Resources and support for families dealing with cancer and serious illness

Dear George,
I am so incredibly sorry for your loss. I lost both of my parents within just eight months, so I know exactly what this kind of heartache feels like. You’re going to need every ounce of strength you can muster right now. If you ever just need someone to talk to, please don't hesitate to reach out.

Reading through all this, your stories and advice really help me get by. But man, reading about someone losing their fight... it just hits hard. It’s depressing. I try to stay positive, but honestly, I can't help but break down sometimes. It's heavy seeing so many people fighting this same battle. My heart goes out to them.
I’m right at the beginning of this mess. I mentioned my dad's surgery before—he had a second one, spent a month in the hospital, and finally made it home today. Seeing him so happy to be back is the only good thing right now. Then I start thinking about what comes next... I tell myself it won't be that bad and everything will work out, trying to keep my head up. I don't talk to him much about the scary details. Sometimes I wonder if he actually realizes how bad it is, but part of me hopes he doesn't. He needs to just relax and save his strength. First order of business: fixing his diet. They removed his stomach, so he's lost a ton of weight and needs to bulk back up before chemo starts. The problem is, his capacity is tiny, he has to be picky, and no sugar allowed. If anyone here has dealt with nutrition after a total gastrectomy, could you let me know if artificial sweeteners or milk (like for porridges) are okay? What kind of high-calorie meals actually work? I'm looking everywhere, but the advice is all over the place. Might seem trivial, but knowing this would be a huge help.

Linda Hill29 said:I spend my days reading through everything here, and your shared experiences, your advice, and even your enthusiasm provide such immense comfort... yet, at the same time, I find myself overcome by sadness whenever a tragic update appears... a lost battle... sheer despair. I try my best to maintain an optimistic outlook, but I cannot help myself; I truly find myself weeping, unable to wrap my head around how many people are fighting this exact same fight. It breaks my heart...
I am still in the early stages of all this; I have already mentioned my father’s first surgery, then his second, followed by a month-long hospital stay, and finally, he is home today. He is so incredibly happy to be back, and seeing him like this is a genuine relief. Yet, my mind inevitably wanders to everything that lies ahead... surely it won't be quite as grim as feared, right? Everything will work out fine, I tell myself... though it is difficult. I don't say much of this to him. Sometimes I wonder if he realizes the gravity of our situation, while simultaneously hoping that he doesn't... that he can just relax and gather his strength, and let the rest unfold naturally. The immediate priority now is his nutrition. Since his stomach was removed, he has lost a staggering amount of weight, and he needs to regain it before he can begin chemotherapy. But the challenge lies in the fact that his capacity is so limited; he has to be extremely selective about what he eats, and sweets are strictly off-limits. If anyone here has experience managing nutrition following a total gastrectomy, could you tell me if artificial sweeteners or milk—perhaps for making porridges—are acceptable options, or what kind of high-calorie meals might work? I am searching everywhere, but the information I find is so contradictory... It might seem like a trivial detail to some, but knowing this would mean the world to us.

Hello Linda Hill29,

One must maintain faith in every struggle! There will always be battles with positive outcomes and those with negative ones, but one should never, even for a moment, abandon the fight, because cancer certainly doesn't know the meaning of surrender!

I am not entirely sure how to help a body compensate for lost nutrients when there is no stomach left to process them! You should absolutely consult with your doctor and ask for their specific recommendations. In our case, we started using Prosure—those chocolate-flavored protein shakes—because they were palatable to my mother. They are quite calorie-dense and can be picked up at most pharmacies!

And please, nothing is too small a detail; it is always worth asking. As the saying goes: better to ask than to wander aimlessly in doubt!

Just stay brave, because after all... fortune favors the bold. Kisses.

Charles Newman said:... my mother passed away

I am so incredibly sorry, George. Please hang in there.

Hey everyone,
Honestly, it weighs on me and makes me incredibly sad that every single time I check in here, my first task is to offer condolences. So, once again, I want to express my deepest sympathy to George regarding the passing of his mother. Death is an unfortunate reality of life, and we all do everything in our power to push it as far into the future as possible.

