I honestly lose my mind when I see stuff like this. It feels like they just push someone out the door because they can't handle being told the truth to their face, and then they just throw out some random, baseless statistic to shut down the conversation.
Honey, what they told you was just their assessment—a forecast that’s probably backed by some statistics, sure. But no doctor can actually predict the future with certainty. I've been through this before with my grandmother; she had stomach cancer, and the prognosis was strictly three months. Well, those three months turned into seven years of her living her life to the fullest right here with us!
Don't let them get to you, just keep moving forward with courage.
So, let's talk about ocular melanoma. Basically, melanoma happens when your melanocytes go rogue, and while most people think of them being in the skin, they actually exist in other parts of the body too—like the eye. It’s a rare form of melanoma, and it behaves quite differently from the stuff you see on your skin; it’s incredibly aggressive and tends to spread to the liver very quickly. Usually, the only way to handle it is through surgery to remove either the affected area or, in some cases, the entire eye. 😢
Honestly, everyone, this damn thing is becoming way too common. We’re seeing more and more people reaching out to us because they’ve heard through various channels that we’ve started traveling abroad for treatment, and it is truly terrifying how widespread this specific type of cancer has become. A doctor here in the US even told me that the rise in melanoma incidence has been absolutely drastic.
With summer right around the corner, we all really need to be extra careful. We did a little digging into different sunscreens and realized they aren't exactly a magic fix either—once we saw the actual list of ingredients they pack into those bottles, we decided our best bet is just to stay indoors as much as possible and only head out during the early morning or late evening. On those days when we absolutely have to be out in the heat, we'll just rely on hats, sunglasses, and long-sleeved clothing.
I know being paranoid isn't the answer, but an oncologist I spoke with in Heidelberg mentioned that I fall into a high-risk category—you know, blonde hair, light eyes, lots of freckles, and having had more than my fair share of sunburns over the years—so he strongly recommended I get a full dermatological exam. I keep putting it off, telling myself lightning won't strike the same place twice, but I definitely need to get checked out. As for the sun? I'm done with it!
jadetinker42 said:Man, I'm really looking forward to seeing some light shed on this topic soon.😕
I have a quick question for everyone; does anyone here happen to know much about those Immunomax AHCC supplements, or better yet, is anyone actually using them right now and seeing any real results?
I’ve been reading through these posts and honestly, they are just incredible. I am really curious to know when this stuff might finally be added to the Medicare formulary so we can actually get it covered with a prescription, especially since paying out of pocket for a daily dose is becoming such a massive financial burden for everyone dealing with this. $60And you really have to stick with it for three months straight.
From what I understand, they’ve already got it registered over in Mexico and Canada, so you can just get it through a standard prescription there.
Hey everyone, hang in there and take care of yourselves!
I've actually heard about them before, specifically because I spent some time reading through an American melanoma support forum where people were sharing their own success stories and positive experiences.
Since this isn't actually classified as a medication but just a dietary supplement, I have my doubts that Medicare is going to pick up the tab for it, though I suppose they might surprise us. 🤷
wanderingharbor61 said:I was wondering if anyone could share their experiences with interferon treatment, because my mom is really interested in learning more about it; we were just talking about it earlier, and I told her I'd check this forum to see what people say! Primarily, we're curious about the side effects and whether the medication is covered by Medicare. 🙂!
First off, I just want to say a huge thank you to everyone following our journey and rooting for us :-)
While I don't have any personal experience when it comes to interferon, I have spent quite a bit of time reading up on it, so I can tell you a few things:
In our experience, low-dose interferon was offered at Mayo Clinic, but they noted that we would have to cover the cost ourselves, which means it isn't typically covered under Medicare. My understanding is that Medicare generally focuses its coverage on things like chemotherapy using DTIC or potentially radiation therapy.
Generally speaking, the therapy can be administered in either high doses or low doses; if they go with the high-dose route, the treatment usually lasts about a month, whereas with the low-dose approach, the treatment spans an entire year and the patient manages their own injections at home. The reason people opt for the low-dose version is to avoid those heavy side effects associated with high dosing—things like high fevers, exhaustion, weight loss, nausea, cognitive issues, headaches, and depression. There is actually some debate over whether the low dose is truly effective, as some recent studies suggest the efficacy is basically the same as the high-dose method, though you will still find plenty of studies online that disagree with that conclusion.
