricks for when things get heavy?

Honey, I don't know what trick to give you. I wish I could just let it all out and cry too, but I'm not built that way either. My weekends are the hardest when she comes to stay with me (since she stays at my place after chemo). I don't know if that helps, but I find comfort in my kids to get through it, even though the weight stays on my soul....

I'm just praying for strength for both of us. Hang in there.
Nancy Gomez10 Nancy Gomez10 Newcomer
5 messages
joined Aug 2009
#969 ·
Angela Wright said:I suspect an anesthesiologist might actually be able to offer more practical guidance here.
Furthermore, starting Wednesday, August 26th, a new clinical trial will be launching at the Mayo Clinic involving patients with HER 2-positive metastatic breast cancer who have received Herceptin as their first-line treatment. What makes this particularly noteworthy is that the study isn't merely testing a new drug against an outdated standard; rather, both drugs being utilized in the study (lapatinib and neratinib) are classified as cutting-edge, innovative, next-generation therapies. Additionally, patients with brain metastases can qualify for the study, provided they remain asymptomatic. These trials will also be conducted at Johns Hopkins Hospital and in Cleveland.
If you believe you might be a potential candidate, or if you know someone who could be, please reach out!

Thank you so much for sharing this information! My aunt mentioned she is already participating in something similar—or perhaps it is this exact study—at Johns Hopkins Hospital (though she wasn't quite sure which specific medication was being used).
Nancy Gomez10 Nancy Gomez10 Newcomer
5 messages
joined Aug 2009
#970 ·
quietraven0 said:Last night was an absolute nightmare, and honestly, I can't quite put my finger on why.
Perhaps it’s because I didn't anticipate that Mom's symptoms—specifically the pain—would hit this hard immediately following her first round of chemo. I managed to pick up some Zaldiar for her, but honestly, it has barely made a dent.
I'm not entirely sure what triggered it—some people say it’s been a full month, though I can't say I quite follow the logic behind that—but whatever the cause, it has completely wiped out my optimism. It's gone. I've just been overwhelmed by this profound sense of fatigue.
When I find myself overwhelmed by stress throughout the day, my go-to remedy is usually to tackle some deep cleaning around the house. There is something about organizing and scrubbing everything down that helps me reset. By the time I look around and see the whole place actually sparkling, I inevitably feel exhausted—but there’s also this profound sense of satisfaction that comes with it.
There are certain nights—the kind that just sit heavy on you. I often find myself wishing I could just let it all out, have a good cry and get it over with, but unfortunately, that’s just not how I’m wired.
How are the rest of you all coping with this? Does anyone have a specific trick or strategy they lean on when things start getting particularly heavy?

When my grandfather was battling cancer, it was an incredibly harrowing experience. During that time, I leaned heavily on certain principles I had learned through my academic training. My mindset was simple: there is absolutely no practical benefit in sitting around wallowing or complaining—though, granted, everyone needs to vent occasionally—so it was much better to simply give everything I had. I gave 120%, if necessary, just to ensure I did whatever was within my power. That was my approach throughout his illness. Whether it was helping him walk, assisting with bathing, feeding him, reading the news aloud, or practicing breathing techniques with him, I did everything I possibly could. That was enough. I focused my energy on the variables I could actually control (even if that meant being a constant, nagging presence for the doctors), and for the things beyond my influence, I simply had to trust that everything would unfold as it must—whether the outcome was positive or negative. I didn’t try to force a specific result or wish for a particular timeline; I accepted that things happen when they are meant to happen. My grandfather suffered significantly, and there were moments when medication alone wasn't enough to ease the pain. However, having my unwavering support and knowing that I was giving my all—that I wasn't giving up while he fought his own battle—made a difference. You really have to try to remain calm, because your composure directly impacts your mother's peace of mind as well. Moving slowly, staying patient, and taking it one step, one hour, and one day at a time is how you truly help both yourself and her. That feeling of helplessness can be overwhelming, but it is often temporary, especially if you rely on what I call the STOP-THINK-DO method. When those waves of helplessness hit, use this technique: Stop, take a slow breath, and then think. Ask yourself: What am I feeling right now? Why am I feeling this way? What exactly is the core of this issue? What do I want to do, and more importantly, what *can* or *must* I do? How can I achieve that, and is it actually worth doing for my own sake or for others? What is the ultimate goal here? Give yourself permission to take your time. If what you "must" or "can" do in that moment is to spend three hours ironing, staring out the window, or crying, then do exactly that. Lastly, don't underestimate the importance of your support system. Sometimes, a hug without any words at all, or simply sitting together in silence, is the most powerful thing you can offer. There is immense comfort in the mere fact that "they are right here by my side; even if they don't fully understand, they are trying, they are present, and I am not alone."

