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Heard back from Hallwang

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Sent them my medical records, and they responded with a tentative plan of treatment.  It includes Removab, DC vaccine, and chemo-embolization for the liver, which is very similar to what they are doing for Pete.  They also recommended additional genetic testing of my tumor(s), as well as some immunu-boosting therapies.  All in all, pretty much what Pete is getting.  They also predicted a 3-4 week initial treatment phase, and will be sending a cost estimate soon.  Pretty impressive how quickly they responded to my requests.  After I get the estimate, I will have to start the process of battling my life insurance company for the accelerated death benefits if I really plan to do this.

Tedd 

janie1
Posts: 753
Joined: Apr 2011

Wow, Tedd. That is fast on their part. Sounds like a plan. I'm not that far into my plan, but you've got me thinking.
Travelling that far is scary to me. Just the logistics of it all. Do they help with transportation/accomodations?
With Pete, i think it was a tour with other Aussies. Is that right, Pete?

Wonder if they could do the embolization on me? I have the implanted hepatic pump withh the catheter going rigjt into the hepatic artery.........

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

The cost of the treatment includes room and board for the entire stay.  They also offer transport from Stuttgart or Frankfurt airport for an additional cost (150-300 euros respectively).  Airfare is on your tab. The estimate did include transport to and from Frankfurt hospital for the chemo embolisation with Vogl.  Removab is only 600 euros per shot (3 indicated for 3 week stay) but DC vaccine is 6750 euros per vaccination.  Chemo-embolization was similar to DC vaccine price.  I'm betting chemo-embolisation in the US would be in excess of $25k, maybe way above that number.  The other thing I haven't checked on is if my health insurance would cover any of the costs, but not likely.  I plan to start working on the life insurance tomorrow, as I could use the money either way.

Tedd 

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

the tour left, i stayed on.

hallwang can arrange transport, its an expensive cab ride on your own.

if your sick its good, if your well enough to drive, then hire a car and gps and enjoy the autobahn.

hugs,

Pete

renw's picture
renw
Posts: 282
Joined: Jan 2013

I had a similar experience, same treatment plan, though took them a bit longer to reply. Exect your estimate to be in the 50k euro range for a month of treatment. I don't think that a month is enough however. I am planning on 6 months, though may get a few treatments in the Czech Republic instead as they are a tenth of the price there and about 4 hours drive from hallwang.

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

52k euros for 3 weeks was the estimate.  I e-mailed back and asked what the follow-up plan would look like with respect to time and cost.  Removab is pretty cheap, but the dendritic cell vaccine is pricey, as is the chemo embolization.  The initial response only indicated a 3 week treatment plan.

Amazingly, even after 14 chemo treatments, my blood work (cell counts) all came back in the normal range, even the platelets were back up to 159k from 135k 2 weeks ago (normalis 150-400k).  My immune system is hanging tough with all this chemo.  I have not had any immune support therapy like platelets or Neulasta.  Only out of spec things were 2 of the liver enzymes, but they are just a bit high and its expected due to my liver issues (biliary drain and now stent in bile duct).  Bilirubin level is normal...

Tedd

FightForPat
Posts: 1
Joined: Oct 2013

Hi, nenw.  My mom and I were reading this discussion today, she has stage IV uterine cancer and has been given her 'last option' of chemo (been on many chemo drugs).  She is strongly considering hyperthermia and we have done lots of research but are still unsure of the right place to go since it is so costly, she obviously wants the best.  We have heard lots of great results.  Hers has metastisized to her lymph nodes.  Can you put us in touch with someone we can talk to that might could lend some support?  Or maybe yourself?  We are in very desperate times here and we just want the best for her.  Thanks for all of your encouraging words.  Sarah

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

Guys,

Ted and Ren,

I'll help you in anyway I can, you know that, start thinking positive guys, this is the best news. If you want a pickup at the airport let me know, it will save you some euro or hire a car, thats my tip. see the money saving tips on my blog. 

goodluck with the insurance ted, plan for the best, show your insurer the quote, emphasise that the sooner you get the money, the sooner therapy can start, the better your odds of beating this, tell them its a win win because if you don't die they can keep the balance of the life insurance payout. nothing motivates corporates like greed. use their own weakness against them.

