Sitting at Hallwang

tachilders
tachilders Member Posts: 313
in Colorectal Cancer #1

and getting my first infusion.  Arrived at around noon, had lunch, and then a quick meeting with Dr. Kopic and an uultrasound.  He said my liver looked pretty good structurally based on the ultrasound.  Started me today with a couple of immune boosting/detox infusions.  Not sure what the plan for tomorrow is.  Oh yeah, they took a bunch of blood for all the testing they do at RGCC and other places.  Might see Dr. Vogel for chemoembolization this week, or may start removab first....  We will see what the doc says.  Met Peter and his kids today, and he seems to be doing very well and looks great.  Ren will be here April 25 and there are quite a few Aussies here getting treatment.  I'll keep everyone updated with my progress here and when I get home.

tedd

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Comments

  • PhillieG
    PhillieG Member Posts: 4,866
    #2
    Best of Luck

    Good luck with the treatments Tedd, I hope you have great results.
    -phil

  • janderson1964
    janderson1964 Member Posts: 2,215
    #3
    I am really hoping you get

    I am really hoping you get positive results. Say hi to Pete for me if you see him again.

  • Dxed
    Dxed Member Posts: 79
    #4
    glad you made it

     

     

    Happy you've put your plan into action. Wish all the best

  • devotion10
    devotion10 Member Posts: 623
    #5
    Please keep us posted and know

    that you are in our hearts. You are a long way from family and friends. We are here for you. Have courage. Best -- Cynthia

  • AnnLouise
    AnnLouise Member Posts: 276
    #6
    Sending positive thoughts....

    for the very best results.....thinking of you and your family ~ Ann

  • Chelsea71
    Chelsea71 Member Posts: 1,169
    #7
    Got chills when I saw your
    Got chills when I saw your post. I really admire how you put this plan into action and made it happen. I'm so excited for you. Can't wait to hear how it all goes. Thank you so much for updating us with your progress. Please say hello to Peter for me.

    Chelsea
  • thxmiker
    thxmiker Member Posts: 1,278
    #8
    It is glad to see tat you are

    It is glad to see tat you are getting the help that you hoped for!   We are sending goood thoughts and Prayers from the Mountains in the AZ!

     

    Best Always,  mike

  • annalexandria
    annalexandria Member Posts: 2,571
    #9
    Good luck, Tedd!

    Please keep us posted on how things go.  It's very exciting!  AA

     

  • Vancouver
    Vancouver Member Posts: 15
    #10
    Good Luck

    Tedd,

    I really admire you for doing this.  I do think that this sort of treatment holds out great hope and could possible be the future standard of care.  Hopefully, the success of courageous people like yourself and Pete and Renw (who pursue these treatments at considerable personal expense) will one day make them more accessible to all who want to give them a try! I am following your journey with deep interest am hoping with everything I have that this works for you and your family--it will give reason for optimism to all!

    Best to you,

    CT 

  • tanstaafl
    tanstaafl Member Posts: 1,300 Member
    #11
    shorter stories

    Sure look forward to a condensed summary about it.Smile

    Good luck, Tedd.

  • renw
    renw Member Posts: 282
    #12
    Hey Tedd, I arrived in europe

    Hey Tedd, I arrived in europe  yesterday. first week I am however pursuing a thyroid based treatment at a clinic in Prague. Its a very old and promising treatment that has been buried, and its cheap as chips compared to everything else. After that I am off to Nesselhut to start the dendritc vaccine stuff. I'll be at hallwang end of the month.

    Are u staying at the clinic? whats the accommodation like?

  • Vancouver
    Vancouver Member Posts: 15
    #13
    renw said:

    Hey Tedd, I arrived in europe

    Hey Tedd, I arrived in europe  yesterday. first week I am however pursuing a thyroid based treatment at a clinic in Prague. Its a very old and promising treatment that has been buried, and its cheap as chips compared to everything else. After that I am off to Nesselhut to start the dendritc vaccine stuff. I'll be at hallwang end of the month.

    Are u staying at the clinic? whats the accommodation like?

    Exciting

    Renw,

    Very exciting that you have arrived in Europe--I have been checking your blog daily for updates!  I hope you and Tedd will both post regularly about how things are going.  I really, really hope for improved health for you. 

    I am following things with great interest for my mom, who is stage IV with mets to the liver.  She was diagnosed late Sept 2012 (shortly before you, I believe).  I would love her to consider this, though at 77 I'm not sure she'll go for it.  She is currently overjoyed by the news she received Monday about her latest scan--no active cancer!  It is quite remarkable as her liver mets were VERY extensive and she has only had xeloda (with lots of alternatives similar to yours from Day 1).  Her CEA is now less than .5.  Let's hope it stays away for a long time, though in the back of my mind I am worried because the liver abnormalities still appear on the scan, but according to the onc, they are filled with liquid--more like cysts now. 

