New Year's Day brought us some incredible news about a new addition to our family! :-) Even though we had been wanting and planning for this for a while, making the decision felt quite heavy given everything going on right now, but we went for it. The whole family is absolutely thrilled and we have their full support behind us. As far as I'm concerned, my only real wish for the coming year is simply good health—for him, for me, and for the baby.
Let's just stay brave through 2008 and I wish everyone nothing but positive energy!
I really agree with everything you said—we often find ourselves discussing how people living in rural areas, without reliable internet access and relying solely on local doctors, face much tougher battles, especially when they're also dealing with financial struggles. In a way, we were lucky that even amidst this nightmare, we had the resources to research our options and actually afford the treatment. However, I have to point out that even though we aren't from a major metro area, our local physicians played a massive role in our journey. To give you an idea, after the recurrence was confirmed via cytology, the oncologist at the Vinogradski clinic sent us straight toward scintigraphy and surgery, even though he knew a PET/CT scanner was arriving at his department in just a month. My goodness, he’s practically sharing an office with the program director, yet he didn't even suggest the scan as an option. It wasn't until a plastic surgeon in Cleveland mentioned reading about PET/CT scans in a medical journal that we were pointed toward Canada for testing. After returning from those scans, we did a scintigraphy that completely failed to show all the potential metastases that the PET/CT clearly indicated. The bottom line is this: if we had followed the oncologist's initial recommendation and gone straight to surgery without the PET/CT, there would have been no chance of removing all the metastases because we wouldn't have even known they were there. !!!!
Afterward, my gastroenterologist in Karlovac recommended we see Dr. Soltysek and provided us with his contact information. Honestly, if it hadn't been for her, I don't know if we ever would have found him, and as I mentioned, he walked us through every possibility, gave us contacts and recommendations, and advised us on our next steps. Most importantly, he was the first person to truly give us hope and tell us that something could still be done.
What I can promise is that I'll try to put together a brief summary regarding dendritic cell therapy for carcinoma.com, since no matter how hard I searched, I couldn't find anything useful written in American English about it. I also plan to post regular updates here regarding experiences from Germany and the latest results.
gentlemoose62 said:Did your oncologist actually refer you to this, and is this experimental therapy being done at a hospital? From what I can gather, in your situation, it sounds more like a preventive measure to stop a recurrence, since everything was already surgically removed?
I am honestly so relieved that you’ve managed to get onto that protocol already.👍 BEST OF LUCK!
An oncologist? Well, yes, but one based in Germany. I actually just typed "best doctor in the world for melanoma" into Google, found a specific name, and basically sent a bluff email containing all our medical records. To my surprise, he replied the very same day and suggested we jump on a call. This professor is an incredibly talented oncologist-immunologist who has specialized in melanoma for about 15 years and has published around a hundred papers on the subject, so from the very beginning, we felt we could trust him completely. During our conversation, he walked us through all the options in great detail, explaining that the disease would almost certainly return and that we could attempt to prevent a recurrence using high-dose interferon, which works in about 10% of cases. Interestingly, that is exactly what the doctors here in the States told us as well. He then clarified that along with the interferon, he could offer dendritic cell vaccine therapy, which we could either combine with the interferon or try on its own. We ultimately decided to go with the vaccine route because the side effects from interferon are just too rough.
In the meantime, we actually switched oncologists and moved from our local clinic over to a major hospital system, where we discovered that we wouldn't even be able to get that interferon nonsense covered by Medicare—it's honestly a disgrace. When we timidly mentioned that we were planning to head to Germany for experimental treatment, the reaction caught us off guard: the professor there was already familiar with the protocol and told us he fully supported our decision, even recommending that we go. He had tried to get his own patients enrolled before, but he kept getting turned down. Honestly, the person who has helped us most through this entire ordeal is Dr. Alexander Soltysik. When we first met him, he immediately suggested the dendritic cells and provided us with contacts in Germany, including the professor we had reached out to independently. While this kind of therapy is available at private clinics too, we decided to stick with a state-run hospital.
Sorry for the long post, but I thought maybe this might help someone else out there...
