Support resources for families dealing with cancer and other serious illnesses

Greetings to everyone.

My mother has been battling metastatic melanoma for several years now. I mentioned this briefly in another thread on this forum, and one member suggested I look through this specific discussion for information regarding immunotherapy in Germany and strongly advised that I direct my mother to Dr. Soltysik. This is such an extensive thread, and since I am acutely aware that every single day counts, I would be deeply grateful if you could answer a few questions or perhaps point me toward a helpful link.

1) What is the typical cost of immunotherapy in Germany? I realize answering this is likely quite difficult given how many variables are involved, but I would appreciate even a rough estimate so I know what to expect financially.

2) If my understanding is correct, the immunotherapy course lasts three weeks. Where is the patient housed during that timeframe? Are they admitted to the hospital, or is it necessary to arrange private accommodations independently?

3) I am having a bit of trouble determining exactly what kind of practice Dr. Soltysik maintains. Is he a private general practitioner, or does he specialize further? If so, what sort of fee structure should we anticipate when consulting with him?

I hope I have grasped the basics correctly. I am praying that a kind soul might offer some baseline information to give me a starting point for my research. I realize that I must present a fully fleshed-out plan to my mother; otherwise, she simply won't consider it. It seems to me that she is beginning to lose her will to fight.😢

Please feel free to respond via PM as well...

I find myself compelled to pose another question, though perhaps it strays slightly from our current focus on my mother’s melanoma. Still, I have a nagging suspicion that this particular group offers the most sensible insights. It seems to me that almost everyone who has battled cancer wishes they had caught it in its infancy. To that end, what specific screenings would you recommend for healthy individuals? How often should one undergo them, and which medical institutions or specialists would you suggest seeking out? One can't help but feel that, through sheer necessity, we have all become significantly more enlightened regarding our own health lately...

Michelle Fisher said:I have one more question, separate from my mom's melanoma. This might be off-topic, but I feel like I'll get the most sensible answers here. I think most people fighting cancer wish they had caught it earlier. For healthy people, what screenings, how often, and where do you recommend we go for preventative checkups? I feel like everyone is a bit smarter about this now because of everything we've been through...

Unfortunately, you can't prevent or catch every single type of malignancy early. That's just reality. However, the vast majority of common cancers actually *can* be prevented or detected while they are still manageable.
Colorectal cancer—anyone over 50 absolutely needs to get a stool test. You don't need to see blood with the naked eye for there to be an issue. Also, anyone dealing with hemorrhoids really ought to get checked out with a colonoscopy, since those issues can sometimes mask or lead to tumors.
Breast cancer—start doing monthly self-exams in your 20s. Get an ultrasound once a year, and once you hit 45, move to an annual mammogram.
Cervical cancer—an annual visit to the gynecologist is non-negotiable, including Pap smears and any necessary swabs.
Lung cancer—smokers between the ages of 40 and 60 should undergo chest X-rays, spirometry, sputum cytology to look for early changes in the bronchial mucosa, and carbon monoxide testing via peripheral blood. (In many parts of the US, these types of screenings are organized through public health initiatives).
Prostate cancer—men over 50 should include a digital rectal exam as part of their regular physical.
Stomach and esophageal cancer—people who suffer from chronic acid reflux (GERD), Helicobacter pylori infections, heartburn, or gastritis should definitely schedule a gastroscopy.
Melanoma—keep a close eye on your moles; if you notice anything weird, see a doctor immediately. People with fair skin should also schedule periodic dermatologist visits, coordinated through their primary care physician.
Testicular cancer—perform regular self-exams and report any unusual lumps to a doctor right away.

Most of these screenings are covered by insurance, and for colorectal and breast cancer specifically, there are ongoing national prevention and screening programs active across the US.
Your primary care physician is your best resource for all this info, as are various cancer advocacy organizations.

Michelle Fisher said:Hi everyone!

My mother has been fighting metastatic melanoma for years now. I brought this up in another thread here, and one member suggested I look into immunotherapy options in Germany on this specific thread and that I should definitely get my mom in front of Dr. Soltysik. This thread is massive, but I know every single day counts, so please—if you can answer a few questions or just point me toward a helpful link, I’d really appreciate it.

1) What does immunotherapy cost in Germany? I realize there isn't a simple answer since it depends on so many variables, but I need at least a rough ballpark so I know what we're looking at.

