Support resources for families dealing with cancer and other serious illnesses

Linda Baker51 said:And now something completely different… I don’t think a single day goes by without me reading your posts, our posts. Sometimes I start typing, sometimes I get halfway through, and sometimes I can’t even finish half a sentence before I just give up... most of you don't know "our story"; it started so long ago that even I barely remember the beginning. I know I'm exhausted, totally drained... I know I've had enough of the waiting, the fear every time the phone rings at some ungodly hour... I can't handle the uncertainty anymore, I just can't... I'm worn out by everything—the fears, the hopes, the anticipation, all of it... I just want to live without a care in the world. I want to stop seeing sick people, stop hearing the moans of pain; I want it so badly that I catch myself thinking I don't even want to live anymore, just so I can feel peace, ease... I want to dedicate myself to my own life. You probably think I'm being a selfish bitch, but honestly, after eight years, I'm giving myself permission to feel this way, to wish for it... my own life, my best years passing me by without a fight... I don't feel the need to keep giving myself away like this anymore... I want my youth back; is that so wrong of me? Is it abnormal? I want to spend my afternoons and weekends on myself, with my friends, doing things that actually make me happy, finding the kind of love that hasn't entered my life since this illness arrived... I just want this whole damn thing to be over... one way or another... I simply can't do it anymore, I just can't... I can't carry this burden alone, I just can't... I'm disgusted by everything... I'm sick of it all... I feel like a half-inflated or deflated balloon that doesn't even have the strength left to pop... and here is my biggest confession: I've started to resent her for being sick. Yes, that's it... I've even allowed myself that much... I know, I'm a horrible person, but I just can't help it... and please, don't come at me with all that talk about how she isn't to blame, or how I have to stay strong, or how much I've endured over these years—I know all of that, I am fully aware, but I just can't... frankly, I don't even feel like trying anymore... can you imagine that?

Honey, "carefreeness" is an ideal we made up; it doesn't exist.
Before her illness, there was that time, wasn't there? And then brutal reality hit and the realization set in that something wasn't right.
The truth is, things are never truly okay. That's the realization I reached when I went through exactly what you're going through now. Things happen, but in between those events, you live life with full lungs, pursuing everything you want and need, and no, that isn't selfish. In fact, the way you feel exhausted and half-dead right now is a direct product of the circumstances you've been dealt. Sweetie, today we walk around happy and cheerful, grabbing coffee with friends, and tomorrow we might not have to. There were people who came to visit my mother, thinking they were coming to say goodbye to her, but in the end, it turned out she was the one saying goodbye to them—they passed away suddenly before she did.
It's been five years now since my old woman has been gone; everything stopped. And yes, I wished for her to finally pass away too; I couldn't take it anymore. Every morning I woke up with one thought: "How much longer, Lord? Why all of this, why this kind of life for her and for me..." ...and now she's been gone for five years, she's gone, and it still hurts terribly to think about how it all happened. Even after she died, I had that period where I thought maybe I'd finally have some peace, but then came new phone calls, new bullshit, and big stuff at that... that's life. And since life has a way of throwing a wrench in your plans, don't go making it harder on yourself. Do whatever you need to do, without apology. If you can't do it anymore, don't. Just don't. Grab every hour you can and make them yours.

To be honest, I don't think I'll ever find that spark again. What I miss most isn't just happiness—it's that sense of total, carefree lightness, and losing that is what really cuts deep. Don't get me wrong, I love my child and I show up for them, but that inner joy I used to carry? It's gone. Life's unfairness and the sheer weight of the pain I've endured just crushed it. I’m terrified that since my child didn't bring it back to me, it’s gone for good. I feel like I'm living as a fraction of the person I used to be, and because of that, my husband will never truly know the whole version of me. Maybe the fault lies with me; maybe I lost it because I didn't take care of myself enough, or because I spent so much energy fighting against universal truths that you simply have to accept if you ever want to move forward with your life.

