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Dendritic Cell Treatment

lilacbrroller's picture
lilacbrroller
Posts: 278
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

renw's picture
renw
Posts: 282
Joined: Jan 2013

I don't want to hijak your thread, but may be good to add my experience. The NDV treatment seemed to have zero effect for me, despite Dr. Nesselhuts rosy statistics, but everyone responds differently. Most research however says that on solid tumours effectivness of NDV is questionable and ideally you want low tumour burden. Despite the treatment I had 15% progression.

Two months ago, I changed strategy and had the dendritic cell primed with P2X7, and I also did donor gamma delta cell infusion. This may have resulted or contributed to a dramatic slowdown of growth this, and most likely the reason I am still here to talk about it. The reason I use the words "may have" is that I also started taking DCA and 2-deoxy-d-glucose so hard to know which treatment contributed the most to the result.  Either way not taking chances and repeating it. In fact I am in duderstadt now and finish treatment tomorrow.

Next month I am taking it up a notch, and going for a tumour primed Dendritic Vaccine. This is not offered by Nesselhut unless you have a large chunk of your tumour frozen to use for the priming. He does not use needle biopsy samples as there is not enough tissue and cancer cells are notiriously hard to culture in a lab (unless immortilized like all research cell lines). Hallwang however claim to have the tech to use small tumour samples so will give that a go. Tumour primed DC's are supposed to be the most effective.

More detailed info on everything on my blog: mcrc4.com

lilacbrroller's picture
lilacbrroller
Posts: 278
Joined: Jun 2012

Hey, Ren. No worries. Actually anyone who is undertaking dendritic cell therapy is welcome to post here.  I didn't want to paint a rosy picture, or a grim one (depending on results) but wanted to provide realistic feedback on the treatment.  I found this treatment through social media, and was able to research it in more depth using same, so figured I ought to "pay back" by posting info about my own experiences. 

I read your blog - the tumor vaccine should be promising.  My research shows that distant tumors often have a different composition than the primary. Ideally, if you have spread to two locations, you'd prime cells with a chunk from each including the primary.  And/or from each recurrence. My friend with breast cancer did not express HER2 when she was first diagnosed, but during her recurrance, she did. Either that was due to clinician error, or her tumor mutated. (lovely~~~) 

good luck - live long and prosper

Karin

janderson1964's picture
janderson1964
Posts: 1578
Joined: Oct 2011

I have been researching this treatment for some time. What I don't know is the cost since it would be out of pocket. If you don't mind me asking. What is it costing you per treatment in US dollars.

manwithnoname
Posts: 390
Joined: Jun 2012

Semi- allogenic DC vax, my DC's and my son's lysate, we had very little lysate and a lot of tumour burden, still the original tumour which was the huge majority of the lysate has still not recurred, one returned but much later and smaller than previous recurrence.

We also used Gm-csf for the prime + imiquimod to activate TLR 7/8. Booster shots included NDV.

Cost $35k for 3 x DC (93 million cells) + 8 X lysate + NDV.

Our Prof. is convinced semi allogenic works better. (who knows)

 

NJC
Posts: 64
Joined: Nov 2010

My wife is currently on the DC vaccine trial at the University of Pittsburgh (David Bartlett) and she has done quite well. Her first 3 priming boosters(1st month) had little effect but the second set (2nd month) have reduced her CEA by 30% in a single month. So, it appears she's doing quite well on them. As stated above, DC does better with those with low or microscopic tumor load to which category my wife falls into the microscopic load.

 

Janderson: my wife's trial covers everything from A to Z. No $$$ out of pocket.

 

Best,

-Joe

janderson1964's picture
janderson1964
Posts: 1578
Joined: Oct 2011

Thanks for posting Joe. I wasnt aware that it was in clinical trials. I thought you had to go to Germany to get it. What phase is the trial.

annalexandria's picture
annalexandria
Posts: 2222
Joined: Oct 2011

and search on "dendritic", you can see all the different trials that are going on.  There are quite a few, including some for colorectal patients.

janderson1964's picture
janderson1964
Posts: 1578
Joined: Oct 2011

This is a promising trial that is in phas III for Iprime PGG. I'ts an immunotherapy that works in conjunction with Erbitux. Very good results. Hopefully I will never need it but I always like to know what options are out there or are on the horizon.

lilacbrroller's picture
lilacbrroller
Posts: 278
Joined: Jun 2012

Hi, Joe. I was rejected from that trial - at U of Pitt.  That's great your wife got in - it's the test of MRI and dendritic cells? I was rejected b/c I have liver and lung mets - did not meet the protocol. If I just had liver mets, I'd have been a good candidate, so they said.  Pitt was great to deal with, though. Good news that it's working for your wife.  

