Support resources for families dealing with cancer and other serious illnesses

Hey there, brave souls.

I’ve been lurking in this thread for a while now, so I finally decided to jump in. My 70-year-old mom was diagnosed with malignant melanoma back in 2005. It stayed relatively under control for the most part—until now—but unfortunately, it’s metastasized to her lymph nodes. I’ll write out her full story in a few days, but for now, I just wanted to ask: does anyone know what happened with the husband of Daisy seed? I'm hoping someone has an update—he had the exact same diagnosis, and I'm trying to get a sense of what we're looking at.

Thanks in advance.

I want to apologize; I made a mistake in my initial post when I mentioned that his white blood cell count and hemoglobin levels were elevated. In reality, they are actually low, which is why the results are so concerning.😢 That isn't the reason they decided to proceed with chemotherapy, but I am still deeply worried...😢

Kimberly Wright said:my mom passed away yesterday

So sorry...

Kimberly Wright said:my mom passed away yesterday

Honey, I am so incredibly sorry for your loss. Please accept my deepest condolences.😢
Hang in there and keep staying strong—stay the brave woman your mother raised you to be.

Kimberly Wright said:my mom passed away yesterday

Kimberly Wright, I am so sorry. Please accept my sincere condolences.

Kimberly Wright said:my mom passed away yesterday

Kimberly Wright, I am so sorry. My deepest condolences.
Hang in there.

Alright, I promised I’d share my mom’s story:

Back in 2005, she noticed this black spot on her left lower leg—just above the ankle. It wasn't there before, about the size of a fingernail. There were a few bluish spots around it too, but since Mom deals with thrombosis in that leg, she didn't think much of it—figured it was just some bulging veins or something. It wasn't until the spot actually started bleeding that she went to her GP, who sent her to a dermatologist and then finally to MD Anderson Cancer Center to have the area excised. I really want to give credit to Dr. Nolan there.
When she went back to get the results, the doctor who usually handles her was away on vacation. He was replaced by some other guy—I can't remember his name right now, but I'll find out and post it later because he was completely incompetent. He looked at the pathology and told her everything was fine, diagnosing it as a balloon nevus—basically a blister mole—and said she was good to go. Even the dermatologist over at Mayo Clinic was useless; she was way too happy to just tell her the results were "good."
The only one who actually used her brain was a little-town family doctor who told us it didn't look like a good sign at all.
At the three-month follow-up, Dr. Nolan practically grabbed his head when he saw what his colleague had reported... long story short, Mom ended up in surgery. They performed a wide excision of the mole along with the surrounding tissue. They checked the lymph nodes under her knee and in her groin, and nothing was found then. I don't have the paperwork handy, but it was Stage 1, though they were worried about those tiny satellite spots appearing around the site.
After that, Mom underwent six cycles of DTIC chemotherapy because they said there wasn't anything else they could do. For the next five or six years, she went in for checkups every four months, where they only checked tumor markers—which always came back normal. In the meantime, she also dealt with breast cancer, which was caught early and removed along with the lymph nodes; she had targeted radiation for that area as well. Throughout all this, her lower leg just kept looking worse—spots would pop up and disappear, or show up and stay. A few months ago, one started bleeding again, and despite regular dressing changes, it wouldn't heal. Two months ago, she had surgery at Mayo Clinic to remove that section with deep margins, and they had to graft healthy skin from her thigh. Despite how horrific it looked, it healed well, which is honestly a miracle given her thrombosis issues.
Two weeks ago, Mom felt a lump in her groin, and a few months back, she felt one in her lower back—but she didn't tell anyone.
Diagnosis: lymph node metastases. Tumor markers are normal, and the abdominal CT showed nothing.
Dr. Thomas at the Institute has put her back on DTIC; he says there isn't any other choice. She starts on June 6th.
Look, I know the situation is bad. I know chemo efficacy isn't great, and I know there isn't an adequate treatment out there. There aren't even clinical trials available. I'm going to buy her some beta-glucan to hopefully help her get through this, and then we'll leave the rest to God.
Any advice or experiences you guys have would be appreciated.

Kimberly Wright said:my mother passed away yesterday

My deepest condolences. I know words don't offer much comfort right now.🙂

Thank you, everyone.
I suppose the only small comfort in the midst of everything she endured over this past year and a half is that she was able to pass away at home, in peace, and with me right by her side. In a way, it saved her from even greater suffering.
They say time heals all wounds, and I try to hold onto that thought to get through this; it just hurts so deeply knowing the hell my mother had to go through.
My heart goes out to anyone else currently navigating the struggle against these kinds of illnesses 😢 I truly wish the very best for all of you.

I already posted an ad on the association's forum, but I figured I’d just repost it here as well, just in case...

I have a few items I'm looking to give away, which I really hope will find their way to someone who can actually make use of them:

- diapers, size Medium
- adult incontinence pads, size Large
- bed pads/underpads

In addition to those things, if anyone happens to be in need of things like Regla, etc., I'd be happy to include those too.