I know how gut-wrenching it is to watch someone you love struggle like this—I went through my own eight months of hell dealing with similar circumstances. But when you strip everything else away, the most important person in this entire situation is the patient. As family members, we matter, certainly, but we aren't the ones actually carrying the weight of that physical suffering on our own skin. We aren't the ones experiencing the direct pain, nor are we the ones facing that existential terror of mortality. Because of that, I believe we have to try to pull ourselves together in these moments. We need to act with reason and composure so that we can actually make life easier for our loved ones and provide them with the support they need to fight the disease and all its complications.

I hope my input was somewhat helpful. :-)

To everyone else here on the forum who has lost a loved one: please know how deeply sorry I am. I truly understand what you're going through, and my sincere wish is that you find the strength to heal from this loss and gather the resilience needed for whatever battles lie ahead.
Sending a big hug and my best regards to you all!!!
Stay strong!!!
quietraven0 quietraven0 Newcomer
4 messages
joined May 2009
#971 ·
Kate Reed63 said:I'm just praying to God that I find the strength to get through this, and I'm keeping you in my prayers too... stay strong.

Kate Reed63,
even if you don't have some magic "trick," what you just wrote really means a lot to me. Thank you for that.
Frank Wright13 Frank Wright13 Newcomer
3 messages
joined May 2012
#972 ·
quietraven0 said:Kate Reed63,
even without some magic "trick," what you wrote really means a lot to me. Thanks for that.

No need to thank me. I'm just glad if I could make things even a little easier for you... or anyone else.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#973 ·
Nancy Gomez10 said:Thanks so much for the heads-up!!!! My aunt mentioned she’s already taking something similar (or maybe it actually is this exact thing) over at Rib (she couldn't quite remember the specific name of the medication).

Tell your aunt that she needs to stay fully informed and know exactly what's being done to her at every single step. She can't afford to be in the dark about which medications she's being given. It’s critical—if she isn't paying attention, she risks someone making a sloppy mistake or cutting corners with her care. She needs to be the one holding the reins here.
quietraven0 quietraven0 Newcomer
4 messages
joined May 2009
#974 ·
Nancy Gomez10 said:When my grandfather was battling cancer, it was absolutely devastating to deal with. However, I leaned on some principles I learned during my clinical training. What really helped me was shifting my mindset—I realized there was almost zero benefit in just sitting around wallowing or complaining (I mean, sure, you need to vent sometimes, but not constantly). It was much better to give it everything I had, even going at 120% if necessary, just to do whatever I could. That’s how I handled things while he was sick—whether it was helping him walk, assisting with bathing, feeding him, reading the news to him, or practicing breathing techniques. I did the absolute most I could, and that was it. I focused my energy on what I actually had control over (even if that meant being a total pest to the doctors). As for the things beyond my control, I just had to trust that everything would work out—for better or worse—and eventually settle where it needed to be. Not because I was forcing it or wishing it into existence, but because things happen when they happen. My grandfather was in a lot of pain, and sometimes medicine just wasn't enough, but having that support—knowing I was giving my all and staying right by his side while he fought—made a difference. You have to try to stay as calm as possible, because if you stay composed, your mother will stay calmer too. Just take it slow, stay steady, and have patience. One step at a time, one hour at a time, one day at a time... that’s how you can truly help both yourself and her. That feeling of helplessness can be overwhelming, but it can also be temporary... especially if you rely on what your head tells you to do, specifically the STOP-THINK-DO method. When those feelings hit, that technique is a lifesaver. Stop, take a deep breath, think about what you actually want in that moment, why you're feeling this way, what the core issue is, what you want to do, what you *can* or *must* do, how to achieve it, and honestly, whether doing it is actually good for you or others, and what the ultimate goal is. Give yourself time... if what you "must" or "can" do is spend three hours ironing, staring out the window, or just crying, then go ahead and do that. Having support from friends and your community is also vital. Even just a hug without saying a single word, or sitting together in silence, can help. Just knowing, "Aha, they are here by my side, and even if they don't fully understand, they are trying, they are here, I am not alone," makes all the difference.

