Support resources for families dealing with cancer and other serious illnesses

Listen, Lisa White54, I was actually sitting here thinking about you the other day... hang in there, okay? Don't let the fear take over, because honestly, fear is your biggest enemy right now. You’ve been through hell and back before, and you’ll get through this too—just take things one slow step at a time. This was a massive procedure and what he went through was incredibly traumatic; recovery isn't an overnight thing, it takes real time. Once he's ready, he'll probably head down to somewhere like Palm Springs to recuperate, and they’ll have him patched up and feeling like himself again, so don't worry. Everything he's feeling right now is just a standard part of recovering from a surgery of this scale. He’s going to be fine.

He finally made it home. Now we just pray this whole ordeal passes without leaving any lasting damage... If he could just stop coughing—and man, that cough is brutal and constant—things would be a hell of a lot easier. My biggest fear is that all this sickness turns into something more serious. We’re fighting through it, though. Not backing down. Just taking it one day at a time, looking toward tomorrow.

Hey everyone.

Hi everyone, I’m new to the forum. I’ve been reading through the posts here—all the sadness, the struggles, and the incredible bravery... I just wanted to say congratulations to everyone and tell you how much I truly admire you all. Honestly, I’m feeling a bit drained, and I find myself constantly wondering if there's more I can do for my mom. She was recently diagnosed with multiple myeloma—a cancer of the plasma cells. Her plasma cell count is about 10-12% higher than normal, and unfortunately, it has spread to her bones, even though her protein levels and blood work look okay for now. About 40 days ago, she ended up hospitalized due to a pathological fracture in her spine. She’s already completed five rounds of radiation, and this Monday, she started chemotherapy, which should consist of three cycles before she moves on to an autologous stem cell transplant. She’s bedridden right now and unable to move because the tumor has essentially compromised her vertebrae. The public hospital wouldn't perform the surgery she needs, so I managed to find a private clinic where they should be able to operate on her spine in about ten days. My hope is that it will at least allow her to walk again, though the doctors warned us the surgery is extremely complex given the tumor's location. They might discharge her from the state hospital the day after tomorrow. Mom is holding up well. The doctors won't give us a definitive prognosis, but they did mention that with modern medicine, people can live with this condition for decades... Mom is 59.

A few people have suggested I look into alternative therapies, but I just don't feel comfortable taking on that kind of responsibility. Some friends keep insisting that she needs to boost her system with homeopathic remedies and immune support. However, the staff at the hospital aren't really on board with that; they actually mentioned it could be contraindicated with her chemotherapy. I’m feeling quite conflicted. It seems logical to put my full trust in the medical team, especially since she has already begun chemo. But then again, some days the doctors are wonderful and willing to talk, and other days they seem completely unavailable or dismissive. Today is definitely one of those difficult days, and it's weighing heavily on me. Does anyone have any sensible advice? Thank you all so much!

Dear Dina,
I actually registered on the Forum just because of you, though I’ve been lurking in this specific thread for quite a while now. I’m not sure where you’re located or what kind of medical care you have access to, but my mom battled multiple myeloma for two years. For the longest time, her labs looked more or less fine—until the disease just went rogue, and she was gone within twenty days. It happened so fast. If you need a recommendation, I can't suggest the hematology department at Mercury enough. Honestly, all the doctors there are wonderful and genuinely kind. They actually have the patience to deal with both the patients and their families, which is a rare thing. I wouldn't dream of suggesting any alternative treatments without first consulting a hematologist. I’d also highly recommend checking out the website for the European Multiple Myeloma Association—Myeloma Euronet. If you’re comfortable with English or German, you’ll find a massive amount of helpful info there. It might also be worth getting in touch with the leukemia and lymphoma association in Washington, D.C. (that last one actually helped my mom more than it helped me). Sending you so much strength and patience.

I’m new here, and unfortunately, I’m not joining because I want to be... I'm here because of the fight we're all stuck in. My dad passed away three years ago from colon cancer that had already spread... after about two years of fighting it, he was gone. And now... my mom found out she has the exact same thing in her colon. She had surgery "in time," and they didn't do any chemo right after the operation back then, but now, just in time for Christmas, she found out there are metastases in her liver. They might be able to operate if it hasn't spread anywhere else yet, so she’s headed for a PET-CT now. We're all losing our minds waiting for the results... Mom is 54, and Dad was only 51 when he passed. ;(😢

