Support for families dealing with cancer and other serious illnesses (Part II)

Hello, everyone. Unfortunately, my mother passed away at the beginning of January—after about a two-year battle with lung cancer. I’ve been reading this forum for quite a long time now, and your shared experiences have meant so much to me, especially during Mom's final struggles. Because of that, I felt I should share our journey here.

Mom was being treated at Jordanovac for two years; after the initial diagnosis of macrocellular neuroendocrine cancer and surgery, it turned out there had been a microcellular neuroendocrine component involved from the start. Since she was also dealing with two other difficult autoimmune conditions, things moved quickly—a relapse occurred last spring, followed by another round of chemo this summer, and then, sadly, extensive brain metastases by Christmas. Thankfully, that final stage didn't drag on too long, so she wasn't in agony for an extended period. I say "thankfully" because, honestly, watching her suffer—seeing her lose mobility and slip in and out of consciousness—was incredibly hard. It wasn't living, not for anyone. It was particularly painful to watch her lose her will to live all through the summer; she was someone who truly loved life and all its small joys. Many times, while watching her lying in bed in pain, I thought to myself, "Mom, I'm letting you go."

In a way, Mom's end was both slow and fast. Toward the end, she spent two weeks in the hospital where they gave her therapy for brain edema, so she wasn't in massive pain (at least not that part). From the time we got home to the moment she left us, only three days had passed. Even while she was still hospitalized, I just wanted her to come home—to be with us, to feel our presence, to find some peace and relief from the pain. And that’s exactly what happened. Although I found myself questioning God for allowing such suffering, in the end, I am grateful because it worked out the way I hoped, allowing me to be right by her side until the very last second. She could feel us all there, and we all had the chance to say goodbye. She passed away peacefully.

Now, whenever things get heavy, I just think of those final moments—the pain, the diapers, the bedridden state—and I thank God that He called her home quickly and that I was there with her. My mother found her peace. She stepped into the light.

I wish you all strength in your battles against illness, but also dignity along the way.

And one more thing—I suppose God really does look out for us somehow, sending people your way during these fights. Sometimes, total strangers appear and make everything bearable; to them, I am endlessly grateful.

Rebecca Perez4 said:...

Reading what you wrote feels like looking at a mirror of myself from ten years ago. Yeah, it’ll be ten years this November since she passed, and twelve years since that initial diagnosis back in July.

A whole decade has slipped by, yet my thoughts haven't shifted one bit—if anything, they've just become heavier with everything I've learned since then...

I really hope you find more peace than I have. Honestly, I still haven't found that sense of calm I'm searching for, largely because the system itself hasn't changed an inch.
We still don't have real palliative care or decent hospices here in the States. As a society, we've completely failed. I can't find any peace.

I was hoping you all might be able to help me out! I know this has been discussed here before, but I’m having a hard time tracking down which specific thread had the info I need.
My grandmother is currently in the terminal stage of colon cancer. She's immobile, hasn't been eating for months, and stopped chemotherapy about three months ago.
Her salivary glands are essentially non-functional; she has no saliva at all. There aren't any sores, but her tongue is terribly red, making it painful for her to swallow or even speak. I've bought artificial saliva for her and she uses chamomile rinses, and while she tries to sip water, it doesn't seem to provide much relief.
Is there anything else we could try to soothe her tongue or keep her mouth properly hydrated?
We don't live with her; my grandfather is her primary caregiver, and honestly, he struggles a bit with staying organized. I’d love to find some solutions myself so they don't have to constantly worry about doctor visits or prescriptions—plus, I want to avoid unnecessary expenses. She can't really suck on lozenges, even though I know menthol usually helps. Would sage work? Is Hexoral safe, or would it just cause more stinging? Any ideas or shared experiences would be so greatly appreciated.

Sarah Wells23 said:I am reaching out because I could use a little bit of guidance. I know this has been discussed extensively in this thread before, but I simply cannot track down which page the information was posted on.
My grandmother is currently in the terminal stages of colorectal cancer; she is immobile, hasn't eaten anything in months, and we stopped chemotherapy three months ago.
Her salivary glands have essentially failed her. She isn't suffering from open sores, but her tongue is terribly red, she’s struggling immensely with swallowing, and speaking has become a painful ordeal. I’ve bought artificial saliva for her and she rinses her mouth with chamomile tea, and while she tries to sip water, it doesn't seem to provide much relief.
Is there anything else that might alleviate this tongue irritation or help keep her mouth hydrated?
We aren't living with her; my grandfather is the primary caregiver, and frankly, he isn't the most organized person when it comes to managing these things. I would prefer to find some solutions myself so they don't have to constantly bother doctors for prescriptions or worry about the cost. She can't suck on lozenges, even though I know menthol usually helps. Would sage be useful? Is Hexoral safe, or would it cause more burning? Any ideas or shared experiences would be deeply appreciated.

