Hi Josh how's your wife doing now?
Hell there! I am Josh, and my wife is being treated at the clinic. I can only support Diane in everything she says. We have been treated incredibly well at the clinic-finally my wife gets the treatment she needs and deserves for TNBC. And she looks so well now, after 3 months treatment, the best I have seen her for years. Staff and treatment strategy are amazing. I think best is always to talk to ppl that have been there, talk to the doctors there before you decide what to do. So far, I have only met people who are very happy at the clinic. Obviously, I imagine there will also be some who are not (even though i have not met them yet), as this is normal. We have been to many clinics before, and there are always some who think differently, for whatever reason. From my side, people are purely professional and caring. They offer you the most recent medical discoveries based on clinical trials, which is especially interesting for those who did not get into a trial. We are glad we gave this place a chance!
I am surprised you are posting this now as the chances of travelling to Germany are pretty remote for most of us considering the current situation. I am glad you are having positive results and wish you well with your treatment. All the best x
Hi Nash, sorry to read about your sister. Afraid I can’t help with German clinics, I’ve read about them but haven’t been to any. I wondered if you’ve read Jane McClelland’s book How To Starve Cancer? If not, she researched and took off label drugs for her stage 4 cervical cancer 20 years ago. In the book she talks about a clinic in London, COC (Care Oncology Clinic) which will prescribe the drugs and compared to others I’ve read about it isn’t as expensive. She also has a Facebook group and website. I hope you find some support, Kate x
Has anyone been to one of the many other German clinics? We contacted Hallway but can't afford them.
We have been in touch with several other clinics but want to know if anyone has had personal experience of them?
My sister has TNBC with mets to brain, lungs and liver. The brain mets are the most urgent.
She is not eligible for any clinical trials in the UK and so far has only been offered palliative chemo which is unlikely to deal with her brain mets.
We need to go really soon.
Could someone give me advice about hallwang,
we are thinking treating our father there.
But we are afraid with all the controversy found on internet.
And No doctors I've been in touched knows this clinic and look skeptical?
You can pm me email@example.com
Thanks a lot
Mon épouse est dans la même situation que la votre. Ceci dit, les métastases sont encore très localisées sur un poumon. C'est une récidive précoce d'un TNBC. Nous sommes en contact avec la clinique Hallawang et nous sommes très interessés pour poursuivre leur traitements. Cependant, nous n'avons pas un budget suffisant, c'est pourquoi nous essayons d'obtenir une partie des traitements chez nous en France. Je souhaite prendre contact avec vous pour avoir plus de renseignements sur les traitements de la clinique Hallwang. Il est vrai que, dans le cas du TBNC métastatique, nous avons eu de très bon retour.
Pourriez-vous prendre contact avec moi? Votre expéreince pourra probablement beaucoup nous aider.
Hi Joshmomm; My wife is in the same situation as yours. That said, the metastases are still very localized on a lung. It is an early recurrence of a TNBC. We are in contact with the Hallawang Clinic and we are very interested in continuing their treatment. However, we do not have a sufficient budget, which is why we are trying to get some of the treatments at home in France. I would like to get in touch with you for more information about Hallwang Clinic treatments. It is true that, in the case of metastatic TBNC, we had a very good return. Could you contact me? Your experience will probably help us a lot. Best regards. vivissol
Have you visited the clinic or asked them about it? In Germany they have different regulations on medical treatment and can offer treatments also outside of trials. From my own experience, it is hard to get into trials sometimes, but still the drug tested might be the right one for. I have done lots and lots of research on the inernet and talked to many doctors before letting my wife visit the clinic, and now I am totally convinced that this was the best decision. Sometimes you have to think outside the box. Obviously, there are no wizards and cannot promise anything (would be unprofessional if they did), but they can offer a chance to patients in need while no other doctor offers anything any more. In my experience, many doctors, including oncologists, are really not up to date with sciennce and new, even approved!, drugs. We have been disappointed by so many doctors on our path, sometimes they did not even offer drugs and treatments, just because they did not know they were available. It is really a pity. At Hallwang clinic, bothe the scientific and clinical background and know how is really strong. Obviously, this comes at a cost, but we are very grateful we found this clinic. I can only recommend it to cancer patients out there.
I would definitely try the Hallwang Clinic, I am still amazed about what they can do and the care they offer. It is definitely worth the cost. I have seen many patients here who had great success, including my wife with breast cancer-now finally in remission. Cannot thank them enough. They offer targeted treatment and many new immunotherapeutic drugs along with conventional treatments. Best wishes!