Maria Rogers5 said:I’m new to this Forum, though unfortunately not because I’m fighting this myself... my father passed away three years ago from colon cancer that had already metastasized... after about two years of fighting, he was gone. And now... my mom found out two years ago she had a tumor in her colon too. It was operated on "in time," and back then, she didn't get any chemo after the surgery. Now, just in time for Christmas, she discovered metastases in her liver. They might be operable if it hasn't spread elsewhere, so she’s been sent for a PET-CT scan. We’re all losing our minds waiting for the results... Mom is 54, and Dad passed at 51. ;(😢

I am so incredibly sorry. 😢 Unfortunately, it only takes one single lingering malignant cell to trigger a metastasis somewhere else. What is certain is that Mom will definitely be undergoing chemotherapy this time around. Hang in there; you need to stay brave, positive, and determined for her. You’ll have to tackle things one step at a time as they unfold—try not to let the drama overwhelm you. Given her diagnosis, this kind of situation is something that could have been expected; it happens. I truly hope you can rise above these facts and fight bravely without letting fear take over.
a.
Edit: I don't know how old you are, but you really need to watch your own colon health because you're at risk. You likely inherited those genes, along with the dietary habits and lifestyle of your parents. Talk to your doctor about it and ask about regular occult blood testing, which you'll probably need to do periodically, and expect a colonoscopy, most likely around age forty.

I have a question, though I’m not entirely sure if this is the right thread or if there's a more specific one for this.

My grandfather is dealing with metastatic prostate cancer. He’s already been through surgery and chemo, but it’s come back. His markers are almost certainly pointing toward cancer—I don't have the exact numbers on hand, but his levels are somewhere around 300 compared to the usual 6. The catch is that his doctor won't prescribe any treatment without a biopsy first. The problem is, given his current state and age, the doctor actually admitted that a biopsy might cause more harm than good. He even mentioned that if it were his own father, he’d want to skip straight to the therapy. We tried bringing this up at a medical board meeting to see if we could just provide a signed, notarized consent form from the patient or his guardian instead, but they turned us down.

Is there any other way around this, or is a biopsy basically unavoidable?

Where exactly are the metastases located?

Generally speaking—unless they happen to be in the brain—it is possible to obtain a tissue sample via an ultrasound-guided or CT-guided needle biopsy. This means you can secure a pathology or cytology report to confirm the presence of metastases without needing to undergo surgery, right?

So, if I'm reading this right, Zele is specifically talking about the prostate? 🤔

But honestly, I’ve heard this through so many layers of hearsay—my mom tells me, her sister tells her, and then the doctor tells the sister—so who knows how much gets twisted along the way? 🤔

bluemason3 said:If I’m reading this right, Zele is talking about the prostate? 🤔

But honestly, that's just hearsay at this point—it goes from my aunt to her sister, then the sister tells the doctor—so who knows how much the story has been twisted along the way? 🤔

If we’re strictly talking about the prostate, I truly don't get why everyone is making such a massive scene over it. My late uncle lived with prostate issues for over 20 years; Dr. Trask at Vineyard Hospital would just perform surgery to clear everything out whenever things flared up, and he’d take some chemotherapy drugs. He lived to be 94 and eventually passed away from old age. I fail to see how managing this could have been any simpler twenty years ago than it is today.

Maria Rogers5 said:I'm new to this forum—unfortunately, not because I want to be, but because I'm fighting this same battle... my father passed away three years ago from colon cancer that had metastasized... after about two years of fighting, he was gone. And now.... my mother discovered a colon tumor two years ago, which was operated on "in time," and she didn't receive any chemo after the surgery back then. Now, for Christmas, she found out there are metastases in her liver, which could potentially be operated on if they haven't spread anywhere else in her body. She's undergoing a PET-CT right now; we're all losing our minds waiting for the results... Mom is 54, and Dad passed at 51. ;(😢

It would be helpful to provide more details.
Primarily because the cancer appeared at a relatively young age.
As for your situation, you absolutely need to discuss this with a GP or an Internist (depending on how old you are). It might even be worth looking into American inflammatory bowel diseases or familial adenomatous polyposis.

bluemason3 said:I have a question, though I'm not sure if this is the right thread or if there's something more specific.

My grandfather has metastatic prostate cancer (he's already had surgeries and chemo, and it came back). His markers almost certainly point to cancer (I don't have exact figures right now, but the ratio is something like 300 compared to the normal 6). However, the doctor won't prescribe therapy without a biopsy, even though in his current state and given his age, the biopsy might cause more harm than good (the doctor himself said he’d start therapy immediately if it were his own father). They went to a medical board meeting to propose allowing a signed/notarized consent from the patient or guardian, but it was rejected.