With that in mind, we are doing everything within our reach to make this journey with glioblastoma as successful as possible. For now, it seems to be working.

My wife had an MRI last week, and they notified us yesterday that things still look "clear"—meaning there’s no recurrence. We're just waiting for the paperwork to arrive in the mail.

Thanks to the people helping us and providing support—and most importantly, my wife's unwavering faith in healing through God's grace—we are pushing forward bravely.
She is a completely normal person; anyone who doesn't know her would never guess she's sick. She's on her feet all day, handling everything, hitting the farmer's market, reading, doing crosswords, and living life just like anyone else. Occasional issues with short-term memory aren't a major hurdle for us right now.

We are continuing with the body detoxification and correcting the imbalance of minerals and trace elements. This time, we are basing it on the results of heavy metal mobilization via a DMPS urine test (essentially Metallo-Chelation therapy), which was conducted at the TOXIBA institute in Basel. Since DMPS heavy metal mobilization must be paired with orthomolecular micronutrient therapy, her daily supplement dosage will actually increase over the next two to three months.
Financially, this is becoming harder to manage, but we're making ends meet for the time being.

We also know all too well what we're up against, so we offer daily prayers to show our gratitude to God, the Virgin Mary, and dear Jesus for showing us mercy and giving us the strength to deal with this disease. And we don't just pray for ourselves; we pray for all those who are suffering. I might have been a skeptic regarding prayer in the past, but today, it is an essential part of my daily routine. And I believe—I truly, unconditionally believe—in her recovery. I believe in it more than I believe in my own life. I can't shake the feeling that the novenas being prayed for her in so many places have helped my wife keep going. And so far, she's still going strong.

In the midst of this whole life story, my own current condition is a bit of a distraction.
Angela Wright and brightgardener8, thanks for asking about the surgery results. I don't quite know whether to feel happy or sad about it, but there was no surgery. It turns out the AVM malformation is too extensive for surgical intervention. Instead, I've been referred for embolization. In this procedure, they'll perform several sessions to cut off the blood supply to the nidus—the knot where arteries connect directly to veins—and redirect the blood flow into capillaries. It's less invasive than surgery and carries less risk (or so I hope in my case). The only catch is that they currently don't have the necessary material—the endovascular glue used for the procedure. So, I'm basically "on hold." I'm on medical leave, dealing with constant pressure in my head and ringing or buzzing in my ears all day long. I'm not allowed any physical or mental exertion, and so on.
As always, there is good to be found in every evil. I spend the entire day by my wife's side.

Thanks to everyone for the support. And finally, for all those currently fighting or facing glioblastoma, here is a link for some encouragement: http://www.coed4.org/index.html

Best regards, and stay brave.

Linda Hill29 said:I read everything you all post, and your experiences, your words, your advice, and your enthusiasm help me so much... but at the same time, a wave of sadness hits me whenever I read some tragic news... a lost battle... pure despair. I try my hardest to remain an optimist, but I can't help myself—I truly find myself breaking down in tears. It’s hard to wrap my head around how many people are fighting this exact same fight. My heart just goes out to them...
I am at the very beginning of this journey. I’ve already written about my father’s first surgery, then his second, a month-long hospital stay, and finally, he came home today. He is so incredibly happy to be back; seeing him like this is such a relief. But then, my mind starts racing toward what comes next... I tell myself it won't be that bad, that everything will turn out fine, trying to soothe my own anxiety. I don't talk to him much about these fears. Sometimes I wonder if he's even aware of the gravity of it all, yet simultaneously, I hope he isn't. I want him to just relax and gather his strength; we'll deal with the rest as it comes. The immediate priority is his nutrition. Since his stomach was removed, he has lost a staggering amount of weight, and he needs to regain some mass before starting chemotherapy. But how? His capacity is tiny, he has to be extremely selective with food, and sugar is strictly off-limits. If anyone here has experience managing nutrition after a total gastrectomy, could you tell me if artificial sweeteners or milk (for example, in porridges) are viable options? What kind of high-calorie meals work best? I'm searching everywhere, but the information I find is completely contradictory. It might seem like a minor detail, but knowing this would mean the world to us.

