Hallwang Clinic #15 – Some lessons learned and helpful tips

Hallwang3

The bus-stop at Hallwang

Updated March 2016 – For more information on GcMAF, please join the GcMAF and GcMAF Cancer forums on Facebook – they are closed groups, so you have to wait for your membership to be confirmed.  They contain up-to-date information on sources of GcMAF, and also feedback and contributions  by people who are using GcMAF.

Updated 1 January, 2015 re. the importance of having a companion when you go for the trans-arterial chemoembolisation procedure with Professor Vogl in Frankfurt.

 

Here is a summary of my experiences which includes information on how to get to Hallwang Private Oncology Clinic, accommodation, a few other bits-and-bobs which didn’t fit into the posts I wrote previously, and how to send an enquiry.

Some people have accused me of being biased in favour Hallwang, and it’s true that I haven’t been to any other German cancer clinic, so there may be an element of truth there.

However, my experience at Hallwang was largely positive [apart from encounters with pointy sharp things] and as far as anyone can enjoy an experience in a cancer clinic, I was blessed in my stay there by the magnificent staff, the doctors, and the support, laughs and camaraderie of the patients there.  Had I gone there on my own, it may not have been such an uplifting stay.

Also, I met a few people who had been to other cancer clinics around the world (including other German clinics and Mexican clinics), and they had positive things to say about Hallwang.  One of the patient’s wives, a very gracious Southern-type belle from California with exacting standards said: “My god, Hallwang is like a spa!  If you wanna get cancer, get it at Hallwang!”

It’s therefore up to you, the reader, to do your research if you’re thinking of going to a German cancer clinic.  There are many clinics in Germany, and all of them have their good and bad points, and none is perfect.

23 July 2014:  Before you go to a German cancer clinic, get written confirmation from them that the chief doctor, or an oncologist will be on-site for the length of your stay.  This applies to any clinic which is dependent on a “star” doctor, and Hallwang which is currently going through staffing changes.

What you’ll get out of going to a German cancer clinic:

– more variety of treatments and off-label use of medication than in the UK and US

– private personalised healthcare which means that you generally get faster response times, e.g. 24-hour Pet Scans with a personal report and discussion with the radiologist.  You should also receive a daily consult with one of the doctors whatever clinic you go to.

– very intensive treatments.  Most of the German cancer clinics seem to operate on a 3-4 week treatment cycle, and they try to cram as much as possible in these time frame.  Even the Paracelsus Clinic in Switzerland has a 3-week treatment cycle.  If you don’t like needles, ask for a PICC line to be put in

– great place to acquire new knowledge from experts

– staff who are trained and dedicated to taking care of people with cancer.

– a community of people who share the same goals, i.e. healing from cancer, so there’s no explaining, no excuses that need to be made for having cancer.

– a community of people with a good sense of humour, and willing to share their knowledge and experiences

– if you are travelling with a partner who is a carer, the clinic will often have other people who are also there with their partners and they form an informal support network.  Cancer is tough on the carer of the patient too.  While I was there, Hallwang were very good at providing support to these carers.  When one of the long-term stay patients, Bob, died, they organised a wake to celebrate Bob’s life.

– a sense of mortality.  A lot of people who go to German cancer clinics often have end-stage cancer – why else pay Euro10K per week for an operable tumour?  So you will find yourself surrounded by people who are seriously ill.  It drives home the message that cancer is a bitch and can be fatal.  Be prepared to see patients die at the clinic, or lose friends after you leave the clinic.

What NOT to expect:

– don’t expect guarantees of an instant cure.  It’s hard to get a cure in just 3-4 weeks.  Results depend on the individual’s response to treatments, so don’t be disappointed if the results aren’t what you expected.

Do expect to go back for more than one stay depending on the stage of the cancer.  I know someone with metatstic colo-rectal cancer whose first stay was 10 weeks’ long and he’s been back for another extended stay since.  Another patient stayed at the clinic for 9 months!  If you have to go back 2 to 3 more times, you could end up spending a lot of money.

This high cost of repeated treatments applies not just to Hallwang, but to other German oncology clinics.  I had a friend who had metatastic cancer of unknown origin who went to Herzog’s 9 times.  That’s an awful lot of money.  Another friend with metastatic breast cancer went to Klinik St George and was NED after the first course of treatment.  Unfortunately, the cancer returned 3 months later.

What I’m trying to say is, German cancer clinics do sometimes work miracles, but oftentimes all the treatments can do is buy the patient more time.  We’ve all heard of miracles that happen in this-or-that clinic and we hope and pray it’s us this time.  I think all we can do is hope for the best, and not get too attached to the outcome which is easier said than done, I know.

