Posts by Susan Ruiz76

A young woman—a single mother raising a sixteen-year-old—underwent breast surgery three years ago. This year alone, she’s had two procedures on her jaw and neck due to carcinoma. She has radiation scheduled for next week in Chicago, because here in Indianapolis, you can't get an appointment anytime soon. She feels absolutely terrible, and I honestly don't know how she's going to manage the train ride. She has no one to help her, and since she's on social assistance, paying someone for a ride isn't an option. I’m reaching out to anyone who might know: is she eligible for medical transport with an escort? Keep in mind, she isn't being admitted for an inpatient stay; she actually had to find her own lodging, which she managed to do thanks to the kindness of a wonderful woman.

I have a feeling my nails are going to be completely destroyed this September🙂🙂(thanks to nasty psoriasis), and I’m hoping they’ll use general anesthesia. Am I thinking about this correctly? Will the procedure happen at the dermatology department in St. Louis where I'm being admitted, or will it be handled by surgery over at the Mayo Clinic?🤷

Thanks in advance for any insight!

And honestly, I’d just ask my doctors directly, but they’re all out on vacation right now...

And yes, if he's dealing with pain—let him take Zaldiar if it actually helps. And absolutely do not skip the Tarceva—and of course, make sure you stick strictly to the prescribed schedule!

Carol Chase31 said:Hi everyone,
I tried searching for info on Tarceva, which led me here. My dad has been on it for 15 days now and he was doing incredibly well until two days ago. His appetite came back, the leg pain and coughing stopped, and his mood actually improved—he hasn't been this upbeat since this whole ordeal started over a year ago.
But now, he has this rash on his face, nose, and scalp, and it’s really bothering him.
Over the last two days, the scabs have started drying out, and the itching has gotten so intense he can't sleep. He took some Zaldiar, which helped stop the itching, but now he's dealing with nausea, can't eat, and just feels terrible.
To make matters worse, the doctor who is "always" available hasn't returned my calls in two days.
Can anyone recommend something for the itching and nausea that isn't another new medication? :-(
I'd read more myself, but I'm tired of paying for every second post when I'm already at my breaking point.
Thanks.

My husband went through quite a bit of Tarceva himself (8 boxes), so I can tell you that what you're describing—those skin changes like peeling and breakouts—is actually a good sign. Our oncologist explained that it shows the body is responding to the Tarceva. My advice? Head to a pharmacy and explain the situation to the pharmacist; they can whip up a custom lotion for you. If those breakouts look inflamed, they might include an antibiotic to prevent anything serious like an infection from developing. That's how we handled it. If the pharmacist won't do it, a primary care doctor or a dermatologist can write you a prescription for something similar. Oncologists usually don't touch side-effect management like that. Most of the side effects (the nausea, loss of appetite, and pretty brutal diarrhea) tend to taper off after about a month. I really hope your dad can push through this and continue the treatment without too much more trouble. Good luck. 🙂

casualrider21 said:The 25 mg patch hasn't done much for Dad. 🤷
On top of that, he’s on a regular regimen of Tramal 50 mg capsules three times a day. However, without the Tramal injections, the pain just won't let up.
We're applying the 50 mg patch tonight. I'm hoping it actually makes a difference.😕

Of course you have every right to feel terrible. How could you not? You can choose to show it or hide it, but it's part of who you are right now—it's deep in your soul, and it's completely normal, even expected, given everything going on.

Regardless, hang in there. Keep your chin up, and try to believe that positive results and better days are coming.😘

Thank you,🙏
to this forum and for the declarative support—it's been "all for one and one for all." You were the only person to react to my desperate post in three days and offer me any real support. casualrider21, I wish the best for you, for your father, and for everyone else fighting these battles. All the best.
As for the rest, goodbye. When you need someone to point you toward something useful, or when you have to spend all day on this Forum arguing about potential alternatives, everyone shows up. But when a real, concrete, human problem arises? No one is here.

So, goodbye to this entire Forum, tonight, while yet another person—among so many others—is fighting just to take their next breath.

casualrider21 said:The day before yesterday, I applied my dad's first Duragesic patch (25 mg/h).
We were both just waiting for it to kick in because the pain was absolutely brutal.
And then, those famous 24 hours pass while we wait for the relief to start...
But when it came time to change it, we realized the patch had completely peeled off.😠
Remove that, put a fresh one on. 🤷

We're giving him Tramal tablets and injections until things stabilize.

I need some information—what can and cannot be combined with these patches?