Gentlemoose62—thank you so much for the support. I was just doing some digging on Google and found a few articles regarding dendritic cell studies for ovarian cancer, and it looks like the success rate is similar to melanoma: about 20% of patients in the late stages saw either full recovery or stabilization of the disease.
gentlemoose62 said:I'm really curious about what this experimental immunotherapy being done in Germany actually entails, and whether it can be applied to all types of cancer or if it's strictly for melanoma. Thanks
I don't know the exact list of every cancer type currently being targeted in this experimental phase, but it certainly isn't limited to just melanoma. My impression is that they focus heavily on melanoma because those patients often find themselves with very few other options left on the table. Generally speaking, the process involves dendritic cell programming—which is essentially a way of training certain white blood cells. They start by drawing blood and isolating the leukocytes, then they take those cells into a lab and inject them with tumor proteins. You get the most impressive results when you use specific tumor material harvested from the patient themselves, though if that's not available—like in our situation here where everything was already removed during surgery—they end up using material from a donor instead. Once these "trained" dendritic cells are injected back into the body, they pass along critical information to the cells responsible for hunting down tumors, effectively activating the immune system to go out and do its job. It feels simple, natural, and much less aggressive than traditional methods. Based on some articles I've been reading, there's an expectation that they will refine this method over the next couple of years until it becomes a standard protocol for treating various malignant diseases.
Angela Wright said:Thank you so much. Our association is definitely going to need someone with a legal background, so I’m reaching out to see if you might have the interest and the time to join us. We have some pretty big ideas on the table that just won't be possible to pull off without some solid legal support.
Absolutely, I'll shoot you a private message about it! :-)
Honestly, it’s hard to put into words... He recovered beautifully from the surgery and now he’s gearing up for round two of this battle, which involves traveling to Germany for some experimental immunotherapy. Reading through all these posts, I can't help but feel a bit envious of those of you who have more traditional fighting options available; our oncologists told us that neither chemo nor radiation would be effective here, though they did mention seeing cases where people lived inexplicably long lives. So, we’re really just left holding onto hope. We haven't let ourselves get discouraged, though; we've enrolled him in a German melanoma research program and have leaned heavily into holistic changes—he’s overhauled his diet, stays very active, and right now I'm trying to nudge him toward meditation because he's been so much more high-strung since this whole ordeal began.
As for whether everything we've done actually worked, we won't know for sure until the follow-up PET/CT scan at the beginning of February. He's staying positive and is convinced everything will turn out fine. :-)
Angela Wright said:Hey, thanks so much for sharing all that info with me! Regarding the bylaws, we actually drafted them using a template provided on the websites of some similar non-profit organizations. I honestly think they turned out quite solid, and the meeting minutes look great too.👍 Well, since we've already submitted all the paperwork, there isn't much left to do but wait, and if things get complicated, we aren't far from Small Town.😉
Anyway, I really hope everything moves along quickly and smoothly for you guys! And before I forget—if you find yourselves needing any legal assistance at all, just let me know, because I'm more than happy to help out!
Legally speaking, you’ve got a 30-day window to get an association registered, which means you really _have to_ wrap up the whole procedure within that timeframe. If the relevant government agency fails to meet that deadline, the law essentially considers the organization officially formed by default. Of course, if they conduct an audit and find any errors in your paperwork, the clock resets entirely, so _theoretically_ the whole thing could stretch on for more than two months; however, if the bylaws, meeting minutes, and formal decisions were drafted by someone who actually knows what they're doing and has experience with this stuff, there shouldn't be any issues at all.
As someone who holds a law degree and has been actively involved in launching several nonprofits during my relatively short career, my best advice is to handle the registration outside of Washington, D.C. The clerks in smaller areas tend to be much friendlier, they aren't as overwhelmed with paperwork, and they actually have the time to walk you through any hiccups you might encounter—plus, the whole process can be finished in just a day or two. At the end of the day, it doesn't matter whether you file in San Jose, Ann Arbor, Columbus, or Washington, D.C.; the legal standing is exactly the same.