Also see my blog for ahcc, read the pdf, its one of the best mushroom products I have found, it will start healing your immune function.

on my blog see the rgcc molecular test kit details, order the kit, tell them you are a hallwang patient, you also need to do the cfs panel.

to save money and get the best service at hallwang, you have all these tests done and in the doctors hands, they start the magic before you walk in the door.

goodluck mate,

hugs,

Pete

ps my other colorectal friend peter m is coming over, he joined here a few weeks ago. these guys will be colorectal gurus before we know it.

pps annalandria, see my blog, email professor vogel directly about the hai pump question. please share his response.

ppps I have faith in these doctors. if start thinking organic and do a few things to get your biology sorted, cleaned up.

have you guys done your tumour genetic profiles, not rgcc, bring them over so we can compare genetic characteristics if you want. i will be as helpful or distant as you. 

bring your swimmers from the hot spas and local pool. when you have finished removab, life in the clinic is fun. i will be there for two weeks each month and then going to duderstadt.

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Only genetic info I have on my tumor is KRAS mutant, BRAF wild-type, and grade 2 adenocarcinoma.  Comfirmed that the omental/peritoneal mets are same as colon cancer.

 

Tedd 

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

if you want a look pm me with your email, i don't hsve time to publish it yet.

hugs,

Pete

luvinlife2
Posts: 172
Joined: Jul 2012

Wishing you all the best with getting the funds to go!  Smile

asyedain
Posts: 1
Joined: Apr 2013

Hi Ted

My wife is suffereing from metastasis of breast cancer in her spine, pelvic bone and her liver. She is currently getting peclitexal and is responding well to the therapy. Her bilirubin is down from 4.14 to 0.5. Enzymes are also falling into place from several times normal to 1.5 to 2 times. We have approached Hallwang Clinic and they have prescribed the following:

Therapy
Medication/ Infusion
Antibodies (REMOVAB)
Antibodies (Avastin 600mg)
Chemotherapy (Gemzar 1600mg)
Chemotherapy (Xeloda 2,5g)
Ozone Therapy

I wanted to speak with someone who has had a positive experience. Please let me know if you have been there yet and are willing to have a short chat.

Thanks and regards,

Aamir

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Pete, Ren, and I are all currently at hallwang getting treatment. Pete is mainly getting DC vaccines through Nesselhut now and just using hallwang for infusions. I am taking removab and other infusions at hallwang and have had one chemo embolization with Vogl. Ren just had chemo embolization yesterday. It is too early to say how well the treatments are working for Ren and I but Pete got tumor free with his combo of treatments and diet/lifestyle changes. I will know much more in 4-6 weeks when I get some follow-up CT scans. 

Tedd

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

Just PM me and I will give you my email.

Or just look at my blog, the voice of america radio interview basically says it all.

I hope you find the best health and medicine.

I owe my life to hallwang.

hugs,

Pete

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

wishing you the best results and all good outcomes...I am sure your family misses you so much! Thinking of you ~Ann

renw's picture
renw
Posts: 282
Joined: Jan 2013

 

I don't usually post here details of my treatments as therapies that require one to sell the farm, or are alternative in nature, seems to upset way too many people stuck in the chemo trap.

If your are not offended however, my hallwang, duderstadt and prague clinic experiences are on my blog. So far its been quite a ride.

http://www.mcrc4.com/

devotion10's picture
devotion10
Posts: 640
Joined: Jan 2010

1) Why do you (and others) have to keep saying that you are not supported using therapies that are alternative in nature? Look at the number of people who have supported Tedd as he has gone to Hallwang. Perhaps he receives support because he has always been kind to others and respectful. The result is when he needed us, we were there for him with open arms.

2) Why it is necessary to post about your alternative therapies which may be very helpful to others, but also have to include an insult to others who may be following a different path ... or as you say those stuck in the "chemo trap"?

3) Why not just try posting your intriquing and possibly life-saving treatments without the little insults and digs at others? I mean really, who needs all that negativity when they are ill. It can't help you any to constantly pit yourself against others and it likely doesn't feel good to anyone else either.

One way to nurture relationships is to continue to respond to folks on this board that are seeking help regardless of whether their treatment is conventional or aternative.  Keep trying to extend a hand instead of a fist -- you may find you have more friends and allies here on this board than you realize.

Wishing you the best in your therapies. ~ Cynthia

renw's picture
renw
Posts: 282
Joined: Jan 2013

I tried that, i posted everything that I experimented with and the results. I got flamed for peddling alternative treatments that some could not afford. I was not peddling, I just reported on the results and my experience. In fact mostly I reported that I noticed no effect.

So far the only two alt things I have done that I found good results with were Qigong and a ten day dry fast I went through. Changes after the fast in particular were amazing, and last to this day, but this was hardcore so don't recommend for anyone else to try.