The German doctors told me there was a study in Belgium of Stage III Dukes C (I think it was C but I could be wrong) where the participants were cured 100% using this type of treatment. 

 

best,

Karin

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

it would have been nice to catchup in duderstadt, maybe sometime, i am there almost every month.

i am back on the 2august for vaccine 7, my markers are almost normal and scans clear, but keeping the vaccines and taces going for the next year.

i hope your dc works well, if your disposed towards lifestyle well, its all on the blog, i believe in it, so do all the doctors here.

great post, ask chang about albendazole and are you doing systemic avastin, its good to block vegf when doing dc. dont forget the coriolos 6grams a day divivded breaky lunch and dinner.

try and do a cea 2 days after the dc, i always see a spike, i just like to know they are working. its also good to schedule your chemo about 5 days after dc injection. well thats nesslehut junior preference for me. it would be interesting to ask chang his thoughts.

just a few thoughts, goodluck .... an activated immune system can do anything.

hugs,

pete

lilacbrroller's picture
lilacbrroller
Posts: 278
Joined: Jun 2012

thanks for the encouragement, Pete. I did want to meet you in Duderstadt, but I was there inbetween you and Ren - believe you were there the week before me. Oh well.

I'm not on many supplements yet. I'm just taking 1000mg of xeloda per day, and will start some complementary therapy to stimulate white cell production. Dr Chang also practices TCM but he hasn't discussed any of that yet.

cheers

Karin

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

dear karin,

my white bloods cell always were about 4, the minimum, well on friday while getting local hyerthermia and they were just about to take blood for vaccinee and nesslehut jr says lets skip, 2 is way to low. i got up at 3am and drove till 7.30am to get there for the 9am appointment. i said fine and drove home. thats a separate adveenture i'll put on the blog.

the key point, is well lets say my holistic and supplement life is second to none, noone on the planet takes more supplements or nutritious food than me, well that i have met anyway. the point is its possible i am ultra sensitive to xeloda. to many interesting issues in my regime to go into here, but just keep a close eye on your white blood cell counts. and dont think neulasta will save you, its not indicated for dc therapies it boosts the wrong components.

so the simply message is we are also so unique, 500 mg xeloda kill my immune system we think, i am off it for a few weeks and doing a complete restorativee holitic program to rebuild gut, its on the blog sooner or later.

i will know in a few weeks if xeloda is the culprit, I am now religiously monitor wbc and tumour markers each fortnight.

goodluck with everything, what chang does to assess your immune competance, well i am curious. alas not much is done in duderstadt, most of the heavy lifting is done by the patient. i even called the day before, the doctors are so busy they never thought to call me and reschedule. that says alot about clinical capacity and management in a world famous but overloaded medical practice.

maybe chang will offer real value.

hugs,

Pete

ps I would check your urine for manitol to see if your gut dysbiotic, the only thing your immune system should be doing is eating tumours.

that implies fixing your viral load, at least assessing it, see if chang will do rgcc for you so that you can target your tumour weak points.

I hope you have a big lump at the injection site the day after vaccine, thats a good omen! 

NJC
Posts: 64
Joined: Nov 2010

J,

You're welcome...Phase I but they've been doing this with Glioma (brain) cancer and Leukemia patients for a while at UPMC. She's the first to go through. I truly believe Bartlett is the reason she's still here as she was diagnosed with 20 tumors in her liver in 2010 at the age of 33 and hasn't been on Folfox for nearly 1.75y. After a few leading edge procedures, resection (liver and nodes) and some RFA, she's got a real shot at beating this as its now gotten to a micropic level in the nodes which is the sweet spot for the DC vaccine. His reputation of one of the best certainly precedes him...