My husband is currently hospitalized. He left home using Duragesic 25, but today they switched him up to the 50 mg dose. On top of that, they have him on: Lidocaine injections (subcutaneous), Zaldiar tablets, Normabel tablets, and his chart lists Tramal injections via p.p.—so now I'm wondering if this whole combination is actually safe or not 😕, but he’s losing his mind from the pain without them (he has a lung abscess resulting from tumor tissue necrosis, which unfortunately wasn't caught immediately; antibiotic therapy started late, though we're hoping it finally works—they originally told us it was a terminal situation). I feel absolutely, devastatingly terrible—but who am I to complain when he's going through something so much worse? I don't know what to do, how to process this, or how to handle the constant ringing of the phone and the mindless comments and questions from neighbors. Honestly, I'd give anything just to sneak into the hospital, lie down next to him, and watch over him...

casualrider21 said:Seriously, enough ALREADY!!!
I’m just sitting here reading your posts.
IT’S DISGRACEFUL!

You’ve missed the mark on everything—the location, this forum, and the "audience" you're addressing. All of you, without exception.

Do you have any idea how much you're negatively impacting people who come here looking for even a shred of comfort or a kind word of support?!

My blood runs cold every single day; I don't know how much more of this pain my heart can take... and yet, here you all are, bickering over the pros and cons of conventional versus alternative medicine. Picking sides and arguing why one works and the other doesn't.

Everyone should be free to express their own opinion, support whatever they believe in, and keep their criticisms to themselves. Especially when it comes to insults.

I think life is hard enough for everyone here without us wasting time on this kind of nonsense.

Come on, bury the hatchet and let's get back to being decent to one another.👍..I hope for some positive news and better vibes.

Signing off. It seems if I wanted my grief over my husband's current condition to be trivialized, I would have stayed "on the sidelines" talking about Lung cancer. Instead, I am speaking honestly, from the heart.

Joseph Nguyen2, I think you’ve got the wrong venue for this. This i s just a tiny classifieds board, not some marketplace for people peddling "miracle cures." It’s not that mother's milk isn't beneficial, but if you actually bothered to read the archives on these forums—which clearly you haven't—you'd see we've already covered it extensively, along with countless other products targeted at desperate, terminally ill patients. Honestly, it feels incredibly disrespectful to walk into a space dedicated to genuine, life-and-death struggles and try to hawk a "universal remedy." Ugh, it's infuriating!

About ten patients at the San Francisco Mayo Clinic's Oncology Department spent five and a half hours today waiting in vain for medication arriving from Washington, D.C., just so they could receive their chemotherapy. In the end, the medicine never arrived; instead, they were simply sent home with a rescheduled appointment, offered no explanation whatsoever.

"It is absolutely unacceptable for the Oncology Department to find itself in a situation where ten patients—all scheduled three weeks in advance for chemo—are sitting in a waiting room without the very drugs they need," writes one reader who witnessed today’s unpleasant ordeal at the Oncology Department.

The patients who arrived at the hospital at 8:00 AM this morning had been scheduled for their treatment three weeks prior. Among them, she notes, are many who travel specifically to San Francisco for their sessions, waking up at 5:00 or 6:00 AM just to ensure they arrive on time, only to sit uselessly in a packed waiting room.

While waiting for the essential medication that was "supposed to arrive at any moment from Washington, D.C.," they reached 1:30 PM, at which point they were sent home without an explanation, receiving nothing but a new appointment time.

"We are in the middle of flu and virus season, when half the patients are coughing and sneezing through the hospital hallways. This is a critical factor doctors must account for; they know perfectly well that if an oncology patient falls ill, they cannot undergo chemotherapy. Every lost moment for these people is incredibly precious."

Given that chemotherapy patients are scheduled weeks in advance—giving the hospital ample time to organize logistics—this kind of conduct by a medical institution toward the terminally ill is utterly irresponsible and callous.

What actually happened? Why wasn't the necessary therapy secured, and why weren't patients notified in advance after numerous calls and hours spent on hold? Unfortunately, we were unable to get answers from the San Francisco facility. We couldn't reach a spokesperson or anyone in the department, despite several hours of trying. "Only the spokesperson can provide information, and he is currently in a board meeting," we heard repeatedly until the end of the business day, after which the mobile line diverted to a landline that just rang into the void. (Barkun)

"...my mom mentioned a medication today. She says it's quite effective, but for God's sake, it's incredibly expensive
($16000), though she couldn't recall the actual name.
Does anyone have any idea what she's talking about?"

That outrageously pricey drug is most likely Sutent. You might want to reach out to Wunderkind; she posted on this forum a while back. Her father went through six boxes of it for renal cancer with lung metastases, and if I recall correctly, she offered up half a box to anyone who might need it. She’ll be your best bet for understanding what that specific drug is used for. From what we've been hearing lately, it's on the list of medications covered by Medicare for kidney cancer. Hang in there.🙂

Dear ladies, I want to wish you all an immense amount of patience, a heart full of hope, and a long life filled with the kind of love you are bound to find. I am keeping your health in my prayers.

feralridge3 said:If I understood correctly, we are talking about a brain tumor recurrence?
I take glucan to support my immune system.
Since the surgery, I’ve had zero appetite and don't even feel hungry, but I’ve forced myself into a routine of eating at specific times, four times a day. I often have to force food down, and sometimes the very thought of food makes me nauseous.😢
My oncologist prescribed Medrol. The side effects are similar to the dexamethasone I was on for three months. That was pretty brutal for me, so when my doctor said I could take the Medrol only as needed, I stuck to that because I haven't really needed it.
I truly hope you recover and that the surgery goes smoothly.

