Regarding the "Hallwang clinic"

[Maia]

A little background for this post.

A fellow forum member, ko1300cc, let us know in this thread the sad news that his mom passed away, and the circumstances of her last days/ treatments at a certain private clinic in Hallwag, Germany.

I gave him my condolences and as part of it, I've commented: "It makes me so upset to read about this clinic in Germany. It's not the first case I found related to it, on different boards, this past year. That they call 'immunotherapy' that, what they do (chemoembolization and Remobav), makes me angry beyond words."

This prompted a post from pete43lost_at_sea, addressed exclusively to me, not to our mourning fellow, so I have to reply -just didn't want to do it in that somehow personal post.

Pete, you don't need to guess the reason of my anger ("you may be angry for whatever reason") because I've said it, explicitly: it makes me angry the way they use the word 'immunotherapy' for what they do.

Explanation: yes, they do use Removab (catumaxomab), which is a monoclonal antibody and, thus, indeed, an 'immunotherapy'. Also, yes, they hook up patients with some dentritic cell vaccine development (they don't disclose that at their site, but the from-person-to-person testimony, as you do on the boards, says so), which is an 'immunotherapy'. *But* they do also, for example, chemoembolization (TACE, transarterial chemoembolization), which is chemotherapy directed to the liver (irinotecan, mytomicin, Avastin, as you had)), and many more things that are not immunotherapy. (Of course it's fine to do surgery, TACE, HAI pump, Theraspheres, RFA, CyberKnife, plain ole Folfox, to get you to NED! -but, then, *that* is not 'immunotherapy' in the way the scientific community is using it to designate new developments in cancer immunotherapy. Just don't call it that way. Otherwise, all the fellows here who had Avastin (bevacizumab, which is a biological agent, a monoclonal antibody) along with Folfox, Folfiri and RFA (for example), could be claiming 'we did immunotherapy!'.
Bottom line: my problem is they use the word 'immunotherapy' inexactly; in the context of the expensive prices they have, it works as a commercial 'hook', in my opinion.

But I also said: "It makes me so upset to read about this clinic in Germany. It's not the first case I found related to it, on different boards, this past year."

I'm referring to the cases of Ren and Tedd (also http://csn.cancer.org/node/260412 ), fellows from other colon board, who have passed away.
Ren was an extremely intelligent, educated man; I followed his blog until the end. For me, it's simply heartbreaking that someone who wanted to stay away from chemo (his first post "My view is that if there is a cure, it does not lie with traditional chemo, but with the immune system") because of its horrible side effects and the little hope it offers, ended up undergoing the 4 TACE procedures he underwent under Hallwag's clinic partner, prof. Vogl ("aka Dr. Pain", per Ren's words: http://www.mcrc4.com/?p=4649 ). Please, read the procedures.
#1 TACE To Hell and Back
Chemoembolization Aftermath
#2 TACE Chamoembolization Round 2
#3 TACE TACE #3
#4 TACE TACE #4 Aftermath
Specially, the #4: Ren arrived to Hallwag (back from Frankfurt, where Dr Vogel operates) and felt like dying; only going over the report they found the reason; without Ren's knowledge
"Prof. Vogl added a new chemo drug into the chemo embolization cocktail mix. Gemcitabine joined Oxaliplatin, 5FU, Mitomycin and Avastin. He did not skimp and used double the standard dose. I am sure he meant well in light of my aggressive cancer, however it seems he fried my immune system and damaged my bone marrow in the process." http://www.mcrc4.com/?p=4755
Read also the removab procedures:
http://www.mcrc4.com/?p=4617
http://www.mcrc4.com/?p=4622
http://www.mcrc4.com/?p=4654
http://www.mcrc4.com/?p=4695
http://www.mcrc4.com/?p=4710
http://www.mcrc4.com/?p=4761

The following one, almost the last entry, makes me specially angry. Immunotherapy in the set of the clinical trial, chemotherapy, monoclonal antibody off-label use, CAM... whatever a doctor is doing, the imperative is 'First, do not harm'. There is a point where it is patent you have to stop and just accompany the patient. This was last week of Ren in Hallwag: He went for a "just a gentle week of liver and immune therapies to prepare my body for the complex liver surgery". They ended up doing IV EDTA chelation therapy to a patient with full blown jaundice; wrong antibiotics proposed... http://www.mcrc4.com/?p=4796

Peter, I'm happy you're feeling well, getting success, being cured. Some of the things they do at Hallwag probably helped you big time, but also many other things you did/do. I'm glad you posted this disclaimer here:

DISCLAIMER I now work at some of these clinics and get subsidised treatments due to necessity. I have personally benefited significantly from all there treatments and some friends have have tried have died.

