Dendritic Cell Treatment

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Comments

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #42
    tanstaafl said:

    keep on...trying (stuff)

    Thanks for the updates Karin, sorry the NDV-DC / Xeloda combo (alone?) hasn't done better. As for, 5fu is ineffective - took Xeloda during the DC treatment with no results, sometimes Xeloda doesn't metabolize properly to 5FU in the tumor.  I'm not clear when/if you were building your blood values with any other specific extra supplements to get the higher blood values beyond zometa and leukine, since your earlier "no supplements" comments. 

    Some of us like to stack stuff higher until enough pathways are addressed  to work.  We amped up the modulations on DC with big PSK, WGP, and cimetidine  and the 5FU content with the IV vit C, MK4, various flavonoids and even the celecoxib (-brex).     We find short on 1-2 additives, and part stops working (CEA, other markers rise fast), finally add something(s) right and coincidently, something appears to click, some tumorous mass starts to shrink or dissolve and/or CEA etc declines.  

    so sorry karin and goodluck with whatever you decide

    I wished you had had better results, I am doing similar things to tans approach above, you know the works and the ketogenic diet.

    did you ever check your hla status, its a predictor if you likely an immune responder, but this is not documented anywhere yet really and it vaccine specific.

    all the best.

    I did my 9th vaccine about 3 weeks ago, I might be in remission, I am not doing a scan until mid feb prior to heading back to germany for vaccine 10.

    you gave it a great try!

    hugs,

    pete

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #43
    lilacbrroller said:

    thanks

    Yeah. oh well. I keep plugging along.  Thanks for your support. 

     

    (by the way, Tanstaafl, I saw that you had posted to a Mac forum! I saw your userid and said to myself, I know that guy!  It had to be you - we had questions about linking Verizon email to mac products.  In answer to your questions about supplements, I am regrettably ignorant about them and don't know enough to self medicate.  My doctors aren't really recommending any, so I pretty much do what they tell me. My primary onc concluded that I'd become resistant to 5fu. Just as well!)

    on and off and on. again

    The Mac Tanstaafl is presumably another once young fan of Robert Heinlein, twasn't meInnocent.  

    My wife's tumor cells have been long resistant to 5FU-irinotecan-oxi pairs.  The 5FU turns on when we get enough active supplements added in, including some ingredients that appear to parallel iri-oxi-avastin-erbitux pathways.  Even missing a crucial ingredient, and the chemo suppression can turn off for the worst met(s).  Those, we'll aim to cut out.

     

  • adamray
    adamray Member Posts: 4
    #44
    http://theninthcat.blogspot.de/

    I have just begun treatment and thouhght it worth sharing thiis

     

    http://theninthcat.blogspot.de/

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    #45
    adamray said:

    http://theninthcat.blogspot.de/

    I have just begun treatment and thouhght it worth sharing thiis

     

    http://theninthcat.blogspot.de/

    wonderful!

    Hi, Adamray! - I will check out your blog. Thanks for posting. Please also post here.

    Dendritic cell treatment didn't work for me as I wanted, but I believe that this treatment is still in its adolescence, and it must be used more widely in order to figure out the correct dosage and accompanying treatments, be they chemos or supplements or both. In the early days of penicillin, as an example, it used to be given in a large dose shot in the buttocks.  I got small doses of dendritic cells but maybe due to my tumor load, I needed larger doses to flood my body with these cells?  

    All my doctors, including my local onc, believe that it did do something for me.  My CEA was finally slowing down, but at that point, we all felt that standard treatment would be better for me.

    Good luck and please check in with your progress here on CSN!

    all the best to you

    Karin

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    #46
    lilacbrroller said:

    wonderful!

    Hi, Adamray! - I will check out your blog. Thanks for posting. Please also post here.

    Dendritic cell treatment didn't work for me as I wanted, but I believe that this treatment is still in its adolescence, and it must be used more widely in order to figure out the correct dosage and accompanying treatments, be they chemos or supplements or both. In the early days of penicillin, as an example, it used to be given in a large dose shot in the buttocks.  I got small doses of dendritic cells but maybe due to my tumor load, I needed larger doses to flood my body with these cells?  

    All my doctors, including my local onc, believe that it did do something for me.  My CEA was finally slowing down, but at that point, we all felt that standard treatment would be better for me.

