Support resources for families dealing with cancer and other serious illnesses

Kate Doyle45 said:Honey, you have our sympathy... it feels quite grim to say "welcome to this thread," as one would prefer the numbers here to remain as small as possible, but we are all here to lean on one another. Last night, I learned that my sister's tumor has spread to her palate... despite ten previous surgeries, they never even touched the palate area... I am terrified it might move into the sinuses... though I won't even let myself go there. Through all of this, she is the one trying to comfort us.
So please, focus on being strength for your loved one, while we provide yours. Good luck.

I managed to watch a segment of the Face of the Nation, and the reality is that the number of people affected is steadily climbing 😢 which is perhaps the least comforting realization one can face.

I suspect your sister provides such comfort because those facing this struggle see the world through a different lens—she is far braver than those of us who spend too much time overthinking everything... 😢

Hey everyone,
The reason I’m signing up here is because of a brutal illness that hit our family about two years ago. Back in May 2007, my mom was diagnosed with ovarian cancer. It was clearly pretty advanced from the jump—her tumor markers were north of 15,000, she had significant fluid buildup, and the tumor itself was massive and clearly visible. After the diagnosis and a paracentesis to drain the fluid, she started a chemo protocol (the CEP regimen), which actually showed positive results quite quickly. That was followed by surgery and another four rounds of chemo. Mom handled the treatment relatively well; the nausea and the drops in her white blood cell counts were constant, but we always managed to get her back on her feet using various supplements—stuff from the garden, the local pharmacy, and even some things we ordered from overseas. After that last round of chemo, we moved into regular check-ups, and for months, her markers looked almost perfect. Everything fell apart in January 2009 when she started complaining of abdominal pain, intense crises, and rib pain that got more unbearable by the day. The tests they ran made it painfully obvious: the disease had come back in full force. With a marker at 460, a 10cm tumor, and 5 liters of fluid in her abdomen, we had every right to be terrified. So, we went back to square one—fluid drainage, then carboplatin chemo (standard, no additives). However, after just two sessions, she became so debilitated that further treatment isn't even an option due to severe anemia; she’s lost her appetite and is vomiting periodically. To make matters worse, the doctors at Mayo Clinic basically told us the treatment isn't working at all because her marker jumped from 600 to 3,000 after just two doses. On top of that, they refused to admit her because her hemoglobin was below 70 and her red blood cell count was under two—they argued that transfusions might do more harm than good rather than helping. That’s where we started questioning their decisions. Her last blood work (Thursday, May 21, 2009) showed a hemoglobin level of 54, which clearly indicates a transfusion is necessary, yet 24 hours later, she was discharged. She’s left in this incredibly weak, hollow state, looking like there's no hope for further treatment. If anything happens, we can head over to a clinic in a nearby suburb. I’m asking for an objective take on this medical decision. Is it actually possible—or even remotely normal—for doctors to look at a single lab result (a marker, which is a definitive indicator of disease progression) and just throw their hands up, saying "that's it"? No further testing, no suggestions? Let me repeat: Mom was on her second line of chemo with carboplatin, it wasn't working, and her marker shot from 600 to 3,000. Is there really no alternative therapy or any way to get her recovered enough just to walk like a human being again, so we can at least try something else? By the way, they finally gave her a prescription for some anti-nausea meds a week ago—after we spent weeks buying them ourselves—but she can't stomach them at all. I am endlessly grateful for any advice you can give; our whole family is in a total coma after this decision. Who do we even turn to?
Thanks for taking the time to read through this massive wall of text.

restlessseal92, discussing any kind of alternative medicine is strictly prohibited on this subforum. If you are looking to have those conversations, please head over to this specific section of the forum:
You are more than welcome to copy everything you've posted here and move it over there. Best regards to you.