By all means, I believe in freedom of information and I also have faith in people's intelligence to discern information. Because of that, I do encourage people to read Peter's blog: http://petertrayhurn.blogspot.de/ All of it, complete, as I've read it and I do, since years ago.
Also, I encourage people to read *all* Peter's posts in this board: search.php?author_id=34839&sr=posts
and also the posts Peter did at the CSN CRC forum: https://www.google.com/#q=%22pete43lost ... cancer.org
Also, please, read Ren's blog, complete; you'll learn a lot, it's his legacy: http://www.mcrc4.com/

Nothing more to add to this : )

(Edited to correct links -they work after one insists on them!- and various spelling/ grammar mistakes)

[Voxx66]

I personally would avoid this clinic and others like them at all costs. There is no magic here. What I see are questionable practices, false advertising, and profiting off of fear. It's just my opinion though I think it is backed by facts. Germany has reputable cancer clinics and hospitals. They are also plagued by clinics such as this one. It makes me angry as well.

[sdp]

I just posted on the CSN board about letting PEte in and tried to give many convincing arguments for it,

I agree that most treatments being done by pete and others at hall wang clinic are experimental at best ..

I am sorry it had to end this Wayne

[Voxx66]

Oh and Maia I read and benefit from your posts on real immunotherapy. I suspect it is the best hope anytime soon for giving better results to those of us suffering from Colon and other types of cancer. Some of the research is very exciting. And I also am not opposed to Removab though I think it needs more study. Please keep the good information coming as it is certainly appreciated.

[radnyc]

Although I am certain my NED status is mostly the result of excellent medical care, experienced cancer centers, and lots of luck. I admire people like Pete who have gone a different way. What he, lohidoc and Ren have done is in my opinion invaluable to us cancer survivors/patients. I for one do not flat out discount that some people are put into long term remission and improved their quality of life following alternative treatments, not a lot but a few. Yes, there are scammers and dangerous procedures out there which need to be exposed and stopped, and I have no opinion on Hallwag or any other clinic, but there are options out there outside the mainstream which may work, and maybe one them will come up with effective treatments or even a cure. Let's not generalize and dismiss all of it off hand. After all the placebo effect in most randomized trials seems to help a small percentage of patients, no drugs, no treatments, just your brain. How do we explain that?

[annalexandria]

Thank you, Maia. This is one of the best descriptions, with a solid understanding of the underlying medical issues, that I've seen yet about the worrisome approach to medicine taken at that particular clinic.
I too followed Ren's blog closely, and you highlighted one of the things that truly horrified me...doubling the dose of chemo without warning the patient or planning for the possible (inevitable?) side effects. This is profoundly unethical, imo.
And it was unethical for Pete to promote (not just share info about) this clinic and its treatments, without disclosing his monetary relationship with them.
Full disclosure: I have been on the CSN forum for a few years, and had many interactions with Pete. At first these were positive, but over time, I came to realize we simply represented customers to him, not fellow patients. I was not sorry when he was finally banned from CSN.

[crhamilton]