Hello there. I know exactly what you're going through. Here is what our experience looked like.
He will likely start experiencing issues like gas, cramps, pain, sharp stabs, and then perhaps bouts of diarrhea followed by constipation. This is all quite standard following a total gastrectomy. You simply have to learn to manage it and push through. Nutrition is absolutely paramount. He should eat six small meals a day—never overindulge, and the food shouldn't be too cold or too hot. I strongly suggest asking a doctor about Megostat, which works wonders for stimulating appetite in patients undergoing cancer treatment.
My mother's appetite actually started coming back beautifully about two months after her surgery. Eventually, she was even able to enjoy things like bacon and red onions.
Our menu looked something like this: very frequently, a simple thickened soup for breakfast because that sat well with her during her hospital stay. They had her making flour coatings without added fats—the old-fashioned way—then adding water and whisking in an egg. That’s what the hospital staff recommended. We stuck to starchy, blended soups like rice, barley, oats, or vegetable blends. As for meat, pork was strictly forbidden; poultry (without skin) and veal were allowed. She ate plenty of bluefish (based on a recommendation from an oncologist in Austria), and sweets were banned because tumors thrive on that kind of nonsense. You can make stews like spinach, Swiss chard with potatoes, carrots, cauliflower, young peas, tomatoes, eggs poached in butter or soft-boiled, and fresh vegetable juices. Regarding fats, use small amounts of butter or oil—preferably homemade olive oil. White bread is okay, but nothing fresh out of the oven; toast is fine, along with all types of pasta and semolina. As for milk, we didn't use it because Mom simply couldn't tolerate it; any dairy caused diarrhea that we couldn't always control quickly, causing her weight to drop since whatever little she ate would just pass right through. For fruit, we used strawberries, blackberries, raspberries, and grated apples—ideally, cooked fruit. She could have pancakes, provided they weren't overly sweet; she avoided sugar entirely, except for homemade fruit compotes. It also helped immensely if she lay down for half an hour with a heating pad on her stomach; that was a lifesaver for her.
It would be incredibly beneficial to prepare that bitter beet and carrot juice yourself to get him ready for chemo. Make sure he takes that juice consistently during the chemo sessions. You can find good options at the local pharmacy or places like CVS. And definitely try supplemental liquid nutrition, like Prosure (Mom had issues with that one, so we stopped using it), but we followed an oncologist's recommendation and used Nutricomp instead. It comes in several flavors and is fortified with all sorts of essential vitamins and minerals...
I would strongly advise against giving him bananas; it’s common knowledge that they tend to cause constipation. Grapes are also right there in the mix, though my mother found them very beneficial and used to eat them quite frequently. While fruit is generally fine, ensure he eats it without the peel. Honestly, your best bet is to prepare a homemade compote from apples or pears; he could even sip that instead of tea. That’s about it. One critical piece of advice: please consult with his doctor, but I also suggest you do some independent research online regarding his specific lab results. When the time comes, he may need Vitamin B administered intravenously. This is incredibly important. Hang in there—if you find yourself needing anything or if any doubts arise, please reach out. If there is any way I can be of assistance... My goodness, I truly wish you all the best. Regards.

George, please accept my sincerest condolences.

casualpanther1, I wish you nothing but the very best. Just keep praying—ideally together and out loud. I will be joining your prayers for everyone who is currently ill and for all those who are suffering.

casualpanther1 said:...