Angela Wright, mine just won't budge. Honestly, I think playing it cool and just ignoring the drama is actually working for now. I’ve tried that stuff you mentioned a few times already, but it didn't do squat. It feels like people seriously need to be met with total silence so they finally realize they've crossed the line—it’s pathetic on their part, but hey, it works for me. I never thought I'd be the type to shut someone out with a smile on my face without feeling a single sting emotionally. Sad for me, right? Guess I'm just evolving... straight into a caveman.

Chloe Nguyen3 said:Angela Wright, this thing I'm doing isn't working for me—it feels like just slightly ignoring them is actually getting results for now. I've tried what you wrote at least a couple of times, and there was zero impact. It seems like people need to be ignored before they realize they've crossed a line; it’s tragic on their part, but it works for me. I never thought I'd be the type to ignore someone with a smile on my face without it affecting me emotionally, which is pretty sad if you ask me. I'm evolving... into a caveman.

Then just be direct. Tell them you've politely asked them not to bother you anymore and simply shut down any conversation about it. Be decisive and just walk away.

Good afternoon, everyone. My father-in-law has just been diagnosed with adenocarcinoma. Unfortunately, the cancer has spread through fluid, leading to some serious issues with pleural effusion in his lungs, though they have managed to stabilize that somewhat for now... He is 75 years old, and <u <to be honest, we were told there is no option for surgery or radiation; it's strictly palliative chemotherapy and a timeline of roughly six months. If anyone could point me toward a specialist or a facility in a major medical hub like New York City or Houston where we might seek a second opinion—and how to best navigate that process—it would mean the world to us. Please feel free to reach out via DM. We’ve already dealt with so much loss; they buried his daughter just a few years ago when she was only 42 due to a brain tumor. I truly thought he would at least get to live out his years without this kind of suffering and debilitating illness...

Angela Wright said:Just be blunt about it and tell them you politely asked to be left alone, then shut down the whole conversation and just keep walking down the hall. Decisive, you know?

I'll figure something out.
Thanks for the reply.
🙂

vividsailor7 said:I haven't forgotten you guys, I'll get back to you when I can.

We definitely need more data here—things like blood work, imaging results like ultrasounds or CT scans,
current treatments, age, any other symptoms, specific diagnoses, and so on.

Hi everyone! I finally managed to track down some information. My mom is in the hospital right now, and they found metastases in her hip. I’m going to try to type out everything I’ve received, though I feel completely lost in all these numbers.
L 8.81, E 3.54, Hgb 92, Hct 0.303, MCV 85.6, Plt 480, MCH 5.9, Urea 3.9, Creatinine 49, Urate 207, K 4.6, Bilirubin Ind. 5, AST 15, ALT 13, ALP 134, GGT 78, Serum Amylase 75, Fe 3.4, UIBC 27.1, TIBC 30.5, CEA 3.29, AFP 7.5, CA 19-9 1787.7
ABDOMINAL ULTRASOUND: The liver is globally enlarged with regular contours and no obvious focal lesions, though the parenchyma has a granular texture. In the gallbladder area, there is an inhomogeneous, irregular mass. The common bile duct is dilated. The pancreas is difficult to visualize and appears hyperechoic. Both kidneys are normal size with regular contours, no obstruction or stones, and preserved parenchyma with normal echogenicity. The spleen is longitudinal, about 12 cm, with no focal changes.
CT OF LUMBAR SPINE AND PELVIS: This scan shows the bone structure. There is osteolysis in the iliac bone above the acetabulum, the femoral head, and the medial wall of the acetabulum, which looks like secondary spread from the primary disease. A break in the bone continuity—essentially a fracture—has occurred in the pathologically changed bone of the medial acetabulum and the iliac bone. The bone structure of the right femoral head is slightly inhomogeneous.
Diagnosis
Metastatic bone disease of the right ilium, acetabulum, and femoral head
Gallbladder cancer
Malignant infiltration of the right lobe and porta hepatis
Status post resection of liver lobes IVb and V along with gallbladder resection
Osteolysis/metastasis at T6 - status post radiotherapy
Status post pulmonary artery embolism
DVT of the right lower leg

Oh, and I should mention, my mom is 58 years old.

Thanks so much in advance!

vividsailor7 said:I haven't forgotten about you all; I will get back to you when I am able.