In the medical community, interferon is slowly being phased out as a primary treatment for melanoma and is being replaced by something similar called Proleukin therapy. Since I am certainly no medical expert, all I can say is that both drugs function in a very similar way by stimulating the immune system. However, Proleukin has to be administered exclusively in a hospital setting because the potential side effects are much more severe than what you see with interferon, involving risks like kidney failure or even heart failure.
Anyway, that is pretty much everything I know about the subject.
slyseal28 said:It feels like we’re all dealing with the same kind of friction, where those closest to us just don't seem to get it.
I’d just add that, for me, the biggest support has actually come from people I’ve only just met or even complete strangers. The people we naturally expected to lean on have mostly just drifted away when things got tough.
But honestly, there’s no sense in wasting energy worrying about them. The world is actually full of wonderful people who are standing right by our side through all of this. I’m really looking forward to when our association raises enough funds to host a big get-together so we can all finally meet in person. Sending love to everyone!
That is such a beautiful way to put it. We were actually lucky enough to receive help from both close friends and total strangers alike. Not a single friend or family member has let me down or caused me any pain, and I feel incredibly fortunate for that. We are truly blessed with good people who go out of their way to make things easier without making a scene or bringing any negative vibes into our lives.
And finally, I have some wonderful news—today’s PET/CT scan came back clear. I’m not going to go overboard announcing a "victory" or anything like that, because I know this illness stays with us for life. I am just deeply grateful that it’s left us in peace for now, giving us a chance to focus on the baby on the way this fall.
Sending my best to everyone, and I’m fully behind slyseal28's idea that we should all get together and meet sometime soon!
shadowmason6 said:Does anyone here have experience with this, or maybe they could explain the difference between a standard CT scan and a PET/CT? I'm really wondering if there's any real point in getting a PET/CT done before surgery if a regular CT was already completed... does the PET/CT provide much more detail? Or would it be better to just hold off and save that for the follow-up after the operation?
I’m definitely not a doctor, but my understanding of it is pretty straightforward: a PET/CT scan can actually pick up malignant changes well before they ever show up on a standard CT. So, if someone is prepping for surgery, it seems a lot safer to go ahead with the PET/CT beforehand, because that way you might catch and remove potential sites that weren't visible on the initial CT but are detectable through PET imaging.
wanderingharbor61 said:Thank you so much for sharing that, 😘, because when I think back to April 2nd, I realized I knew next to nothing about this topic!
But that’s just how life goes—you just have to keep moving forward!
I was on the phone with my mom earlier tonight, and she sounds strong and is holding up well, which really lifted my spirits!
She had an appointment with the dermatologist, and they didn't find any visible lesions, but since the diagnosis is metastatic melanoma, we are currently waiting on the PET/CT results...
Sending love to everyone here, and hang in there 🙂!
When it comes to melanoma, I honestly feel that surgeons and molecular biologists play a more vital role than oncologists do. If the tumor can be surgically removed, my take is that you absolutely should go through with it. Here in the States, the Stanleys over at the Mayo Clinic are quite well-known, and they’ve actually co-authored a book on melanoma themselves. Even though they specialize in plastic surgery, they are experts at operating on metastases in the skin, subcutaneous tissue, and occasionally the lymph nodes; for anything involving the lungs, liver, or brain, you really need to reach out to a surgeon who specializes specifically in those areas. Truly, from the bottom of my heart, I hope neither my husband nor your mother will ever need anyone else!
Molecular biologists aren't doctors, obviously, but they play such a critical part in treating melanoma because they are the ones researching, experimenting, and testing new frontiers. And even though results vary for everyone and we haven't found a universal cure for this awful disease yet, I truly believe their work offers the greatest chance for recovery. In fact, I am deeply convinced of that.
Because when the oncologist you were referred to looks at you with pity and tells you there isn't much that can be done—and we all know what kind of cancer that is—that is when you have to step outside the standard paradigm and look toward things you might never have considered if the situation weren't so dire. I wrote once that if we had to face cancer, thank God it was melanoma, and thank God it doesn't involve chemotherapy, radiation, or poisoning the body. All that is left is faith, hope, and courage. Seeing how brave someone can be while facing this situation gives me strength whenever I start to lose hope or feel overwhelmed.
So, it is wonderful to hear that your mom is doing well. This disease can be beaten; I know it, and I know people who have done it. Melanoma, in particular, has a tendency toward spontaneous remission that isn't nearly as rare as you might think. It can pass ten or twenty years without a recurrence. We ourselves had five wonderful years, and I truly believe we can have twice that many again. Your mother could have those years too. Just try not to give in to despair or panic, and try to listen to the doctors—especially the oncologists—as little as possible. They simply don't have the answers that you (and we) actually need right now.