It is good that you are forcing yourself to eat—that is a massive factor in this entire fight. If the appetite isn't there, ask your doctor to prescribe Megostat syrup. My husband kept a bottle sitting in his drawer for about six months (he read somewhere that it can cause impotence😱 and he was so demoralized by that he wouldn't even look at the stuff—but the kids and I eventually talked him into it by suggesting Megostat + Sanval, and that solved everything😍). All jokes aside, about a month ago—right around the start of radiation—he began taking 10 ml a day, and I can tell you all that he eats perfectly fine now; no refusing food or nausea whatsoever (and no side effects either😂).
Regarding the glucan, we haven't been "scammed"—since the beginning of the illness, my husband has been taking two 500 mg doses daily, and we are satisfied. We wouldn't dare stop. You have to cling to something; God forbid we don't try anything at all. We'd just tear ourselves apart.

Dear Luna, I am truly sorry to read such news, but please know that all is not lost. I hope that, despite feeling physically depleted from the scans and the chemo, your spirit remains resilient and determined—because having that mental strength is already half the battle won. I also hope you have your family by your side. If it fits within your budget, consider picking up some beta-glucan 500 mg (it runs about $223 for a box of 60 tablets). For the first month, take two a day, and then just see how you feel. Additionally, in my opinion, beet juice is vital—you can find pre-made versions, and there are some great ones out there. Many people on these forums swear by Imunnomax—apparently, it’s incredibly effective—but it is prohibitively expensive (a monthly supply would run you roughly $1833).
Still, spring is just around the corner. Make sure you keep fresh fruits and vegetables on your menu as much as possible, along with homemade soups. Keep your chin up!

My dear, if everything you’ve described is true—and there is absolutely no reason to doubt you—then you and your husband are the textbook definition of people who need a second opinion. Gather up every single scrap of paperwork, every lab result, and every scan you have. Once you've sat down for a consultation with your primary care physician, it's time to take action. If you don't get the support you need from them, pick up the phone and start seeking help. Be proactive. Reach out to the advocacy groups online and ask Dr. Jasna Radić how to navigate getting a second opinion; she is incredibly kind and responds as quickly as she can. I can't personally walk you through the specific process because we didn't need to go that route—we have a clear situation regarding one tumor and we are satisfied with the treatment protocol. But if I were in your shoes, I wouldn't hesitate for a single second. Besides, who on earth prescribes pain relief patches with a tendency for increasing dosages to treat PTSD?

Lisa White54 said:I’m confused about my husband's illness. Why won't his doctor send him for a bone scan? He's in pain, and the RTG results for his bones and spine explicitly state that a bone scan is required.
And how am I even supposed to get him scheduled for a scan? Does he need a specialist's referral?
It also doesn't make sense—if my husband is supposedly "so healthy," and the doctor claims PTSD is his only issue, then why does he feel so terrible? This isn't just psychological; this is physical pain.
Honestly, I don't know what to think. He looks perfectly fine, yet he feels awful. I'm at a loss.

Dear Rose, something isn't adding up here, though I can't quite put my finger on what. I've been watching your husband's situation closely. He had that swelling in his head during the bronchoscopies back in Smalltown, USA, and that kind of swelling usually happens when something is compressing a vein in the neck. Did they explain the cause of that in his discharge papers? Also, do you actually go into the exam room with him during follow-ups? You know, patients tend to forget half of what they want to ask, or they miss details because they aren't paying close enough attention. That's why having a companion is vital, even though I know everyone loves to act independent and says, "What do I need you for?" Usually, our loved ones insist on being alone just to spare us from hearing bad news.
I'm asking because if the radiologist specifically noted that a bone scan is mandatory, why didn't you simply ask, "Doctor, what about this finding? What is your take on this report, and will you write us a referral for a bone scan?"
It’s not too late, though. If the radiologist's report indicates a scan is necessary, your primary care physician can write the referral, and then you can call the nearest hospital to schedule an appointment. We handled that ourselves in Indianapolis. Just try it. It costs nothing, and it will lift a massive weight off your shoulders once you have the results—which, naturally, will come back clear.🙂 Greeting!

Dear Goleo, my deepest condolences go out to you and your entire family.