Serge, I honestly can't tell you how relieved I am to hear that the MRI results are still clean—it feels like I'm reading about my own mother. I'm truly sorry your situation hasn't cleared up yet, but look, maybe waiting for that less invasive procedure isn't such a bad idea, especially since you've had some downtime at home to recover.
Whatever is helping your wife, just stick to the plan and keep doing what you're doing, because from where I'm standing, it seems to be working.
Regarding that vaccine Amy Hayes28 mentioned being offered to her father out in Split—that has absolutely nothing to do with DCvax. Her dad doesn't have GBM; he's dealing with metastasis. That's where all the confusion came from.
Just stay strong and get as much rest as possible. Sending love to the whole family.😉

Absolutely no milk!!!
Stick to yogurt, acidophilus, kefir, and things like that. But definitely skip the milk!!! I sent you the info from the nutritionist, so hopefully you saw my DM. Give her a call and ask some specific questions.
I've been dealing with a few of my own issues lately, but I promise I'll be back on the forum being useful by next week. I'm going to start posting the diet plan we were given by the nutritionist—mostly soft foods. Also, let them sleep as much as possible. Even when people are lying in a hospital bed all day, they don't actually get the peaceful rest they need, so making sure they catch up on sleep is huge.
If you have any doubts at all—JUST CALL ME!!! This isn't one of those situations where you should feel awkward or worry about bothering someone. Remember that!

feralwolf24 and Linda Campbell, thanks so much for the advice. You both gave me actual, concrete directions, which is more than anyone else has managed.
It’s helping me figure out a routine for my dad. He’s stubborn as hell and wants to try everything under the sun. His appetite is great, but his capacity is tiny, so he needs constant breaks. We're struggling with that right now; he should be drinking and eating more, but he can barely manage less than a quart of fluid a day, and if he does, he can't eat enough to make up for it.
feralwolf24, I called that nutritionist you suggested. She gave me some tips, but we won't actually meet until next week once we get the discharge papers. Thank you—having that on the calendar helps calm my nerves a bit.
He stepped on the scale today; he's down 15 lbs since the surgery. It's brutal. He was a pretty solid guy before this. Now we have to prep for chemo, so I'll start making those beet and carrot juices.
Thanks again. You guys are really the only ones I can ask about this stuff. Everyone else is too vague or just gives me generalities. Trying to bulk up someone without a stomach is a nightmare, but I'm hoping we pull it off.

Linda Hill29 said:feralwolf24 and Linda Campbell, thank you both so much for the advice... These are truly specific guidelines that no one else has been able to provide to me until now.
It really helps me find my footing and establish a routine alongside my father. He can be quite stubborn and insists on trying absolutely everything under the sun; his appetite is wonderful, yet his capacity is quite limited, so he requires frequent rest periods. We are currently struggling with this particular issue; he ought to be consuming enough fluids and food, but at most, he manages slightly less than a liter of liquid a day, and if he does, he cannot eat enough to sustain him for the day...
feralwolf24, I actually called that nutritionist you recommended, and she offered some helpful pointers, though we won't be able to meet until next week once we receive the discharge papers. Thank you so much for that suggestion, as it has provided me with some much-needed peace of mind.
He weighed himself today; he has lost 15 kg since the surgery. It is quite devastating... He was in pretty good shape before all of this. Now, we have to prepare for chemo, so I will be starting on those beet and carrot juices.
Thank you truly, as you are the only ones I feel comfortable asking these kinds of questions... Everyone else tends to be rather vague and noncommittal. It is certainly a delicate task trying to help someone gain weight when they don't have a stomach, but I am hopeful we can succeed.

My mother has always had a slender build. After her surgery, she lost more than 15 kg—she was down 15 kg when I first saw her, which was a month and ten days after that initial trauma, and even then, she was only just beginning to eat again. Regarding the juices—beetroot can be a bit tricky, as it isn't to everyone's taste. It didn't sit well with Mom on its own, so she and I would regularly make juices where she would blend apple, beet, carrot, and lime together, and I must admit, they were quite delicious!

Just believe and keep pushing; that is what matters most. Do not lose hope, and ensure you face everything as a unit, because that makes the whole process much easier to bear...

Mom is slowly preparing for Valentine's Day, or rather, the day she has to head back to Aviano for her follow-up. To eliminate any tension or potential doubts, Dad is going with her for the tests. Even though he isn't feeling his best either, he serves as such a steady pillar of support, especially since Mom is calmer and truly sees and appreciates how hard he is trying...