And yes, I am crossing my fingers that they find the primary tumor! Please, let me know how you scheduled the PET/CT, and most importantly, how long the wait is?
For those of you who have gone through a PET/CT scan, I was wondering what kind of paperwork you actually need to bring along, whether an oncologist's mandatory Second opinion on a specific form is required, and what the typical wait times look like these days?
Sending my best to everyone fighting this—hang in there and stay hopeful, and to your loved ones who are looking out for you, I wish you all the patience and strength in the world to get through these challenges and reach recovery together!
wanderingharbor61, I just sent you a private message—actually, two of them. Hang in there!
And I’m also jumping in with that question; if anyone has some firsthand experience dealing with PET/CT scans at the Mayo Clinic, please share how things went!
I honestly don't even know where to start with this one, but I suppose I'll just dive right in. Grace Fowler says: My dad, who just turned 55, was diagnosed with lung cancer last week. Based on the initial tests and findings we've received so far, there's a possibility that this might actually be linked to melanoma or perhaps even hepatocellular carcinoma.
Melanoma most commonly spreads to the lungs, the liver, or the brain. If that's what we're looking at with your dad, there's actually some good news regarding those specific locations—the prognosis is generally better when it reaches those areas. I’ve been spending a lot of time reading through stories on an American melanoma survivor forum, catching up on the experiences of people who have faced this exact situation and are still here with us today. Just try to hang in there and keep a positive mindset.
Things haven't really changed on our end—my husband has decided he isn't going to push for any more biopsies or having additional lymph nodes removed for the time being. For now, he’s just sticking to his regular ultrasound checkups and waiting on the PET/CT scan scheduled for May. That date will be here before we know it, and honestly, only God knows what those results are going to show, which is why I find myself praying to Him every single day.
I’m actually reaching out today because there’s a bit of news worth sharing from issue number 67 of Medical News. There is a research project happening over in Denver that involves a collaboration with Ford, all backed by funding from the European Union. This initiative has been underway for a while now, and honestly, the results they are seeing are nothing short of fascinating. They are working on electrochemotherapy, which is currently being used to treat melanoma and various skin cancers, though the hope is that they can eventually expand this to other types of carcinoma as well. Skin tumors are the most practical starting point since the method essentially works by using electrodes to deliver electrical currents directly into the tumor mass. Once those currents have destabilized the cancer cells, they follow up with targeted, local chemotherapy. As I mentioned, the outcomes are truly incredible; they saw a complete regression of treated tumors in 48% of patients, even though every single one of them was already at stage IV. Now, I should clarify that this doesn't necessarily mean a total cure, since we aren't able to treat metastases within internal organs yet—so when we talk about remission here, we are specifically referring to the regression of metastases in the skin, subcutaneous tissue, and lymph nodes. In one particular case involving a woman, she maintained remission for eight years before experiencing a recurrence, but she has since undergone treatment again and her progress is being closely monitored. When you look at the standard statistics for melanoma, what they've achieved is an unbelievable success. Personally, I am still holding out high hopes that DCVax will be successful so that we won't have to keep searching for a cure, but it sure is comforting to know that these other options are out there. I would have posted the link here, but I just can't seem to track down the latest issue of LN online anywhere.
Hey everyone, we just got back from a specialist in Germany, and the news regarding the melanoma was negative. They spent two full weeks trying to find even a single tumor cell and came up totally empty-handed. I’m assuming that counts as good news, right? Honestly, I was so incredibly relieved that I felt like running up onto my roof and screaming at the top of my lungs just to let the whole world know, even if people thought I’d lost my mind for a second. :-)
That being said, I’m realistic enough to know that one great report today doesn't automatically guarantee everything will stay perfect tomorrow. On top of that, there is some less-than-ideal news to process—the German doctors now seem to think our surgeons didn't remove the correct lymph node, despite it being identified on the ultrasound and marked with radioactive isotopes, all performed by a doctor we trust implicitly. They’re suggesting a follow-up PET/CT as soon as possible, but to be completely honest, the idea of undergoing that much radiation is pretty terrifying to me. Plus, we've been seeking testing outside our local area because we heard the systems here aren't quite as streamlined yet, which obviously means significant costs are involved. If anyone has any insight regarding the quality of PET/CT facilities here in Washington, D.C., please let me know!
