Heard back from Hallwang

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Comments

  • very worried husband
    very worried husband Member Posts: 88
    #22
    renw said:

    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! 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.  

  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #23
    PhillieG said:

    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...

    My oncologist just sent me

    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
    renw Member Posts: 282 Member
    #24
    smokeyjoe said:

    My oncologist just sent me

    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?    

    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.

  • devotion10
    devotion10 Member Posts: 623 Member
    #25
    very worried husband said:

    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.  

    You seem to have misunderstood the point of the most recent

    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

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #26
    smokeyjoe said:

    My oncologist just sent me

    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?    

    perfect pitch...

    "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.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #27
    tanstaafl said:

    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.   

    I remember Ren's reception,

    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
    renw Member Posts: 282 Member
    #28
    tanstaafl said:

    perfect pitch...

    "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.

    There is a lot of basic

    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. 

  • FightForPat
    FightForPat Member Posts: 1
    #29
    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.

    Need help (hyperthermia)

    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

  • trig1982
    trig1982 Member Posts: 1
    #30
    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.

    Czech treatments

    Hello could you let me know about what treatments are available in the czech republic and what clinics these are please

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #31
    trig1982 said:

    Czech treatments

    Hello could you let me know about what treatments are available in the czech republic and what clinics these are please

    Gone but not forgotten

    Several of the members in this very old thread have passed on. I suggest you open a new thread and ask questions to those who may know. 

    You can open a new thread by following this link http://csn.cancer.org/forum/128  and clicking  A new Forum Topic  on your left.

    SUE

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