As far as my love towards chemo, I was a biochemist and as luck would have it, I spent two years working with 5fu and platinum compounds in particular. I can tell you that most oncologist have no clue about the chemo they administer, and how it actually works on the biological level. I would be very surprised if any oncologist informed any of their patients about the long term consequences of platinum for example.

Chemo has its place, but if it is administered as a palliative treatment only. Run.

very worried husband
Posts: 87
Joined: Feb 2011

renw! please do not stop posting here. We are here to hear from you. I salute you and Pete for sharing this valuable information and experience. 

if your posts make some people depress and are insensitive, then they SHOULD stop reading any thing that has to do with Hallwang clinic.

By now they should have a good idea that there is fair bit of money involved in this approach.  

devotion10's picture
devotion10
Posts: 640
Joined: Jan 2010

communications with renw. My email was meant to encourage him, not discourage him, from posting.

Effort is being put forth to avoid a situation where the tone of posts alienate the very people who could be most helped as may have happened in the past.

These are extraordinarily valuable therapies that may prove to save lives ... All that is being asked is that one present their alternative treatment without criticizing the treatments of others who for whatever reason find themselves involved in traditional chemotherapy regimes.

We are here to support the choices that the members of our board make for themselves. We sign up for the board agreeing to do this.  It is the purpose of the board. 

I think your comments may be stirring the pot a bit rather than helping us move forward.  We are a community here of diverse folks who all deserve to be heard and respected -- everyone needs to be encouraged to voice their passions respectfully. This, to me, is simply the only way to open the minds of others who may benefit from something new and potentially beneficial.

You seem like a person who could provide good positive support for others besides Pete, renw, and only the alternative treatments ... Maybe you could join the community at large more? There are many wonderful people here who might benefit from your support. ~ Cynthia

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

If I am not offended by your experiences, then why the negative comment on my choice? 

I try to keep an open mind because I may make different choices in the future......but for now I am stuck in the chemo trap by choice! 

~ Ann

tanstaafl's picture
tanstaafl
Posts: 1075
Joined: Oct 2010

Ann, looking at the fine idents and questions, at I think renw was replying to Amir and not you.  Also renw was handled with misunderstanding and unnecessary roughness when he showed up.

He still sounds bruised and a little wary still about getting rejected unfairly without any technical consideration whatsoever.   Perhaps Dev10 missed renw's initial reception because I don't think she would given quite the same response today.  I know I thought some of renw's early posts here were met with severe misunderstanding  and some extremely negative responses if not unfair and pugilistic reproach.   

annalexandria's picture
annalexandria
Posts: 2447
Joined: Oct 2011

and he was indeed treated roughly by one member, but not by the entire board.   I don't think it's fair to make sweeping statements, as certain members have repeatedly done, about how unsupportive this forum is towards anything other than chemo.  That's just not accurate.  If I took all the encouraging comments made by folks here (including myself) to Pete, Ren, and Tedd, I bet i would have a thread 100s of pages long.   And I don't think asking for evidence other than anecdotal (although it should be done respecfully) is being unsupportive.  There are many alt cancer forums out there whose members are much less interested in knowing the science for taking one approach over another, but my impression is that this board tends more towards the evidence-based side of things.  AA

renw's picture
renw
Posts: 282
Joined: Jan 2013

I am willing to bet that you are stuck in the chemo trap by choice simply because your oncologist did not give you other choices. They never do. Its radiation, surgery and chemo. But there is so much more out there like removab with its ability to not only target tumour cells but CTCs and CSCs that chemo will not touch.

Cancers are almost never profiled. If they were you could use things like herceptin for her-2 positive colon cancers, celebrex for cox-2 overexpressing cancers, emend for Nk1, aspirin for  Pik3ca, etc. etc. The thing is, there are over 10000 possible mutation in colorectal cancer alone, and hence why everyone responds to different treatments in different ways based on their gene and protein expressions. If your cancer was genetically profiled, a whole new world of off-label options open up. Were u given this option?

Dendritic cell therapy on its own, without priming with necrotic tumour tissue has a 30% respoce rate (including full remissions) and the only side effect is a fever. Why is this not offered as a first line option without poisoning your system? 30% responce rate with just a fever is worth a shot no? Why not try this first, then fallback on systemic chemo? When I asked my oncologist, I was told no point, it does not work, a point of view he picked up at a phama sponsored conference no doubt. Well I saw CT scans of former patients showing a complete responce following dendritic cell treatment. 