Never did answer you. I lost motivation to proceed with Hallwang after had private consultation edited by moderator as per terms & conditions with a prof at LOC who said there are no trials fot my type HR+ HER- and immunolgy would not work. Hallwang offered this so was confusion. Also if only a trial at Hallwang why are we paying? I also saw a blog on intrtnet of someone who kept paying out huge amounts with no success so I got disillusioned. Still am and dont know what else to try. . Am on chemo again at mo EC
Hi Carolyn, October 15, with bone mets, same here! Agree about Letrozole and those pesky cancer cells!!! Sorry to hear you're getting more pain, I've read that can happen on Letrozole sure you have too, hope it's nothing more than that. I'm concerned because I've started getting pins and needles in my fingers if I lie on my bad side. As you say, all will be revealed in the not too distant future! I'll do a transfer to the bone mets thread...!! Take care xx
Hi Carolyn, thank you for replying, appreciate it, and hope Giedre is feeling better soon. Reading through posts earlier I noticed you have been taking Letrozole two years and have another scan soon? If I'm right you must've started taking it around the same time as me, I have an upcoming scan too! Hope you're scan goes well and thank you again x
Hi Giedre, afraid I can't offer any opinion on the vaccine as I know nothing about it but I read your post with great interest. I have ER+ PR+ HER2 + Fish-ve also with bone mets, my primary hasn't been found but are convinced it's breast. I have been taking Letrozole for two years now, was told I was NED three months after starting it and fortunately have remained so since, although I have another scan looming! I'm also very fortunate that I have suffered few side effects so far! I am very interested in holistic care and alternative therapies. On diagnosis (I was diagnosed stageIV despite going to my GP for many years saying something was wrong, didn't ignore me but maybe could've done more), I eliminated sugar and dairy from my diet and eat primarily a plant based diet, do have some wild Atlantic salmon and occasionally eggs. I also do more exercise and make sure I get more sleep! I would be very interested to hear more about your visit, and would welcome any information. I hope you've benefited from your visit to Hellwang and send you best wishes going forward. Kind regards, Kx
I have just spent a week at Hallwang and it's truly a very caring and professional clinic. I have er+pr+HER2- lobular cancer with bone mets. I received all the detox infusions as well as my last booster of THX vaccine. I've been offered polyclonal vaccine treatment but didn't have it as it's very new and isn't even in trial yet., has anyone else been offered this vaccine and could tell me more about it.
i live in Australia and would like to try the vaccine but am worried about side effects.
Hello SD123, my wife is being treated with TNBC at the Hallwang with great success. She has also had brain mets, also liver and lungs and is doing incredibly right now. All of the mets are smaller, and most of them gone. But yes, it is expensive, as these drugs are very new and some of them are even especially designed for the patient. For us, every penny we spend is worth it, as we know that otherwise she would be dead already, and we cherish every day/week/month the Hallwang treatment has given her. Do not know how long she will have, but she feels so good right now, and we can be at home most of the time, that I am so grateful we took the decision to go to Hallwang. It is definitely worth looking into.
I just wondered if anyone had been to Hallwang for treatment when they had brain mets?
My mother has mets from TNBC in her brain, liver, lungs, and most recently found in on place in her bone. We've obviously exhausted all NHS options and possible UK private treatments, and looking at Hallwang but we are relying on the treatments to cross the brain blood barrier (it should be damaged from the WBRT she had in Jan 2016).
I'm concerned about the time we have left to sort anything out that may help, but at the same time it's such a huge commitment money wise, and more so the time in hospital as my Mum hates any hospital (understandably). Lots of thinking to do and no time to do it.
I'd just like to reiterate what's been said by others who have been treated at the Hallwang. I would be on the next flight to Stuttgart Airport if I could afford to go back to have all the treatments they recommended. They give hope, when all feels lost, and they're very caring and professional. I very much enjoyed the secure feeling of being there and that glimmer of hope that things could improve. Unfortunately, I needed treatment for at least four different problems, which meant the cost was far greater than my means. I just had as much treatment as I could afford. I was never promised a cure but they thought they could offer me targeted treatments that would give me better quality of life and the potential to gain years, rather than months which was the most likely outcome if I'd just had to have chemotherapy here. Since my treatment there, my skin mets have cleared up and not returned, which is a huge relief, and I have certainly had a good quality of life for longer than I would have if I hadn't gone there. My situation has deteriorated since Christmas and I'm now on a clinical trial here but things have gone rather badly. I just need to win the lottery and get back to the Black Forest. If you have plenty of funds, I don't think the cost is excessive for what they can offer. The big disappointment is having to pay 19% VAT. Without that I could have had more treatments.