You should try supplementing her intake with Ensure or Prosure shakes; they provide all the essential vitamins and proteins she needs since she isn't eating much. You can actually get these through a prescription.

As for the other issues, you should reach out to Angela Wright, as she is the most knowledgeable on these matters. Hang in there.

redranger2 said:Try feeding her with Ensure or Prosure shakes; she'll get all the vitamins and protein she needs since she isn't eating much. You can even get them with a prescription.

For everything else, let Ivanica know—she really knows her stuff. Hang in there.

Thank you all! She’s actually been on Prosure for quite a while now, but she can't even handle that anymore because the taste and texture just turn her stomach; she can only force down a little bit at a time.
Sometimes she gets a craving for something simple like grits, so I would truly love to see that tongue heal. Right now, without any saliva and with everything so inflamed, she can't even chew or swallow properly.

Sarah Wells23 said:I’m looking for a little help here! I know this has been discussed quite a bit in this thread, but I can’t seem to find which page the info was on.
My grandmother is in the terminal stage of colon cancer. She’s immobile, hasn't eaten in months, and stopped chemo three months ago.
Her salivary glands are basically shot. She has no saliva, no sores yet, but her tongue is terribly red, she’s struggling to swallow, and she can barely speak because it hurts so much. I bought some artificial saliva and she rinses her mouth with chamomile, plus she drinks water, but it doesn't help much.
Is there anything else that could ease this tongue issue or help keep her mouth hydrated?
We aren't living with her; my grandfather is the primary caregiver, and he’s not exactly the most organized person in the world, so I’d love to find something myself. I want to avoid stressing them out with doctor visits and prescriptions, and I don't want them wasting money. She can't suck on lozenges, even though I know menthol helps. Sage? Is Hexoral okay, or would that burn? Any ideas or experiences would be greatly appreciated.

Your grandmother likely has oral thrush due to the lack of saliva. Go to the pharmacy and pick up some Rojazol gel for oral use.
Forget about Hexoral or anything like that—don't even consider it. It will just further irritate her oral mucosa.
Try giving her water infused with ground flaxseed.
Take some ground flaxseed, dissolve it in a glass of lukewarm water, and let it sit for half an hour. Flax releases a mucilage that does an excellent job of coating the mucosal lining and protecting it. She can drink it too, as it's actually good for the stomach and esophagus.
You definitely need to introduce some strong probiotics. You can get them in powder form and mix them into water.
One more thing: insist that her primary care physician makes a home visit and prescribes home health nursing. In the US, she should be entitled to full coverage for a visiting nurse who can come by 7 days a week for up to 45 minutes per visit. A nurse will recognize issues like the tongue problem immediately. They can handle the daily cleaning and changing, and even a weekly bath, so you don't have to shoulder all of it. It was a massive help for me, even though I still handled my mom's baths on weekends once we had a solid routine established.

Angela Wright said:Grandma probably has oral thrush because she isn't producing enough saliva. You should pick up some Rojazol gel at the pharmacy for oral use.
Forget about Hexoral or anything like that—it will just irritate her lip mucosa even further.
Try giving her water that has been infused with crushed flaxseed.
Just take some crushed flaxseed, dissolve it in a glass of lukewarm water, and let it sit for half an hour. The flax releases a mucilage that does a wonderful job coating and protecting the mucosal lining. She can actually drink it too, as it’s great for the stomach and esophagus.
You definitely need to introduce some stronger probiotics. You can find them in powder form, which you just mix into water.
And one more thing: insist that her primary care physician performs a home visit so they can prescribe field nursing care. She is entitled to full coverage for this—up to 7 days a week, with visits lasting up to 45 minutes each. A nurse would recognize issues like the tongue condition immediately. They handle the daily cleaning and changing, and even help with a weekly bath so you don't have to shoulder it all. It was such a huge help to me, even though I handled my mom's baths on weekends once we had a solid routine working for our specific situation.