I know how hard it is to watch someone suffer like that because I went through those hellish eight months myself, but in any situation like this, the person who is ill is the priority. We, as the family, are important, but we aren't the ones directly carrying the weight of that suffering on our own skin. We aren't the ones experiencing the physical agony or the existential fear of facing death. That's why we have to try to pull ourselves together in these moments and act rationally so we can ease the burden on our loved ones and help them fight the illness and everything else that comes with it.

I hope this helps a little bit. :-)

Also, to everyone on the forum who has lost someone: I am so incredibly sorry. I understand what you're going through, and I truly hope you find healing from your loss and regain the strength for whatever battles lie ahead.
Big hugs and best wishes to everyone!!!
Hang in there!!!

007JasonBourne,
It’s so kind of you to put so much effort into such a long post. Advice from someone who has actually been in the trenches in a similar situation always hits home.
The STOP-THINK-DO method really does work.
Sarah Perez59 Sarah Perez59 Member
11 messages
joined Sep 2009
#975 ·
My best friend was just diagnosed with Hodgkin lymphoma.
I can never remember how to spell it—I always have to Google it and then, like an idiot, copy and paste it back. The word itself just feels wrong—I can't even wrap my head around it properly.
She’s facing chemo now. She hasn't started yet, but she’s got this endless marathon of tests lined up to see if it’s spread to any other organs.
I honestly don't know what's coming...
I had so much I wanted to say, but now I'm just empty.
We only found out yesterday. She spent the whole day in total denial, insisting she’ll be out partying before we know it...
I'm seeing her today, and I need to hold it together—for her sake and because she needs me there.
I have to face this—being strong and positive doesn't mean ignoring reality or being delusional.
She has to face it too, obviously—the doctor said it's treatable, but they have to go all in to get her healthy again...
Yesterday, I just broke down crying. It doesn't feel real. She was finally starting to feel truly happy, too.
But dwelling on "what ifs" won't help. This happened. It is what it is. Now, there's just the fight.
My stomach has been in knots all day.
Honestly, nothing hits harder than this feeling of helplessness—not knowing what happens next, or how bad it's going to get...
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#976 ·
Sarah Perez59 said:My best friend is dealing with some kind of lymph node disease.
I can never remember the actual name—I always have to Google it just so I don't look like an idiot copy-pasting it. There’s just something about the word itself that feels wrong; I can barely even wrap my head around it.
She's facing chemotherapy. She hasn't started yet, but right now she's stuck in this endless loop of tests to figure out if it's spread to other organs.
I honestly have no idea what lies ahead...
I had so much more I wanted to say, but now I'm just completely drained.
We only found out yesterday. She spent the entire day in total denial, insisting she’d still be out partying like nothing happened...
I'm seeing her today, and I have to stay strong—for her and by her side.
I need to face this head-on. Being strong and staying positive doesn't mean ignoring the reality of the situation or being delusional.
She has to face it too, obviously. The doctor said it's treatable, but they have to go all in to get her healthy again...
I was a complete wreck yesterday, crying my eyes out because I can't believe this is happening to her. She had finally reached a point where she was truly happy.
But dwelling on "what ifs" won't help. It happened, it's real, and now there's a fight to be won.
My stomach has been in knots all day.
Honestly, nothing beats the feeling of absolute helplessness—that crushing uncertainty of not knowing what happens next or how bad it gets...