I’m standing right there with feralwolf24 on this one. Both my Grandmother and Grandfather have been battling cancer for six years now, and thank God they are still here with us, even though the doctors basically wrote them off the moment the diagnosis came in. Through that whole ordeal, I learned a hard truth: we can't just rely on doctors to save us. They are there to help, sure, but that help is only truly effective if we step up, get involved, and take charge ourselves. Unfortunately, I didn't keep that lesson in mind during this recent situation. I foolishly assumed that because the patient's father is also a physician, he would naturally merge those two roles and provide that extra layer of specialized care for his own son. Sadly, it turns out it isn't that simple. He genuinely believed he was doing exactly that, and honestly, you can't even blame him for the oversight. The point I'm trying to make—if I'm being clear enough and if you can follow my train of thought—is that I feel an immense amount of guilt for how things turned out. If I had stepped in sooner, if I had spent as much time researching as I am right now, and if I had treated this medical challenge with the seriousness it deserved, we probably wouldn't be facing this diagnosis today. So, please, don't put all your faith in doctors, no matter how highly trained or brilliant they might be. We need to stay informed and look out for ourselves and our loved ones. At the end of the day, we know ourselves and our family better than anyone else, and we are the ones best positioned to provide that necessary course correction to whatever treatment plan they prescribe.
Honestly, I feel like I’m the least important person in all of this right now, because the only thing that truly matters is making sure he’s okay, but sometimes the weight of it all just feels too heavy to carry. Ever since we got the diagnosis, the only time I feel even remotely alright is when I’m asleep. Every single morning, I wake up with this sense of pure horror inside me, leaving me feeling completely paralyzed. It’s like time has just frozen, and I’m watching the world pass by from inside some kind of vacuum where nothing actually happens. Yet, on the outside, I act like everything is fine—I smile, I stay upbeat, and I try to be positive. I do it all for him. How do I find any real happiness again, how do I overcome this constant fear and actually find a way to cherish whatever time we have left, whether it’s six months or sixty years, does anyone out there have a recipe for that?
I really want to thank you, Angela Wright and Nancy Hernandez43—your posts truly helped me get through this.
Carol Sanchez2—it all started with a weirdly shaped wart on his leg, so he went in for a checkup just to be safe. It turned out to be early-stage melanoma. He had a minor surgery under local anesthesia, and since there were no metastases and the sentinel lymph node biopsy came back negative, they told him chemotherapy wouldn't be necessary. We spent five years doing regular checkups with perfectly clean results—every three months for the first year, then moving to every six months—which honestly made us let our guard down. We relaxed and genuinely thought we were in the clear.
Now, we find ourselves right back at square one. But this time, the disease isn't in its early stages; it's advanced. If it hadn't been for the PET/CT scan, we would have had no idea how many millimeters it had spread. My advice to everyone is this: if you've been diagnosed with melanoma or even if you just have a suspicion, go get that scan. Soon it will be available via referral at major hospitals like Mayo Clinic, but even if you have to pay out of pocket, every single cent spent on it is worth it.
Hello to all the brave souls here in this community.
My partner is only 24, and he’s been fighting melanoma for five years now. We truly believed surgery had finally settled everything, and we were busy making big plans for our future together, but then a PET/CT scan from two weeks ago revealed metastases in his lymph nodes. Even though I’ve spent these past few years living with the constant fear of a result like this, always knowing deep down that this scenario was possible, I still can't find a way to come to terms with it. My entire world just flipped upside down in an instant, and suddenly nothing feels the same anymore—not the colors, not the sounds, nothing at all. The only thing keeping me going, the one sliver of hope that gets me out of bed every single morning, is the belief that he might actually end up as one of those positive outliers in the statistics. I am determined to do absolutely everything within my power to help make that happen. That is exactly why I am here—I want to learn from your experiences, hear your advice, and gather any useful information you can share. Anything at all could be helpful, especially if anyone has insights specifically related to malignant melanoma.
Starting today, I’m going to begin reading through this thread from the very first post, as I’m sure there is already a wealth of wisdom shared here.
Hello to all the brave souls gathered here in this community.
My partner is only 24, yet he has been living with melanoma for five years now. We truly believed surgery had finally settled everything, and we were busy making all these big plans for our future together, but then a PET/CT scan from two weeks ago showed metastasis in the lymph nodes. Even though I’ve spent these past few years living in constant fear of a result like this, knowing deep down that this exact scenario was always a possibility, I still can't find a way to accept it. It feels like my entire world just flipped upside down in a single moment, and suddenly nothing feels the same anymore—not even the colors or the sounds. Everything just feels different. The only thing keeping me going, the sole reason I pull myself out of bed every morning, is this tiny shred of hope: the belief that he might actually be one of those lucky outliers who beats the odds in those grim little statistics. I am committed to doing absolutely everything within my power to help make that happen. That is why I am here, looking for any shared experiences, advice, or helpful information you can offer... anything at all that might provide some kind of support or guidance.