Dendritic Cell Treatment

jen2012 said:

Thanks for all of the info

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.

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

herdizziness said:

Jen

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

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 ?

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 said:

Scan Results - October 2013

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.

 

 

lilacbrroller said:

Scan Results - October 2013

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.

 

 

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!

lilacbrroller said:

Shots #4 and #5 - abort mission

Well, CSN community, dendritic cell treatment did not work for me.   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

Karin

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

lilacbrroller said:

Shots #4 and #5 - abort mission

Well, CSN community, dendritic cell treatment did not work for me.   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

Karin

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 said:

Shots #4 and #5 - abort mission

Well, CSN community, dendritic cell treatment did not work for me.   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

Karin

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