Support resources for families dealing with cancer and other serious illnesses

Lisa White54 said:My husband went in this past Friday (08.08.) for a CT scan of his chest and abdomen at our local general hospital. Honestly, what he went through was nothing short of traumatic.
They kept badgering him about his previous medical records, but all we had were the discharge papers from the specialized clinic in Jordanovac, because that's where all his actual imaging is stored. We’ve never even laid eyes on the original files. His last CT was done two years ago, which showed everything was fine, but as far as this facility is concerned, we effectively have zero history.
But look, he’s my husband—he just handed over exactly what he had: those discharge summaries.
And then? He got absolutely blindsided by the staff at the CT department. It was like being caught in a crossfire. They told him he should be getting treated at the specialty clinic, that he should go there for his scans, and they practically questioned his right to even be there or whose recommendation he was following! (For the record, he was sent by an internist based on a pulmonologist's opinion from the specialist clinic!) It was all delivered through shouting and condescension, only for them to drop this bombshell at the end: "Sir, you are extremely ill."
Who gives them the right to say something like that? My husband is a complete wreck now. He’s spiraling because he thinks they saw something terrifying and that he’s in much worse shape than we realized, simply because they spoke to him with such grim certainty.
Since when do they get to decide who is "allowed" to have a CT scan? If we can't come here, where are we supposed to go? We’ve lived in this community our entire lives.
And really, what gives them the right to pick fights with patients who are already battling serious illnesses? Did they skip the entire module on patient psychology in medical school?
I mean, seriously, where is the decency?..
And to top it off, the results won't be ready until Friday the 15th, which is a holiday! A feast day!
So, I guess we'll be waiting until Monday the 18th!
Does anyone else know of a place where you wait ten whole days just to hear the results of a CT scan?

Reading this makes my blood boil. It is genuinely hard to wrap your head around how incredibly rude people can be and how broken this entire system actually is.
Hang in there.
Wishing you nothing but the best.

Here is my story too.

My mother was diagnosed with AML four years ago—it happened so suddenly...

She had been feeling wonderful; she only ever saw her doctor for routine checkups, and those results always came back perfectly fine. Then, after a month of this terrible coughing, she went in—and of course, the blood work showed absolutely nothing was within a normal range.
On top of that, she was constantly exhausted and felt this burning sensation in her legs.
By the second day, she was already admitted to the hospital in Chicago to start chemotherapy. Her immune system plummeted, her hair fell out... then came the second round, then the third... and eventually, a bone marrow transplant.
After two long years of suffering and enduring the absolute worst while in isolation, she actually reached remission. She was sent home and felt mostly normal, aside from the occasional follow-up appointment.

Her numbers were never exactly stellar, though I suppose you can't really expect that with a disease like this.
This year, however, her levels began to drop. The doctors chalked it up to being normal, and since she still felt okay, we didn't worry too much. At her last checkup, the doctor mentioned that if the counts continued to slide, she might need occasional transfusions—but he wanted to let her body try to fight it on its own first? He warned us that once you start relying on transfusions, the body loses that ability to fight independently.

Now, for several days, she’s been coughing heavily again. She is perpetually tired and just wants to sleep. I'm terrified that these are the exact same symptoms she had four years ago.
Her doctor wasn't available today, so she has to go in tomorrow. I don't know what the blood work will show yet, but my gut tells me this isn't good news.

I'm writing this in a rush—so please excuse any lack of clarity or rambling—so feel free to ask for details.
There are so many posts here that I can't keep up with everything, but I am specifically wondering: what have you found to be the fastest, most effective way to "boost" platelet counts? (At her last checkup, they were down to 30).

She has already tried just about everything under the sun—alternative medicine, changing sleeping positions, visiting energy healers, even crystal therapy...

Thank you in advance.

Hi everyone. I’m looking for some advice regarding mouth ulcers and canker sores. My father has completed 2 rounds of chemotherapy, which he seems to have handled quite well so far. However, he's now dealing with bleeding gums while brushing his teeth, and his mouth and tongue are covered in painful white blisters. He's usually able to eat normally, but these sores are making it really difficult for him to get enough nutrition. Does anyone have any tips or suggestions on how we might be able to manage this better?