    I do believe immunotherapies hold a lot of promise and I hope you will soon be living proof!

    Best to you,

    CT

  • tachilders
    tachilders Member Posts: 313
    #14
    Vancouver said:

    Exciting

    Renw,

    Very exciting that you have arrived in Europe--I have been checking your blog daily for updates!  I hope you and Tedd will both post regularly about how things are going.  I really, really hope for improved health for you. 

    I am following things with great interest for my mom, who is stage IV with mets to the liver.  She was diagnosed late Sept 2012 (shortly before you, I believe).  I would love her to consider this, though at 77 I'm not sure she'll go for it.  She is currently overjoyed by the news she received Monday about her latest scan--no active cancer!  It is quite remarkable as her liver mets were VERY extensive and she has only had xeloda (with lots of alternatives similar to yours from Day 1).  Her CEA is now less than .5.  Let's hope it stays away for a long time, though in the back of my mind I am worried because the liver abnormalities still appear on the scan, but according to the onc, they are filled with liquid--more like cysts now. 

    I do believe immunotherapies hold a lot of promise and I hope you will soon be living proof!

    Best to you,

    CT

    Did my chemoebbolization with

    Did my chemoebbolization with Vogel yesterday and had whole body hyperthermia today along with daily infusions of various immune boosting compounds. Both procedures went wefar and I feel fine so far. Next up is removab if my Epcam levels are high on CTC (circulating tumor cells).  Should find out soon. Also waiting on some other blood tests to possibly add to infusions. I'll keep everyone updated as much as possible. 

  • lilacbrroller
    lilacbrroller Member Posts: 412
    #15
    dazed and confused..

    Hi, Tedd.  Glad to hear you are doing well.

     

    I am confused - - I thought you were going after the dendritic vaccine at Hallwang? But I googled Hallwang and they don't offer it there, or dont' seem to. What is the life extending program that is available there?

    dendritic vaccine: Duderstadt clinic  http://www.immune-therapy.net/praxisgemeinschaft/therapieverstaendnis.php

    Hallwang: http://www.hallwang-clinic.com/en/private-clinic/the-clinic.html

     

    anyway, if you don't mind sharing, would you please explain the difference between the two places. Seems Pete visited both - is that your plan? are you going to get the dendritic vaccine? What is so great about removab? [I got C's in biology in school... reading the technical websites is especially tough for me! ] 

    merci and take good care

    Karin

  • tachilders
    tachilders Member Posts: 313
    #16
    lilacbrroller said:

    dazed and confused..

    Hi, Tedd.  Glad to hear you are doing well.

     

    I am confused - - I thought you were going after the dendritic vaccine at Hallwang? But I googled Hallwang and they don't offer it there, or dont' seem to. What is the life extending program that is available there?

    dendritic vaccine: Duderstadt clinic  http://www.immune-therapy.net/praxisgemeinschaft/therapieverstaendnis.php

    Hallwang: http://www.hallwang-clinic.com/en/private-clinic/the-clinic.html

     

    anyway, if you don't mind sharing, would you please explain the difference between the two places. Seems Pete visited both - is that your plan? are you going to get the dendritic vaccine? What is so great about removab? [I got C's in biology in school... reading the technical websites is especially tough for me! ] 

    merci and take good care

    Karin

    I came mainly for the removab

    I came mainly for the removab which is an antibody that works to kill tumors that express high levels of the Epcam marker.  All cells express Epcam, but most GI cancers express much higher levels of the marker.  The side effects from removab are due to the antibody also having some effect on the normal cells as well, similar to chemo.  Still have to get my Epcam levels to make sure I am a candidate for removab.  The Hallwang clinic does offer a dendritic cell vaccine through RGCC so I am scheduled to get that as well.  Peter gets his dendritic cell vaccine through dr. Nesselhut who does not work with Hallwang.  I have decided to limit my initial treatment to Hallwang and then explore other alternatives if I come back for more treatment in the future.  I have limited time and budget for this so I have to choose wisely.  Many folks here have been here many times before and they just use Hallwang for certain procedures and then do various outside treatments as well.  

    PteddPtedd

  • tanstaafl
    tanstaafl Member Posts: 1,300 Member
    #17
    misc immune / molecular tx?

    Tedd, I lost track where you went with vitamin D3/blood testing, cimetidine or celebrex last month.