I just answered to another post. I have been treatetd at Hallwang and I can only recommend them. I think theier website is so vague, because they offer so much, that it is hard to be specific, as they will always analyze your tumor tissue to decide what treatment is best for you. So you do not know before what you will get, because it depends on the genetic characteristics and markers of your tumor tissue. But what you do know is taht at the beginning there is always a thorough diagnostic strategy, which is why I chose to go there-away from the concept "one chemo for all" to a treatment that is designed for ME. Of course, there are other doctors that do not recommend you to go there, because they do not understand or support what they do...but what I learned is, where there is success there is envy. And Hallwang clinic is very successful. What won my trust is that I was able to look up/google everything they offered me, i got myself informed about the scientific background and ongoing trials, which all convinced me to have treatment there. As most of you, I ahve exhausted conventional treatments, so there was a decision I had to take: Go experimental or palliative. Well, I chose experimental, and I am still alive (you should have seen my oncologist´s face when I came to see hm 6!months after he had told me there is nothing else he could offer me. I think he thought he was seeing a ghost!) So, I am still getting maintenace treatment at the clinic every other month for 2 days, and talking to the patients there, hearing their stories..it reassures me that I am at the best place for cancer treatment. Of course, there were also patients that did not make it, they came so late, that the cancer was too aggressive, but even their relatives speak highly of the clinic, which speaks for itself.
I have been treated at the Hallwang clinic, and I am really happy with the medical care I received there. Like so many, I was not eligible for any trials, but fortunately I had my tumor tissue sent to Hallwang where they analyzed it and I was able to get targeted treatment for my cancer. Iwas first hesiatnt about gong there, but I can tell you that they are purely professional and honest. They never promise a cure to anyone, but tell you what they can offer you. If it were not for Hallwang, I would be dead by now, as would be my friends that I met there. I was diagnosed with metastatic breast cancer and put on palliative care! Of course, no one knows how much longer I have, but I do know that I would not have had the last yearif I had not had treatment at Hallwang, and since I am cancer free now I hope for some months more, and maybe then some more months again, and so on. Since you have to pay the treatments out of your own fundings, it has to be well organised and I know not every one is able to go. But I am happy I could. And since I com from the medical field, I know that these antibodies cost a fortune, as a a patient you just dont know, because usually they are paid by your insurance. Unfortunately it takes ages until they will cover the costs for innovative treatment, and most of cancer patients do not have the time to wait around. What I love about the clinic is their really individual approach and the lovely staff. Ican only recommend them, and so does everyone I met there. But of course, you have to find out yourself, and only because they saved my life, I cannot guarantee they can do the same for every one, but I am pretty sure they can offer you a great chance. Best of luck to you!
Hi I've just had recent results to my scan and its not good..I'm also Tripp!e neg breast with Metz to chest lymphs, supraclavical,and now liver..I want to persue immunotherapy possibly at Hallwang and I. Keen to learn of your experience. Their website is so vague..I have also had an interest in GCMaf for a while and wondered if you did this also ..many thanks Fx
Hi Kathya. Are you replying to me. I have secondary breast cancer, and you can see the treatments I had in Germany on my post. I hope they are working. My mets are er and pr+ and her2-. I'm on Faslodex and Xgeva here, and had Surviven, GP2 and HER vaccines at Hallwang along with infusions of many vitamins. Xxxxxxx
Hello from Australia
I really have to agree that Hallwang is good and most certainly the kindest and most caring place you could go to for cancer treatment.
I have lobular cancer bone mets and went to Hallwang last August for the first time. They sourced and tested my tumour for what I would respond to, I had immune infusions and two different vaccines. They tested for HLA positivity and so recommended GP2 vaccine which I had in December. My December visit was only for five days, after my two weeks stay in August. Now I will go back in May for a booster, for maybe a day. It is costly in the beginning, but the cost has got less and less.
The trip to Germany from here is the worst part as it's so long, but hopefully it is worth it.
I have to say too, that I tested negative for Epcam treatment, it's good that I was tested for it, as if they would have given it to me just like they do everything in sequence here for everyone without looking at a persons response, I would have spent lots more money, had side effects for no useful purpose.
