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Dendritic Cell Treatment

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

Hello, all.  I just started dendritic cell therapy, through the Dr. Nesselhuts' clinic in Duderstadt, Germany http://immune-therapy.net  and Dr. Raymond Chang in New York City at the Meridian Medical Group.  http://www.meridianmedical.org.  I will be posting about my experiences, and results, on this site, throughout treatment.  I had mentioned on this board that I would be pursuing this treatment, and as a result I received many private inquiries. Rather than answer each one, I will basically blog here. 

about me and the reasons I sought this therapy: see my bio and the "roll call" post for more details. I have stage IV rectal cancer with multiple mets to liver and lungs.  My overal chances of long term survival are not good, due to the quantity and location of my tumors. I had one cycle of conventional chemo (FOLFOX plus avastin) that went well.  I never had surgery, and every surgeon/2nd opinion said no surgery was possible or advisable.  So, I faced the prospect of more chemo. My oncologist calls it 'the toolbox' but basically I'd cycle through each new type of chemo til I had a "progression", meaning that it stopped working.  And then, maybe I'd try clinical trials, which might buy me more time, but ultimately, my body would fail me, within 1-5 years very likely. 

Pete (Pete Lost at Sea on this board) wrote a lot about his dendritic cell therapy, how it (plus a lot of other treatments, supplements, and personal lifestyle decisions) helped shrink his tumors. So I did a lot of research about this type of therapy, and applied for a couple of clinical trials in the US (was rejected.)  I also searched for blogs of other patients having this therapy - some succeeded and some patients died anyway.   So after much reading and thinking, i decided to explore it so I made an appointment to see Dr. Chang in New York and things went from there rather quickly.

As Americans, in order to import the vaccine, even if it is made from our own cells, we need approval from US customs and FDA under a compassionate use program. Dr. Chang is the US representative for the Nesselhut clinic, and he is allowed to take a limited number of patients per year under this authority. I filled out some forms and was approved.  Pete and Ren are getting the shots in Germany. New York is a better option for me, I decided.

about the therapy:the Meridian Medical website shows a really informative video from Stanford University which explains how dendritic cell therapy works.  Also, this drug company website link does a nice job of explaining tne different types and functions of white blood cells, in simple language: http://www.leukine.com/patient-learning-about-the-immune-system  

The dendritic cells are a type of white cell that acts as sentries - they identify invaders (ie the cancer cells), yank them out of wherever they are, and present said invaders to the killer T cells which then proceed to beat them to a pulp. That's the theory anyway. Newcastle virus, which is a type of chicken flu, apparently only infects cancer cells. So I'm given shots of Newcastle, which 'tag' the cancer cells. Then my harvested dendritic cells are exposed to Newcastle virus in the lab, and when they are injected back into my bloodstream, they now recognize the 'tagged' cancer cells as invaders.  

It is not a miracle cure.  Before I made a commitment, I was told of the risks and given a rough idea of the odds. My odds now are, say 0-5%, and this treatment could increase it to 40-70%.  The younger Dr. Nesselhut equated it to the recently approved prostate cancer drug in the US which uses similar science - it was approved not because it cured people 100% but because test patients lived longer.  It's a bit of a gamble.  I probably should have sought this treatment earlier but oh well, what can I do?  Both the German and US doctors say the best time to do this is when tumors are small and stable, for instance after round one of chemo if it shrank the tumors significantly and put them to sleep.  Even though my tumors woke up and are progressing, it's still okay to have this treatment, according to them - I did ask, as I was concerned. 

Note: on this blog, I will not discuss costs. The treatment is pricey, but payment can be done in installments. Insurance may cover some of it. And tax rebates may even it out.  But basically what's involved are consultation fees, one trip to Germany for the leukapherisis and any other treatments done there (I had the Newcastle virus only - the 'budget option.'), fees for the shots, and possibly supplements.  Dr Chang prescribes conventional supplements to assist the process - in my case, zometa and leukine which stimulate the growth of certain types of white cells. The supplemental treatment prescribed would probably depend on the type, severity and location of the tumors and mets, most likely. Insurance may cover these.

Progress to date: Don't know yet. I just had my first shot of primed dendritic cells a few days ago. No adverse reactions from the shot. I'm a little tired, and am peeing more. Not sure what that means but will ask the doctors.  I'm going to report good and bad news, so that others who might follow this path will have more information.

and that's the way it is...

Karin

Trubrit's picture
Trubrit
Posts: 5378
Joined: Jan 2013

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's picture
Trubrit
Posts: 5378
Joined: Jan 2013

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's picture
Lovekitties
Posts: 3355
Joined: Jan 2010

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.

 

John23's picture
John23
Posts: 2140
Joined: Jan 2007

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

 

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