Hello, I´m just joining this forum but I had good experience with the treatments that has been offered to me from the Hallwang Clinic - after having my 10th line "palliative" chemo behind me, that worked until this year quite well for me, I decided to go to the Hallwang Clinic, received Tace of my liver, Removal, anti-PD1 and anti-CTLA4 antibodies and dendritic cell therapy - and now I´m in complete remission. I think these therapy approaches are well recognized by many oncologists and even my oncologist has supported my treatment at Hallwang since he is currently not able to organize these drugs for me. But I also think that it is not only he combination of these drugs, the adjunctive therapies provided i.e. like Hyperthermia and dendritic cell vaccination might have worked in concert. In conclusion, with my personal experience at Hallwang, as well knowing now so many patients that went to Hallwang and who became friends for me, and who achieved so amazing results I cannot understand this negative and sometimes emotional opinion about this clinic.
i.e. I would like to talk about a friend, who has been at HPOC with me, since he received a treatment similar to mine, but still different: he received TACp for his stage IV NSCLC , anti-GD2 for his GD-2 expressing tumor cells, dendritic cell vaccination and Ipilimumab - along with the conventional chemotherapy carboplatin and pemetrexed - now after just 3 months he has a tumor reduction of over 80 percent, some metastasis even disappeared completely - and he has actually achieved a down-staging to stage -II-III, applicable for cyberknife in combination with conventional radiotherapy in January - I am so happy for him and his family, - he is just 38. And there are so many other patients I got to know who are doing so well with these obviously top notch treatments there -
Sorry, I just cannot say anything against this clinic - right now -

[singingholly]

I think you behaved properly Maia...

[Maia]

Hello, I´m just joining this forum but I had good experience with the treatments that has been offered to me from the Hallwang Clinic - after having my 10th line "palliative" chemo behind me, that worked until this year quite well for me, I decided to go to the Hallwang Clinic, received Tace of my liver, Removal, anti-PD1 and anti-CTLA4 antibodies and dendritic cell therapy - and now I´m in complete remission. I think these therapy approaches are well recognized by many oncologists and even my oncologist has supported my treatment at Hallwang since he is currently not able to organize these drugs for me. But I also think that it is not only he combination of these drugs, the adjunctive therapies provided i.e. like Hyperthermia and dendritic cell vaccination might have worked in concert. In conclusion, with my personal experience at Hallwang, as well knowing now so many patients that went to Hallwang and who became friends for me, and who achieved so amazing results I cannot understand this negative and sometimes emotional opinion about this clinic.
i.e. I would like to talk about a friend, who has been at HPOC with me, since he received a treatment similar to mine, but still different: he received TACp for his stage IV NSCLC , anti-GD2 for his GD-2 expressing tumor cells, dendritic cell vaccination and Ipilimumab - along with the conventional chemotherapy carboplatin and pemetrexed - now after just 3 months he has a tumor reduction of over 80 percent, some metastasis even disappeared completely - and he has actually achieved a down-staging to stage -II-III, applicable for cyberknife in combination with conventional radiotherapy in January - I am so happy for him and his family, - he is just 38. And there are so many other patients I got to know who are doing so well with these obviously top notch treatments there -
Sorry, I just cannot say anything against this clinic - right now -

(...) I just have been at Hallwang Clinic until December 23rd for my second time now, suffering from coolrectal cancer stage IV - highly pretreated and latest - until August 2014 on my 10th line of palliative chemo - surviving already 5 years under this course. I´m fit and just went to my oncologist who did so great in the past and asked him for any follow up treatments since my liver metastasis appeared to grow. And my oncologist told me that I have been already on everything that is currently available - "there is no treatment available anymore." Come on, I couldn´t believe it, I was then and I´m still fit. When I came to know about the Hallwang Clinic via a third party website from Grace Gawler ("Institute") - that appears to charge a hell of money for blurry medical advices without a medical MD-background - puh - I was first lost but then found also posts from happy fellow that went to the Hallwang Clinic without these third party medical travel agencies, and finally I made it and went to Hallwang to give it a try- to make my story here short and I will continue at Maia´s blog: I´m really happy that pete wrote in this blog since otherwise I would´t have gone to Hallwang, would´t have received TACE for my liver, Removab for my EpCam expressing tumor, anti-PD1 and anti-CTLA-4tto release the break on my dendritic cell primed T cells- and finally I would have not been in complete remission now - and can support and underline Pete´s point. Pete thank you for your post - The Hallwang Clinic did just amazing in my case - my physicians at home are working now together with Dr. Nolting, who is indeed the most knowledgeable physician about integrative oncology and who I thank for this terrific year 2014. [from Long but Final Words]

Hi, crhamilton. First, let me say I'm happy that you're in complete remission. Also, I'm sincerely glad you had a good experience with this clinic. That seems to be the case of Pete, too and, if you read again my post, I've ended it posting links to not only his blog but also to all his posts in two different forums. I do think there is valuable information in his posts. I'll repeat what I said there in bolds: I believe in freedom of information and I also have faith in people's intelligence to discern information. That's why I post all those links, for people to read by themselves.

