Dendritic Cell Treatment

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

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Comments

  • renw
    renw Member Posts: 282
    I don't want to hijak your

    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
    lilacbrroller Member Posts: 412
    renw said:

    I don't want to hijak your

    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

    fair and balanced

    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
    janderson1964 Member Posts: 2,215

    fair and balanced

    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

    I have been researching this

    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.

  • NJC
    NJC Member Posts: 72
    My wife is currently on the

    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
    janderson1964 Member Posts: 2,215
    NJC said:

    My wife is currently on the

    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

    Thanks for posting Joe. I

    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.

  • manwithnoname
    manwithnoname Member Posts: 402

    fair and balanced

    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

    We did

    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)

     

  • annalexandria
    annalexandria Member Posts: 2,571

    Thanks for posting Joe. I

    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.

    If you go to clinicaltrials.gov,

    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.

  • lilacbrroller
    lilacbrroller Member Posts: 412
    NJC said:

    My wife is currently on the

    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

    Bartlett

    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
    pete43lost_at_sea Member Posts: 3,900
    goodluck karen

    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

  • janderson1964
    janderson1964 Member Posts: 2,215

    If you go to clinicaltrials.gov,

    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.

    This is a promising trial

    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
    lilacbrroller Member Posts: 412

    goodluck karen

    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

    thanks!

    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

  • NJC
    NJC Member Posts: 72
    J,You're welcome...Phase I

    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...

     

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900

    thanks!

    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

    xeloda warning

    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! 

  • tachilders
    tachilders Member Posts: 313
    Best of luck with the vaccine

    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
    lilacbrroller Member Posts: 412

    Best of luck with the vaccine

    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 

    thanks

    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
    lilacbrroller Member Posts: 412

    thanks

    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

     

    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

     

     

  • janderson1964
    janderson1964 Member Posts: 2,215

    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

     

     

    Keep the faith Karin. Like

    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
    johnnybegood Member Posts: 1,117

    Keep the faith Karin. Like

    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.

    good for you

    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
    Fucc Member Posts: 92

    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

     

     

    Thanks for the update Karin.

    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. 

  • jen2012
    jen2012 Member Posts: 1,607 Member
    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.