    Good luck and please check in with your progress here on CSN!

    all the best to you

    Karin

    Still alive in 2015

    Wanted to post an update to this thread - although I stopped the DC Vax treatment in 2013, I just wanted to report that as of April 2015 I am still alive and healthy. No NED by any means - still full of cancer.  Not sure if the DC Vax had anything to do with my being still on the planet or not, but anyway, just thought I'd post an update since this thread comes up in google searches.  Laughing

     

    cheers

    Karin

  • sheedykieran
    sheedykieran Member Posts: 1
    #47
    lilacbrroller said:

    Still alive in 2015

    Wanted to post an update to this thread - although I stopped the DC Vax treatment in 2013, I just wanted to report that as of April 2015 I am still alive and healthy. No NED by any means - still full of cancer.  Not sure if the DC Vax had anything to do with my being still on the planet or not, but anyway, just thought I'd post an update since this thread comes up in google searches.  Laughing

     

    cheers

    Karin

    thanks and keep on keeping on

    Your blog thread has been a very useful intro for me into DC Therapy. Thanks for posting it.

    good luck!

    k

  • asdf1234
    asdf1234 Member Posts: 1
    edited July 2016 #48
    Looking for dendritic therapy advice

    Hello Karin - Thank you for starting this thread and for all the others who have posted. It is really the only place I have found when looking for information about travelling overseas for dendritic cell therapy for my mother. She has gallbladder cancer and I would like to find a place where she can go for this therapy. She has a large amount of frozen tumor available. Can anybody direct me to where they found resources for who is legitimately offering this therapy overseas? Any help would be appricated. Thank you.

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #49
    asdf1234 said:

    Looking for dendritic therapy advice

    Hello Karin - Thank you for starting this thread and for all the others who have posted. It is really the only place I have found when looking for information about travelling overseas for dendritic cell therapy for my mother. She has gallbladder cancer and I would like to find a place where she can go for this therapy. She has a large amount of frozen tumor available. Can anybody direct me to where they found resources for who is legitimately offering this therapy overseas? Any help would be appricated. Thank you.

    someone to ask

    you can contact this blogger for information:  http://petertrayhurn.blogspot.com/ 

    He no longer posts here on the CSN.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #50
    asdf1234 said:

    Looking for dendritic therapy advice

    Hello Karin - Thank you for starting this thread and for all the others who have posted. It is really the only place I have found when looking for information about travelling overseas for dendritic cell therapy for my mother. She has gallbladder cancer and I would like to find a place where she can go for this therapy. She has a large amount of frozen tumor available. Can anybody direct me to where they found resources for who is legitimately offering this therapy overseas? Any help would be appricated. Thank you.

    I'm sure she hears you

    And is happy to know she can still help, but sadly Karin has passed away. 

    SUE

  • megagarwal
    megagarwal Member Posts: 4
    edited October 2016 #51
    Abbreviations and advise

    Hi. My father has stage 4 urothelial carcinoma with lung metastasis. He has already had surgery (2013) and chemo (2016) for the same. While the chemo has worked about 90%, there are some small 6mm nodes that still show uptake. The oncologist says we can't do anything but wait until they start growing again.

    I have just started researching dendritic cell therapy as a possible option for him. While I found this blog very helpful, I did find a lot of abbreviations such as NDV, P2x7, DC Vax, CSN, etc. Since I have just started researching I have no clue what any of this means, and I would like to suggest a post which includes basic info like this, as it might prove very helpful to people like me.

    I also saw people talking about different types of dendritic cell therapy, and was hoping someone would be willing to give me some more details on that? I pretty much thought there was only 1 type of therapy. From what I understood we would have to travel to Germany for 8 days, where the Dr would take 200ml of my dad's blood and modify it before injecting back into his body. Now I'm starting to realise that there's a lot more to it than that.

    Lastly, we were considering a Dr. Frank Gansauge, who is based in Germany, for this therapy. But here I see a lot of talk of Dr. Nesselhuts? Has anyone heard of Dr Gansauge, or would most of you recommend Dr Nesselhuts as the best option?

    Thanks in advance for any help and suggestions,

    Megha

     

  • John23
    John23 Member Posts: 2,122 Member
    #52
    Jul 28, 2013 - 7:04 pm

    Please note that this thread was started on Jul 28, 2013 - 7:04 pm.

    Many of the individuals have left us and will be unable to reply, unless you are a "medium" and can speak to the afterlife?

    Personally, I'm a small and can barely talk to my wife, but we've talked enough since 1963 anyway.

    Please do take note of the date a thread's begun prior to posting? Even if someone else has resurrected the thread, any new comments or questions regarding the topic would be best made to a brand new thread we can easily generate here at any time.

    Thanks, and be well.....

    John

     

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited October 2016 #53
    megagarwal said:

    Abbreviations and advise

    Hi. My father has stage 4 urothelial carcinoma with lung metastasis. He has already had surgery (2013) and chemo (2016) for the same. While the chemo has worked about 90%, there are some small 6mm nodes that still show uptake. The oncologist says we can't do anything but wait until they start growing again.