Thanks for the reply! I'll look into the flaxseed right away. I'm so glad I didn't suggest Hexoral.
The visiting nurse comes every other day, and the doctor stops by too, but everything feels so disorganized. For instance, the doctor mentioned she wasn't drinking enough because her urine output was low. I suggested to Grandpa that he get some Rehydromix so she doesn't get dehydrated and encouraged him to have her sip it slowly throughout the day. When the doctor returned, he actually praised the choice! He said it was a great call and could really help her. It's not that I'm trying to dictate terms, but he didn't even mention an anti-decubitus mattress or the fact that she's entitled to one, or even a hospital-grade bed. Honestly, if it weren't for the internet, she'd be lying on a click-clack sofa and just taking Neofen for the pain.
The visiting nurse definitely helps with washing and changing her. They'll be there tomorrow, so I'll tell Grandpa to have them keep an eye on her tongue. She keeps her hand over her mouth constantly because she's embarrassed that she can't close it properly and that it's so dry; maybe she was just too shy to show the nurse.
I'm sending them the Prolife tomorrow, too. Hopefully, it provides at least some relief.

Does anyone here have any experience using Hydrazine sulfate specifically to help prevent weight loss in cancer patients??

https://www.cancer.gov/about-cancer/...e-pdq#link/_32

Angela Wright said:Reading this feels like looking at a mirror of myself from ten years ago. Yeah, it’ll be ten years this November since she passed, and twelve years since that diagnosis hit in July.

A whole decade has gone by, yet my thoughts haven't shifted one bit... plus I've picked up plenty of heavy realizations along the way...

I really hope you find more peace than I have. I’m still searching for that stillness I need, and honestly, a huge part of that is because the system hasn't changed a damn thing.
We still don't have proper palliative care or hospices here. As a society, we completely failed. I just can't find peace.

That’s the most tragic part. Unfortunately, nobody gives a second thought to this until they grow old or someone close to them gets sick. I’m terrified this country will never actually reach a level where it truly cares for its vulnerable and elderly citizens, even when they—or we—eventually become the majority.

Hi everyone. I’ve been following this thread for quite a while now, and after doing a lot of digging, I have a question for those who might have navigated something similar...
The diagnosis is lung cancer with metastases in the liver. However, the patient has gained a few pounds recently, and their condition fluctuates constantly from one day to the next. One day they seem fine and full of energy, and the very next day the pain returns. The size of the tumor isn't actually large. So, I’m wondering—is it normal for a doctor to say with such certainty that chemotherapy won't work and that we should prepare for the worst?
Thanks, everyone.

Larry Baker67 said:Hi everyone. I’ve been following this thread for a while now, and after doing a ton of digging, I have a question for anyone who has dealt with this before...
The results show lung cancer with metastases in the liver... however, the patient has gained a few pounds in the meantime, and their condition fluctuates wildly from day to day. One day they seem fine and have energy, then the next day the pain returns... the tumor size itself isn't huge. So, I'm wondering—is it normal for a doctor to say with total certainty that chemotherapy won't work and that we should just prepare for the worst...
Thanks, everyone.

If the disease progresses while on a specific treatment, it means the medication has failed and there’s no point in sticking with it. There are other lines of therapy out there, so you need to look into those options.
Lung cancer with liver metastases is a pretty brutal diagnosis, and the prognosis generally isn't great.
Regardless, go get a second opinion—either privately or at a different hospital. Honestly, doing both is your best bet.

Angela Wright said:Honestly, I’m at a loss for advice because what you're facing by Wednesday is truly an extraordinary situation.
A few days ago, I watched an episode of House about a woman dealing with two different cancers—one was being managed while the other was out of control. I can't tell how much of that is pure fiction and how much is a genuine medical possibility.
I figured his first priority would be addressing the brain issues.
Hang in there and just take it one day at a time. Who knows? Maybe Temodal will have an impact on both the melanoma and the testes. If so, it could set a precedent for some off-label clinical use in future cases.

Thanks for reaching out. For now, we are extremely satisfied with the treatment at the Mayo Clinic. It’s a bit of a drive for us, but we make it work.
Last week he underwent preparation for radiation, and this week he started both radiation and chemo. He’s handling the combination well. He's mobile, has an appetite, though he does nap a bit every afternoon.
The doctors at the Mayo Clinic asked him to participate in a study since his case is so complex. Because they were so transparent about his issues and everyone wanted to help, he agreed—with the strict condition that his personal data remains private. That was the arrangement.