 

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Best of luck with the vaccine therapy, and I hope for only the best for you.  With that said, I don't think that even the best doctors in this field really have a good handle on exactly why DC vaccines work for some people and not others.  There are so many factors like tumor load, tumor genetics, immune system status, etc... that likely interplay to determine if you have a good response or not.  I do really think this is the wave of the future for cancer treatment, but don't think we are there yet for most people.  Hopefully some of us will survive long enough for the research to develop to the point that it can be commercialized and be available to the masses, but that is still years away IMHO.  I have personally decided that I am likely too far advanced for most of these experimental treatments to work for me, as I was just unlucky enough to not find out about my mCRC until it had advanced too far to be curable.  I just have too many mets in too many places, and too much drug resistance activity with my tumors for anything currently available to cure me.  All I can do is slow the disease as much as possible with available treatments and then accept the results.  Sounds kind of like I am giving up, but from the beginning I did not ever expect a cure.  My oncologists never said anything directly, but I can tell by the way they have handled my case that it was very bad from the beginning.  I am now spending my efforts on enjoying life as much as possible and on accepting the likelihood that I won't be here for that long.  I simply don't have the money, time, or energy to chase a cure like Pete (who I do admire for his persistence) or even Ren, who has shown tremendous courage in what he has had to deal with (some very unpleasant experiences while in Germany).  Best of luck to you pioneers in this still new area of cancer research....

Tedd 

lilacbrroller's picture
lilacbrroller
Posts: 278
Joined: Jun 2012

Hey, Tedd.  Thanks for your support.  I'm not sure it will work for me either - I may have futzed around too long deciding whether or not to do this...  I wasn't NED after my first round but my tumors went to sleep in January. I had a lot of shrinkage and stability for awhile.  By the time I decided to do the dendritic cell treatment and booked the appointments, etc my situation changed and the tumors started to grow.  They said don't worrry about it, but naturally, I worry!  I have my first CEA test Thursday with results to be discussed with the Dr next week.  If the growth is really aggressive I'll have to regroup. 

anyway.. I'm probably facing some decisions soon.  

I agree - hope we all can survive long enough for the next wave of treatments.  If not, well, it's been real.   I want to go to Hawaii!

atb - hang in there buddy. At least we're alive after a year. that is something. 

Karin

 

lilacbrroller's picture
lilacbrroller
Posts: 278
Joined: Jun 2012

I had shot number two in August.  

Waited to post until I got my CEA results.  Well, no instant gratification.  CEA levels up to 80.  The doctors in NY and Germany say that it takes four shots to show results. But still, I don't think this increase is a good thing, nevertheless...   No "abort mission" call from the doctors yet - we're still proceeding with shot #3. I continue to have faith.

My cancer was present but stable until June, with CEA at 7 or 8 from Jan-June, and then it shot up to 14 when the growth started. After the first shot and the first CEA test, it went up to 28. Then it went up to 50 and now it's 80. At least it's not 100...   As I've said my tumors are probably larger than would optimally benefit from this treatment, and it would be better if the junk wasn't growing. But I wasn't rejected, and i was willing to take the risk and go forward.

I may have another scan soon - doctors haven't decided when a good time would be, now or after the 4th shot. Still under discussion.  

My bloodwork comes back with normal ranges of everything, including WBC and platelets. The MCV and RDW are slightly above the top of the ranges (indicates liver issues - big surprise) but otherwise everything is in the normal range, some on the high end, some low, and some in the middle.  Pete I did ask about the Xeloda and I'm sending my bloodwork results again - I would think that if I'm jacked up with WBC boosters, I should have counts that are off the charts? But instead they are normal, and some low normal.  I will press them again.

As far as supplemental treatment, I take 1000 mg/Xeloda per day, and once a month I take a Zometa and IL-4 infusion. I'm going to start leukine in October (delayed due to insurance hiccups) Other than that, I take nothing:  no funky yogurt, no vitamin C, no CAM or TCM, nada.    So if this treatment works or doesn't work, it's probably only due to the doctors' program of treatment and not anything external I'm taking outside of the program.