2) If I understood correctly, the immunotherapy cycle lasts three weeks. Where is the patient expected to stay during that time? Are they admitted to a hospital, or am I responsible for finding local accommodations?

3) I'm having a hard time figuring out what kind of practice Dr. Soltysik actually runs. Is he a private general practitioner or something else? If so, what kind of price range are we talking about?

I hope I've grasped the basics correctly. I'm praying there's a kind soul out there who can provide some foundational info so I have a starting point for my research. I have to present a fully fleshed-out plan to my mother, otherwise she won't even consider it. It looks like she's starting to lose her will to fight. 😢

Feel free to shoot me a PM if that's easier...

To be perfectly blunt, I haven't had a single shred of positive experience with any "alternative" practitioners.
The fact that Dr. Soltysik isn't registered with any official medical boards speaks volumes on its own. In the US, you cannot legally practice medicine unless you are a registered healthcare provider. Anyone operating outside those regulations is breaking the law.

Angela Wright said:She’s incompetent and totally unprofessional. Just switch doctors.
It’s clearly a brain tumor.
All I can say is that right now, I am incredibly grateful for Milinović and for an American healthcare system where Vincristine and CCNU therapy are listed as second-line options immediately following Temozolomide in the first line.
Dear Susan Hayes25, unfortunately, the kind of issue you're facing is handled through systemic efforts via civil society organizations—much like my own association, which I decided to start by writing on this thread alongside other forum members. It turned out to be the best and craziest thing I've ever done for myself, and I say that without any false modesty—it was for my country and the people living in it.
I really hope someone finds that same grit, defiance, and strength in neighboring countries.

I'm sure you have it—whatever you need, I'm here as much as I can be... I've been following all your posts from the sidelines. That’s actually how I learned about so many things, including CCNU therapy and Vincristine. My late husband received those based on his doctor Vrdoljak's choice. We all fought so hard—my husband more than anyone—but the tumor was just too strong and moved too fast. If it weren't for forums like this one, I honestly don't know how I would have made it through.

Angela Wright said:To be perfectly honest, I haven't had a single positive experience with anyone practicing alternative medicine.
The mere fact that Dr. Soltysik isn't recognized by any legitimate medical authorities speaks volumes on its own. In the US, you simply cannot practice medicine unless you are registered as an official healthcare provider. Anyone operating outside those legal boundaries is essentially in direct conflict with the law.

That is precisely the conclusion I have reached as well. When I brought him up to my mother, she mentioned she had already heard of his reputation; she told me my grandmother—who was battling stomach cancer—left quite a significant sum of money in his hands, yet he didn't provide her with even a shred of actual relief.

What is your take on immunotherapy treatments over in Germany, though? From what I can gather, they operate as fully accredited medical institutions there...

And thank you ever so much for that exhaustive post regarding preventative screenings. I am certain many people besides myself will find it incredibly beneficial.

Michelle Fisher said:That’s basically where my head is at too. I mentioned him to my mom, and she said she’d actually heard of him before—apparently, my grandmother left quite a little fortune behind with him when she passed from stomach cancer, and he didn't do a single thing to help her.

What’s your take on immunotherapy over in Germany? From what I can gather, they’re a fully registered medical institution there...

And thank you so much for that detailed breakdown on preventative screenings. I’m sure it’ll be helpful for more than just me.

I know someone who tried that immunotherapy route, but it didn't exactly yield the results they were hoping for. That said, there are zero guarantees in this business. It's worth a shot if you want.
If I were in your shoes, I would put all my energy into looking into clinical trials.
Click here to see which studies are currently open for malignant melanoma. If you manage to get enrolled, the pharmaceutical company picks up the tab for the treatment, and if the drug proves effective, they usually keep providing it even after the study wraps up.
You can track all the active studies in America here
. Right now, there aren't any open trials recruiting new melanoma patients here in the States.

Could someone please explain what Mia and S-100 actually mean? I'm asking in relation to melanoma... and I suppose I should also ask what counts as a normal value? My apologies if this is the wrong subforum; maybe someone could move the post for me. Thanks!

Angela Wright said:Right now, there aren't any open clinical trials recruiting new patients for melanoma here in the States.