I’ve said this more times than I can count, and I’ll say it again: when doctors start talking about a lack of hope or something along those lines, that is exactly when you need to dig in and fight the hardest. You have to look past their statistics and grim prognoses because those are just broad estimates based on massive data sets. Your family member isn't just some number on a spreadsheet; they are a human being, a unique individual with their own specific journey through life.
On another note, I don't know much about this specific diagnosis, but I do know a story that's very similar regarding a brain tumor. A man was told not to waste any more money or energy, basically advised to just go home and wait for the end. Instead, he went straight to his local pharmacy, spent everything he had on chemotherapy treatments—even driving all the way across the country to get them—and explored various alternative therapies without ever giving up on himself. That was two years ago. Today, he is doing great, living a full and healthy life, and he serves as a huge inspiration to us in our own struggles.
Thirdly, I'm not sure if this link has gone dead in recent research updates—http://www.braintumor.org/SurvivorSt...p_StoryID=3937—but I think it serves as a perfect example of how someone can survive even a diagnosis like this and move forward with their life.
So, my advice to all the moms out there, especially when dealing with this illness and the medical teams, is to just stay brave. I might not have a concrete answer to the specific question being asked, but I really hope I’ve helped lift everyone's spirits at least a little bit. :-)
Hi everyone, and especially to those who have been keeping us in their thoughts :-)
It’s been a little while since I last checked in, but please know I’m still here, regularly reading everything happening on the forum and staying updated on the association's news.
On our end, there's a bit of a recent update: a suspicious lymph node was surgically removed, and now we’re just playing the waiting game for the pathology report to see if it was a metastasis or not. Since the surgery happened last Thursday, I’m not expecting any news before Monday, but I have to admit that I’ve reached a point where I’m almost indifferent to what the result actually is. Whatever it may be, it's out now, and it's gone.
Regarding Germany, he received his second injection yesterday. He is absolutely exhausted from all the traveling, the biopsies, and the constant testing, and he told me today that he is seriously considering walking away from all of this, which honestly broke my heart. I’m really hoping it’s just one of those rough days and that he’ll wake up tomorrow feeling more ready to keep fighting.
In the meantime, I’ve had so many people reach out—old acquaintances, friends, and everyone seems to want to offer some kind of support. Even my colleagues at work and people from college have stepped up to help. It truly touched me because I had no idea that people I barely knew, or hadn't spoken to in ages, would play such a significant role in our struggle. I really am pleasantly surprised by the outpouring of kindness.
And on a much brighter note, I went in for an ultrasound and Down syndrome testing yesterday, and the baby passed both tests with flying colors :-) :-) I’m really hoping that this little life growing inside me will be the ultimate motivation for the future dad to not give up when things get heavy.
That’s all for my update for now—sending you all so many positive thoughts and sending that same energy right back to you!
Alex White6 said:thanks everyone for all the support🙂 she’s incredibly strong; she’s fighting this with everything she has, her spirit hasn't broken, and she refuses to just surrender to the illness. I know the situation is heavy, and none of the doctors have given us any reason to be optimistic, but I just can't stop hoping and putting my faith in God. I'm actually terrified of the idea of losing hope. Just yesterday, we were laughing together, I was giving her foot massages, and we were walking through the hospital halls. I simply cannot let go. I refuse to spiral into despair or drown in sadness because, honestly, I feel like that's just a waste of precious time. I'm going to fight right alongside her.
My grandmother was diagnosed with late-stage stomach cancer, and the doctors basically left the decision up to us regarding whether or not to proceed with surgery, since they weren't even sure if she'd make it through the procedure itself. They told us straight up that without intervention, she had about three months left, and if she even woke up after surgery, there was no telling what would happen. That was the literal reality they presented to us.
My grandma is 87 years old now, and she’s living with about a third of her original stomach left. She still heads to the bank and to church on her own, she cooks her own little micro-meals—I always tease her that she eats like a tiny little bird—and at my mom's last birthday party, she was singing her heart out well into the night.
So, please, don't tell me there's no hope, because that just isn't true. And of course you're going to fight; is there really any other choice?
I’m just checking in today because I wanted to share some of my current thoughts and how I’ve been feeling lately.
I’ve been spending a lot of time following the American forums for melanoma survivors, and every single day, you see people popping up who have fought through this—people who managed to pull through and are living 5, 7, 10, 16, 28, or even 35 years after receiving the most terrifying diagnoses imaginable. If I didn't take the time to read all those individual stories and life journeys, I might actually start thinking that everything is lost and that hope has run out.