The only thing is, I would really prefer to handle the hand-off locally in Chicago. If you're interested, just send me a private message.

I am honestly so relieved to have stumbled upon this thread. Around here, when someone gets a cancer diagnosis, the family is basically left to navigate the massive wave of information and support all on their own. It drives me absolutely crazy because even though our doctors are incredibly talented, they rarely take the time to address the actual side effects of chemotherapy—unless we're talking about the obvious stuff like hair loss or nausea. I feel less like a family member and more like a full-time researcher; I spend so much time digging through medical sites online that I half expect to receive a medical degree any day now. As for my situation, my father is dealing with metastatic hormone-refractory prostate cancer. He’s been fighting prostate cancer for ten years now and was managed on hormone therapy, but unfortunately, metastases have recently appeared, so he's starting chemotherapy with docetaxel and Zomet.
I wanted to see if anyone else out there is on this specific treatment—or any type of chemo for that matter—who is experiencing spontaneous bruising or hematomas on their arms and legs? These bruises just seem to appear out of nowhere, and even the slightest touch can cause them, sometimes even leading to small sores. I know many side effects are common, but I haven't heard anyone in the US mention this particular one before.
Best, placidbear10

mistybadger55 said:As promised, here is my mother’s story:

Back in 2005, she noticed a black spot—a mole—on her left lower leg just above the ankle. It wasn't there before; it was about the size of a fingernail. There were several bluish spots surrounding it, but since my mom deals with thrombosis in that leg, she didn't think much of it—it just looked like bulging veins. It wasn't until that spot started bleeding that she went to her GP, who referred her to a dermatologist and eventually to the MD Anderson Cancer Center, where they excised the area. I want to give a shout-out to Dr. NOL there.
When she went in to get her results, the doctor who usually handles her case was away on vacation. He was replaced by another fellow—I don't recall his name yet, but I'll find out and post it—who proved himself to be completely incompetent. He misread the pathology entirely, telling her everything was fine because it was just a balloon nevus (a blister-like mole). Even the dermatologist at the medical center was equally useless; she seemed overly relieved that the results appeared "good."
The only one who showed any actual intelligence was a rural GP who mentioned that the results didn't look right to her.
At the three-month follow-up, Dr. NOL practically grabbed his head when he saw what his colleague had reported... long story short, my mother ended up in surgery. They had to perform a wide excision of the mole along with the surrounding tissue. No signs were found in the lymph nodes under the knee or in the groin. I don't have the paperwork handy, but at that point, it was Stage 1, though they were concerned about several small satellite spots.
Following that, Mom underwent six cycles of DTIC chemotherapy, as they claimed there was no other option. For the next five or six years, she went in for checkups every four months, where they only checked tumor markers—which remained normal. In the meantime, she also dealt with breast cancer, which was caught early and removed along with the lymph nodes; she also underwent targeted radiation for that area. Throughout this whole period, her lower leg continued to deteriorate—spots would appear and disappear, some staying while others vanished. A few months ago, one started bleeding again; we did regular dressings, but it wouldn't heal. Two months ago, she underwent surgery at the medical center to remove the area with wide, deep margins, and they performed a skin graft from her thigh. Despite how horrific it looked, it healed well—which is nothing short of a miracle given her venous thrombosis.
Two weeks ago, Mom felt a lump in her groin—and a few months back, she felt one in her lower back—but she didn't tell anyone at the time.
Diagnosis: lymph node metastases. Tumor markers are normal, and an abdominal CT showed nothing.
Dr. Thomas at the institute has once again prescribed DTIC; he says there are no other choices. She starts June 6th.
So, I know the situation is grim. I know chemotherapy isn't particularly effective, I know there isn't an adequate treatment, and there are no clinical trials available. I'm going to buy her some beta-glucan to hopefully help her endure this—whatever happens, happens.
Any advice or experiences you might have would be welcome.

Your mother's story isn't an exception; it's more of a rule. I know plenty of cases where doctors simply misread a report and caused massive, irreparable damage to a patient. I haven't heard of anyone being held accountable for this in America, which doesn't surprise me—given that hospital directors and heads of health institutions are appointed by the government, political loyalty is the primary criterion, while professionalism is often seen as a nuisance.

Medicine isn't really my specialty, but I’m starting to think they really botched things with my mom... After her initial colon surgery at Duke Cancer where they found a few affected lymph nodes, they opted for some kind of weakened-down chemo.
It wasn't until after a fourth surgery and six months of pure misery—dealing with raw meat, intestinal obstructions, and three more operations—that they finally put her on Folfiri. Now, after just three cycles, you can actually feel the tumor tissue through her abdomen, according to the discharge papers...
So, apparently, even this isn't doing a damn thing... 👎
Should we stick with the Folfiri, or should we be looking into stopping it to see if she qualifies for Erbitux testing?

