Dendritic Cell Treatment

2

Comments

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    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.

    thanks all!

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

    cheers

    Karin

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    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.

    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

  • annalexandria
    annalexandria Member Posts: 2,571 Member

    shot #2

    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

     

     

    I'm glad that you're having good QOL.

    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!

  • sdp
    sdp Member Posts: 181

    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

    When can one take dendritic cell,

    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
    lilacbrroller Member Posts: 412 Member
    sdp said:

    When can one take dendritic cell,

    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 ?

    timing

    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
    tanstaafl Member Posts: 1,313 Member
    multimodal, super supplemental

    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
    lilacbrroller Member Posts: 412 Member
    tanstaafl said:

    multimodal, super supplemental

    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 

    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.

     

     

  • jen2012
    jen2012 Member Posts: 1,607 Member

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

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

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member

    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.

     

     

    way to go, just fabulous

    2013-10-15

  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member

    Awesome

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

    Great news your big tumor is

    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!!!  

  • annalexandria
    annalexandria Member Posts: 2,571 Member

    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.

     

     

    That's great!

    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
    tanstaafl Member Posts: 1,313 Member

    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.

     

     

    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.

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    smokeyjoe said:

    Great news your big tumor is

    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!!!  

    Shots #4 and #5 - abort mission

    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
    jen2012 Member Posts: 1,607 Member

    Shots #4 and #5 - abort mission

    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

    Sorry that this didnt work
    Sorry that this didnt work for you Karin. Thanks for keeping us updated. Hoping for the best with your new plan.
  • annalexandria
    annalexandria Member Posts: 2,571 Member

    Shots #4 and #5 - abort mission

    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

    Damn, Karin, I am very sorry.

    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
    tanstaafl Member Posts: 1,313 Member

    Shots #4 and #5 - abort mission

    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

    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.  

  • janderson1964
    janderson1964 Member Posts: 2,215 Member

    Shots #4 and #5 - abort mission

    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

    I'm sorry to hear that but

    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
    lilacbrroller Member Posts: 412 Member

    I'm sorry to hear that but

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

    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!)

  • traci43
    traci43 Member Posts: 773 Member

    Shots #4 and #5 - abort mission

    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

    Sorry it did have the great results you wanted

    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