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Support resources for families dealing with cancer and other serious illnesses

Started by casualpanther1 · · 👁 28 views · 1.9K replies

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Participants casualpanther1quietpilot87Angela WrightJames Young87Zachary Howard2Benjamin Grant6wanderingharbor61Roger Hall15Zachary Booth3brightgardener8feralwolf24hiddentiger80Karen Fox36Elizabeth Diaz60slyseal28Linda Wright5James Martinez3Jeremy Kelly6gentlemoose62Maria Scott4shadowmason6Kevin Edwards35jadetinker42John Chase6 …
Carol Cook58 Carol Cook58 Newcomer
9 messages
joined Jan 2009
#1621 ·
So, I just finished reading up on this medication... and it says here that it’s designed to block those tumor cells from spreading. But honestly, looking at my dad's situation—he had kidney cancer, they managed to cut it all out, and there aren't any metastases to speak of—I can't help but wonder if there's actually much left for this stuff to even block. It feels a bit redundant, doesn't it? So, I guess what I'm really asking is, what does therapy even look like in a case like his?
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1622 ·
Carol Cook58 said:I just looked up that medication... but it says it works by blocking cancer cells from spreading. I’m wondering about my dad's situation—he had kidney cancer that was surgically removed, and there aren't any metastases. So, if there's nothing left to block, what kind of therapy would they even consider in a case like that?

Only an oncologist who actually has his medical records in front of them can give you a real answer to that.
Grace Stewart6 Grace Stewart6 Member
37 messages
joined Mar 2009
#1623 ·
Dad's back at the hospital in Jordan again, having been readmitted for treatment, and it’s just more of the same.
About a month ago, they surgically removed a growth from his rib cage. The pathology confirmed it's a metastasis, though where the primary source actually came from remains a complete mystery.
The doctors seem to be at a loss, knowing nothing beyond the fact that it's a malignant tumor. He’s essentially being cycled through the exact same battery of tests he underwent during his first stay in Jordan.
There is no active therapy or treatment plan in place yet, which is what's weighing on us most heavily. The doctor keeps insisting that nothing is certain, even though three months have already slipped by.
I actually asked if a PET scan might help pinpoint the primary tumor, to which the doctor replied that it might, but only after he completes the standard protocols like a CT and a bronchoscopy.
I honestly don't know how to process this anymore. Are we just supposed to trust that the doctors always have the best answers?
steelfalcon15 steelfalcon15 Member
10 messages
joined Jan 2009
#1624 ·
I have a question regarding my mother—she’s 53 years old. Her most recent oncology reports from the breast cancer team, dated January 14, 2009, state:

Diagnosis: Metastatic breast cancer. Supraclavicular and bone metastases present.

Surgical History (date, type): In 2003, she had an inflamed tumor in her left breast, clinically staged as T4 N2 M0. She underwent neoadjuvant chemotherapy following the FEC protocol for 6 cycles, followed by surgery—a mastectomy and likely axillary dissection (back in 2004).
Pathology: Grade II invasive ductal carcinoma, involving the entire breast. Axillary nodes: 5/9.
ER 100%, PR+, HER2+++

Received regional radiation therapy.
Following that, she was on hormone therapy—Tamoxifen from May 2004 until May 2007, at which point Tamoxifen was switched to Tamoxifen (due to endometrial hyperplasia).
In November 2007, imaging showed lymph node involvement on the right side.
Per the medical team's decision, she received 12 weeks of Paclitaxel combined with Herceptin.
Since May 2008, she has been taking Xeloda along with Herceptin. She completed 6 cycles of Xeloda.

In September 2008, she developed back pain, and an MRI revealed metastatic changes in the bones.
She received palliative radiation at TH9, 10, and 11, and was also given Aredia.
There was also progression in the right supraclavicular lymph nodes, along with rising levels in the CEA and Ca 15.3 tumor markers.
Xeloda treatment was discontinued, and Cisplatin was added to the regimen; she completed one cycle.

Starting in October 2008, she was on a two-month therapy regimen, receiving IV cycles (the last one being December 5, 2008).
By late December, the right breast began swelling again, showing progression in the right supraclavicular area and a conglomerate of lymph nodes in the right axilla.
Fine needle aspiration confirmed metastatic adenocarcinoma in the axilla. The breast biopsy itself was negative.