restlessseal92 said:Dear forum members,
The reason I’m reaching out is because a devastating illness has invaded our family over the last two years. Back in May 2007, my mother was diagnosed with ovarian cancer. It was clearly quite advanced at the start; her tumor markers were north of 15,000, there was significant fluid buildup in her abdomen, and the tumor itself was visibly large. Following the diagnosis and a paracentesis to drain the fluid, she underwent four rounds of chemotherapy following the CEP protocol, which actually yielded very positive results. This was followed by surgery and another four rounds of chemo. Mom handled the treatments relatively well—nausea and low white blood cell counts were constant issues, but with various supplements from organic gardens, pharmacies, and even overseas, she always managed to recover in time. After the final round of chemo, we had regular check-ups where her markers showed nearly perfect levels for months. Everything changed in January 2009 when she started complaining of abdominal pain and intense crises, specifically rib pain that grew more unbearable by the day. The tests they ran made it painfully clear that the disease had returned in full force. With a marker reading 460, a 10cm tumor, and 5 liters of fluid in the abdomen, we had every reason to be terrified. We went back to square one: draining the fluid, followed by carboplatin chemotherapy (without any additives). However, after just two sessions, she became so debilitated that further treatment isn't even being considered due to severe anemia; she’s lost her appetite and suffers from intermittent vomiting. Worst of all, the doctors at Mayo Clinic told us the therapy simply isn't working because her marker jumped from 600 to 3,000 after only two doses. On top of that, they refused to admit her because her hemoglobin was below 70 and her red blood cell count was under two; the physicians felt that giving her a transfusion might actually do more harm than good. At this point, we are seriously questioning the medical decisions being made. Her most recent blood work (last Thursday, May 21, 2009) showed a hemoglobin level of 54, which clearly indicates a transfusion is necessary. Yet, within 24 hours, Mom was discharged from the hospital—looking absolutely frail and completely incapable of undergoing further treatment. If anything happens, we can head to a clinic in a nearby suburb. I am asking for an objective assessment of this clinical decision. Is it truly possible or even standard practice for doctors to see a single indicator (like a marker, which is a definitive sign of disease progression) and essentially wash their hands of a patient? No further testing, no alternative suggestions... just that. To reiterate, Mom was on her second line of chemo with carboplatin, which failed spectacularly, sending her marker from 600 to 3,000. Is there really no alternative therapy or any way to get her strong enough to walk again so we can try something else? By the way, she was finally prescribed a specific medication a week ago—after we spent weeks buying it ourselves—but she can't tolerate it at all. I would be endlessly grateful for any advice, as we are all in a state of total shock following this decision. Who should we turn to?
Thanks for your time and effort in reading such a long post.

Maybe try asking the doctors at Mayo Clinic if they can revert to the previous line of chemotherapy (I'm not sure of the exact composition), but that worked for my mother. She was first given a newer line of treatment that didn't suit her at all, but once they switched back to the old one, her markers dropped. Granted, that was at the beginning of her treatment when her markers were around 800, and they also drained several liters of fluid from her abdomen after the first surgery. After that, the fluid didn't build up again until the recurrence happened.
The pain is likely caused by fluid buildup, much like the vomiting, since all that pressure just squeezes everything together.
If you ever find yourself needing to choose a facility for care, I’d suggest somewhere like a clinic in a smaller town rather than a major metro area. My mother was cared for in a quiet suburb outside the city, and they kept her incredibly comfortable and dignified right until the end.
Unfortunately, I don't really know how to offer much comfort, but I don't believe there's a viable alternative out there. The only real shot might be a secondary surgical procedure, which is quite intense and demanding. If you feel up to it, take a look at my previous posts—everything is laid out there—or just send me a PM and I can walk you through it. Wishing you the best.

restlessseal92 said:Dear fellow forum members...
The reason I am joining this forum is due to a devastating illness that invaded our family about two years ago. Back in May 2007, my mother was diagnosed with ovarian cancer. It was clearly at an advanced stage; her tumor markers were soaring above 15,000, there was significant fluid buildup in her body, and the sheer volume of the tumor was quite visible... Following the diagnosis and a fluid aspiration, she underwent four rounds of chemotherapy following the standard protocol, which yielded positive results almost immediately. This was followed by surgery and another four rounds of chemo. My mother handled the treatment relatively well; while nausea and low white blood cell counts were constant companions, we always managed to get her back on her feet using various supplements—some from the garden, some from the pharmacy, and others sourced from abroad... After her final round of chemotherapy, we entered a period of regular checkups where her marker levels remained nearly perfect for months. Then, everything fell apart in January 2009. She began complaining of abdominal pain and intense crises, with rib pain that became increasingly unbearable with each passing day. The tests she underwent at the hospital made it painfully clear that the disease had returned in full force. With a marker level of 460, a 10cm tumor, and 5 liters of fluid in her abdomen, we had every reason to be terrified. We found ourselves back in the same cycle: fluid aspiration followed by carboplatin chemotherapy (without any additives). However, after just two treatments, she has become so debilitated that further therapy isn't even being considered due to severe anemia; she has lost her appetite and suffers from periodic vomiting. Worst of all, the doctors at the Mayo Clinic told us that the treatment simply isn't working, because after only two doses, her marker jumped from 600 to 3,000. Furthermore, they refused to admit her because her hemoglobin dropped below 70 and her red blood cell count fell below two; the medical staff felt that giving her a transfusion might actually do more harm than good... At this point, we are starting to seriously question the clinical decisions being made. Her most recent blood work from Thursday, May 21, 2009, showed a hemoglobin level of 54, indicating a transfusion was absolutely necessary, yet twenty-four hours later, my mother was discharged from the hospital. She was left in such a frail, hollow state, with no prospect of undergoing further treatment. They suggested that if anything were needed, we could go to a facility in a nearby suburb... I am asking for an objective assessment of these medical decisions. Is it truly possible, or even remotely normal, for doctors to look at a single diagnostic result—a marker that is undeniably an indicator of disease progression—and essentially wash their hands of a patient? To just say "that's it" without offering further testing or alternative suggestions... To reiterate, she was on her second line of treatment with carboplatin, which failed to show any efficacy, causing her marker to spike from 600 to 3,000 after only two sessions. Is it conceivable that there is no alternative therapy, or perhaps no way to stabilize her enough just to walk like a human being again, so that we might then attempt something else?... Incidentally, she was finally given a prescription for Prosera a week ago, after we had been buying it for her out-of-pocket for weeks, but she cannot tolerate it at all. I would be endlessly grateful for any advice, as we are all in a state of total shock over this decision. Who should we turn to...
My thanks to you all for the time and effort spent wading through this endless, rambling post...