It appears there might actually be one at However, from what I can gather, they aren't accepting patients who have already undergone chemotherapy 😢. I suspect they might be quite rigid regarding those specific eligibility criteria, but I shall certainly tell my mother to give them a call and inquire regardless. One can never truly be certain 🤷

Michelle Fisher said:It looks like there actually is a However, from what I can tell, they aren't enrolling anyone who has already undergone chemotherapy 😢 I'm guessing they're being pretty rigid about those requirements. That said, I'll definitely have my mom give them a call to see if they can make an exception. You never know 🤷

I have no idea how I missed that 🤷

Regarding the part in bold—did she receive chemo, or was it Alpha or Interleukin 2?
There’s a massive difference!

I’ve just finished my first round of DTIC chemotherapy (whatever on earth that actually signifies 😕). My other two doctors clearly understand the protocol, and they’ve assured me I haven't received this specific one before. Does anyone happen to know what the actual distinction is?

Michelle Fisher said:Starting my first round of DTIC chemo—whatever that actually means. 😕The other two know exactly what's going on, and she’s certain she didn't receive it. What’s the actual difference here?

The key thing to wrap your head around is that we're talking about biologics here—these aren't your standard, old-school chemotherapy drugs.

Dearest

I took your advice and sent my niece to see her primary care physician. I’d heard some rumors about her before, but this latest situation is just completely unacceptable.

The doctor actually told her she could get an IV drip once she finishes chemotherapy?! She claimed it wasn't necessary right now—though I have no idea how she reached that conclusion without even checking. And if she really wants treatment, the doctor suggested she go to a local Community Health Center in her neighborhood?! As if she should just take all those papers and wander around from place to place.

To make matters worse, this same doctor dismissed the lumps on her back as mere fatty tissue that any surgeon could easily remove (even though they were actually melanoma metastases). When she was vomiting, the doctor blamed it on a simple bacterial infection, leaving her to suffer through two months of constant sickness until she finally went to a private specialist for a real exam.

What kind of doctor is this? Who in God's name does she think she's serving?!

I honestly feel like this is going to end terribly because I am at my wits' end.

loneridge80 said:Listen, Angela Wright,

I actually took your advice and sent my niece to see her primary care physician. I’d heard some rumors about this doctor before, but this latest stunt is just beyond the pale.

The doctor told her she could get an IV infusion once her chemo is finished?! As if she needs that right now—I have no idea what kind of logic she used to reach that conclusion since she hasn't even seen the patient! And then, if she really wants help, she suggested going to a local Community Health Center in her neighborhood?! As if she can just wander around dragging all those medical files from place to place.

It gets worse. This same doctor looked at the lumps on her back and dismissed them as nothing more than fatty tissue that any surgeon could just snip out—even though they were actually melanoma metastases. When she was dealing with constant vomiting, the doctor brushed it off as a simple bacterial issue, leaving her to suffer through two months of nausea until she finally went to a private specialist for a real exam.

What kind of doctor is this? What kind of person prays to the same God as her?!

I feel like this is headed for a disaster because I am honestly at my wit's end.

File a complaint with the Social Security Administration. Send a formal letter to Dr. Mary Hrastinski (Supervision and Oversight) at Margaretska 3, or via fax at 01/4806 308. Make sure you include the doctor's full name, the name of the clinic where she works, and provide a brief, clear explanation of exactly what happened and all the ways she failed your sister.
I just got off the phone with Medicare, and they were incredibly helpful; they genuinely care about providing quality service to us, so they will definitely take this seriously.
Now, just go find a different primary care physician and transfer your sister over to them. You'll get the necessary paperwork to fill out, and once that's done, you won't ever have to deal with that woman again—not even a word or a look—because the transfer is handled through the system.
Stop letting this eat at you. Just get it done.

Angela Wright said:File a report with the Social Security Administration. Send a letter to Dr. Mary Hrastinski (supervision and control) at Margaretska 3 or via fax at 01/4806 308 stating the doctor's full name and her Community Health Center, then briefly and clearly explain exactly what happened and all the failures regarding your sister.
I just called Medicare and they were actually very kind; they truly care about treating us right, so they'll look into this.
Now, just go see a different primary care physician and transfer my sister's care to them. You'll get the necessary forms to fill out there, and you won't ever have to deal with that woman again—not even a phone call or a glance—because the transfer is handled through the system.
Don't let this weigh on you anymore; just get it done.

My dear Angela Wright

My sister is actually in the Emergency Room right now because she took a turn for the worse and can't even stay on her feet. They put her on an IV (the exact same one her GP said wasn't necessary) and she’s heading for an emergency cranial CT scan with contrast.