We definitely require more data, such as laboratory results, radiological findings—ultrasound, CT scans,
current therapy, age, additional comorbidities, diagnosis, and so on.

I am requesting assistance; we are from Cleveland, and they are only suggesting palliative chemotherapy for my father-in-law...
My father-in-law is 74 years old. Following an extensive series of tests, an adenocarcinoma of the stomach was identified. A pleural puncture and an ascites puncture were performed, which confirmed the presence of malignant cells. ECOG score is 2. There are pleural effusions. Primary neoplasm is gastric, with a large left-sided pleural effusion (1500ML).

Histopathology of the gastric mucosa biopsy shows high-grade atypia and areas of invasive adenocarcinoma.

Pleural fluid analysis: glucose 4.1, LDH 794, amylase 64, protein 42.

Cytology report from the ascites puncture:
The sediment contains numerous malignant glandular epithelial cells (BER EP4 positive), ruling out a pulmonary origin for the tumor; the findings are consistent with gastric cancer.
EKG shows an axis deviation of over 30 degrees, heart rate 78 bpm, several individual ectopic beats, lack of R-wave progression from V2-V3, and bradycardia.

In 1965, he underwent surgery for a stomach ulcer.

Now, there is no possibility for surgical intervention or anything else; they are only recommending palliative chemo. Is it even worth administering this to the patient? I would appreciate your medical opinion, thank you in advance.

Here is a little bit of good news for once. 😁
I just finished up with my MRI, and everything looks perfectly fine—it’s been three whole years without any recurrence. 🙂
My neurosurgeon mentioned that if things stay this way for another two years, I can finally scale back to seeing him once a year instead of twice.

While I was at the imaging center on Monday, I ended up chatting with a woman who was there to pick up her results. I was waiting for my own appointment, and she told me her husband has been battling an astrocytoma for ten years now. 🙂
We actually ran into each other again today at the neurosurgeon's office, though I didn't really get a chance to catch up with her properly. 😢

Right now, my main issue is some minor secondary stuff; specifically, I have a small perforation in my eardrum that's acting up. 😢

feralridge3, I’m really glad to hear that 🙂

I hope you and Dow Chemical have a great time celebrating.

I could really use some help here.

Does anyone know where or how I can find papaya juice, papaya leaf extract, or—most importantly—papaya leaf tea here in the US (specifically around Washington, D.C.)?

I remember seeing someone mention papaya tea a while back, but I haven't been able to track down a place that actually sells it. I’ve done a bit of searching online, but I haven't found anything helpful on any American sites.

Does anyone have any leads?

I need this for my mom; she's fighting pancreatic cancer.

Thanks.

Sophia Davis4 said:Hi everyone!
My heart goes out to Leah and her family.

I really need some help here. After getting the discharge papers for my mom—she’s currently at the hospital in Washington, D.C., following surgery to remove her gallbladder and part of her liver—I realized I don't understand a single word of this. Could someone please help me make sense of this medical jargon?
dg: adenocarcinoma vesicae felleae, infiltratio hepatis seg IVb et V
th. resectio atypica seg. IVb et V cum vesicae felleae, lymphadenectomia lig. HD Resectio omenti mayoris

It also says:
1. A section of the bile duct, about 0.2 cm in diameter, showed no tumor tissue during the intraoperative biopsy or in the subsequent permanent sections; all structures remained intact.
2. An irregular piece of tissue, 0.7 cm in diameter, corresponds histologically to two lymph nodes measuring up to 0.4 cm, one of which is infiltrated by metastatic tumor, appearing as the primary tumor in material 4.
3. Fatty tissue, 5 cm in length, containing nine lymph nodes measuring 0.3-1.6 cm, two of which are infiltrated by metastatic tumor.
4. Gallbladder measuring 6x4 cm with an attached liver resection measuring 12x9x8 cm... visible perivascular and perineural invasion. Marked desmoplasia and areas of necrosis. In the area of the gallbladder neck, a 0.6 cm lymph node is infiltrated by metastatic tumor. The tumor invades the surrounding fatty tissue and liver tissue; at the caudal edge of the liver parenchyma, there is attracted fatty tissue, and the tumor invades the capsule, though the fatty tissue itself was preserved. The remaining parenchyma maintains its architecture, with portal spaces showing mild to moderate chronic inflammatory infiltrate along with cholangiolar proliferation; approximately 20% of the hepatocytes in the liver lobules show microvesicular and macrovesicular steatotic changes in their cytoplasm. The resection margins at the gallbladder neck and the liver parenchyma are clear.