  • lilacbrroller
    lilacbrroller Member Posts: 412
    #18
    tachilders said:

    I came mainly for the removab

    I came mainly for the removab which is an antibody that works to kill tumors that express high levels of the Epcam marker.  All cells express Epcam, but most GI cancers express much higher levels of the marker.  The side effects from removab are due to the antibody also having some effect on the normal cells as well, similar to chemo.  Still have to get my Epcam levels to make sure I am a candidate for removab.  The Hallwang clinic does offer a dendritic cell vaccine through RGCC so I am scheduled to get that as well.  Peter gets his dendritic cell vaccine through dr. Nesselhut who does not work with Hallwang.  I have decided to limit my initial treatment to Hallwang and then explore other alternatives if I come back for more treatment in the future.  I have limited time and budget for this so I have to choose wisely.  Many folks here have been here many times before and they just use Hallwang for certain procedures and then do various outside treatments as well.  

    PteddPtedd

    fascinating..

    Thanks for the info. 

    I just read about removab (no idea what a malignant ascite is) and checked the NIH.gov clinical trials websites. Seems that the testing is moving along nicely in the US, and perhaps phases II and III have been completed.  I can't find any info about when it will be approved in the US but will keep googling.

    The US got it right with the KRAS mutation, and does tailor chemo/bioagent depending on the patient's KRAS status. If removab makes it into the US market, maybe patients will be tested for EPCAM also.  that would give us all more options.

    I contacted an NIH trial for a dendritic vaccine, but was rejected due to lung mets (too sick.)  Contacted another trial but was also rejected because I was too healthy.... go figure.

    cheers and good luck with your treatments. keep us all posted! I'm rooting for you!

     

    - Karin

  • tachilders
    tachilders Member Posts: 313
    #19
    tanstaafl said:

    misc immune / molecular tx?

    Tedd, I lost track where you went with vitamin D3/blood testing, cimetidine or celebrex last month.

    They are doing the chemo

    They are doing the chemo sensitivity testing here but results aren't back yet. They also test the tumor cells for sensitivity to other substances but not sure exactly what compounds. they asked me to get vitamin D level and celiac antibody checked before I came so I had that done at northwestern before I came. Vitamin d was in normal range at 47 and celiac antibodies were all negative. I am waiting on the RGCC testing before starting any additional things like cimetidine or Celebrex etc....  Hope that answers your questions. Main things I am here for are chemo embolization (done one already), removab (not started yet), and a dendritic cell vaccine (likely at the end of my stay).  

  • renw
    renw Member Posts: 282
    #20
    lilacbrroller said:

    fascinating..

    Thanks for the info. 

    I just read about removab (no idea what a malignant ascite is) and checked the NIH.gov clinical trials websites. Seems that the testing is moving along nicely in the US, and perhaps phases II and III have been completed.  I can't find any info about when it will be approved in the US but will keep googling.

    The US got it right with the KRAS mutation, and does tailor chemo/bioagent depending on the patient's KRAS status. If removab makes it into the US market, maybe patients will be tested for EPCAM also.  that would give us all more options.

    I contacted an NIH trial for a dendritic vaccine, but was rejected due to lung mets (too sick.)  Contacted another trial but was also rejected because I was too healthy.... go figure.

    cheers and good luck with your treatments. keep us all posted! I'm rooting for you!

     

    - Karin

    FYI: removab is used

    FYI: removab is used off-label at hallwang.

  • lilacbrroller
    lilacbrroller Member Posts: 412
    #21
    renw said:

    FYI: removab is used

    FYI: removab is used off-label at hallwang.

    Michael Jackson and horse tranquilizers...

    Yikes! Off label scares the crap out of me, like Michael Jackson referenced above. the 1% has to be careful also, that unscrupulous doctors wont' take their money and inject them with who knows what.  In that regard, I feel relieved at being in the 70% ? (middle class) that is regulated by insurance decisions. 

    well geez. If removab is successful in reducing gastric tumors (mind you - C in biology), when will it become "on label" for our type of cancer?  How does this happen? Do doctors have to publish papers and convince peers of off-label effectiveness, and eventually the approval process for that particular use is sponsored by a drug company, for instance? I remember reading that avastin (one of our drugs) was being tested for ovarian cancer. Not sure if it got approved, though. 

    http://www.clinicaltrials.gov/ct2/show/NCT01200121?term=removab&rank=15

    the dendritic vaccines are moving along thru the FDA process, and will be part of standard treatment (so I'm told.) 

    Hope it works for you Tedd!  

    cheers

     

    Karin

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