We already submitted the request to switch her to a different doctor (in her own neighborhood!!) but that request is still stuck with Medicare or wherever else, and nothing has been resolved yet.

It's enough to drive you crazy!!!

loneridge80 said:My dear Angela Wright

My sister is in the ER right now because she took a turn for the worse and can barely stay upright. They’ve already started her on an IV—the exact one her primary care doctor insisted she didn't need—and she's headed for an emergency cranial CT scan with contrast.

We already filed the paperwork to switch her over to a different specialist (right in her own neighborhood!!), but that request is still stuck somewhere within Medicare or whatever bureaucracy they call it, and nothing has been resolved yet.

It’s enough to drive you insane!!!

Ugh...😢
Alright, let's take a breath and try to be rational here.
Your sister is in the hospital, and they are going to stabilize her. She collapsed because of the edema. They’ll likely give her Manit and dexamethasone. I suspect they’ll want to run more imaging immediately. Since Manit and steroids kick in fast, her condition should start improving shortly. They might even implant that pump I mentioned to you before. Make sure you ask about everything—write down every single question at home before you get there!
You absolutely have to call Medicare. Demand to speak with someone who can actually tell you the status of that transfer request. We are talking about a critically ill person who cannot afford to wait while her current doctor fails to provide adequate care. Tell them the advocacy group advised you to call personally; there’s no point in us trying to navigate this mess when you need to make it clear that you intend to file a formal complaint against the physician.
And file that report against the doctor! I know you don't have the energy for it right now, but if you don't, she'll just keep taking it out on the next cancer patient who walks through that door.

Angela Wright said:Phew...😢
Alright, let’s take a breath and try to be rational here.
She's in the hospital now, and they're going to stabilize her. She collapsed because of severe edema. They'll likely put her on Manit and dexamethasone. I expect they'll run another scan immediately, too. Since Manit and dexamethasone work fast, her condition should improve shortly. They might even implant that pump I mentioned to you earlier. Make sure to ask about everything and write down all your questions before you get home!
You absolutely need to call Medicare and ask to speak with someone who can clarify the status of that transfer request. We're dealing with a critically ill patient who cannot afford to wait while her current doctor fails to provide adequate care. Tell them an advocacy group advised you to call personally; there's no sense in us handling this when we've already told you to report the doctor regarding your next steps.
And file that complaint against the doctor! I know you don't have the energy for it right now, but if you don't, she'll just keep taking it out on the next person who walks through the door.

The worst part is that I'm not even there since I don't live in Washington, D.C. Her mother-in-law is with her—she's 76, and honestly, I tip my hat to her; I thank God for her every single day.

Correction to my previous note: she received word from the Klović clinic that the request for Dr. Mlikotic was denied, and now she's being told she can only choose from three other doctors who have been completely sidelined?!

I really don't get Ivana. If Dr. Mlikotic confirms that I am requesting him because he is our family physician—my entire family sees him—who in the Social Security Administration has the authority to deny that?!

I am so sorry to hear about your sister’s illness... and don't even get me started on having to deal with that crazy doctor! Ugh!

I honestly don't get why you're running into these delays getting the transfer approved. It's ridiculous. I just transferred a guy over to my primary care physician recently, and the whole family switched dentists too. We just showed up at the clinic in downtown Chicago with some paperwork we got from the new doctor, they processed everything, and that was it. No waiting around for permission, no nothing. Just done.

loneridge80 said:I just don't get Ivana. If Dr. Mlikotic says she’s my choice—and she is, since my entire family sees him—then who exactly at the Social Security Administration is qualified to step in and tell me otherwise?

Honestly, I wouldn't know... my guess is they have these specific quotas in place, and if one facility hits its limit while another is sitting around short on patients, they just shuffle people over there to balance things out.
Go ahead and file a formal complaint. Lean hard on your right to choose your own doctor—you shouldn't be forced to settle for some random practitioner you’ve never even heard of. It makes zero sense to just hand you a stranger and call it a day. You should also reach out to Dr. Mlikotic and get his take on how to handle this situation.
Don't back down—get on the phones and start dialing right now!

I often wonder if there are people who die when they actually deserve to live—and then there are those who are living but really deserve to die. Some famous quote, I think—honestly, can't remember who said it. 😢