Germany clinic

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Girl111
Posts: 234
Joined: Fri Dec 06, 2013 4:43 pm

Germany clinic

Postby Girl111 » Sat Jan 10, 2015 3:09 pm

Has anyone on here been to or know anything about the cologne cancer centre in Germany ? It seems they do a lot if cancer cell treatment , in particular dendric cell vaccine .

I am looking into it for my dad and the reviews are both bad bad good so it's confusing .

Tina
Dad diagnosed stage 3 cc nov 13
Bowel resection march 14
Started xeloda
1 liver met and 1 node ( small)
Started irinotecan - failed
Poss nano knife now and oxyplatin
Hope the chem works !

lpas
Posts: 1009
Joined: Wed Nov 19, 2014 11:11 pm

Re: Germany clinic

Postby lpas » Sat Jan 10, 2015 3:57 pm

Is this the one you mean? If so, this doesn't seem like a very positive review:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=46233&hilit=Germany
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & Celebrex
2/19 clean scope
5/19 clean-ish CT (watching a new 4mm lung thingie--likely mucus plug)
Ongoing celecoxib, cimetidine & other targeted supplements
Mom to a 5 & 7yo

Girl111
Posts: 234
Joined: Fri Dec 06, 2013 4:43 pm

Re: Germany clinic

Postby Girl111 » Sat Jan 10, 2015 5:39 pm

Hi

Thx for the post . This one is called cologne cancer centre Germany . It seems to offer great treatment but I am trying to look at reviews on it .
Dad diagnosed stage 3 cc nov 13
Bowel resection march 14
Started xeloda
1 liver met and 1 node ( small)
Started irinotecan - failed
Poss nano knife now and oxyplatin
Hope the chem works !

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Voxx66
Posts: 1844
Joined: Wed Jul 24, 2013 10:22 pm
Facebook Username: Michael Void Ward

Re: Germany clinic

Postby Voxx66 » Sat Jan 10, 2015 5:59 pm

I'd be very careful with German cancer clinics. Some of them push extremely controversial treatments in order to separate you from your money.
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: Germany clinic

Postby KWT » Sat Jan 10, 2015 6:16 pm

When I read Rens blog and all he went through I don't know how one could expect to recover.

Val*pal
Posts: 860
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Facebook Username: Valerie Barkus Kantner
Location: Metro Detroit, Michigan

Re: Germany clinic

Postby Val*pal » Sat Jan 10, 2015 9:50 pm

When my husband was undergoing chemo, we met a gentleman in the clinic who had gone to Germany for treatment. He said he came home worse than before and went back to traditional chemo. He was out money, out time, and wanted everyone to spread the word that it was a rip-off. I have no idea if it's the clinic you're referring to, but one thing to keep in mind is that if this German clinic had "the answer" to cancer, there would be a stampede to its doors. If it sounds too good to be true, it usually is.
DH dx'ed May '11, age 62
Jul '11: resection Stage IV
10/11: 6 mo Folfox
8/12:thyr canc, surg/tx
2/13: peri mets
2/13: Firi/Avas
6/13: Ok
8/13: break
10/13: Lung, peri, mets
10/13: Firi/Erb
1/14: Erb Fail; spread
5/14: Tx stopped
6/20/14: At rest

Lisahopes
Posts: 328
Joined: Wed Oct 17, 2012 2:09 pm

Re: Germany clinic

Postby Lisahopes » Sun Jan 11, 2015 6:40 am

I live in Germany and those private clinics do indeed have very dodgy reputations. I didn't really consider them for my mom.
Daughter to Mom, 65, Stage IV with mets to liver, lungs and peri.
Dx 2006, Stage II.
Regular check October 2011, Stage IV established.
She has had Oxi, Folfox and Xeloda, now Avastin.
Progression.
Mom died on April 5th 2013.

JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Re: Germany clinic

Postby JDinNC » Sun Jan 11, 2015 9:46 am

I have read where patients have gone to Germany for special procedures which are not offered in the US and Canada and did well. And I've read stories where patients were told nothing more could be done for them in the US. And decided to go to Germany to a "reputable" clinic where they drained the family of their money with months of treatments only to have them sent home to die. The patient was so long gone, that once home, all the family could do was watch her die.