Betty Sanchez82 said:Hi everyone. I'm looking for some advice regarding mouth ulcers and canker sores. My dad finished two rounds of chemo and actually handled them pretty well. But now, he's dealing with gums that bleed whenever he brushes, and his whole mouth and tongue are covered in these white blisters that are super painful. He’s usually able to eat normally, but because of this pain, eating has become a real struggle. Does anyone have any tips on how we can get ahead of this problem?

Hey there!
From my own experience, all I can really suggest is using Aloclair gel—and honestly, constant rinsing with chamomile tea helps too. It might help, but the real issue is that chemo just wrecks your immune system, and that's why those canker sores pop up in the first place. There was one time when Daktarin gel worked for me, though—it has a bit of a nasty taste, if you ask me.

I was wondering if those immune system drops actually help boost your defenses during chemo? I mean, they work wonders for me whenever I catch a nasty cold or the flu, so I guess it's worth asking.

Betty Sanchez82 said:Hello everyone. I am looking for some advice regarding mouth ulcers and canker sores. My father has finished two rounds of chemotherapy, which he handled quite well. However, he’s now dealing with gums that bleed during brushing, and his mouth and tongue are covered in painful white blisters. He would normally be able to eat just fine, but these oral pains are making nutrition very difficult for him. Does anyone have any suggestions on how we might best alleviate this issue?

You might want to try asking at a local pharmacy. I recall they carry a certain purple solution used specifically for when little kids get canker sores. I used to apply it to my daughter when she was small and it worked wonders, though I can't recall the specific name. Unfortunately, I am unsure if it is effective for adults, but I assume it would be; the pharmacists should be able to tell you.

Greetings everyone,
About a month ago, my mom was diagnosed with a lung tumor, and she was originally scheduled for surgery at Jordanovac. However, right before the procedure, they performed a CT scan—the last one had been back in April—and discovered what the doctors call "new segments." These have appeared in the other lung, the liver, the spine, and the breast. They sent her home without the surgery so she can complete two cycles of chemotherapy first; then, they’ll do a follow-up CT to see if those new segments have receded, at which point they might proceed with the operation.
Now, regarding these "new segments," I've realized that they are actually metastases, meaning the tumor has spread. Does the presence of metastases mean that things are moving toward the end quickly, or is there a chance that chemotherapy can wipe them out if they are still in this early stage?
I am asking anyone who has experience or knowledge regarding a situation like this to please help me understand what we are facing.
One thing that is incredibly important to mention is that Mom feels absolutely wonderful; she isn't in any pain, hasn't lost weight, doesn't have a fever, and has no prior medical history, so she genuinely feels healthy, and despite this news, I can see she has so much strength within her.
This all came to light after she fainted once, prompting her doctor to order a full battery of tests, though at the time, it seemed like it was just an issue with her cervical spine; she started exercising, and since then, those symptoms haven't returned.

Thank you all in advance!

rowdynomad92 said:Hi everyone,
About a month ago, my mom was diagnosed with a lung tumor. She was originally scheduled for surgery at Jordanovac, but right before they were supposed to operate, they ran a CT scan (the last one was back in April). That’s when they found what they call "new segments" appearing in several places: the other lung, the liver, the spine, and the breast. They sent her home without the surgery so she could complete two rounds of chemo first. The plan is to do a follow-up CT after that and then proceed with surgery if those new spots have shrunk or disappeared.
So, these "new segments"—I've realized that means metastases, basically that the cancer has spread. Does this mean that once metastases show up, it's game over, or can chemotherapy actually wipe them out if they just recently formed?
I'm looking for anyone with experience or insight into a situation like this to help me make sense of it.
One really crucial thing is that Mom feels fantastic. She isn't in pain, hasn't lost any weight, has no fever, and has no underlying health issues. She feels healthy, and despite this news, I can see she still has plenty of fight left in her.
We only caught this after she fainted once; the doctor ordered a full battery of tests, though at the time we thought it was just an issue with her cervical spine. She started exercising and hasn't had any more issues since.

Thanks in advance!

Yes, you're right—those are metastases. Treating metastatic cancer is definitely a steeper uphill battle than treating a localized tumor, but that absolutely does not mean the end is near. Is it a heavy blow? Yes, it is. But she has to take every single chance available and fight. It isn't uncommon to see both the metastases and the primary tumor shrink in size and shape to the point where they become operable again. You have to hold onto that hope, believe in it, and do everything possible to approach this with a positive mindset.