My quality of life is great.  Zero side effects. I feel great and am not sick and can live my life as if I had no cancer. I work full time. I've joined a gym, I do spinning and zumba, and just went to the beach for the weekend. Swam in the ocean and walked on the beach a lot.  My logic is if this treatment works as well as chemo (ie slows the cancer down a bit but doesn't eradicate it altogether) then I've bought myself more time and my quality of life is 1,000 times better than if this extra year was made possible by FOLFRI or something which would make me weak and miserable. If it's not working at all, well, then I've got so much time to "live" until the final countdown.  When I signed up for this treatment, the Dr in Germany did tell me about why the prostate treatment (dendritic cells) was approved by the fDA- it didn't cure people but they lived a bit longer than those who had chemo, and their quality of life was way better.  Maybe that is what I am experiencing? Sure, I want a cure and I hope for better results after shot 4, or 5 or 6.  

After that point I will have decisions to make. but for now, I'll take this time of feeling good as a gift and will go enjoy life!Cool

- Karin

 

 

janderson1964's picture
janderson1964
Posts: 1578
Joined: Oct 2011

Keep the faith Karin. Like you said at least your quality of life is great. I am glad to hear that you are staying very active. I fully believe in physical activity and living life to it's fullest. I think it helps our prognosis and certainly can't hurt.

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

just hang in there and keep fighting the fight how ever you choose to fight it.if it works then great please keep us updated on your progress...Godbless...johnnybegood

Fucc
Posts: 84
Joined: Sep 2012

Thanks for the update Karin. I'm glad you are feeling well. I am still exploring the option of a dc vaccine. However, have decided to go with one more round of chemo. I really appreciate the information you have provided. 

annalexandria's picture
annalexandria
Posts: 2222
Joined: Oct 2011

That's huge, given how terrible we usually feel while on tx.

I wonder if the CEA increase could be a "flare" due to cancer cells dying off?

I hope that's the case and that your scan will bring good news when you have it!

jen2012
Posts: 1196
Joined: Aug 2012

Thanks for all of the info Karin - I somehow missed it the first time around.   My husband's onc is supposedly keeping her eyes open for a trial for him - I dont' see anything on the Univ of Pittsburgh website or on the clinicaltrials.gov site - if anyone knows if there are open trials, I'd love to know.

Good luck Karin - fingers crossed that it works for you!!  Thanks for sharing your experiences.

lilacbrroller's picture
lilacbrroller
Posts: 278
Joined: Jun 2012

Thanks - you all take care, too. I'll keep posting, good news and not.

cheers

Karin

herdizziness's picture
herdizziness
Posts: 3398
Joined: Apr 2010

this coming next year Stanford is supposed to do a trial, but trial they said will consist of 10 to 100 people.  I'll let you know if I hear more.

Winter Marie

sdp's picture
sdp
Posts: 146
Joined: Jan 2012

Hi,

was diagnosed stage 4 colon cancer with several mets to liver , underwent chemo and then resection of colon and liver .

NED for a year and then a liver met . Just got the met treated with IRE ( similar to RFA) and hopefully again NED for sometime.

i want to ensure that there is no recurrence and so wanted to know if I can start dendritic cell therapy even if there is no visible tumour ? 

Any suggestions ?

lilacbrroller's picture
lilacbrroller
Posts: 278
Joined: Jun 2012

HI, SDP.

There are a number of variations on dendritic cell therapy. Some take bits of tumor to sensitize the dendritic cells, and other use a (forgot the medical term - I'm going to call it a third party application) for that purpose. My treatment used the Newcastle virus (third party) and not bits of tumor.  So for my type of treatment, visible tumor is not needed,

My doctors handling my treatment (Chang in NYC, and the Nesselhuts in Germany) say that the Newcastle/dendritic cell treatment works best on microscopic and small particles, so your position is ideal.  I can't find the cite for this, but apparently, this therapy cures stage III colon cancer patients (post surgery and removal of tumor, affected lymph nodes) and keeps them from progressing for basically that reason. 

So yes, you're at prime time for this therapy. Good luck to you

Karin

tanstaafl's picture
tanstaafl
Posts: 963
Joined: Oct 2010

Although my wife's immunochemotherapies are different, based on various shrinkage, timing and biomarker series measurements, I do think that they are additive.   Many selected supplements plus low dose chemo, daily, do make a difference.  

Most effective at low residue, sufficient to hold back a metastatic tide that can alarm experienced surgeons, our position is multiple surgeries as necessary, and lots of various immunotherapies  (oral supplements and cimetidine + IV C, so far).   