So please be careful with your decision.
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

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exaussie
Posts: 618
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Location: Silverton OR
Contact:

Re: Germany clinic

Postby exaussie » Sun Jan 11, 2015 3:20 pm

UUGGGGH I am so nervous for my cousins son. he decided to go to Hallwang clinic He is stage 4 lung cancer, he tried holistic treatment in US because chemo was only going to give him 2 years he said. He got 25% growth in 2 months. Now he is in Germany, he can't work and has 4 children 8-6-4-2 and this clinic is charging him $80,000
He thinks he will get a treatment or two and then he will come back to US for a couple weeks and go back...His immune system is weak and all that plane travel,,,, can't talk him out of it. His mom is distraught.
DS 26 yrs old diagnosed 6/13 T3N2aM1b
Resection 6/13
6 rounds chemo folfax
12/13 Fissure
hernia surgery 12/13
5 months break
Maintenance chemo 3/14
Crazy growth. Liver failing. Folfox and vectibex 7-29-14
Chemo failure Hospice 8/26
Left us 8/28

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lilacbreastedroller
Posts: 90
Joined: Thu Sep 05, 2013 10:25 am

Re: Germany clinic

Postby lilacbreastedroller » Sun Jan 11, 2015 8:34 pm

[****oops - sorry. I reread your original post and saw that you were looking for information about a specific clinic in Cologne. Sorry, I didn't go there. Below is info about other German clinics. To evaluate yours, as a suggestion, you could research what type of dendritic cell therapy they offer, look at US clinical trials and see if their angle might also be on trial, and research whether the doctors at the clinics have published anything in legitimate journals or have presented findings at the big conferences. ASCO is for medical oncology, and SITC is the immunotherapy society. ]

Hi. I went to a different German clinic - the one in Duderstadt, Germany ran by father and son Drs. Nesselhut http://www.immune-therapy.net/en/

These people are legitimate, and have presented papers at ASCO (link to one below)

http://meeting.ascopubs.org/cgi/content ... suppl/3065

I did the dendritic cell (DC) therapy in 2013 and it kind of worked, til it didn't. I had mixed results, some shrinkage, some growth. All in all I don't regret the experience and didn't have to pay anywhere close to $80k. As an American, I went for the cell harvesting in Germany, but received the monthly shots in NYC which was a lot cheaper. I don't regret doing this, and maybe it extended my life. I researched the clinic and treatment as much as I could prior to making a commitment. I am not a doctor or a scientist, so much of the scholarly/scientific information on the 'net was way over my head, but at least there was some. There was a lot of promising literature about dendritic cell treatment, and a bit about the Nesselhuts' work. Also, I found many clinical trials for DC treatments so figured this couldn't be completely bunk. And I read individuals' blogs for Nesselhut patients, and while some were thriving, many of the people who sought this treatment had died while on it, or shortly afterwards. This was not encouraging but good feedback for me to make an informed choice.

I mostly post on the CSN board - I have lurked here for many years - and there was a guy on CSN who did go to Hallwang, which is what most other people on this thread were talking about I think. Hallwang is apparently pushed by a medical tourism company in Australia called Grace Gawler. This guy on CSN, an Australian, was talking about Hallwang treatments using an EU approved drug (off label for MCRC) called removab, I researched removab, talked to my onc, and even sent info about it to a friend of a friend who is a pharmaceutical industry consultant, checked the clinical trials (US) database for anything in the queue on it, and found next to nothing. There is no chatter about it. I believe that "a good product sells". If it really was a wonder drug for MCRC, there would be chatter. Nope. Crickets. So I'd heard of rich people/the 1% getting treated with off-label cocktails of all kinds of drugs, even in the US, and I figured this was one of those deals. Mmmm. Unregulated medical treatment for rich people with deep pockets? Not for me. Without data proving its effectiveness, I really didn't want to take a chance on it. Removab is supposedly like avastin, a monoclonal antibody, but removab is a tricloncal antibody, or something (like I said, I don't understand the science.) I got twelve hits of avastin. So one hit of removab is supposed to cure me?? I didn't think so, and I couldn't afford twelve hits of an off-label drug out of pocket anyway.

Somebody else got TACE in their liver at a clinic in frankfurt , Germany (not Hallwang). That sounded awful. The Dr who performed this, Dr. Thomas Vogl, might be a somebody in the cancer world. I don't know. I didn't research this because it sounded terrible and I would never do it.

I don't think all German private clinics are dodgy, though. My godfather was German, and got cancer in his 80s/90s and went to a different private German clinic. I forgot the name of it, and can't find the brochure. But I think he went for the wacky palliative care that we don't really do in the US, like mineral baths and oxygen treatments. He was a smart guy so I doubt his clinic was dodgy, but at like 90 he didn't have much of a chance anyway. He got some comfortable treatment for his symptoms and just died. When he and my godmother were younger and healthier, they took me to Baden something to the mineral baths (one locker room for both sexes! NOT American, definitely not) and we soaked in and drank the nasty tasting water. The coolest therapy they had was water spilling over a huge pile of twigs and patients wanting really fresh air were supposed to breathe the mist coming off of the twigs. That was so cool. I tried it and it really was good air and cleared my head. So some of those clinics do those sorts of things. If I remember from the brochure and what his daughter told me, his clinic had a mix of traditional medicine and palliative treatments.