Hey 🙂

A truly wonderful soul gifted me some diapers and all sorts of supplies for Mom. Thanks again. 😘
So, I decided to take advantage of the momentum and see what kind of stash I’ve actually built up at home. I’ll admit, I can be a bit messy,😁 but even with that, we’re going through quite a lot lately. I’ve been complaining about how there are always two pads on the bed, one on the armchair where we move her during the day, and then another for the couch where she spends most of her time lounging. If they stay clean, I either tuck them away or just leave them right where they are.

Anyway, I have a full pack (I think it might even be more, but definitely a full pack) of Procter & Gamble that won't be used up before September 1st when she gets her next shipment. She’s supposed to have two a day, but she doesn't drink nearly that much, and if we can manage it, we’d much rather give her some soups—even if they come from a squeeze pouch. It's way less messy and much easier to handle; my nurse recommended it and it has honestly been such a lifesaver. It costs maybe ten bucks or so, but getting fluids or liquid food into her becomes so much, much easier.
If anyone happens to need some Procter & Gamble, please feel free to reach out; I’d be genuinely happy if someone else could make good use of it, and I am giving it away from the heart.

Thanks, Angela Wright, for getting back to me. I've heard from a few people that when patients undergo chemotherapy, their immune systems really take a hit, and that supplementing with certain vitamins can be a huge help—do you happen to know anything about that?

rowdynomad92 said:Thanks, Angela Wright, for the reply. I’ve heard that patients going through chemo often see their immune systems take a massive hit, and that taking certain vitamins helps—do you know anything about that?

We have already covered this topic extensively on this forum. People have shared their personal experiences using various supplements to boost immunity; you'll notice that some are much better tolerated than others and carry far better "reviews," so try to stick to those. It is a highly individual choice, and the smartest move is to find what works for your specific body—especially when you realize that if a supplement starts causing constant, persistent issues, you need to stop pushing it.
Check out the patient advocacy group's forum pages as well; they have a wealth of information and firsthand accounts.

We’re currently going through those rough patches following chemo.

Honestly, I'm at a bit of a loss regarding what to cook or even prepare—it feels like everything I make just ends up being thrown away...
Next week means back to the hospital, more injections, and then we'll be waiting on the beta results to arrive—hopefully, that will give us some clarity on what comes next...

Angela Wright said:Because this is such an incredibly brutal period for both patients and their families—and since our society just doesn't provide nearly enough psychological support or actual help—I decided to start this forum. I’ve been right in the middle of this storm myself, so my goal is to create a space where those of us who have dealt with this (or are currently dealing with it) can lean on one another for advice and genuine support.

Please, feel free to post here. Even if I don't have all the answers, I promise I will always be here to reply, offer whatever advice I can, or simply stand by you. It's so hard... sometimes it feels even harder for the loved ones watching from the sidelines than it is for the person fighting the disease directly.

Personally, I have walked through hell, and I am still walking through it. I truly believe no one should ever have to face this kind of pain alone.

Sending huge hugs to everyone.

Does anyone happen to have any information, or perhaps know someone who has been treated with Gemzar? I see it listed as a medication for cancer, but I am completely clueless about how any of this works. I'm trying to research what the typical reaction to that specific therapy is, though everything I read online says it varies wildly from person to person. If anyone has any personal experiences they'd be willing to share...
Thanks,
Worried😕😕😕

nimblestag7 said:Does anyone happen to have any information or know someone who has been on Gemzar? It's listed as one of the medications for cancer. I'm a complete novice when it comes to all of this. I'm curious about what the reaction to therapy with this specific drug is like, though from what I've read online, it seems to be highly individual. Perhaps you could share some of your own experiences...
Thanks,
Worried😕😕😕

Everyone reacts differently. My husband is receiving a heavy dose due to an aggressive sarcoma—1600 mg on days 1 and 8. Every single time, he reacts with a high fever and a drop in his white blood cell count, neutrophils, red blood cells, and hemoglobin... and so on.

So far, a Voltaren suppository has proven to be the best support for bringing down the fever...

How is everyone doing today? 🙂

I'm really hoping there might be some news out there—hopefully some positive updates or good tidings...??

Warm wishes to you all

Hey everyone, I’ve got a question about chemo. My father-in-law had rectal cancer removed—no metastasis, they didn't even have to touch his lymph nodes. He’s mostly "recovered" from the surgery now (long story short, there was some sort of medical error or bad call by the surgeon), and he just had his oncology follow-up. They told him he needs to start chemotherapy ASAP. My question is: how can I help him manage the side effects, and what should we actually expect? I know the answers are probably buried in this thread, but I’m pregnant right now and I’m feeling pretty emotional, so I’d rather not dive into all the heavy reading. Thanks in advance.