I think Hallwang is very good, and the most caring lovely people.
the cost thing is certainly an issue, it is not cheap. But the reason for this is that the clinic is private and as a patient you have to pay everything out of your own pocket. I did some research on the drugs I got, and they are really expensive anywhere you get them-difference is that if you get them as a trial patient or at a university hospital you do not have to pay for them, so you are not aware of the cost. I was lucky to have enough to afford it, but I can totally understand that not everybody is. The only thing that I can tell you is that the costs go down a lot every time I go there. So, the first two visits were the most expensive because tumor load was so high that I needed lots of treatment and also developed some complications, needed extra antibiotics, etc..obviously these were costs that were not planned. The third time around I only stayed 4 days for maintenance treatment as an outpatient, and now I only go there twice a year for a boost, and stay for 2 days. So, if you respond to treatment, it gets better. That is how most ppl I met at the clinic experienced it. I also met one patient who told me that he spent houndred thousands at other clinics ( I think he visited 3 before!) and this was at then end much more expensive than going to Hallwang directly. So you should really think about where to spend your money.
If you are eligible for a trial, that is always good and worth looking into. I was not, so I had no other option. I had mets in the liver, lung, bones and peritoneum.
But there is one thing you said which is really important: PLEASE do not wait too long before you start treatment-anywhere, if Hallwang or somewhere else. There were ppl that I saw arriving at the clinic, where I thought not even Hallwang can help them. In many cases, they still did. But they are human doctors, no magicians. You have to give yourself the best chance for survival, so obviously that is not the case when you are already in a coma. Time is so precious.
As I had a very positive experience and met so many other patients with the same positive outcome, I can only recommend going there.
I'm sorry to hear of your sister's situation. It must be particularly disappointing for her after reaching 5.5 years.
I have metastatic triple negative breast cancer and went to the Hallwang Clinic last year. Amongs other things, I had some peptide vaccinations and anti EpCam immunotherapy. I'm happy to chat about it with you if you would like. Have you been on the Forum for a while? I noticed, below, that the Bonita - a BCC moderator - said you need to have posted 5 posts before they allow private messaging (PMs).
Can I ask you what kind of breast cancer you had? My sister has triple negative which I believe is one of the hardest to treat with the greater risk of mets
My sister had a double mastectomy 5.5 years ago - due to triple negative cancer. Over the last week we have found that she has mets on her brain, liver and hip. They too are looking into Hallwang Clinic and in particular it was for the Immunotherapy. Has anyone on here ever had triple neg, then Mets and been to this or any other clinic?
Susan, Diane and Matt,
thanks for posting this information. I have been in contact with the Hallwang but havent pursued anything yet. I have the 'cost' dilemma...do i have the initial tests knowing i may not be able to afford more than one round of treatment (if that).....it seems it costs into the tns and hundreds of thousands...have you experienced this? I know you cant put a price on life but you can either afford it or you cant. I am currently waiting to see if i am eligible for a trial involving liquid biopsies so maybe this is linked to immunotherapy??
I dont want to wait until i'm too ill to travel to the clinic but dont want to rush into things. Do you mind me asking where your mets are/were , what treatment you had and how long it goes on for??
I have been in touch with a couple of people who have been and its great to hear from some more, especially Matt as you are the first male sufferer i've come across on this site.
Any further info you could share would be great. best wishes. x
I read this thread with great interest, I am also reading other blogs/threads and there is always sth about Hallwang, too. I already posted it elsewhere, but I also had immunotherapy at Hallwang, now more than two years ago. I had breast cancer and i am Male. That is very rare but just as bad. I have been in complete renission for 2 years now, so I can only speak highly about their treatments, they are indivual and unique for every patient.They performed a tumor-associated antigen test and Next Generation Sequencing on my tumor tissue in order to find the best targeted treatment for me, as these tests show genetic modifications or expression of certain surface markers found on cells. So, in your case a totally different expression pattern could show up, which means there is a different medication or vaccine for you. That is what I like about their approach-it is not one drug for all, but really individual-based.
I also Love that they Know what they do and keep up with research. The doctors there have a profound research background and knows their stuff. I have been to clinics that offer you some Kind of vaccine or so-called immunotherapy without understanding the rationale behind it. I also recommend getting Information from Hallwang Facebook site, they are actually the only clinic i Know that posts real scientific data from ongoing trials and not some opinions or weird data of unkown origin. Good luck! to you all!!
I just found this!!! I actually saw her at the clinic-how amazing!!