We should not forget the Coley Toxins either:  The Toxins of William B. Coley and the Treatment of Bone and Soft-Tissue Sarcomas;   Coley's Toxins by Wayne Martin 

lilacbrroller's picture
lilacbrroller
Posts: 278
Joined: Jun 2012

Immunotherapy just might be working..

Last week, I had a full scan and got some good news:  my immunotherapy/dendritic cell treatment might be working!  Not 100% but after three shots, my rectal tumor has not returned, and my own immune system appears to have chomped a 3cm liver tumor. Go figure. My liver is clear now - there's an old dead calcified tumor but the one that was still asleep but still breathing in June is completely gone.   This is really good news.  (of course I celebrated by having a beer!)

Lung mets. Not the same news. One tumor appears to be gone (compared with last scan) but now I have a bunch more little tiny ones... I did go a new place for my scan, however.  Every single scan I've had shows a different number of lung mets, and in different places.  This new scan showed potential bone mets ('lesions'), but other scans have showed little bitty bone lesions also but in different locations... My primary onc didn't seem concerned about the possible bone involvement at this point.  I'm worried but that's my nature.

So for a therapy that supposedly does better on small tumors, why did it devour the big one and not the small ones?  My oncs can answer this, hopefully.  But I'm due for shot #4 in a few weeks, and I've started supplements to work on the lung area. Primary onc has a couple of chemo cocktails on ice as well in case the immunotherapy doesn't work, so for now, it looks like I still have options.

And my quality of life is still good. 

So that's the latest! Hope everyone else on immunotherapy is doing well - would like to hear your stories and advice

Karin

p.s. re: Coley's toxins. I knew of someone with bladder cancer who was getting, of all things,  shots of tuberculosis injected through her urethra to the bladder in order to cure her bladder cancer; it apparently worked well.

 

 

jen2012
Posts: 1196
Joined: Aug 2012

Thanks for the update Karin....that sounds promising! Fingers crossed that it continues!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

2013-10-15

annalexandria's picture
annalexandria
Posts: 2222
Joined: Oct 2011

Thanks for sharing your news with us.  I'm esp glad to hear that QOL is good.  That's such a critical piece of the puzzle.

Keep us posted on how the next round goes!

tanstaafl's picture
tanstaafl
Posts: 963
Joined: Oct 2010

Sounds promising with the augmentation.  The BCG vaccine for tuberculosis is what some places use for bladder cancer and others. 

Can you tell us more about which supplements and whether you're still doing the low dose Xeloda? A series of MCV readings is one "activity meter" that we used for setting (immuno)chemo activity.

very worried husband
Posts: 86
Joined: Feb 2011

lilacbrroller....this is awesome..thanks for sharing, and best of luck..

smokeyjoe
Posts: 1428
Joined: Feb 2011

Great news your big tumor is taken care of .... they say this immune therapy takes time, hopefully it will kick in on the rest too.    Are your bone mets spinal .... Kathryn in min.  had hers treated in a novel way with ablation ..... you'd have to talk to her to get the scoop on this, but it really seemed to work wonderfully for her.      It's so wonderful that you are feeling really well too!!!  

lilacbrroller's picture
lilacbrroller
Posts: 278
Joined: Jun 2012

Well, CSN community, dendritic cell treatment did not work for me. Cry  I took a risk and gave it a try, knowing the odds - that it works in 20-40% of the people. Like chemo. The doctors don't know why this is so - and I asked them. Oh well.  I apparently have a fantastic immune system - really strong- but it just doesn't recognize the cancer as a foreign body and doesn't attack it. Sneaky stuff, that cancer. 

After five shots, my CEA went up to 212.  Four was supposed to be the beginning of when the treatment would start to work. And it did slow it down - after after shot #4 CEA was 180, and after each prior shot it had doubled, but 180 to 212 was a bit slower.  But still, clearly not good results and I started to be concerned. After shot #4, my primary onc ordered a CT scan and a sigmoidoscopy (I have rectal cancer) and we found that my primary tumor had grown back - crap!  So then it was recommended that I seek radiation, so the radiation oncologist (brilliant woman) did a complete and thorough analysis of every scan I've ever had and also ordered a PET.  The PET results came in after shot #5 and showed that I now have 12 lung mets, a sparkly bright rectal tumor, the tiniest bit returning on an old liver met, multiple lymph nodes, and metastasis to one of the adrenal glands. Outf******standing!  Yeah, it's pretty aggressive now. Good news - no ascites, peritoneal or bone mets.  And, believe it or not, I am up and walking around, exercising, and not sick.  And in no pain, really.  My blood tests are all better than normal..  Go figure.  One doctor said that on paper i am seriously ill, but if I tried to apply for disability, just looking at me, I wouldn't be approved.