Let me clarify a couple of issues about myself, so you know I mean well with the previous.
First, that I'd never had started, on my own, a thread like this, devoted to this clinic, or other in particular (specially, criticizing it) because I have no time or interest in online discussions when/if they become too long or heated. In this case, I felt that I had to do it, for the reasons I expose in my first post in this thread: someone addressed a post to me, because a very circumstantial observation I did, and didn't want to hijack, with my reply, a thread that was devoted for a son to mourn her mother.
Second: I have a personal, long-term interest in immunotherapies against cancer (as you can see for most of my posts; some examples: viewtopic.php?f=1&t=38885 viewtopic.php?f=1&t=40772 viewtopic.php?f=1&t=45485 viewtopic.php?f=1&t=45897 viewtopic.php?f=1&t=46593 viewtopic.php?f=1&t=49348 viewtopic.php?f=1&t=49364) and I do think they work better in combination with other agents, even chemotherapy (systemic or local, like in TACE, HAI, etc.; won't quote myself again, you can do a search for my posts about that! : ); therefore, from a scientific point of view, all what you've mentioned and they say they do at this clinic and its associated ones (TACE, Removab, anti-PD1, anti-CTLA-4, DC vaccination, systemic chemos, etc.), makes perfect sense to me. I think the future of cancer treatment resides in most of those agents, and its combinations.
And third: given the poor outcomes that the standard-of-care offers to unresectable mCRC patients, today, I'm all for bold and out-of-the-box approaches. Not only that but, personally, I have a soft spot for trailblazers.

Said all that, I've been hoping for you to post more about your extraordinaire experience -you said "I´m just joining this forum" and I was waiting for more personal posts from you; so far, we only have see 2 more posts from you, all in general about the Hallwang clinic ( 1, 2).

I've also found good testimonials about this clinic in forums for other cancers (like this: December 2014, pancreatic cancer: https://pancreaticcanceraction.org/comm ... -than-hope ; this, also December 2014: a TN Breast Cancer posting in a GBM (brain cancer) forum: http://www.cancercompass.com/message-bo ... 013#599013 This patient, Johanna , says she was in that clinic until December 23, like you... maybe you met her?). But, so far, I have not been able to follow their experiences, so you're giving us an unique opportunity! Tell us more, please, in this thread, or better if you start a new one.

The immune response from an anti-CTLA4 (was it ipilimumab? tremelimumab?) is usually something big -I can imagine the combination with an anti-PD1 (was it pembrolizumab? nivolumab?), since there are trials for that (1, 2), but... adding dendritic cell vaccination, TACE and Removab... that escapes my imagination! How was all that administered --doses, along how much time--, if you don't mind? What side effects did you have?

Also, forget me for asking but... what about costs? If your anti-CTLA-4 was ipilimumab, it's only approved for melanoma; otherwise, it costs $120,000 for a course of therapy (or £3,750 per 10-ml vial or £15,000 per 40-ml vial, in the UK); can't even imagine the price of an agent that is only in clinical trials, like tremelimumab.
The anti-PD1 agents were only approved very recently, and for melanoma only (pembrolizumab (Keytruda) on September and nivolumab (Opdivo) on December), so they had to be extremely expensive when you had them, privately.
Which one did you have, or did you have other one?

Well, as you can see, I'd love to hear more about your treatments, and I'm sure other fellows too"

[crhamilton]

Hi Maia,

thank you for your follow up and thanks for your invitation, I just can underline what you have written - and I have checked your links, whether I would know the patients mentioned in these discussions - and yes, I might have met Johanna, when I think of her I actually can´t hold my self to smile, because - if she´s the one I have in mind - there were two Johannas at that time, then yes, she is one of the most positive thinking person I have ever met. For sure I have met Gerard, https://pancreaticcanceraction.org/comm ... -than-hope , who is mentioned in this link, he always slept in the infusion room =) - sorry Gerard for this insight -, just a "magic" story what they have achieved in his situation of pancreatic cancer - actually, I just heard that he might be at the Hallwang Clinic in February for a maintenance therapy and I hope to see him then, since I have been scheduled for a low-dose maintenance therapy with Ipilimumab and Pembrolizumab plus DC, too. Yes, magic fits it well.