Robert Grant84 said:Medicine isn't my specialty, but I honestly think they botched my mom's care. After her colon surgery for Duke Cancer involving several lymph nodes, they gave her some kind of weak chemo.
It wasn't until after a fourth surgery and six months of pure misery—dealing with raw meat issues, intestinal tangles, and three more procedures—that they finally put her on Folfiri. Now, after just three cycles, you can actually feel tumor tissue in her abdomen according to the discharge papers...
So, apparently, even this isn't doing a damn thing. 👎
Should we stick with the Folfiri, or should we push for a break and maybe look into testing for Erbitux?

Mom really should have been on Avastin or Erbitux as a first-line treatment, and frankly, I don't get why she wasn't. Usually, people facing colon cancer get Avastin right away, while Erbitux doesn't even come into play until the third line of defense. This looks like the standard Medicare protocol, if you know what I mean.
Get her tested for K-RAS.

Has anyone here encountered any information regarding the efficacy of Vidatox-lek from Cuba? Please forgive my poor English (I am originally from North Mexico)...🙂

Angela Wright said:My mother should have been given either Avastin or Erbitux right from the start, and I honestly don't understand why she wasn't. Usually, when dealing with metastatic colorectal cancer, people get Avastin first, and Erbitux doesn't even come into play until the third line of treatment. It seems like they're just following some standard Medicare protocol.
You need to ask about K-RAS testing.

Actually, if you look at the Medicare guidelines—both Avastin and Erbitux are listed for first-line treatment. The distinction lies in the application: Erbitux is typically reserved for patients whose metastases are localized solely in the liver, where surgery might actually be an option to clear the cancer, provided there isn't a KRAS gene mutation present. That’s precisely why that KRAS test is so vital.

Here is the link to the drug formulary:
page 69 - criteria for Erbitux
page 70 - criteria for Avastin

slyseal28 said:According to the Medicare formulary, both Avastin and Erbitux are listed as first-line treatments. The catch is that Erbitux is specifically reserved for patients whose metastases are limited to the liver—making them potential candidates for surgical removal—and, obviously, they can't have the KRAS gene mutation. That’s the whole reason we run the KRAS test.

Link to the drug formulary here:
Page 69 - criteria for Erbitux
Page 70 - criteria for Avastin

I was describing a scenario that’s actually pretty standard (even though I clarified in my opening sentence that both can be used as first-line options 😉). Usually, doctors start with Avastin, which means if they want to switch to Erbitux later, it won't happen until the third line of treatment, provided the patient tolerates it.
My concern is that this specific case is going to hit a wall with insurance coverage. Right now, the medical need is to administer either Erbitux or Avastin during the second line of treatment, but that doesn't align with Medicare's current indications.🙄🙄🙄

I just want to reach out and offer some support to everyone here. It’s the very least I can do to show my gratitude for the patience and love my parents showed me. They were right there by my side every single day at the oncology ward at Mount Sinai, never losing hope—just like the doctors and nurses there. I want to honor everyone who didn't make it through this journey. I was diagnosed with a kidney tumor when I was only a year old. As you can see, neither I nor my parents ever gave up. Just hang in there and stay patient!
(Igor, R.I.P... please know I still think about your bedtime stories all the time. I still can't believe how quietly you slipped away that night... Even though I was only three, I remember you, and I always will. My first friend...)

It honestly breaks my heart to read through everyone's posts here.
My mother passed away just 47 days ago from pancreatic cancer that had already metastasized to her liver.
She was gone only 10 days after we received the diagnosis.

I am still right in the thick of processing the sheer weight of her illness. I haven't even begun to truly process the reality of her death.

To add to everything, I’ve just discovered that I have a benign kidney tumor. All of this—it has somehow... well, it has forced me into a completely different headspace.

There is so much more I would write, but frankly, after reading the threads on this forum, I just don't have the strength. There is simply too much grief in this space.

I mainly wanted to reach out and mention that I recently finished a wonderful book—I suspect many of you are already familiar with it, but regardless—"Anti-Cancer" by David Servan-Schreiber. This man was a brilliant, ambitious young doctor and scientist who was diagnosed with brain cancer at age 31. He actually went into remission before facing a relapse. It is a story about his personal battle, but more importantly, it is packed with incredibly useful advice regarding nutrition and lifestyle...

Anyway, that's all from me for now. Perhaps this book might help someone else in their journey... And please know, I truly, deeply empathize with your pain, your sorrows, and your fears...

Azzura, please accept my deepest condolences. A death this sudden—it’s an extra layer of shock on top of all the existing pain and grief.
My mother fought this for three years, passing away slowly over several months in intense pain. I was living with the daily, inevitable reality of her end... yet even now, four months later, I still can't quite wrap my head around the fact that she's gone. I find myself still waiting for her to walk through the front door.