Is there any other option, or is a biopsy unavoidable?

bluemason3 said:If I understood correctly, they specifically want the prostate? 🤔

But I heard that through the grapevine (my mom told me, who told my aunt, who told the doctor), so who knows what got twisted along the way? 🤔

Blondano is a massive issue, generally speaking.
But if this really is about the prostate, I don't see why there's such a huge drama surrounding it, unless there are underlying health issues—and even then, it can usually be handled.
To give any meaningful advice, you need to provide data, like the urologist's findings, PSA levels, etc.
Possibly, you'll need to check for bone metastases (via scintigraphy) if the PSA is extremely high, say 100.

Dear Hannah Williams51,
I wanted to send my deepest condolences for your loss; I can truly empathize with everything you’ve been through and are still navigating. More importantly, thank you so much for sharing all that helpful information—it really means a lot to us.
We are originally from the Miami area, and after some initial tests there, my mother was transferred to Washington, D.C., specifically to the Mayo Clinic, first under neurosurgery and then over to hematology once the biopsy results came back. She finished her first round of chemotherapy this past Friday, and she’s being discharged tomorrow. She’ll complete the remaining rounds back home in Miami, and then, God willing, if all goes well, she will head back to Washington, D.C. for an autologous stem cell transplant at the same facility. Her Multiple Myeloma is concentrated in her bones, affecting about 30% of her bone marrow, though her blood counts remain steady.
Regarding alternative options, have you happened to hear anything about GNLD products or dietary supplements? A few people have been encouraging me to look into them. The hematologists at the Mayo Clinic tend to be quite skeptical regarding alternative medicine, which makes it difficult to have a meaningful conversation with them on the subject. If you happen to know a hematologist who might be open to discussing these things, please let me know. I also plan to reach out to all the institutions you mentioned. We are holding onto hope for the best possible outcome. The doctors say there is reason to be optimistic. I was wondering, what were you told at the start and during the treatment process? Did your mother undergo chemotherapy and an autotransplantation?
Thank you so much for everything.

Edward Thompson11, Multiple myeloma is actually pretty similar to leukemia. You aren't looking at a solid tumor that can just be cut out via surgery; instead, it’s a blood cell disorder that essentially starts eating away at the bone from the inside. Here in the US, there are three main treatment paths available, and the doctors will sit down and pick the best route for your mom. I definitely suggest checking out the Myeloma Network website to get a handle on what you're all facing. Honestly, having that roadmap made things a lot easier for me. If you ever need help translating any medical jargon, feel free to reach out. Also, under American law, you have every right to seek a second opinion—I can't recommend Dr. Radic at Bank of America enough. She might come off a bit blunt or old-school at first—she doesn't sugarcoat anything and she isn't one for pity—but she gives you the cold, hard truth. That kind of directness was exactly what I needed. It beats being fed a bunch of false hope.

Edward Thompson11 said:Hi everyone, I'm new to this forum. I've been reading through all the posts—all the sadness, the battles, the sheer courage... I honestly just want to say my respect to everyone here. I'm reaching my breaking point, and I can't stop wondering if there's more I can do for my mom. She's been diagnosed with Multiple Myeloma—it's a plasma cell cancer. Her plasma cells are about 10-12% higher than they should be, and they've spread to her bones, even though her protein levels and blood work look okay. About 40 days ago, she ended up hospitalized because of a pathological fracture in her spine. She’s already finished five rounds of radiation, and this Monday, she started chemotherapy, which is supposed to run for three cycles before she moves on to an autologous stem cell transplant. She’s bedridden right now; she can't move at all because the tumor has basically destroyed her vertebrae. The public hospital wouldn't agree to surgery, so I tracked down a private clinic where they should be able to perform spinal surgery in about ten days. If it works, she might finally be able to walk again, though the doctors warned it's incredibly risky given where the tumor is located. They might discharge her from the state hospital the day after tomorrow. Mom is holding up well. As for the prognosis? They won't give me any guarantees, but they did say that people can live with this disease for decades... Mom is 59.

Some people have tried to steer me toward "alternative" routes, but I just couldn't bring myself to take on that kind of responsibility. A few friends are insisting that Mom needs to boost her system with homeopathic remedies and immune boosters. The doctors at the hospital aren't having it; they actually mentioned that doing stuff like that could be contraindicated with the chemo. I'm stuck. It feels logical to trust the medical professionals, especially since the chemo has already started. But then again, sometimes they're willing to sit and talk to you, and other times they act like you don't even exist. Today is definitely one of those "don't bother them" days, and it's incredibly hard. Does anyone have any actual, sensible advice? Thank you all so much!

Honestly, I really want to know how much these "friends" actually understand about Multiple Myeloma, and I'm not talking about some half-baked thing they skimmed on Google.