If you do get a good outcome from the treatments, don’t rest on your laurels – keep an eye on the cancer!

– don’t expect a restful time – treatments are intense because German cancer clinics try to achieve in a shorter time what would normally take months in the UK and US.

And watch out for Rudy, the Hallwang village rooster. He starts shouting about how wonderful he is and how he just wants a lady to start the day with, at about 4am. [I’ve heard rumours Rudy is now chicken soup – this I have to witness!].  I think the only rooms where he doesn’t sound so shouty is in the apartments.  I suspect he lives in one of the houses in the village at the back of the clinic.  When I find out his address Dr Kopic has promised to get me a gun.  In the meantime the only revenge I got was the morning I woke up BEFORE 4am, and when he started crowing, I crowed back!

– the patients at German cancer clinics tend to be of a more mature age and many are quite ill. So don’t expect Ibiza on a Saturday night.  Be prepared to entertain yourself with DVDs, books, the piano or guitar in the dining room.

– don’t expect 100% holistic treatments.  Unless you go to a German clinic which does NOT use chemotherapy, expect a German oncology clinic to use chemotherapy in conjunction with holistic treatments.  Think integrative rather than alternative.

There are 100% holistic cancer clinics in Germany if you don’t want chemotherapy, or you can go to the Paracelsus in Switzerland.  Hallwang is not particularly hot on the holistic treatments, but they do use vitamin and biological infusions  to boost the immune system.

If you go to Nesselhut in Duderstadt, he has a very good naturopath, Cindy – Peter Trayhurn swears by her.  23 Dec 2013 update – I have met Cindy and my goodness, she is the epitome of health!  She is one of the few people who really glow with health.  A fantastic walking advertisement for all her therapies.

– don’t expect a holistic raw vegan diet.  If you want raw vegan, your best bet is the Hippocrates Institute in Florida.  If you want Gerson, go to a Gerson Institute.  German cancer clinics are into meat-and-two-veg and some Budwig at breakfast.  If you are a raw vegan, then be prepared to negotiate.  [I’ve heard that Herzog’s does a decent buffet for all meals.  Hallwang has started doing a small salad bar for dinner which is great news.]

– don’t expect fantastic English language skills.  You are in Germany after all.  Most of the staff at Hallwang have a reasonable level of English.  The psychologist/counsellor, Carolyn, had the best English, but then she studied in America.  The doctors have adequate English, but I still needed Grace to make sure that all parties understood what was required.  Dr Kopic is a polyglot, but his main languages are Croatian, German and Russian, with English being a second.  The doctor with the best English language skills at Hallwang is Dr Greg Schwarz (who is Australian!).

– don’t expect 100% focus on you all the time.  German cancer clinics tend to be over-subscribed, and in such cases, the doctors will be overworked.  Your best bet is to go with someone who will be your advocate or someone who understands how the system works, like Grace Gawler.  When Hallwang is at capacity, it can be disorganised.

A friend who went to Klinik St George said that she only ever saw the head doctor on a few occasions, so it looks like being overworked is something that’s common to a lot of German cancer clinics.  I’ve heard that Dr Herzog has a very good reputation with his patients for consultations.

However, when I was at Hallwang, my personal experience was being visited by a daily line-up of all the doctors, in my room.  It was an unnerving experience – rather like an X Factor judging panel, only for cancer! [“Today, Dr Kopic, I’m going to be a Removab Antibody!”]

– don’t expect a cheap option.  Expect to pay between Euro3,000 to Euro10,000 per week.  The average stay is around 3-4 weeks’ long.

After a few weeks of forking out large sums of money, it can be easy to lose sense of the money being spent.  A friend of mine returned home, went on a shopping spree and bought clothes she couldn’t afford, and had to go back to the shop to return them.  Her excuse was:  “I thought I was at Hallwang and still on Hallwang money!”

Bills are usually presented at the end of the week.  If you find yourself running out of money, go immediately to the doctors and get a cheaper treatment plan.  My mistake was to panic and think that because I was in Germany I had to go for every infusion because I didn’t want to regret not doing them.  I met people who were there on their second or third or fourth visits and they were more relaxed – they stayed outside the clinic and only came in once or twice a week for treatments which saved an awful lot of money.  They lost out in terms of not getting the full social experience though.

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Finally, Hallwang is not the only German cancer clinic offering cutting-edge treatments, but it is one of the better clinics, because it seeks out and outsources to specialists, what it can’t do in-house. It is also, to the best of my knowledge, the only clinic offering the tri-functional antibody, Removab, used off-label.

Hallwang is not perfect and mistakes are made.  Remember, the doctors are humans, too!