Hello, restlessseal92...
It is honestly quite difficult to even stomach reading this kind of thing, especially when the reality hits so close to home... knowing that my own mother struggled through these exact same issues with this very same illness during those same periods...

Based on those specific markers, it wouldn't make sense to just throw in the towel... I suspect any decision made by the doctors is rooted in her overall physical condition, and honestly, your mother really needs to undergo immunotherapy...

Please, don't hesitate for a second... as Amanda Miller69 mentioned earlier, you should really seek out a second opinion at a clinic on Petrov or wherever else you feel comfortable going to get another perspective...

What strikes me as truly baffling is the sheer speed at which such a significant recurrence developed within her body; a ten-centimeter mass is certainly nothing to dismiss lightly... It suggests there may have been a lapse somewhere along the line, though that shouldn't imply any reason to surrender now, as there are still avenues available for your mother to continue her fight. Her markers are likely climbing because there is still an underlying imbalance present in her system, presumably originating from a site distinct from where the initial removal took place.

In any event—do not lose heart, and make every possible effort to restore her appetite. Prepare goat broth or hearty vegetable soups, and perhaps craft fresh fruit and vegetable juices (specifically blends of beet, carrot, apple, and lemon)... offer her purees to help build her strength, bananas, hard cheeses, or grapes... you might even start by keeping a tally of how many nourishing soups or small glasses of juice she consumes; we adopted a similar approach, and once my own mother realized she had managed two nutritious soups in just two days, she became much more diligent about her intake...

It is genuinely difficult for me to provide more specific guidance since I am not an expert in this field, but I sincerely hope things begin to take a turn for the better for your family... Please, do not forget to hold onto positivity and faith, and keep fighting...

Thanks everyone for the quick replies and the kind words. Honestly, I’m not even sure if there’s any point in going back to Petrov—they cut off her treatment, and it doesn't look like they're ever going to take her back into the ward. We’d love to get a second opinion, but I’m completely lost on where to even start—which clinic or which specialist would actually be worth our time? Naturally, I’m also curious about your thoughts on immunotherapy—is this something they regularly offer to patients in my mom's condition, and do we have to head overseas to find it? My gut feeling is that the doctors basically slammed every door shut on us by their own decision; it feels like if her condition takes a turn for the worse, nobody is going to want to admit her based on that discharge summary—not even our local county hospital in Zabok. It’s like we’ve been kicked right back to square one. And as for Novi Marof, we want to avoid that place as long as Mom can still breathe and as long as we have the strength to deal with everything.

restlessseal92 said:Thanks to everyone for the quick responses and the kind words. I’m honestly questioning if there’s even any point in going back to Memorial Sloan Kettering after they abruptly cut off her treatment and showed zero interest in readmitting her to the ward. We are desperate for a second opinion, but we’re flying blind—we have no idea which clinic or specialist to approach. I’m also curious about your thoughts on immunotherapy; is this something typically offered to patients in my mother's condition, or is it something we’d have to travel abroad for? To be blunt, I feel like the doctors have effectively slammed every door in our faces. Their decision seems designed to protect themselves; if my mom’s condition takes a turn for the worse, no one—not even our local community hospital in suburban Connecticut—will want to take her in based on that discharge summary. It feels like we’ve been tossed right back to square one. And frankly, we want to avoid driving all the way to the city hospitals as long as Mom can still breathe and we still have the strength to manage this.

You should try the Mayo Clinic, specifically with Dr. Majerović. He performed my mother's surgery, and if her system had been strong enough to fight off that MRSA infection she caught, I truly believe she would still be with us today. That surgery alone would have likely given her another three or four years. There is absolutely no sense in just sitting around waiting for things to happen. Seek out every possible avenue, be persistent, and don't let them push you away. If any of the doctors at Memorial Sloan Kettering actually has the backbone, make them sign a document stating they refuse to treat her. As for immunotherapy, I unfortunately don't have any specific information on that.