The initial treatment has been set up in the way, that the TACE Liver has been performed 3 days after my arrival and a certain infusion program - as a kind of a preparation to circumvent the side-effects on the normal liver tissue - the day after I underwent Hyperthermia with Gisi, a very kind nurse, my blood tests recovered quite fast within two days, so that I was able to get my first 200 mg Ipilimumab in a splitted dose on the following two days - no big side effects - since they have drawn blood for an Virusreplication test and for the consecutive production of an Antisense Treatment that targets the Virusreplication (positive for CMV in the tumor cells), I have received my Antisense the day thereafter-I really was impressed how accurately, right from the beginning, all these therapies have been lined up - and it was easy to follow up on the following treatments based on a schedule that one gets as an therapy plan updated daily in the ward round, so then I received Pembrolizumab in fractionated doses each 50 mg and started thereafter with Removab 3 times in the row (with some days in between to recover) - that took in total about 2,5 weeks - quite intense flue symptoms, but within 24 hours the side effects were gone, and the nurses (Maike you are just the best!!) are just wonderful how they took care. After the recovery time, I continued in the 4th week with my DC Vaccination plus Hyperthermia that has been produced previously as well, and continued thereafter with my 2nd cycle of Ipilimumab and Pembrolizumab non-fractionated- that gave me some fever symptoms but which resolved without any specific treatment. At the end of my first stay I performed another TACE and then left after few days of recovery. In my second second stay I have as well completed two cycles of Ipilimumab and Pembrolizumab - the Removab treatment was just applied twice and I just needed one more TACE and one DC plus one further Antisense - so in total 4 cycles of Pembro plus 4cycles of Ipilimumab.

Yes expensive it was - costs of the drugs are similar to the ones in the UK - but ... anyways, I don´t care anymore, everything worked so well and it was worth it any penny.
Maia, and I´m serious, it´s really easy to get finally some one on your case who really cares - as I wrote before, just call the Hallwang Clinic and ask to talk to Dr. Nolting - you will see what I meant in the other post - it´s just the way it should be in any other clinic.

[Maia]

Hi Maia,

thank you for your follow up and thanks for your invitation, I just can underline what you have written - and I have checked your links, whether I would know the patients mentioned in these discussions - and yes, I might have met Johanna, when I think of her I actually can´t hold my self to smile, because - if she´s the one I have in mind - there were two Johannas at that time, then yes, she is one of the most positive thinking person I have ever met. For sure I have met Gerard, https://pancreaticcanceraction.org/comm ... -than-hope , who is mentioned in this link, he always slept in the infusion room =) - sorry Gerard for this insight -, just a "magic" story what they have achieved in his situation of pancreatic cancer - actually, I just heard that he might be at the Hallwang Clinic in February for a maintenance therapy and I hope to see him then, since I have been scheduled for a low-dose maintenance therapy with Ipilimumab and Pembrolizumab plus DC, too. Yes, magic fits it well.

The initial treatment has been set up in the way, that the TACE Liver has been performed 3 days after my arrival and a certain infusion program - as a kind of a preparation to circumvent the side-effects on the normal liver tissue - the day after I underwent Hyperthermia with Gisi, a very kind nurse, my blood tests recovered quite fast within two days, so that I was able to get my first 200 mg Ipilimumab in a splitted dose on the following two days - no big side effects - since they have drawn blood for an Virusreplication test and for the consecutive production of an Antisense Treatment that targets the Virusreplication (positive for CMV in the tumor cells), I have received my Antisense the day thereafter-I really was impressed how accurately, right from the beginning, all these therapies have been lined up - and it was easy to follow up on the following treatments based on a schedule that one gets as an therapy plan updated daily in the ward round, so then I received Pembrolizumab in fractionated doses each 50 mg and started thereafter with Removab 3 times in the row (with some days in between to recover) - that took in total about 2,5 weeks - quite intense flue symptoms, but within 24 hours the side effects were gone, and the nurses (Maike you are just the best!!) are just wonderful how they took care. After the recovery time, I continued in the 4th week with my DC Vaccination plus Hyperthermia that has been produced previously as well, and continued thereafter with my 2nd cycle of Ipilimumab and Pembrolizumab non-fractionated- that gave me some fever symptoms but which resolved without any specific treatment. At the end of my first stay I performed another TACE and then left after few days of recovery. In my second second stay I have as well completed two cycles of Ipilimumab and Pembrolizumab - the Removab treatment was just applied twice and I just needed one more TACE and one DC plus one further Antisense - so in total 4 cycles of Pembro plus 4cycles of Ipilimumab.