It's most likely either Hodgkin or Non-Hodgkin.
Lymphomas fall into a category of cancers that generally have very high success rates with treatment.
Hang in there and keep being her rock. She's facing a massive hurdle, and while it's going to be exhausting and incredibly tough at times, she's going to beat this.
Drew Allen Drew Allen Member
43 messages
joined Apr 2009
#977 ·
Angela Wright said:It is most likely either Hodgkin or Non-Hodgkin lymphoma.
Lymphomas fall into a category of cancers that generally respond very well to treatment.
Stay strong and be her rock. She has a hurdle to clear right now. It will be exhausting and there will be dark days, but she is going to beat this.

I agree completely. Even those who tend to distrust mainstream medicine—the "alternative" crowd—often acknowledge high success rates when it comes to treating these specific types of illnesses. There really isn't much room for panic here. Just keep moving forward. 🙂
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#978 ·
Sarah Perez59 said:My best friend has been diagnosed with lymphoma.
I can never seem to get the name right—I always find myself having to Google it just so I can copy and paste it like an absolute idiot. There is something about the word itself that feels inherently repulsive, making it nearly impossible to commit to memory...
She’s facing chemotherapy now. She hasn't started yet, but she’s currently scheduled for a million different tests to determine if any non-lymphatic organs have been affected.
I honestly don't know what lies ahead, I really don't...
I had so much more I wanted to say, but now, I am left without a single word...
We only found out yesterday, and she spent the entire day in total denial, insisting she’ll be back out partying before we know it...
I’m seeing her today, and I need to remain strong, both for her sake and simply by being there at her side.
I have to face this head-on—being strong and staying positive isn't about running away from reality or being delusional.
She has to confront it too, obviously—the doctor mentioned it is treatable, but every possible step must be taken toward recovery...
Yesterday, I just broke down; I couldn't believe any of this was actually happening to her. She had only just recently started finding true happiness.
But dwelling on that serves no purpose. It happened, it is what it is, and there is nothing left to do but fight.
My stomach has been in knots all day.
Truly, there is no sensation quite as wretched as helplessness, or the crushing uncertainty of what will happen and how...

They say you truly know your friends during times of crisis... stay brave and offer her unwavering support, try to coax a smile out of her and give her hope... let her spirit remain strong so that her body might follow suit. My father is still alive, healthy, and full of life even after thirty-four years following a similar diagnosis.

Unfortunately, illness doesn't care about age, and while it’s shocking for you to process, just imagine how devastating this is for her personally—so please, do not let yourself feel defeated by it. Your strength lies in liberating her from those dark, heavy thoughts and continuing to be the best friend she has always known.👍
James Cox6 James Cox6 Active MemberOP
150 messages
joined Mar 2009
#979 ·
She passed away... in her sleep... 🙂
Words can't even touch this level of grief... I feel like my heart is actually going to break 🙂
.... this pain is just unbearable
Frank Wright13 Frank Wright13 Newcomer
3 messages
joined May 2012
#980 ·
Susan Diaz91 said:She passed away... in her sleep. 🙂
Words can't even touch this level of grief. I honestly feel like my heart is about to shatter. 🙂
God, this pain is unbearable.

Lara, I’m so sorry... please accept my condolences. I know how hard this is, but just try to remember she's in a better place now, watching over you and little Larica from above.

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