You might also want to look into getting checked out at the institut za tumor u Ilici.

Sending some good vibes and strength your way. Hang in there.

Casey Palmer5 said:God, life just sucks sometimes.

🙂🙂
People keep telling me that the mountains aren't going anywhere. 😉 Which is technically true, I suppose, but it doesn't exactly do much to comfort me.
The book is called....
I'm not even sure if there's an American edition out yet. I picked up my copy a few years back at Barnes & Noble.

Casey Palmer5, I actually wrote about our own experience over on the association's website...

One really has to be prepared for chemo—both mentally and physically, I suppose.
It’s so important to try and keep his blood counts (especially the white blood cell count) as steady as possible—that way he can actually stay on track with the treatment, if he's even able to receive it at all.

If you have any questions regarding any of this, please feel free to send me a private message here or reach out on the association's forum. We went through this ourselves, and everything turned out well 👍

Thanks, girl 🙂

They'll get us sorted out in a bit...

Casey Palmer5 said:Thanks, girl 🙂

We'll get this sorted out.

What you're going through right now is easily the worst part. For me personally, facing this head-on was the most brutal emotional and mental experience imaginable. You're essentially in shock right now. But once that wears off, the real fight begins, and you'll have to process everything—not because you want to, but because there's no other way. You'll pull yourself together faster than you think.
Nothing is lost, and I truly believe he’ll be back in the water diving again one day.
He’s going to be fine because he has to be, and he has people counting on him.😉 He’s an athlete, and athletes possess something others don't: an iron will, incredible self-suggestion, and a relentless persistence. When things hit the fan, they know how to pick themselves up off the floor. That alone puts him a step ahead of everyone else, regardless of how things look right now.
Just stay brave and hold your ground like the strong woman you've always been. Don't let them see you flicker. 👍

Casey Palmer5 said:Thanks, girl. 🙂

They'll get me sorted out in no time.

Look, this just isn't an option for me. I refuse to let some common cancer stand in my way from... 🙂

[QUOTE=Bradley Green;20727422]Look, this just isn't an option. I'm not letting some run-of-the-mill cancer stop me from... 🙂[/QUOTE

Wow. Honestly, I don't think I've ever read a better sentence in my entire life. Seriously, props to you—that kind of optimism alone puts you 80% of the way to being healthy already.

Sending all the good vibes in the world your way. 👍[/QUOTE]

I try to stay positive just because I'm still here, you know? Just being alive is enough for me... 🙂))))

Casey Palmer5 said:I try to stay positive because I am still breathing, because I am still alive... 🙂))))

Just when I thought things couldn't possibly get any harder—back when nothing seemed to be going my way, though I hadn't yet faced anything as heavy as a serious illness or my mother's current health struggles—my mom sent me a CD with that specific song and told me there was simply no way not to maintain a positive outlook...

Many of you have already shared some truly excellent advice here, so I suppose all that remains for me to do is join the chorus and say—just stay brave...

Man, whenever my boy comes home to visit—everything just instantly feels 50% better.

I just read that peppers—like chili and bell peppers—are actually considered good vegetables too... honestly, he’d probably love those.

Has anyone here tried using ginger? Apparently, it works wonders for stuff like this. I have some essential oil on hand, so I was thinking about maybe massaging it into my feet; I don't think it could hurt... I also ordered some native propolis from a local maker because I read it helps support blood counts. At this point, I'm open to everything—from standard medical treatments to alternative options, as long as there's at least some research or solid positive feedback behind them.

Casey Palmer5 said:So I just read that peppers—like chili and bell peppers—are actually considered good vegetables too... honestly, they’d probably love that.

Has anyone here actually used ginger? I've heard it's supposedly great for stuff like this. I have some essential oil on hand, so I was thinking maybe I'd try massaging it into my feet—can't hurt, right? I also ordered some raw propolis from Heder, because I read somewhere it helps with blood counts. Look, I don't have any ego about this—I'm open to everything, whether it's conventional medicine or alternative stuff, as long as there's at least some basic research behind it or people having genuinely positive experiences.

Casey Palmer5, you should definitely do a little deep dive online regarding curcumin (that's the compound you get from the turmeric root, which is part of the ginger family). We actually started taking it recently after one of our family members kept track of all these international studies and health shows abroad that were raving about how incredible curcumin can be. The data looked really promising, so we decided to give it a shot. We haven't seen any major results yet, though—we've only been on it for five days. There are tons of different types out there if you decide to go for it, but you really need to do your homework first. Or, hey, just ask me if you want to chat more about it, okay?