Yes expensive it was - costs of the drugs are similar to the ones in the UK - but ... anyways, I don´t care anymore, everything worked so well and it was worth it any penny.
Maia, and I´m serious, it´s really easy to get finally some one on your case who really cares - as I wrote before, just call the Hallwang Clinic and ask to talk to Dr. Nolting - you will see what I meant in the other post - it´s just the way it should be in any other clinic.

Thank you very much for your answer, crhamilton, very interesting and certainly promising. You have been lucky to not have serious side effects (only transient, expected) from all those treatments.
BTW, I'm not a patient but someone who formerly came to this forum to try and help a friend -and made new friends here and just did stick around. : ) (And, anyway, I wouldn't have the resources to do any of this; I'm from a poor country).

I was following you quite well until you said this:

I´m serious, it´s really easy to get finally some one on your case who really cares - as I wrote before, just call the Hallwang Clinic and ask to talk to Dr. Nolting - you will see what I meant in the other post - it´s just the way it should be in any other clinic.

"CALL NOW!" --you forgot that part. ; )
crhamilton, I certainly can understand the potential of these treatments but I have to disagree that " it´s really easy to get finally some one on your case who really cares" --it's really "easy" if you do have a 5-6 figures amount! (You need 80,000 for the first treatment only, at Hallwang) or if choose to bankrupt your family for this (which may be a licit choice, I'm not judging that; but certainly it's not an "easy" decision, not at all).
Most people in this forum do have professionals on their cases who *really* cares -at the MSKCC, SCCA, Mayo, Princess Margaret Hospital, Charité or a medium or small cancer center, all over the world. What a person obtains, with that amount, is sure access to therapies that are not yet approved. This is a capitalist world and money can buy anything that is material. On the other hand, having doctors who really cares is not impossible, even if you have less resources.

I look forward to see you participating regularly in this forum, in the future, informing about your progress, treatments!

[crhamilton]

Dear Maia,

you missed my point, sorry for the confusion .....everyone should make their own picture and I do think that it helps a lot to talk to the physicians at any german hospital before making a decision to travel there -

that is easy, quick and very helpful. "Call now" and get you informed by as many physicians , as many clinics - until you finally find your Army!!!

[Maia]

you missed my point, sorry for the confusion ..

No, I disagree --in fact, I don't think I missed your point.
I will ask to anyone reading this thread to read, again, my first post in this thread, check each link and make their own conclusions.
You also had your say; people can make their conclusions after reading your post (and the rest of the posts you have made, so far, in this forum). I'm really glad you posted; I think this thread now offers two different perspectives, a balanced point of view over this issue. Which should be one the objectives of this forum.
No more to add, from my part. I really will be looking for your future active participation on this forum; I'd hate to think yours was only drive-by posting.

[crhamilton]

It´s always the best to be informed - that´s the key to the best treatment, thanks

[lilacbreastedroller]

I'm interested in your progress as well. While I can't afford off-label drugs as treatment, Ive gotten them for free in exchange for being a lab rat in clinical trials!

I'm interested in the specifics of your case - most people include this in their message tag (I need to update mine.)

When were you first diagnosed? What was your tumor and met count at diagnosis, and where had your cancer originated and spread? How large were your primary and mets?

What standard treatments did you have before you went to Hallwang? Had you ever had surgery or rfa or other invasive treatments, and if so, which ones? What is your home country and where were you treated?

Was any of the conventional treatment helpful at all? And for how many months, years did you undergo treatment before choosing Hallwang?

What other german clinics did you consider besides Hallwang?

What was your "starting point" in terms of tumor size, location(s) , and number of mets when you started your Hallwang treatment? How long were you at Hallwang and how many treatments of each drug did you hAve before they all disappeared and you became NED? I was just curious about the timeframe.

That sort of data would be very helpful to readers here.

Karin