TREATMENT PLAN:
- Chemotherapy following the AC protocol, with cardiac monitoring via ultrasound.
Follow-up required: Chest X-ray, lab work, and tumor marker levels.

-- end of medical report --

I am looking for some advice or perhaps just a little guidance—from what I can gather, the report recommends chemotherapy using the "AC" cocktail, which I believe consists of Doxorubicin and Cyclophosphamide along with Paclitaxel (at least, that's what I've read online). Apparently, these carry pretty heavy side effects, such as nausea, vomiting, hair loss, hand-foot syndrome, and even potential heart issues—heart failure being a serious concern... 😲 😲 (again, this is just what I found through my own searching). My mother is already struggling quite a bit with these treatments—she’s been on various cytostatics and hormones since 2004, and frankly, the results seem to be getting weaker as time goes on, especially now that we're seeing new nodules and progressing metastases.

I AM EXTREMELY WORRIED! Does anyone have any advice? Perhaps tips on how to make the therapy more tolerable, or if there might be alternative treatments that yield better outcomes? Thank you!
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1625 ·
steelfalcon15 said:I need some advice or a bit of help here. From what I can gather, my results suggest I should go with the "AC" chemo cocktail—which, according to my own digging online, is actually a combination of Doxorubicin and Cyclophosphamide, plus Paclitaxel. Based on what I've read, this stuff hits hard. We're talking heavy-duty side effects like nausea, vomiting, hair loss, and those painful sores on your palms and soles. On top of that, there's the risk of heart issues, potentially even heart failure. 😲 😲 I read this online myself, but the reality is hitting home. My mother is absolutely struggling to cope with the chemo at this point. She’s been cycling through various cytostatics and hormone treatments since 2004, and honestly, the results just seem to be getting weaker and weaker as time goes on. Now, we're facing a constant influx of new nodules and metastases as the disease continues to progress.

I am seriously freaking out here. Does anyone have any advice on how to make this treatment more bearable? Or better yet, does anyone know about alternative therapies that actually get better results? Thanks!

Based on everything I just read, it looks like my mom is right in the thick of it.😢 Side effects are just what they are—they happen, though that doesn't mean everyone has to deal with them. Is your mom taking anything specific to boost her immune system? We’ve gone over this topic extensively here.
Look, if I were you, I’d grab every single one of your mom's medical records and take her to see an independent oncologist for a second opinion. Yeah, it’s going to cost you some money, but it's worth every penny just to have total clarity on what the next move actually is.
slyjackal38 slyjackal38 Newcomer
2 messages
joined Jan 2008
#1626 ·
Thank you, everyone. My thanks especially to you for what was shared. I believe in what has been written.
slyjackal38 slyjackal38 Newcomer
2 messages
joined Jan 2008
#1627 ·
Melissa Castillo said:2 Angela Wright, Melissa Kim45, brisksurfer - my mother is a very self-sufficient and calm person who avoids conflict at all costs. Everything was fine until she was diagnosed with breast cancer a month or two ago, especially since she insists on doing everything herself (we help with her lab results and such, but mostly she just needs to consult with doctors on her own). Now she is undergoing chemotherapy and often has low white blood cell counts. I am constantly nagging her to eat, and I cook only what she likes just to try to boost her immunity. Then she goes to see doctors where an appointment time means nothing, sitting in waiting rooms crowded with people dealing with current flu and lung infection trends. I don't know how, but I will have to persuade her toward some kind of compromise because seeing her exposed to everyone and everything terrifies me.
It particularly angers me that she has to ask the doctor to give her a referral for chemo 😲 good grief, who is the actual doctor there? For the first time, she almost couldn't receive her treatment because of that incompetence. Surely she isn't their first patient with this diagnosis, and I don't understand their mindset. There have been several such instances over the last few months... it is incredible how many hacks and charlatans call themselves doctors today 🙄 😠 😠