So great to read this. I am also being treated at the clinic- with great success. my doctors back home could not believe it!!! But sometimes I do get the feeling it is better not to tell some doctors you are going abroad to seek help. Have you also made that experience? It is a pity, I know, but it seems when ppl do not understand what others do they get mean. I have also read that so-called scienceblog composed by a surgeon who has no idea about cancer immunotherapy but still no problem commenting on it and saying things about the Hallwang clinic that are just not true. I saw that many ppl read his blog and are understandably worried, but I can assure you that what he says is just a product of ignorance and malevolence, bc Hallwang clinic is offering something he cannot. I think you are totally right, that patients know best. I studied biology and did a postdoc in immunology so I DO understand what Hallwang offers and read all the science papers before going there, and was totally amazed by their immunotherapeutic strategy. And I am so grateful it worked for me. I also do not know for how long, but I do not blame the clinic for me not knowing how long I will live;) I am just happy I am still here. So do not let yourself get discouraged but form your own opinion on new treatments, and always try to talk to patients that have been there.
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I have been treated at the Hallwang clinic, so I can tell you that they are purely professional and honest. They never promise a cure to anyone, but tell you what they can offer you. If it were not for Hallwang, I would be dead by now, as would be my friends that I met there. I was diagnosed with metastatic breast cancer and put on palliative care! Of course, no one knows how much longer I have, but I do know that I would not have had the last 6 months if I had not had treatment at Hallwang, and since I am cancer free now I hope for 6 months more, and maybe then 6 months again, and so on. And clinical trials? I tried getting on so many, but there was always something they did not like, so I could not join any. I think it is easy to say: Just go participate in a trial!. It is hard to get into one.
The Hallwang clinic already exceeded my expectations! I strongly believe that in a couple of years, the treatments Hallwang offer will be routine, but cancer patients do not have time to wait around for that. I am still alive. I think that is what counts. I can only recommend checking them out, because it is hard to know what is right with all you read in the internet. There are ppl who belittle the clinic without knowing what they do, only bc they cannot understand why patients go there. I checked out some of the critics-is it coincidence that some of them work with the pharma industry or are themselves oncologists with little success promoting their own products? Well, you should always get different opinions, but I think the patients´opinions and especially their success should be most important.
I have been treated at the Hallwang clinic, so I can tell you that they are purely professional and honest. They never promise a cure to anyone, but tell you what they can offer you. If it were not for Hallwang, I would be dead by now, as would be my friends that I met there. I was diagnosed with metastatic breast cancer and put on palliative care! Of course, no one knows how much longer I have, but I do know that I would not have had the last 6 months if I had not had treatment at Hallwang, and since I am cancer free now I hope for 6 months more, and maybe then 6 months again, and so on. The Hallwang clinic already exceeded my expectations! I strongly believe that in a couple of years, the treatments Hallwang offer will be routine, but cancer patients do not have time to wait around for that. I am still alive. I think that is what counts. I can only recommend checking them out, because it is hard to know what is right with all you read in the internet. There are ppl who belittle the clinic without knowing what they do, only bc they cannot understand why patients go there. I checked out some of the critics-is it coincidence that some of them work with the pharma industry or are themselves oncologists with little success promoting their own products? Well, you should always get different opinions, but I think the patients´opinions and especially their success should be most important.
hello. I am new to this forum. Am going to hallwang again for screening and would like experience of someone whose been there. Not sure how to pm ?
DebHummingbird - I've been to the Hallwang. If you want to PM me I'll discuss it with you.
Vikkio - I can understand your worries for vulnerable people but I think you'll find the people who have been there for treatment are very pleased with the way they've been looked after and the outcomes. I know my own oncologist is skeptical and worried about me going there. Not everyone is going to have a positive outcome, however, I have met people while there who were desperately ill and a number of them are currently NED since their targeted treatments. The cost is a big downer but some people have enough to cover it. The 19% German VAT makes up a significant part of the expense.
Hi ladies I want to go to the German clinic but when I asked my Oncologist she said it's not good for me with my Mets being in my liver and it being breast cancer????? Help please xx confused .com
Be very very cautious. A lot of stuff has been written about the hallwang clinic for getting people's hopes up and taking their money....scientific studies too. Plus I do find it odd that the website does not mention a single oncologist by name there it's list. You might be better asking for a referral to a specialist cancer hospital in the Uk or getting on a clinical trial which would have similar initial results. The story in the paper over the weekend leaves many questions unanswered. Patients and vulnerable people are selling their houses to fund Hallwang treatment...