Susan Diaz91 said:I heard from my uncle over the phone today that they suspect my mother has a malignant lung tumor. It’s apparently located in a spot where surgery isn't an option, and they're worried it might have already metastasized.

What should I do? How am I supposed to act?

You are in a heavy situation, but perhaps not quite as dire as your mind is making it out to be. First things first: you need a definitive diagnosis. The doctors haven't even confirmed 100% that your mother has a malignancy, yet there is already talk of metastasis?😕 That isn't how the process works. Even if they do confirm the diagnosis, you should know that people don't just drop dead from this overnight anymore. With the right care and treatment, your mother will surely be there to see your baby's first steps, sharing the joys of parenting and passing down her wisdom as a grandmother. My husband was diagnosed with lung cancer back in September 2007, and as we speak, I'm heading to radiation treatments (about 50 miles in total). Naturally, one of our two sons or I always goes with him, but he still drives himself!👍
Similarly, Lisa White54's husband has been fighting this exact same battle for four years now—so, keep your chin up. Read through some posts, look into nutritional supplements to support the immune system, start getting those into her immediately, and make sure she doesn't lose too much weight. Get ready for the fight.
Take care of yourself. This struggle, which you will face alongside your mother, will ultimately refine you and reveal depths to your own character you didn't even know existed. You will also discover things about other people that you never would have believed. Be prepared, be brave, stay strong, and do not be ashamed to share your feelings with the people you love most and trust deeply.
Good luck to all three of you.🙂

Amy Hayes28, I am truly and deeply sorry to hear about the passing of your father. My heart goes out to you and your entire family.

First off, I’m glad to hear the news about these drugs being added to the coverage list, though I sincerely hope none of you ever actually need them.
From my own experience: my husband took Tarceva 150 for eight months, and my kids and I did everything humanly possible to learn the ins and outs of it. We weighed every factor: the efficacy (we knew it was mostly just extending life, and even then, not for everyone), the side effects (which are certainly not harmless), the cost (roughly $6.75 for 30 tablets), and even the fact that pharmaceutical companies often run buy-two-get-one deals. Beyond that, we held onto the hope that Tarceva would be covered because we went straight to the source at Medicare to find out. After our inquiries and pleas, they explained the registration process to us very clearly and decisively, showing us the documentation to prove that registration was underway and that it was simply a matter of time before it hit the coverage list. Unfortunately, my husband's lymph nodes began to swell, so he isn't taking Tarceva anymore (we got his last box through a hospital commission based on medical documentation). We also gathered a wealth of information from the Jedro association for lung cancer patients, which is led by a wonderful woman, Sandra Karabatić, who is always ready to talk, advise, or help whenever needed.
There hasn't been a huge crowd here on this thread to swap info regarding lung cancer, so there hasn't been much talk about Tarceva specifically, but please don't assume this is some sort of conspiracy. In America, lung cancer is one of the most common types, carrying very grim prognoses, and Tarceva is typically prescribed as a third line of defense after two previous treatments have failed.
Now, for those of us who have already cycled through three or four lines of defense and found the doors slammed shut, we start looking for alternatives. We watched Lothar very closely on "Science Frontiers." To be honest, he didn't reveal some magical new method for extending life (nor would I dare say anything about "cures"), but he didn't say anything negative, either. In his book, he simply catalogs experiences and various treatment approaches; his best advice was arguably his concept of the "contract with the tumor." In reality, once you start thinking maturely—once you really start navigating life on your own—you should sign a contract with your own body: eat healthy, exercise, get enough sleep, don't smoke, skip the alcohol, spend time outdoors, stay kind, and maintain a positive mindset. It increases your chances of never facing cancer in the first place. I don't need Lothar's book to tell me that, so I won't be buying it. We all know these things, yet we are often incredibly irresponsible with our own bodies.
And finally, let's stop arguing over whether heart cancer exists or how prevalent it is. Angela Wright and slyseal28, please don't take it personally. People truly value the work you do (I actually sent a hundred or so signatures toward your petition myself), but you have to be prepared for criticism and the occasional disapproval. Unfortunately, tolerance seems to be a waning virtue in this country and in these times.

I'm not entirely sure how viable this idea is, but you should definitely reach out to the neurosurgeons in the US about their colleagues abroad. Give them a call, lay out the situation, and just ask. It’s pretty clear you’re prepared to shoulder the surgical costs, so don't be afraid to mention that—and since their equipment is currently out of commission, they really shouldn't be withholding any information from you. If you happen to be living in a place like Chicago—where there's a solid neurosurgery department—check in with them too. Besides, they have the head of oncology, Dr. Gugić, who has traveled quite extensively; he's always looking to expand his expertise, and from what I understand, he was actually over in Stockholm last fall. He might have some insights. They likely possess more experience and specialized knowledge than we have here. Good luck.