I am in total agreement with vividsailor7 on this one. Maybe I’m just an idealist at heart, but my daughter—who’s hitting her 20th birthday soon—is living a completely normal life, just like any other young adult, and she owes that entirely to American doctors and our healthcare system (even if it definitely has its flaws and plenty of room for improvement). It’s been eye-opening seeing her peers, whose moms spent all their time trashing doctors and putting their faith in herbalists, homeopaths, and all that nonsense, end up being rushed into the ICU at the very last second. Look, doctors spent five years in med school followed by grueling residencies and specializations... you aren't going to convince me they don't know what they're doing! Alternative medicine might have its place, but only if a real doctor agrees,

I have to say, the hematology team at Mercury is top-notch. Specifically Peter, though honestly, the whole crew deserves a shout-out.

There’s an elderly man who’s been their patient for over 20 years; he wouldn't even be here if it weren't for them. They do these incredibly thorough screenings before starting any treatment, hold intense consultations, and they take the time to patiently explain everything to him and to us. I still vividly remember Dr. Martin, who spent a solid 20 minutes walking me through exactly why certain medications were being prescribed when my grandfather was being discharged. Later on, whenever we had questions, I’d give them a call, and they always made time to answer.

So, after nearly three months and four rounds of chemo, my grandfather is subjectively doing much better—which is saying something, considering he’s 85 and battling aggressive Burkitt lymphoma along with five or six other hematological issues. His lymph nodes have shrunk, and his blood work is almost back within normal ranges (he’s still dealing with some mild anemia and immunoglobulinemia). Every three weeks at his check-ups, they tweak his dosages based on the latest results. He’s also slowly tapering off the corticosteroids following their specific instructions. Even though Peter isn't officially overseeing his case anymore, she still checks in on him every time he comes into the outpatient clinic for a check-up or chemo to go over his labs. For someone fighting this kind of illness, and for his family, those small gestures mean everything.

Edward Thompson11 said:Some people have been pushing alternative routes on me, but I didn't feel comfortable taking on that kind of responsibility. A few friends suggest my mom needs to bolster her system with homeopathic remedies and immune boosters. The hospital staff isn't exactly on board with that; they actually say it could be contraindicated with chemotherapy. I'm stuck. It seems logical to trust the doctors, especially since she's already started chemo. But sometimes they're open to talking, and other times they won't even give you the time of day. Today is definitely the latter, and it's tough. Does anyone have any sensible advice? Thanks everyone!

Edward Thompson11 said:Regarding alternatives, have you heard anything about GNLD products or supplements? Someone is nudging me toward them. The Hematologists at Bank of America are skeptical of alternative medicine, so it’s hard to get into a deep discussion with them about it.

Ma'am,

Please exercise extreme caution with any preparations, including herbal ones. It is an absolute fact that certain supplements can interact with the medications prescribed by physicians. You must inform the medical team about every single thing your mother is taking or plans to take.

Certain alternative products are outright dangerous—even toxic—and you should steer clear entirely. Specifically, stay away from things like MMS drops, colloidal silver, or "Vitamin B17" preparations. These substances are hazardous; there are documented cases of fatal poisoning linked to them.

On the other hand, we have homeopathy. These are essentially sugar pills containing substances diluted to such an extent that they possess no efficacy. No credible scientific study has ever demonstrated their effectiveness. As a former moderator once aptly put it, they are nothing more than a drain on your wallet (Endymion17).

As for herbal supplements or "immune boosters," you must consult the Hematologists at Bank of America. Their skepticism is justified, but at the very least, let them confirm that a specific supplement won't cause harm, even if its benefits aren't proven.

Best regards. 🙂

vividsailor7 said:It would be helpful to have more details.
Mainly because the cancer showed up at a relatively young age.
As for you, you definitely need to discuss this with your primary care doctor (depending on how old you are). It might also be worth considering American inflammatory bowel disease or familial polyposis.

Blondano is a massive issue, generally speaking.
But if we are actually talking about the prostate, I don't see why there's so much drama, unless there's a secondary condition involved—though even then, it can usually be managed.
To give any meaningful advice, I'd need specifics, like the urologist's findings, PSA levels, etc.
You might also need to check for bone metastases via bone scan if the PSA is extremely high, say 100.

I've tracked down my last two sets of results.

There was already melanoma on the skin, which was treated with surgery, chemo, and radiation about three years ago. I also had prostate surgery twenty years back.

Results from month 8:

379 (also with high alkaline phosphatase). There were heart complications too—decompensation occurred.