Here is one suggestion based on our experience. My grandfather underwent 9 cycles of chemotherapy during his lifetime. First monotherapy, then combination therapy.
The entire time, he took AHCC capsules and natural propolis.
His blood work was never out of range, in any area, including his white blood cell count. Perhaps others can write in if they have had similar experiences, so you might consider trying it.
Immunomax costs $60 per box, but for critically ill patients, one box lasts only 1 day. It contains 20 capsules; taken daily in 3 doses, that is 6 capsules per dose, totaling 18 pieces. Natural propolis should be taken at least 2x2 times daily.
Shiitake and maitake mushrooms in AHCC capsules are proven to reduce or slow the growth of metastases by stimulating the production of T cells and leukocytes.
Natural propolis is a powerful antioxidant and a very effective immunostimulant.
Well, please think about it.
Regards and good luck, please write back as the situation develops.
Edward Bailey6 Edward Bailey6 Newcomer
2 messages
joined Aug 2008
#1628 ·
My father-in-law lost his fight with cancer😢..he passed away last week..😢It started with stomach pains—we rushed him to the hospital in the morning and he was gone by the afternoon. At least he didn't suffer too much. He had actually been so cheerful these last few days, eating well and even putting on some weight... and then just like that..
Hang in there, everyone. I really hope you guys win your battles soon!! Best.
Susan Ruiz76 Susan Ruiz76 Active Member
51 messages
joined Aug 2012
#1629 ·
slyjackal38 said:Here is a suggestion based on what we went through. My uncle completed 9 cycles of chemotherapy during his lifetime—starting with monotherapy and moving into combination treatments.
Throughout that entire period, he took AHCC capsules and natural propolis.
His blood work never drifted outside the normal range, not even the leukocyte counts. If anyone else has had similar experiences, please share them so others can consider this approach.
Immunomax costs $60 per box, but for patients facing severe cases, one box lasts just one day. It comes with 20 capsules; at a dose of 6 capsules split into three daily doses, you go through 18 pieces. For natural propolis, aim for at least 2x2 daily.
The shiitake and maitake mushrooms found in AHCC are proven to reduce or slow the growth of metastases by stimulating the production of T-cells and leukocytes.
Natural propolis acts as a potent antioxidant and an excellent immune stimulant.
Anyway, think about it.
Regards and good luck; keep us posted on how things develop.

My husband finished 5 cycles of Cisplatin + Vepezid back in July/August of last year, and about fifteen days ago, he started his second cycle of Taxol. His blood work has also remained remarkably strong—I was reviewing his old lab results tonight (we’re prepping for a follow-up next week)—and his WBC, platelets, and immunity factors have stayed consistently within the normal limits. He didn't take Immunomax (it was too expensive for us since we were paying for Tarceva), but he never missed a single day of taking Noni (at least 1 dcl daily) and beta Glucan 1,3 D (two doses a day). It seems that combo "clicked" for him. He spent a lot of time outdoors walking, and we made sure he ate plenty of fruits and vegetables.
Of course, he still ate bacon and onions because that’s what he loves. We didn't deprive him of anything he enjoyed before the diagnosis, so his weight has remained stable throughout. I suspect a lot of this comes down to the individual.
Best wishes to everyone!🙂
steelfalcon15 steelfalcon15 Member
10 messages
joined Jan 2009
#1630 ·
Angela Wright said:Based on what I've just read... it looks like my mom's condition is hitting its peak right now.😢

🙂 🙂

Angela Wright said:Is your mom taking anything specific to help boost her immune system?

She’s been taking ProSure lately—though, before that, she was cycling through all sorts of different immune support supplements (all based on what her doctor suggested, of course)...

Angela Wright said:Still, if I were in your shoes—and I truly mean this—I’d suggest gathering every single one of your mom's medical records and taking her to see an independent oncologist for a second opinion. It might feel like a lot of extra legwork, but sometimes a fresh set of eyes is exactly what you need to feel certain about the path forward.

It’s been a struggle trying to get anyone in Miami to take this seriously—these are the results from the breast cancer team over at the Mayo Clinic—and honestly, I feel like my only hope might be finding someone in Washington, D.C. That’s why I’m posting here, really... I'm just hoping that maybe an expert might stumble upon this forum and offer some kind of useful advice on what our next move should be.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1631 ·
steelfalcon15 said:🙂 🙂

She’s currently taking ProSure, and before that, she was on various immune supplements (all based on her doctor's recommendations)...

It's tough to find anyone helpful in Miami (these results came from the breast specialist team at the Miami Mayo Clinic), maybe only in Washington, D.C. That’s why I’m posting here—hoping an expert might see this and offer some actual, useful advice on what to do next...

ProSure is basically a nutritional shake designed to replace a meal with its specific ingredients.
I'm talking about the kinds of supplements doctors usually dismiss as a waste of money, even though people using them often see the exact opposite result...
I mean things like the stuff from the Immunal, beta Glucan, Alice, Noni, and natural propolis teams (I personally swear by the propolis)—and so on. We've discussed this all here before, just look it up.