No phase 3 studies is a popular oncologist argument to dismiss anything and everything outside their chemo box. With costs approaching a billion dollars to get a drug or treatment FDA approved, who is going to pay for phase 3 trials of dendritic cell therapy if there are no possible patents and thus no profits?

therapies like TACE I was never offered by any ocologist. Why not? So far this has been the most promising treatment with no chemo side effects. I had to research and organize the treatments myself. Why was this not presented as an option?

Most oncologists just dose chemo. That is all that most are good at. If you want choices, you have to look beyond.

 

PhillieG's picture
PhillieG
Posts: 4695
Joined: May 2005

It seems that advancements are being made in the labs but it takes a while (that many of us don't have) before they become approved and/or widely practiced. I've found that this is where having a good oncologist is important. Some deal with cancer like dentists/barbers dealt with a dental problem back in the 1880s. 

As far as many if not most oncologists pushing chemo, if you went to a mechanic to have your car serviced would expect them to tell you how you could fix it yourself or would you expect them to fix it how they know how to fix it. My mechanic has offered ideas that I can do myself to fix a few things but like finding a good mechanic, finding a good oncologist isn't easy. I didn't do an eeny, meeny, miny, moe nor did she call me. I had to research and find her.

So you're right with your assessment of most oncologists. Just like most carpenters do woodwork, most plumbers fix pipes, and most masons build walls...

smokeyjoe
Posts: 1428
Joined: Feb 2011

My oncologist just sent me down to a  "clinical trial"   for genetic testing.    I am interested in seeing what they find.    What's interesting was when I was down there they gave me a 13 page questionaire because  they are not sure how to  "pitch" this genetic testing to patients .... how to get them interested in having it done.    Seems there must be a lot of people completely dismissing this  and not wanting to have this done.        What do the removab treatments consist of???   Are these the ones where Pete had the shots directly to the tumor?    

renw's picture
renw
Posts: 282
Joined: Jan 2013

Removab is given as an iv over a long period of time. It is a triclonal antibody, which means it has 3 antibodies attached to a central protein.  One targets epCam positive cells and the antibody binds to such cells.  Many cancer cells are epCam positive and in fact over express it. Once removab binds to a cell, the other two antibodies activate t cells and macrofages. cells marked in this way are attacked by the immune system.  Only problem, cancer cells are not the only ecam positive cells in the body so there is some collateral damage as well.

The trick is to combine the right therapies. First chemoembolization to try and break down the tumour structures as much as possible so that removab can get inside, otherwise the outside envelope shields cells inside. After removab, dendritic vaccine can massively boost the white cell count to help attack the removab tagged cells. Throw in some hyperthermia to stimulate the immune system. Maybe include some gcmaf and/or immunoglobulin. Rinse and repeat.

FYI: this is an off-label use of removab. In the EU removab is approved as a treatment for ascites.

tanstaafl's picture
tanstaafl
Posts: 1075
Joined: Oct 2010

"It's cheap, effective and healthful without any/many side effects"

Selling is more difficult the more side effects, the more money and the smaller/more uncertain the benefits are.  I think genetic tests are oversold if older tests have high sensitivity and specificivity to fill similar targets, such as the (old) CA19-9 / CSLEX pair coupled with cimetidine tx. Perhaps even for stage IV in a high percentage of mCRC cases started early,  $2/mo vs $20,000/mo and longer legs timewise without bleeds and perforations etc like bevacizumab.    

Ditto many inexpensive, multi target flavonoids and  celecoxib for COX2.   Funny that I never heard any oncologists offering these as targeted tx, because no one told them either.  

Instead we struggle with rumors and superstitions, lack of data and direct experience.

renw's picture
renw
Posts: 282
Joined: Jan 2013

There is a lot of basic research out there, so if an oncologis wanted to, he could look these up. If they were willing to do this, The problem is the institutions most work for will not allow them to use many of the off label treatments even if they wanted to. For example, I first went for chemoembolization to a radiologist based in Melbourne. I wanted to have avastin included in the chemo mix. He coud not get permision from the hospital board to use it, even though he agreed that it made sense to do so.

The other problem, is that it does not matter how many research papers you show most oncologists, most don't bother to even read them, and if they do, if it is in vitro, based on animal tests or not part of phase 3 trial, they dismiss it. Basically most have set protocols and will not deviate from these.

Its hard to fight the system.

Also to note, many oncologists get a kickback from pharma comanies for enroling patients in trials. Many get incredible perks like all expenses paid trips to conferences and seminars in exotic locations etc. Many pharma comanies got caught out and paid huge fines in the past for shady activities, but the fines are so negligible, its just the cost of doing business. We are talking about bribes, forged trial results, you name it. 

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