That’s all from me. Regards to everyone else in the fight.
Minić

Hey everyone. I’m looking for some advice here—my grandfather is dealing with prostate cancer that’s spread to his bones and liver. Things actually look better regarding his liver, but the bone issues are getting worse. He hasn't done any hormone pills or chemo yet, but he’s been on these new experimental drugs, Xtandi, for about 10 days now. Honestly, he's having a rough time—his appetite is nonexistent, his digestion is a mess, and the pain is intense. On top of that, he started radiation again a few days ago. So, does anyone know if it's okay to combine cannabis oil with these experimental treatments? I'm not entirely sure if that's even the right thing to ask his doctor about.
Any bit of info would mean the world to us. Thanks in advance.

Olivia Martinez98 said:Hi everyone. I really need some help finding information here. My grandfather has prostate cancer that has already spread to his bones and liver. Right now, his liver situation has improved, but things are getting worse with the bone metastases. He hasn't used any hormone pills or gone through chemotherapy yet, and he’s been on a new experimental drug called Xtandi for about 10 days now. His appetite is terrible, his digestion is a mess, and the pain is intense. On top of that, he started radiation again a few days ago. Does anyone know if it's safe for him to combine cannabis oil with these experimental drugs? Where can we look into this? I'm honestly not sure if it's even appropriate to ask the doctors.
Any bit of info would be a huge help. Thanks in advance.

The radiation should definitely help manage those bone metastases and take some of that pain away.
As for the cannabis oil, I don't have any firsthand experience with it, but I doubt there would be a major interaction. If you were to hypothetically ask an anesthesiologist, they could probably give you a straight answer on that.
Also, your grandfather is entitled to Durogesic patches, which make it much easier to manage his dosage.

Dad passed away the night before last. Lung cancer—diagnosed about a year and a half ago. In the end, it was just patches and cannabis; he wasn't in pain and wasn't even aware of what was happening (definitely a blessing in this situation).

Lawrence Ortiz6 said:My father passed away the night before last. Lung cancer, diagnosed about a year and a half ago. In the end, it was just patches and cannabis; he wasn't in pain and wasn't even aware (a blessing in this situation).

Lawrence, please accept my deepest condolences. 😢

My dad ended up in the ER today with a massive pulmonary embolism.
The doctor sounded optimistic, just saying, "We'll treat him."

I honestly don't know what to think—how dangerous is this for him? He had actually started looking better lately; he was even starting to speak some words again.

The worst part is, this doctor kept coming by for home visits saying his lungs were perfectly fine and just prescribed him some cough syrup.

Lawrence Ortiz6 said:My Dad passed away the night before last. Lung cancer—diagnosed about a year and a half ago. Toward the end, it was just patches and cannabis; he wasn't in pain and wasn't really aware of his surroundings (which, honestly, is a blessing in this situation).

Please accept my deepest condolences.
I hope you find some peace in your heart.

Grace Ross20 said:Lawrence Ortiz6, I am so sorry for what you're going through.😢

My Dad ended up in the ER today with a massive pulmonary embolism.
The doctor sounded optimistic, just saying, "We're going to treat him."

I honestly don't know where my head is at—just how dangerous is this for him? He had actually started looking better lately; he was even starting to find his words again.

What makes it worse is that the doctor had been coming by for home visits constantly, telling us his lungs were perfectly fine, and she even prescribed him some cough syrup.

Pulmonary embolisms are actually pretty common with patients who are immobile. It’s definitely not good news, but if they're saying they're going to treat him, there's still a fight left.
I think an embolism is ultimately what took my Mom from me.

Angela Wright said:Pulmonary embolisms are actually quite common in patients who aren't mobile. It’s certainly not a happy turn of events, but since they've already decided to treat him, there's a path forward.
I honestly think an embolism is what ultimately took my mother.

So, does that mean she passed away from an embolism?

Grace Ross20 said:So you're saying she died from an embolism?

I'm assuming so. She likely choked while eating a spoonful of grits, and despite CPR, her lungs just gave out. When patients are bedridden for long periods, suddenly moving them to an upright position carries a massive risk of an embolism.