My husband has been diagnosed with Ewing's sarcoma, specifically located in the pelvic bone and part of the sacrum. We are currently waiting on the final confirmation from the specialists at Salat so he can officially start his treatment plan. He’s already transitioned to a very healthy diet, so I was wondering if incorporating certain herbal teas—like the ones Mrs. Lepina used to swear by, such as sage tea, kidney support tea, bone strengthening tea, and various vegetable juices—might be beneficial, especially since he isn't on a strictly restrictive regimen right now? He recently had to deal with a nasty infection in his retroperitoneum that was putting pressure on the iliac arteries and veins in his right leg, which causes some swelling in his leg from time to time. I really thought that maybe some of these natural remedies could help bolster his immune system and dial down the inflammation a bit.
Note: we aren't turning our backs on conventional medicine, but we definitely believe in using alternative support like teas and juices alongside it.
Thank you!

Melissa Stewart said:My dad was just diagnosed with Ewing's sarcoma (it's in his pelvic bone and part of his sacrum). We're currently waiting on final confirmation from the team at Salat so he can start his actual treatment plan. In the meantime, he’s focused on eating clean, so I was wondering if certain herbal teas—like the ones Mrs. Lepina used (sage tea, kidney tea, nettle tea, bone support tea, and veggie juices)—might be beneficial since he isn't following a strict regimen yet? He also recently had some purulent inflammation in his retroperitoneum cleared up, which was putting pressure on the iliac arteries and veins in his right leg, causing occasional swelling. I thought maybe some herbs could help bolster his immune system and dial down the inflammation.
Just a note: we aren't turning our backs on conventional medicine, but we aren't ruling out alternative support either (teas and juices).
Thanks!

In my opinion, those things can only help. The main thing is ensuring his circulation stays healthy. You should definitely ask his doctor if taking low-dose Aspirin is a good idea; it made a massive difference for my mom.

mistyridge5 said:We’ve hit those rough patches again following the chemo sessions.

I honestly find myself at a loss regarding what to cook or even prepare, as it feels like everything I make just ends up being thrown away...
Next week means back to the hospital, more injections, and then we wait for the beta results to arrive, which will finally tell us how to proceed...

Oh, the "rough days"...
Please, try to have patience. When things were at their absolute worst for my mother and she simply couldn't stomach anything, her father would ask her every single morning what she might want, and he’d cook it for her. She couldn't manage more than a single spoonful, and the rest would inevitably go to waste... but those days are long behind us now!

I truly hope that things are already starting to look up for you today.🙄

Susan Gonzalez4 said:Hi everyone, I have a question regarding chemotherapy. My father-in-law had rectal cancer which was surgically removed; there were no metastases and his lymph nodes were clear. He is mostly "recovering" from the surgery now—which is a whole other complicated saga involving a surgeon's incorrect assessment or medical error—and he just had his oncology follow-up. They told him he needs to start chemotherapy as soon as possible. My question is: how can I help ease the side effects, and what are the "typical" ones to expect? I know the answers are likely scattered throughout this thread, but I am currently pregnant and would prefer not to read through them all, as I’ve been feeling quite emotional lately... thank you in advance.

First of all, there is no magic formula or secret recipe to ensure chemotherapy passes without any side effects... it simply doesn't exist. There is a book titled "A Guide Through Chemotherapy" that offers some very solid advice; I haven't spent much time diving into it myself, but from what I've gathered, the suggestions seem quite sound.

No matter how poorly someone is feeling, it remains vital that they keep walking and eating—essentially, trying to maintain a semblance of a normal life without letting intrusive thoughts take over. It isn't easy to believe everything will go perfectly while simultaneously battling the fear of the unknown, yet it is even harder to dwell constantly on the inevitable side effects...

With everything that is about to unfold and the immense stress this chemo will bring, please do not forget to look after yourself and your pregnancy. No matter how sensitive you usually are, you will need to find the strength to prevent your emotions from overwhelming you, because ultimately, you will be the one most affected by that distress...

I wish you much strength, and I am certain that during the course of the treatment, you will discover all the ways to support your father-in-law... hang in there.