As for private oncology clinics in Miami, I managed to track one down through a quick search:

ONCOLOGY CLINIC Dr. Danica Tomic, Specialist
Address: 3 Bihaćka St, 33100 Miami
Phone: 305-486-321

There is absolutely no need to drag her all the way to Washington, D.C. just for a second opinion. Don't put your mom through unnecessary stress.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1632 ·
Kimberly Bishop91 said:My father-in-law lost his fight with cancer😢...he passed away last week..😢it started with stomach pain, we rushed him to the hospital in the morning and he was gone by the afternoon. At least he didn't suffer too much. He was actually so upbeat during those last few days—had his appetite back and even put on some weight... and then, out of nowhere..
Hang in there, everyone. I truly hope you all win your battles soon!! Best,

Kimberly Bishop91, please accept my deepest condolences.😢
Edward Bailey6 Edward Bailey6 Newcomer
2 messages
joined Aug 2008
#1633 ·
Angela Wright said:Kimberly Bishop91, I am so incredibly sorry for your loss.😢

Thanks.
Zachary Howard2 Zachary Howard2 Newcomer
6 messages
joined Jan 2009
#1634 ·
Kimberly Bishop91 said:My father-in-law lost his battle with cancer😢...he passed away last week..😢It started with stomach pain, we got him to the hospital in the morning and he was gone by the afternoon. At least he didn't suffer too much. He had actually been such a bright spot lately—so cheerful during those last few days, even regained some weight and his appetite... then, just like that..
Hang in there, everyone. I truly hope you all win your battles soon. Best regards.

Please accept my deepest condolences.😢

My sincere sympathies go out to slyjackal38 as well.😢
slyjackal38 slyjackal38 Newcomer
2 messages
joined Jan 2008
#1635 ·
Kimberly Bishop91 said:My father-in-law lost his battle with cancer😢...he passed away last week..😢It started with stomach pain, we got him to the hospital in the morning and he was gone by that afternoon. At least he didn't suffer much. He was actually quite cheerful during those last few days, had an appetite, and even gained some weight... and then suddenly..
Stay strong, everyone. I truly hope you all win your battles soon. Best regards.

I am so sorry for your loss. About 15 days ago, I went through the same thing with my uncle.
Edward Bailey6 Edward Bailey6 Newcomer
2 messages
joined Aug 2008
#1636 ·
Amanda Miller69;18335840 said:😢

Thanks, Amanda Miller69.
Edward Bailey6 Edward Bailey6 Newcomer
2 messages
joined Aug 2008
#1637 ·
slyjackal38 said:So sorry. I went through the exact same thing with my dog about two weeks ago.

Thanks. And I'm really sorry about your dog, too. I guess they're both in a better place now—my father-in-law included.
Roger Hall15 Roger Hall15 Active Member
107 messages
joined Jul 2003
#1638 ·
Kimberly Bishop91, I am so incredibly sorry for your loss.
steelfalcon15 steelfalcon15 Member
10 messages
joined Jan 2009
#1639 ·
Kimberly Bishop91 and slyjackal38—please accept my deepest sympathies. I truly hope that one day these kinds of illnesses can be treated just like the flu—maybe with a single course of tablets (or something similar)...

Angela Wright said:I’m talking about supplements that doctors usually don't recommend because they consider them a waste of money...

She’s currently taking colostrum and propolis... we'll definitely look into those other immune-boosting options you mentioned... thanks for the advice!

Angela Wright said:Regarding private oncology clinics in Miami...
... it isn't strictly necessary to travel to Washington, D.C. just for a second opinion. Don't put your mom through unnecessary stress if you don't have to.

My mom has already visited two private practices in Miami, and honestly, she hasn't learned anything new or particularly smarter from them. I really hate the idea of dragging her around, but she's willing to go (and I'm more than happy to drive her) to NYC if it's what needs to happen.
Edward Bailey6 Edward Bailey6 Newcomer
2 messages
joined Aug 2008
#1640 ·
Melissa Kim45 said:Kimberly Bishop91, I'm so sorry for your loss.

Thanks, Melissa Kim45.
steelfalcon15Thanks. I’m really hoping we get to a point soon where this is treated like the common flu—just something you shake off. Maybe one day we'll finally put an end to this disease for good.
I just want everyone to beat this nasty disease—honestly. Don't lose hope or your faith. Just stay strong.

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