Lab work:
WBC 3.8
RBC 2.99
Hb 89
Hct (0.271)
Sed rate 70
PLT 107
Urea 18.2
Creatinine (assuming, the label isn't clear on the scan): 147

(I won't list everything that's within normal range)

Diagnosis: melanoma mlg. reg. dorsi lat. sin. post-op and chemo.
Post-op status for prostate adenoma.

Bone scan: diffuse increased uptake in the shoulder blades, spine, ribs, pelvis, and the third of the tibial shafts.

Medications:
Transtec, Nebilet, Fursemid, Kalinor, Monopril, Controloc, Zalidar pp

-------------
Results from month 12 (most recent):

Diagnosis : C61 - Malignant prostate neoplasm

PSA 320 pass 320 AF 2172

I don't have the full lab report, but here are the highlights:
Creatinine: 178
Urea 17.0
HB: 0.86
Htc: 0.27
Coagulation profile PV 0.74 INR 1.16

The consultation meeting is deciding whether or not to go through with a needle biopsy.

----

The point is, the results make it pretty obvious what we're dealing with, but even though he thinks the biopsy might cause more harm than good, he can't follow protocol to prescribe further medication without one.

Thank you all so much for responding to my posts; you truly are wonderful people.

I’m currently navigating a bit of a situation. My mom finished her first round of chemotherapy this past Friday (doxo 15 mg, vcr 0.5 mg, using four half-liter bags) and she is now taking 40 mg of dexamethasone daily for four days. She’ll repeat that next week, and then at the end of the month, she starts her next round of chemo. Generally, she’s feeling quite good, but we ran into a complication during the infusion. When they were setting up the IV, the vein actually ruptured, and because the medication is so potent, some leaked into the surrounding tissue. Now, she has the early signs of thrombosis in her arm. Her primary care physician stopped by today, and for now, the advice has just been to use compresses and take pain medication—though I’m honestly not sure how much that will actually help. Does anyone, perhaps vividsailor7, have an idea of how serious this might be? The tricky part is that Mom is practically immobile right now due to a fractured sacrum, so the doctor can only see her if we take her through the ER. Should we insist on having her seen by her Hematologist, or should we wait a little longer to see if the issue resolves itself? She isn't in intense pain yet, but I really don't want to wait until things escalate or until there's a risk of tissue necrosis spreading.

Regarding alternative remedies, I’ve been doing some research, though I’m being very cautious. Right now, she’s only drinking aloe vera juice, which I hope won't cause any issues. For her stomach, she takes ginger and mint tea as needed. She also picked up an E. coli infection recently, so I bought her a specific herbal tea blend for that purpose, though she hasn't started it yet since she is currently on Klavocin. I’ve also gathered some 100% natural apple and quince juices made from wild, organic, untreated fruit, along with some pure chestnut honey and other bee products like honey blends, royal jelly, pollen, and honey syrup. She hasn't started those yet, so if anyone has any insights or opinions, I would be so grateful.

Thank you all so much for your kindness and for all the advice you've shared; you have helped me more than you know.

Here I am again. 🙄
It isn't actually about me, it's my mother.
Exactly 25 years ago, she had a breast removed due to carcinoma.
She has always been diligent about her check-ups, including this year. This past Monday, she came home with her test results, called me immediately, and told me she has to undergo surgery.
I scribbled the diagnosis down on a scrap of paper, but I can't seem to find it anywhere now. 🙄
Basically, the Latin terminology refers to breast cancer (I did a quick search online), and the suffix—if I recall correctly—was something like III a-a.
I am assuming those Roman numerals indicate the stage.
So, the timeline was: Monday, results arrived; Tuesday, she was hospitalized; Wednesday, pre-op prep; and today, the surgery took place around 2:00 PM. By 5:30 PM, she called me sounding quite cheerful, saying they had successfully removed that little lump. Honestly, the brevity of the whole procedure leaves me feeling a bit confused. 🤷
The surgeon actually asked her why she waited so long, since she had felt the lump a few months back. She explained she’s been preoccupied with other health issues (which is absolutely true). 😢
Am I hoping for a good outcome in vain?

For those who might remember me, I should mention that there hasn't been a recurrence since 2009, and currently, I am dealing with the side effects from brain radiation. I don't have much trouble with the partial epilepsy because I'm on the right medications. However, the radiation significantly damaged my hearing—it's an 81% loss, which resulted in a 50% disability rating.
My current issue is a perforated eardrum. It's hard to say with absolute certainty if it's a direct consequence of the radiation, but it has caused balance issues, occasionally resulting in mild dizziness and nausea. On top of all that, I've been struggling with a severe throat infection, similar to one I had back in November, though perhaps slightly less intense. I am currently waiting on a specific test ordered by my ENT specialist.
Aside from those things, I don't really have any other major problems. 😍