In a way that might sound a bit masochistic, I’m almost glad that we were hit with melanoma specifically, since it's the kind of cancer that can't just be tackled with standard chemotherapy or radiation, leaving us to rely heavily on our faith and our hope.
So, to everyone reading this: keep believing, keep hoping, and please, don't you dare give up or falter. Don't let the opinions of people in white coats get to you when they tell you it's over, because honestly, they have no way of truly knowing what lies ahead. When I first joined this forum, Angela Wright told me something so many times that it became an absolute truth for me: no matter what happens, do not be afraid. Fear only feeds the beast and gives it strength. Because no matter how difficult things get, these are precious moments where we can fully commit ourselves to our loved ones and pour all that necessary positive energy into them.
So, my fellow fighters, keep your heads up and stay brave. I am convinced that one day soon, a cure will be found, and we will end up being the pioneers of a whole new era in human history. Until then, we still have plenty of work to do—I don't know about you, but I’ve already got my application and paperwork ready, along with the determination to get involved with the New Day Association, and I really hope we’ll all be able to meet there together very soon. :-)
So, I just got some news from Germany—before the first injection, they ran a PET/CT scan to get a baseline of everything, and we actually got the results back about half an hour ago.
There was some "activity" showing up in two spots: at the surgical scar on the lower leg (where the surgeons already told us they couldn't get everything out, so that’s expected) and in the groin area, which was also operated on; interestingly, the pathology report from three months ago showed that area was completely clear.
Now, since the very first PET/CT also picked up some nodes that turned out to be totally clean on pathology, I’m not taking this result as absolute gospel, though it's pretty clear there's a strong chance this is the actual reality of things.
Part of me is incredibly relieved and happy because all his other organs still look clean, with no signs of metastasis. On the flip side, I'm a little worried because there's the possibility that some of the tumor survived the surgery in the groin and is continuing to spread.
Then again, he hasn't even received his first dose of DCvax yet, and it wouldn't have been realistic to expect any kind of spontaneous remission or anything like that quite this early...
I honestly don't know whether I should be celebrating or feeling depressed. Regardless, the fight continues, and we’re looking forward to winning the next round.
Also, someone asked how we ended up coming all the way to Germany—on my own initiative, I tracked down the doctor's address online and sent him an email, and he responded the very same day, so that's how this whole journey started.
Sending love to all my fellow warriors, and I'm wishing us all plenty of strength for the battles ahead!
Quick question for Elizabeth Gonzalez55, roughly how much does DCvax cost over in Germany?
😁
I can give you the exact breakdown: the first cycle consists of 8 injections spread out over three weeks, which runs about 15,000 dollars. On top of that, we had to put down an extra 1,000 dollars as a deposit to cover miscellaneous costs like lab work, consultations, leukapheresis, and the administration of the injections themselves.
If it actually works, you're looking at another 15,000 for the second cycle, and then about 2,000 dollars per year for a single maintenance injection for the rest of your life.
Oh, and there is one more thing that is absolutely, incredibly important:
I have spent countless hours reading through dozens of different life stories and scouring every corner of the internet, and what I’ve learned is that there really are no set rules. There are so many people whom conventional medicine essentially gave up on, yet they managed to fight back and secure years upon years of a wonderful quality of life despite their melanoma diagnosis. Because of that, please, arm yourselves with optimism and positive energy and just keep pushing forward bravely—with plenty of faith and inner strength. I am rooting for you, just as I am rooting for everyone else out there facing similar struggles in their own lives!
wiredranger21 said:They found skin cancer, which looks like melanoma. It’s already spread to his bones—I assume it’s pressing on a nerve because he can't move right now. He’s gone through radiation and probably chemo too, and yet, after just three weeks, they’re sending him home!😠 How is that even possible? Why would they do that? It feels like they haven't actually done anything at all. 😢
If we are talking about melanoma, unfortunately, it is one of those cancers that is really only treatable while it is still operable. Once it starts metastasizing, things get incredibly difficult because it tends to be quite resistant to both chemotherapy and radiation. While doctors do administer both, it is usually just palliative care intended to manage pain and temporarily slow things down rather than provide a cure. In America right now, there isn't any other standard treatment available that could make a difference. Over in the US, doctors typically prescribe interferon and Proleukin; this is a type of biochemical therapy believed to show some results in roughly 10% of cases, though you might eventually have to request it at a major hospital like Mayo Clinic at your own expense.