Other clinics to explore are:

Praxisfurgemeinschaft fur Zelltherapie [Practice for Cell Therapy] – Prof Neselhut is one of the world authorities in immunotherapy, including dendritic cell therapy and gamma delta cell therapy – in Duderstadt.  However, Hallwang does offer the RGCC Dendritic Cell vaccine, something I’m going to get in the future.

Practice
Dr. med. Siebenhüner – Praxis clinik Siebenhuner – 
Erweiterte-medizine
– Dr Gerhard Siebenhuner offers insulin potentiated therapy, and among other infusions, 2DG, B17, intravenous curcumin (one of five clinics in Germany to have this exclusively) – located in Frankfurt.  I have met Dr Siebenhuner and I found him to be very friendly, open to new ideas, and ready to work with you, the patient.  His clinic is very modern, tasteful and pristine.  He is also located about 30 minutes from Prof Vogl’s practice which makes it an ideal clinic for hyperthermia post TACE.  There is no in-house accommodation, but patients stay in nearby hotels.  Both Peter and Ren who were at Hallwang went to Dr Siebenhuner’s and had very good experience in terms of care there.

Fachklinik Dr. Herzog – famous for hyperthermia and chemotherapy.  Dr Herzog has a sterling reputation.

In Austria, Dr Ralf Kleef’s clinic has an excellent reputation. It offers both traditional standard-of-care treatments, as well as more innovative metronomic chemotherapy and dendritic cell vaccines:  http://www.dr-kleef.at/en/dr_ralf_kleef

Dr Florian Schilling
Florian Schilling studied pre-clinical medicine at the Ludwig-Maximillian-Universitat Munchen (LMU), and then trained as an alternative practitioner, with his own clinic since 2006, specialising in integrated and complementary tumour therapy, CFS/ME, general regulatory medicine and detoxification.  He has been a lecturer at the Paracelsus College in Munich since 2007, and lectures both in Germany and internationally.
Dr Martin Stoppler
 
Dr Martin Stoppler studied medicine from 1980-86, and specialised in general medicine in 1992 and naturopathic treatments in 1996.  He has been practising in his own complementary therapy clinic since 1992.  He is a founding member of the registered society Forum of Orthomolecular Medicine.
GcMAF clinic in Switzerland
A number of readers have asked me about my experiences in the GcMAF clinic in Switzerland.  Unfortunately, I was made to sign a non-disclosure agreement about my treatments there so cannot post on any social media – this, to me reeks of insecurity and cover-up.  So if you are looking for information on GcMAF from the patient-experience, please contact the Facebook group:  https://www.facebook.com/groups/439553602725764/.  I have been told that the GcMAF offered by Sansei-Mirai may be more potent and stable.

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Airports

There are three airports for Hallwang:  Frankfurt, Stuttgart and Baden-Baden.  Frankfurt is furthest away from Dornstetten-Hallwangen( the village the clinic is located in).   Stuttgart and Baden-Baden are about equidistant to the clinic.

Use skyscanner.net for live-updates of fares.

Taxi/cars

Taxi to Hallwang clinic

The clinic is located in the very small town of Hallwangen, in the middle of the Black Forest.  To get anywhere, you need a car, or take a taxi or bus.  There is a local supermarket, but that’s it.  You’re stuck in a sleepy, countryside setting.

The clinic has an account with a local taxi company (Schumacher in Freudenstadt) who will come and pick you up from the airport.

The cost of the trip is cheapest from Stuttgart to the clinic, and then from Baden-Baden to the clinic, and finally Frankfurt.  There are more daily flights to Frankfurt though.

The taxi driver will meet you in arrivals with a placard with your name on it.  The taxi is usually a comfortable Mercedes.

At the time of posting, the cost of the taxi service from Stuttgart is Euro150 and Euro310 from Frankfurt Airport.

Because the cost of the taxi fare can run to hundreds of Euros, it is cheaper to rent a car from the airport and drive to Hallwang.

From Frankfurt the drive will take about 3 hours.  From Stuttgart, 2 hours.

There is an alternative and that is to get the train from Stuttgart to Freudenstadt (the nearest town to Hallwang) and then a taxi.

If you need to go to Prof Vogl in Frankfurt for TACE, in the interests of conserving your energy for healing, I suggest getting the taxi and not getting stressed about driving to Prof Vogl and navigating German roads.

1 January 2015 – Please note – this taxi service, and the driver who picks you up and makes sure that you are OK is worth it’s weight in gold.  The German system is efficient, but it does make mistakes.  It has recently come to my attention that some patients have been left on hospital trolleys in the corridor after their TACE procedures, or no one has come to collect them after the rest period after the TACE procedure.  So you must have someone to be there to make sure that you are not left stranded in a huge hospital with staff who do not speak English!!!