Hey everyone!!🙂>

casualpanther1, just like Angela Wright was saying, there’s been a ton of confusion because the doctors haven't been giving us much to work with—it seems like they were actually talking about Sutent!
Huge congrats on your wife's great results; honestly, seeing wins like that is the only thing that keeps me from spiraling into total gloom.🙂 Hang in there!

Anyway, I need to pick your brains on a few things!
Does anyone here have actual hands-on experience with Sutent??

Question for Elizabeth Gonzalez55: roughly how much does DCvax cost over in Germany?

For the ladies dealing with ovarian cancer—besides an elevated marker, did you notice any other symptoms? How did you first find out something was wrong?
I'm heading in next month to get my own levels checked.😁

Unfortunately, there isn't much good news on our end today.😢
Last week's MR shows the tumor is progressing, and a massive area of the brain is dealing with edema, post-radiation glioma, necrotic tissue... the whole works.

I'm trying my best not to spiral. Like Angela Wright said once, what we saw on today's scan is already physically there—the report itself doesn't change reality.
The main thing is that Mom hasn't had any sudden, drastic shifts; those usually creep up on you slowly until you just get used to them and they start feeling "normal."

I looked into DCVax, and the word is that it's not an option here in the States. There have been cases abroad where people tried it—for tens of thousands of dollars!—but unfortunately, the outcome remains the same. I’m mentioning this specifically regarding glioblastoma, just so nobody else here gets their hopes up unnecessarily.

George, I am so sorry for what you're going through.

casualpanther1, I'm rooting for you guys to stay one step ahead of this glioblastoma!

brightgardener8 said:Unfortunately, there’s no good news to report from our end today.😢
The MR from last week shows tumor progression, and a massive area of the brain is dealing with edema, post-radiation glioma, necrotic tissue...

I'm trying not to spiral too much because, like Angela Wright once pointed out, what we saw on today's scan is already physically there; the paper itself doesn't change reality.
The main thing is that Mom hasn't had any sudden, sharp shifts; those usually creep up on you slowly until they just become the "new normal."

I looked into DCVax, but I was told it isn't an option here in the States. There have been cases abroad—costing tens of thousands of dollars—but unfortunately, the outcome remains the same. I'm mentioning this regarding glioblastoma just so no one else here gets their hopes up unnecessarily.

George, I am so sorry for your loss.

casualpanther1, I really hope you guys can stay one step ahead of this glioblastoma!

😢 Have you guys considered talking to the doctors about palliative procedures like stereotactic surgery? It could help drain some of that CSF. That kind of thing is standard practice in most of the world, but our medical teams here tend to hesitate about it. It could relieve that intracranial pressure and at least neutralize the seizures caused by the edema for a while.
Hang in there, girl, and always remember how vital it is that you have each other!

Amy Hayes28 said:Hey everyone!!🙂

casualpanther1, just like Angela Wright said, things got confusing because the doctors weren't giving enough info—it was actually about Sutent, I think!
Huge congrats on those great results for your wife; honestly, hearing news like that always pulls me out of my funk.🙂 Hang in there!

Alright, I need some intel!
Does anyone here have actual experience using Sutent??

Question for Elizabeth Gonzalez55, roughly how much does DCvax cost over in Germany?

For the ladies dealing with ovarian cancer—aside from high markers, did you have any other symptoms? How did you find out you were sick?
I’m heading in next month to get my own levels checked.😁

I can share what my sister went through... About six months before her surgery, she started having these cramping pains that would make her whole pelvis ache. It would last a day or two, then she’d feel fine again. Then, during an exam, they found a cyst that turned out to be malignant...
Good luck with the surgery, I'm rooting for a fast recovery and a total clean bill of health 🙂!

Amy Hayes28 said:For those dealing with ovarian cancer—besides having elevated markers, did you experience any other symptoms? How did you first find out you were sick?
I'm heading in next month to have my 😁
pulled.

😲So what's your situation?

Angela Wright said:😲What’s your deal now?