Anyway, after consulting with all the doctors (including Dr Chang in NYC) I decided to call it quits with the dendritic cells and go back to whatever they recommend.  I am now doing camptasar (non-generic for irinotecan) and erbitux. 5fu is ineffective - took Xeloda during the DC treatment with no results.  Just had my first hits of the new stuff yesterday. So far so good, but I am still jacked up with anti-nausea and steroids.

I hope this works. So, no miracle, no hail mary. I am a little bummed because the DCs in some people are curative.  Just not me. Maybe in the future they'll do more trials and figure out the dosage, timing, and what complementary drugs and therapies work and what don't for different cancers and patients.  The science is good.  I do believe that. And I don't regret trying this.  And my doctors don't think it was a bad decision to do this either. 

My future plans are to hope that the chemo works, try radiation, maybe surgery if I'm ever a candidate (!!!). The next hail mary would be a good clinical trial of something that can tell my wonderful immune system that the loser on my couch mooching food and drink is in fact not a welcome guest and that it should be chased out ASAP!

good luck to anyone else who tries DC therapy - please post your experiences on our board. I made a commitment to share my experiences with you all, and I did - wish it was better news!

cheers

KarinSmile

jen2012
Posts: 1196
Joined: Aug 2012

Sorry that this didnt work for you Karin. Thanks for keeping us updated. Hoping for the best with your new plan.

annalexandria's picture
annalexandria
Posts: 2222
Joined: Oct 2011

I know this must be a big disappointment for you, but you sound in amazing spirits!  You are one strong woman.

In case you hadn't seen them, there are a couple of things have been discussed at the Colon Club recently that might be relevant for you:

1.  new lung procedure that can address multiple mets (even up to 100, apparently!)

2.  Clinical trial of something called DcVax-Direct, which is injected directly into tumors.  It's a phase 1, but is going to soon be moving to phase 2 and is recruiting.  The pre-phase 1 mice studies were an outstanding success, so they are being allowed by the FDA to move forward faster than is usual.

For anyone who is interested, here is the link:

http://clinicaltrials.gov/show/NCT01882946

 

Hugs and strength coming your way~AA

tanstaafl's picture
tanstaafl
Posts: 963
Joined: Oct 2010

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.  

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

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

janderson1964's picture
janderson1964
Posts: 1578
Joined: Oct 2011

I'm sorry to hear that but thanks for posting. You seem to be handling this setback logically and with no regrets. Keep fighting.

lilacbrroller's picture
lilacbrroller
Posts: 278
Joined: Jun 2012

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!)

tanstaafl's picture
tanstaafl
Posts: 963
Joined: Oct 2010

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.

 

traci43's picture
traci43
Posts: 432
Joined: Jul 2007

Thank you so much for sharing your experience.  It just points out that curing cancer is going to be difficult because it's different for everyone.  I hope that the new drugs knock everything back and that some of the options folks have suggested help you.  You sound so positive, I think that helps, maybe not killing cancer, but dealing with the whole thing. 

Shouldn't Dr. Chang be able to help you with supplements?  That's a big part of his practice.  The supplements that taanstafli talked about are all in Dr. Chang's book.  Since you've seen him before, consult with him and let your local doc know what he's suggested.  I truly believe that the supplements help to slow the growth of cancer, and in some keep it from recurring.  It's worth a shot, you've done so much else.

Good luck to you, keep us posted.  You're in my thoughts.  Traci

adamray's picture
adamray
Posts: 4
Joined: Jan 2014

I have just begun treatment and thouhght it worth sharing thiis

 

http://theninthcat.blogspot.de/

lilacbrroller's picture
lilacbrroller
Posts: 278
Joined: Jun 2012

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

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