Heard back from Hallwang

tachilders
tachilders Member Posts: 313
in Colorectal Cancer #1

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 

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Comments

  • janie1
    janie1 Member Posts: 753 Member
    #2
    Wow, Tedd. That is fast on
    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.........
  • renw
    renw Member Posts: 282 Member
    #3
    I had a similar experience,

    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.

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #4
    you will know real soon

    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.

  • luvinlife2
    luvinlife2 Member Posts: 172 Member
    #5
    Good Luck!

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

  • tachilders
    tachilders Member Posts: 313
    #6
    renw said:

    I had a similar experience,

    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.

    52k euros for 3 weeks was the

    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

  • tachilders
    tachilders Member Posts: 313
    #7
    janie1 said:

    Wow, Tedd. That is fast on
    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.........

    The cost of the treatment

    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 

  • tachilders
    tachilders Member Posts: 313
    #8
    pete43lost_at_sea said:

    you will know real soon

    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.

    Only genetic info I have on

    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
    pete43lost_at_sea Member Posts: 3,900 Member
    #9
    tachilders said:

    Only genetic info I have on

    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 

    i got my rgcc tumour stem cell analysis today

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

    hugs,

    Pete

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #10
    janie1 said:

    Wow, Tedd. That is fast on
    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.........

    i was with a tour yes at the start

    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

  • asyedain
    asyedain Member Posts: 1
    #11
    Have you been to Hallwang

    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
    tachilders Member Posts: 313
    #12
    asyedain said:

    Have you been to Hallwang

    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

    Pete, Ren, and I are all

    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
    pete43lost_at_sea Member Posts: 3,900 Member
    #13
    tachilders said:

    Pete, Ren, and I are all

    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

    Aamir

    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

  • renw
    renw Member Posts: 282 Member
    #14
     
    I don't usually post here

     

    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
    devotion10 Member Posts: 623 Member
    #15
    renw said:

     
    I don't usually post here

     

    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/

    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

  • AnnLouise
    AnnLouise Member Posts: 276 Member
    #16
    tachilders said:

    Pete, Ren, and I are all

    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

    Tedd....With you all the way,,,,,

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

  • AnnLouise
    AnnLouise Member Posts: 276 Member
    #17
    renw said:

     
    I don't usually post here

     

    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/

    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

  • renw
    renw Member Posts: 282 Member
    #18
    devotion10 said:

    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

    I tried that, i posted

    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.

  • renw
    renw Member Posts: 282 Member
    #19
    AnnLouise said:

    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

    I am willing to bet that you

    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.

     

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #20
    AnnLouise said:

    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

    indents

    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.   

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #21
    renw said:

    I am willing to bet that you

    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.

     

    Advancements in Science & Their Application

    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...

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