Honestly, I don't even know where to start—it's a long story involving everything I've dealt with "down there," basically a tiny little biological disaster zone.😁
So, I've been dealing with this grayish bleeding since October, which shouldn't be happening at all since I've been taking my supplements non-stop. I figured maybe it was just stress, but then the pain started—these constant cramps, let's call them—to the point where sex is completely off the table.😁
And then there's that ovary. By the way, it hasn't really functioned for a while because it used to have this cyst that basically "smothered" it. Now, it’s practically hiding, and my doctor says things look weird. My markers are up, too, though they say that doesn't necessarily mean anything malignant—apparently, those numbers aren't always a true reflection of what's actually happening. My doctors think the CT scan isn't giving them the full picture of what's going on "down there," so they're planning to just go in and clear everything out via laparoscopy.
On top of all that, my liver is swollen. I have an appointment for that on the 29th, and the surgery for the ovary is set for February 18th.
I mean, it should be fine. Why would I want to keep growing something inside me that serves no purpose other than causing me pain?

Amy Hayes28 said:Honestly, I don't even know where to start. It’s a long story, really—this whole rollercoaster of having everything and nothing at all when it comes to what's going on "down there." It's been like managing a tiny, chaotic little Zen garden that just won't stay manicured.😁
I’ve been dealing with this brownish spotting for about ten months now, which is driving me crazy because I haven't missed a single dose of my Pile regimen. At first, I just figured it was stress—everything feels off lately, and I've been dealing with these constant, sharp cramps. Honestly, given how much discomfort I'm in, sex is completely out of the question right now.😁
So, my ovary—which hasn't been doing its job for a while anyway because some cyst basically smothered it—has gone into hiding. Now my doctor is telling me things look weird on the scans and that my markers are up. Honestly, he says that doesn't necessarily mean anything sinister; those numbers aren't always a perfect reflection of what's actually happening down there. According to my doctors, a CT scan isn't the ultimate truth when it comes to the actual state of things "down south," so they’re looking at performing a laparoscopic procedure to just go in and clean everything out properly.
Alright, great. On top of all that, my liver is swollen. I've got an appointment scheduled to check that out on the 29th, and then I have to deal with the ovarian issue on February 18th.
It should be fine. Why would I actually want to nurture something inside me that serves no purpose other than causing pain?

Based on everything you've described, I think you're dealing with endometriosis. Welcome to the club.🙄 You’ll be fine, honestly. Just get rid of that stuff and focus on healing your liver. If you don't, you're just going to end up dealing with those ab pulses, which put even more strain on your liver while you're waiting to decide on having kids. Look, there’s an entire section of this women's forum dedicated solely to endometriosis. Seriously, as if you didn't have enough on your plate already.😳

Amy Hayes28 said:Hi everyone!!🙂

Quick question for Elizabeth Gonzalez55, roughly how much does DCvax cost over in Germany?

😁

I can give you the exact breakdown: the first cycle consists of 8 injections spread out over three weeks, which runs about 15,000 dollars. On top of that, we had to put down an extra 1,000 dollars as a deposit to cover miscellaneous costs like lab work, consultations, leukapheresis, and the administration of the injections themselves.

If it actually works, you're looking at another 15,000 for the second cycle, and then about 2,000 dollars per year for a single maintenance injection for the rest of your life.

There’s really no need to thank me. Please, ask anything and look for whatever info you need—we'll share everything we know. Honestly, the biggest "thank you" will be seeing your dad make progress, because that proves our experiences actually meant something. Hang in there, both of you!
Just a heads-up—and only keep this in mind if it starts happening, since this was just our experience and isn't a rule—my husband dealt with some nasty seizures about a month after his surgery. It was honestly pretty rough to watch; he couldn't control them at all. Usually, it would start with his face changing color, him struggling to breathe, and his lower jaw locking up. That intense state would last for about 2 or 3 days, and these episodes kept coming back in fairly regular intervals, roughly every two weeks. All those trips to the doctors didn't really lead anywhere. Everyone just insisted it had nothing to do with the surgery. To be honest, I don't think they were taking the situation seriously enough. This went on for almost a year. But for the last two months, things have been really good. If you guys go through these phases, please don't panic. Just call me.
Stay strong!!!!!