hope this helps
Karin
dx 6/1/12@45yo
RT, 4 liv, 5 lung
7/12 FOLFOX
2/13 Xeloda 4k mg/d
7/13 DC VAX,1k mg/d metro Xel
11/13 Erbi, Irino
6/14 clinical trial lirilumab, nivolumab
9/14 Stivarga
1/15 clinical trial immunotherapy (young TILs)
RT, mets to liv, lung, adrenal, lns

crhamilton
Posts: 11
Joined: Tue Dec 30, 2014 2:35 pm

Re: Germany clinic

Postby crhamilton » Thu Jan 15, 2015 9:09 am

Hey there,

The solution is really easy -

Why don´t you phone the german clinics and talk to the physicians? This helped me a lot to decide where I finally wanted to go to -
Quickly, you will find out whether they are taking time and responsibility for your case - I just called all the clinics I found, much faster than waiting for any short email responses - in the most cases it was quite difficult to get a knowledgeable physician to talk to/ wow, I was really surprised /- finally, I found somebody and stopped my search - hope that you get this experience as well. The blogs haven´t helped me so much since the recommendations were inconclusive - always good and bad recommendations. Here =) again a good one at least for me -without any reservations I can recommend the Hallwang Clinic - it´s just great how they took and still take currently care of me, right from the first contact with Dr. Nolting.

Just going for DCs wherever Germany US Australia China =), seems to be an inefficient mono-therapy - as described for ages - just go to pubmed. As I learned, the next generation of DC Vaccination ist the combination of the so-called checkpoint antibodies and a multi targeted therapy, lifting it up to one of the most recognized therapies.

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Germany clinic

Postby Maia » Thu Jan 15, 2015 3:00 pm

crhamilton wrote:Hey there,

The solution is really easy -

Why don´t you phone the german clinics and talk to the physicians? This helped me a lot to decide where I finally wanted to go to -
Quickly, you will find out whether they are taking time and responsibility for your case - I just called all the clinics I found, much faster than waiting for any short email responses - in the most cases it was quite difficult to get a knowledgeable physician to talk to/ wow, I was really surprised /- finally, I found somebody and stopped my search - hope that you get this experience as well. The blogs haven´t helped me so much since the recommendations were inconclusive - always good and bad recommendations. Here =) again a good one at least for me -without any reservations I can recommend the Hallwang Clinic - it´s just great how they took and still take currently care of me, right from the first contact with Dr. Nolting.

Just going for DCs wherever Germany US Australia China =), seems to be an inefficient mono-therapy - as described for ages - just go to pubmed. As I learned, the next generation of DC Vaccination ist the combination of the so-called checkpoint antibodies and a multi targeted therapy, lifting it up to one of the most recognized therapies.


I invite you to continue this conversation in this thread, posted something for you at the end: Regarding the "Hallwang clinic"

Girl111
Posts: 234
Joined: Fri Dec 06, 2013 4:43 pm

Re: Germany clinic

Postby Girl111 » Thu Jan 15, 2015 4:19 pm

Thank u all !

Some very useful reviews . It's a hard decision to make . One which needs to be thought through properly and a lot of research need to be done .

Tina x
Dad diagnosed stage 3 cc nov 13
Bowel resection march 14
Started xeloda
1 liver met and 1 node ( small)
Started irinotecan - failed
Poss nano knife now and oxyplatin
Hope the chem works !

crhamilton
Posts: 11
Joined: Tue Dec 30, 2014 2:35 pm

Re: Germany clinic

Postby crhamilton » Fri Jan 16, 2015 4:02 am

@girl111: yes, of course (was not able to respond to you directlly via mail =)

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Germany clinic

Postby Maia » Sun Jan 18, 2015 7:28 am

exaussie wrote:my cousins son. (...) He is stage 4 lung cancer, he tried holistic treatment in US because chemo was only going to give him 2 years he said. He got 25% growth in 2 months. Now he is in Germany, he can't work and has 4 children 8-6-4-2 and this clinic is charging him $80,000.


exaussie, I found out in other thread that your cousin's son has NSCLC -non-small cell lung cancer (which is more treatable than small cell LC, something that you maybe saw mentioned there). Wanted to mention that in the States you have now clinical trials with an extremely promising immunotherapy, with good results for NSCLC, specifically: the checkpoint inhibitor nivolumab (brand name Opdivo, which was approved this past December 22th for melanoma).
The data is good enough that the past week a trial was stopped because early benefits . Other similar drug with similar results in lung cancer may be pembrolizumab.


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