    I have just started researching dendritic cell therapy as a possible option for him. While I found this blog very helpful, I did find a lot of abbreviations such as NDV, P2x7, DC Vax, CSN, etc. Since I have just started researching I have no clue what any of this means, and I would like to suggest a post which includes basic info like this, as it might prove very helpful to people like me.

    I also saw people talking about different types of dendritic cell therapy, and was hoping someone would be willing to give me some more details on that? I pretty much thought there was only 1 type of therapy. From what I understood we would have to travel to Germany for 8 days, where the Dr would take 200ml of my dad's blood and modify it before injecting back into his body. Now I'm starting to realise that there's a lot more to it than that.

    Lastly, we were considering a Dr. Frank Gansauge, who is based in Germany, for this therapy. But here I see a lot of talk of Dr. Nesselhuts? Has anyone heard of Dr Gansauge, or would most of you recommend Dr Nesselhuts as the best option?

    Thanks in advance for any help and suggestions,

    Megha

     

    Welcome to the forum, Megha

    I just sent you a private message, but will repeat it here, as the forum has been having some tech issues, and I'm not 100% sure private messages are getting through. 

    Because, like John said, this is an old thread with many members who have now passed on, including lilacrroller, it would be a great idea to post a brand new thread on our CRC page. Here is the link http://csn.cancer.org/forum/128.  

    I remember being totally confused with all of the abbreviations. In fact a few pop up even now, that I have no idea what they mean. It is good to ask, and it would be a good idea to have such a thread. 

    SUE

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #54
    megagarwal said:

    Abbreviations and advise

    Hi. My father has stage 4 urothelial carcinoma with lung metastasis. He has already had surgery (2013) and chemo (2016) for the same. While the chemo has worked about 90%, there are some small 6mm nodes that still show uptake. The oncologist says we can't do anything but wait until they start growing again.

    I have just started researching dendritic cell therapy as a possible option for him. While I found this blog very helpful, I did find a lot of abbreviations such as NDV, P2x7, DC Vax, CSN, etc. Since I have just started researching I have no clue what any of this means, and I would like to suggest a post which includes basic info like this, as it might prove very helpful to people like me.

    I also saw people talking about different types of dendritic cell therapy, and was hoping someone would be willing to give me some more details on that? I pretty much thought there was only 1 type of therapy. From what I understood we would have to travel to Germany for 8 days, where the Dr would take 200ml of my dad's blood and modify it before injecting back into his body. Now I'm starting to realise that there's a lot more to it than that.

    Lastly, we were considering a Dr. Frank Gansauge, who is based in Germany, for this therapy. But here I see a lot of talk of Dr. Nesselhuts? Has anyone heard of Dr Gansauge, or would most of you recommend Dr Nesselhuts as the best option?

    Thanks in advance for any help and suggestions,

    Megha

     

    Private message

    I have sent you a private message. My first post in reply to you here has (annoyingly) gone to admin to be cleared because I added a link to our forum page http:// csn.cancer.org/ forum/ 128 (just backspace the spaces). 

    Welcome to the forum. I look forward to getting to know you. 

    SUE

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    edited October 2016 #55
    megagarwal said:

    Abbreviations and advise

    Hi. My father has stage 4 urothelial carcinoma with lung metastasis. He has already had surgery (2013) and chemo (2016) for the same. While the chemo has worked about 90%, there are some small 6mm nodes that still show uptake. The oncologist says we can't do anything but wait until they start growing again.

    I have just started researching dendritic cell therapy as a possible option for him. While I found this blog very helpful, I did find a lot of abbreviations such as NDV, P2x7, DC Vax, CSN, etc. Since I have just started researching I have no clue what any of this means, and I would like to suggest a post which includes basic info like this, as it might prove very helpful to people like me.

    I also saw people talking about different types of dendritic cell therapy, and was hoping someone would be willing to give me some more details on that? I pretty much thought there was only 1 type of therapy. From what I understood we would have to travel to Germany for 8 days, where the Dr would take 200ml of my dad's blood and modify it before injecting back into his body. Now I'm starting to realise that there's a lot more to it than that.

    Lastly, we were considering a Dr. Frank Gansauge, who is based in Germany, for this therapy. But here I see a lot of talk of Dr. Nesselhuts? Has anyone heard of Dr Gansauge, or would most of you recommend Dr Nesselhuts as the best option?

    Thanks in advance for any help and suggestions,

    Megha

     

    Probably not here

    You probably won't find anyone who is currently posting on this site who can help you with referrals or recommendation for this type of therapy.

    The blog writer is your best source of information.  You can contact him thru the blog.  I believe he is the only one still living that has tried this therapy, along with many other types that are outside conventional treatments.

    You might want to ask your father's medical team.  Even though they don't do it, they may have contacts for you in Germany.

     

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