When melanoma reaches advanced stages, patients generally look toward clinical trials, such as the DC vaccine trials I mentioned before, or various experimental chemotherapies like MDX-010, Elesclomol, and so on.
My future husband is in a very similar situation to your father, and I can tell you from experience that I am never going to stop hoping as long as we both are breathing, regardless of what the doctors say—and they haven't had anything positive to tell us in a very long time. He decided he didn't want to undergo any kind of traditional chemotherapy or radiation, so he chose to try non-aggressive immunotherapy in Germany instead. He underwent an extremely intense surgery to address the metastases, completely overhauled his diet, and is taking a whole regimen of supplements for detoxification and immune support. Dr. Soltisyk was a huge help to us through all of this, so he is definitely someone I can recommend as being truly competent when fighting melanoma. If there is any way I can be of help to you down the road, please feel free to reach out via private message.
We just got back from Germany and we're currently getting everything ready while the vaccine is being cultured—if God willing, the first injection should happen around January 30th.
Regarding the procedure itself, there are actually two types of DCVax: the specific version and the non-specific one. Like I’ve mentioned before, the whole idea is to "educate" monocytes so they can trigger the body's natural defense mechanisms—basically, the immune system—and prompt macrophages to hunt down and destroy tumor cells. This education happens by injecting tumor information directly into those monocytes. This method works best when using the patient's own specific tumor material, which has to be harvested during surgery and then specially processed and stored. On the other hand, the non-specific approach uses proteins that are characteristic of that particular type of tumor. You don't need a prior surgery or a biopsy for this route, but it tends to be less effective.
I can't speak for brain tumors, but with melanoma, you can go either way, so we are opting for the non-specific vaccine since his doctors believe there isn't any residual tumor left following his surgery back in November. The plan is to switch over to the specific vaccine if the PET/CT scan we have scheduled in ten days shows any new clusters of tumor tissue. As much as we would love to use the specific vaccine, it wouldn't be good news if the cancer was actually progressing, so we are really hoping the PET/CT comes back completely clear and that his body can keep the disease in check using the non-specific vaccine.
I know this is turning into a bit of a long post, but I wanted to share a little more about how the vaccine is actually made. First, he has to undergo leukapheresis—that's a process where blood is drawn from the left vein into a machine that isolates the monocytes, and then the remaining blood is returned through the right vein. The whole thing takes about three to four hours and does come with side effects. Because the patient is given an anti-coagulant that binds to calcium, it can cause a calcium deficiency. I have to tell you, it wasn't a pretty sight watching my darling start to cramp and shake right in front of me, but thankfully the staff reacted immediately and everything turned out fine.
After that, the tumor information is introduced to the monocytes, they are left to mature for about a week, and then they are injected back into the body. The injections start every three weeks, followed by a follow-up PET/CT. If everything looks good, the vaccinations continue at four-week intervals, then every month and a half, and eventually, it moves to just one dose a year for the rest of his life.
Our very next step is the follow-up PET/CT, and that's the big hurdle we're facing now. Because of my own health situation, I won't be able to stay by his side, and honestly, I don't know how I'm going to survive waiting for that call. I am so terrified of these results; we had just finally started living normally again—he looks wonderful and feels great, he's hiking, skiing, and even drove us to Germany and back all by himself. We are looking forward to our wedding and the baby, and I just don't want this one scan to ruin everything or show that things are worse than they were. On the flip side, if it is good news, it will be such a massive relief, because this paranoia I'm living in is killing me too—every time he coughs, I think, "That's it, it's spread to his lungs," or if his head hurts, I'm convinced it's brain metastases...
Well, I've basically written a novel here—if I happened to miss any questions you might have, please let me know.
Amy Hayes28 said:My dad was actually offered one of those brand-new vaccines that just cleared trials, but we didn't bother asking for the name since we decided against it.🤷 It would have cost about $1,100 a week. While I was doing some digging online, I came across immunotherapy using DCVax. It’s supposedly the cutting edge right now, potentially tripling life expectancy while being much easier on the body than standard chemo. As far as I can tell, this is really the only major breakthrough in brain tumor treatment worth looking into.
Actually, this is part of a whole new protocol for cancer treatment in general. We are heading to Mannheim the day after tomorrow to start the DCVax treatment. We're traveling tomorrow and staying for a week, so I'll be sure to check back in and let you all know how everything goes!