There is a free taxi service from the clinic to Freudenstadt twice a week.  Otherwise a taxi to Freudenstadt costs about Euro25 one-way.

The cheapest way of getting into Freudenstadt is by bus – I think it’s a couple of Euros each way.

Accommodation

Clinic apartments

Depending on your condition, you may need to stay in-house, in the clinic itself. The clinic also has apartments for friends and family and patients who do not need to stay in-house, but still want to be close to the clinic.  These patients may be in-between courses of treatment, or only require treatment/infusions on a few days per week, so it is cheaper to stay out and only come into the clinic on the days of treatment.

B&Bs

There are also B&Bs and apartments for rent in Dornstetten-Hallwangen which is the village the clinic is located in.  The clinic can supply you with a list of such accommodation.  It is often cheaper to stay in these private rentals; however, bear in mind they may be a long walk away, and if you are not physically robust you do not want to jeopardise your health by wasting your energy in going to and from the clinic.

Patients who are accompanied by their families (especially children) are welcome, but the families should stay in the B&Bs or apartments while the patients have their treatment.

Why stay in-house?

The clinic prefers that patients who are undergoing intensive treatments, or are physically weak, to stay in-house or in the apartments, so they can be monitored.  That’s because there have been instances of patients who have insisted on staying in the village, and ended up having medical emergencies.

I had a friend this year who did just this – he was weak from an immune system collapse caused by a c.difficile bug he was recovering from in Australia – he moved out to a B&B, suffered another collapse and wasn’t found until a day later when his condition had deteriorated.  So if the clinic kicks up a fuss about your moving out, bear in mind they may have your well-being at heart, and are not trying to make money out of you.

The central heating is excellent at Hallwang, it was much warmer than my house in London, so much so I joked about not going home!  But there is no air-conditioning so bear this in mind if you are planning to go to Hallwang in the summer.

If you are from the Southern Hemisphere, the winter at Germany will come as a shock.  It is colder at Hallwang than in Frankfurt because of the altitude.  While indoors the central heating means you can probably wander around in T-shirts, jeans and a sweater.  But if going out, pack warm clothes, SmartWool socks, thermals, sturdy walking shoes.  The trick is to layer – thermals, a sweater, a fleece, then the main jacket, a hat and gloves. If you cannot stand the cold, then consider travelling to Hallwang in summer.  But please – do not let weather be the determining factor for when you go to Germany.  Go sooner than later!

A few more tips

– budget for 25% more than the original estimate because what can go wrong will go wrong and costs will soar.  For example, in the first week I had to have an emergency Pet Scan which cost me Euro2,000.  That was a big shock to my budget and gave me sleepless nights.

– get as many tests done in your home country, on the public health service – make sure they are up-to-date. This will save you from having to have tests done in Germany which you will have to pay for.  Any tests and services done via Hallwang incur a German VAT charge of approx. 19%.  This includes the RGCC chemosensitivity test.  So get the RGCC test done in your home country.  It will be cheaper, and as it takes about 3 weeks’ to process, get it done 3 weeks’ before you leave for Hallwang.  In Australia, contact Grace Gawler who will be able to direct you to a doctor who can take the bloods.  In the UK, contact Dr Nicola Hembry, or Dr Siegfried Trefzer.

– consultations with the doctors:  if you are travelling on your own, or not very good at taking notes, consider recording the consultations.

There’s a very good recording app for Android smartphones called PCM Recorder.

– Beware Telephone Charges.  If you have to call home, use Skype.  The telephone charges at the clinic are on par with a hotel’s.  A friend of mine got whacked with a Euro2000 phone bill because he called home every night for hours at a time (home was Australia!).  You might be better off buying a pay-as-you-go SIM from the local Netto supermarket for your mobile phone.

How to enquire about treatment at Hallwang

Send your e-mail enquiries to info@hallwang-clinic.com

The clinic requires the following information:

  • your contact details
  • latest medical reports, medical history
  • present medications and therapies
  • latest lab findings and histology reports
  • imaging diagnostics (MRI, CT, PET, ultrasound/sonography)

I listed this information in a table, in chronological order.  Because I’ve got one of those weirdly-organised minds, I also labelled all my clinical letters, lab and histology reports and scans with Appendix A … B … C etc. and cross-referenced them to the items in the medical report.  That made it easier for the doctors to work out the chronology of the medical history and supporting documentation.

I scanned all this information and sent it in pdf format to the clinic by e-mail.

If you don’t have e-mail, the address of the clinic is:

Hallwang Private Oncology Clinic
Silberwaldstraße 34
D-72280 Dornstetten-Hallwangen

Telefon: +49 7443 964 24-0
Fax: +49 7443 964 24-99
Email:  info@hallwang-clinic.com

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