Does anyone actually understand this?! Based on this, what kind of prognosis should we be expecting?
Thanks in advance.

Sophia Davis4 said:Hello! I finally managed to get some more information. My mom is still in the hospital; they found metastases in her hip. I'm going to try to transcribe everything I received, because I am completely lost in all of this.
L 8.81, E 3.54 hGB 92, hCT 0.303, MCV 85.6, Tr 480, MCV GUK 5.9, urea 3.9, creatinine 49, urate 207, k 4.6, bilirubin ind. 5, AST 15, ALT 13, ALP 134, GGT 78, serum amylase 75, Fe 3.4, UIBC 27.1, TIBC 30.5, CEA 3.29, AFP 7.5, CA 19-9 1787.7
ABDOMINAL ULTRASOUND: The liver is globally enlarged with regular contours, no visible focal lesions, though the parenchyma has a nodular structure. There is an inhomogeneous, irregular mass in the gallbladder region. The common bile duct is dilated. The pancreas is difficult to visualize and appears hyperechoic. Both kidneys are normal size with regular contours, no obstruction or stones, and the parenchyma is preserved with normal echogenicity. The spleen is elongated, measuring about 12 cm, without focal lesions.
CT OF THE LUMBAR SPINE AND PELVIS: This CT was performed to examine the bone structure. Osteolysis is visible in the iliac bone above the acetabulum, the femoral head, and the medial wall of the acetabulum, which is consistent with secondary spread from the primary disease. There is a loss of bone continuity—essentially a fracture—in the pathologically altered bone of the medial acetabulum and the iliac bone. The bone structure of the right femoral head appears slightly inhomogeneous.
Diagnosis
metastasis of the right iliac bone, acetabulum, and femoral head
gallbladder area
malignant infiltration of the right lobe and the hepatic hilum
status post resection of liver lobes IVb and V along with gallbladder removal
osteolysis/metastasis Stage VI - status post radiotherapy
Status post pulmonary artery embolism
DVT of the right leg

And I should mention, my mom is 58 years old.

Thank you all in advance!

There isn't much to say here, so let's just go through this briefly, starting with the gallbladder.
Gallbladder tumors are incredibly sneaky—they often don't show any symptoms at all. They fall into the category of rarer cancers, yet they sit at number five on the list of gastrointestinal tumors.
Given the metastasis, I’m assuming we're looking at a tumor that grew from the outer wall facing the abdominal cavity. Some risk factors include porcelain gallbladder or IBD. It's more common in women, and most cases are adenocarcinomas.
Very frequently, these are caught at an inoperable stage, even though surgical intervention is the primary treatment.
Because they are so rare, there are only a handful of studies out there involving small numbers of patients.
The standard approach usually involves 5-fluorouracil, though radiation therapy can be used as well.
Based on clinical indications, a CT scan of the abdomen should be performed.
Keep an eye on PV/INR levels.

Sarah White34 said:Please, I need help. We're here in Cleveland, and they're only suggesting palliative chemotherapy for my father-in-law...
He's 74 years old. After an exhaustive battery of tests, they've diagnosed him with gastric adenocarcinoma. They performed both a pleural puncture and an ascites puncture, which confirmed the presence of malignant cells. His ECOG score is 2. He has pleural effusions. Primary gastric neoplasm, with a large left-sided pleural effusion (1500ML).

The histopathology of the stomach mucosa shows high-grade atypia. There are clusters of invasive adenocarcinoma.

Pleural puncture results: glucose 4.1, LDH 794, AMY 64, protein 42.

Cytology report from the ascites puncture:
The sediment contains numerous malignant glandular epithelial cells (BER EP4 positive). Lung origin has been ruled out; findings are consistent with gastric cancer.
EKG shows PR interval over 30 degrees, HR 78/min, several individual ectopic beats, lack of ST elevation from V2-V3, normal heart rhythm.

Back in 1965, he had stomach surgery under general anesthesia.

Now, they say surgery isn't an option, nothing can be done—just palliative chemo. Is it even worth giving to a patient in this condition? Please, doctors, I need your opinion. THANK YOU IN ADVANCE.

You really need to provide the tumor marker results, the CT scans, EGD/endoscopy reports, and the full blood chemistry panel.

Can anyone walk me through what the follow-up process looks like after beating lymphoma? I'm wondering if they track specific markers or something like that?

wiredcanyon39 said:Can someone tell me how follow-up monitoring works after being cleared of lymphoma? Are there specific markers they look for?

Usually, it’s blood work and a PET scan, but honestly, your oncologist decides the frequency based on your specific case. I think you might get a PET scan once a year, but I'm not entirely certain.

Angela Wright said:Usually it's blood work and a PET scan, though I guess the doctor just decides on the frequency based on the specific case. If I remember right, maybe a PET scan happens once a year? I can't be totally sure.

But wait, what specific things are they actually looking for in the blood work? I seem to recall back when we didn't even know what we were dealing with, the blood tests didn't show a thing. And isn't a PET scan basically just a regular CT scan? Like, what's the actual difference there?

wiredcanyon39 said:But wait, what actually matters when you're looking at blood work? I remember back when we didn't really understand the specifics, people used to say a blood panel didn't show anything useful. And isn't a PET-CT basically just a standard CT scan anyway? What's the actual difference there?

It’s all about how your liver and other vital organs are performing; you can essentially read the status of your internal systems through blood work to stay ahead of any red flags or shifts in health. As for the imaging, a PET-CT is specifically designed to pinpoint whether any tiny residual nodules are still lurking around. Depending on where those spots were originally located, doctors might also lean on different types of diagnostic testing to get the full picture.

For heaven's sake, PET CT and MSCT are NOT the same thing!

Please take a look at this thread. You'll likely find people who have dealt with similar issues here. Thanks much.

Greetings, everyone. Unfortunately, we find ourselves discussing such a somber topic.
My mother completed her sixth chemo session this past Wednesday. Up until that point, the only side effects she dealt with were some knee pain. However, it’s been a week since that sixth round, and she’s feeling incredibly weak... is this just a standard side effect, or is it an indication that things are taking a turn for the worse? Is this level of fatigue to be expected?
Her appetite remains normal for now.

One more thing—is remission after treatment a guaranteed outcome, or is it strictly down to the individual? And if it does happen, what is the typical duration?

How much of a break is required between the sixth cycle and the next round of chemotherapy?

To make matters worse, her doctor refuses to provide us with any information whatsoever. He won't even speak with us... which leaves me with no one to ask but this group.

graniteridge5 said:Hi everyone. Unfortunately, we're gathered here for such a heavy topic.
My mom finished her 6th chemo session this past Wednesday. Up until then, the only side effects she dealt with were some knee pain. But it’s been a week since that 6th round, and she just feels so incredibly weak... is this a standard side effect, or is it a sign that things are taking a turn for the worse? Is this normal?
She’s still eating normally, though.

One more thing—is remission after treatment guaranteed, or does it vary from person to person? If it does happen, how long does it typically last?

Also, how much downtime is usually required after 6 cycles before starting the next round of chemo?

Her doctor won't give us any information at all. He doesn't even want to talk to us... so I don't have anyone else to ask besides this group.

My mom went through 6 cycles of chemo as well. Each cycle lasted about 5 days, followed by roughly a 4-week break. That weakness you're seeing is completely normal.
In the beginning, my mom felt okay, but as she progressed through more rounds, the side effects actually got tougher. For her, it was more of a mental struggle than a physical one. During the actual week she was receiving treatment, she felt fine, but the days following were rough—she dealt with fatigue, nausea, and diarrhea, and she lost quite a bit of weight (she could eat well at first, but it got harder as time went on). It really is different for everyone. A close friend of hers didn't have any major issues at all, aside from losing her hair.