Share your thoughts on PBS's Cancer: The Emperor of All Maladies

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2015

    dltnhm - yes, I am in the GP2 arm of this trial. This is a two armed trial with the AE37 being the other arm. Patients are sorted into each arm by histological type, which is independent of anything related to breast cancer or diagnosis. In the course of the trial there was an acknowledgement that there was benefit in the AE37 arm for those who express Her2 at a lower level, not zero, but not high enough to warrant treatment with Herceptin. That includes a lot more people than the 20% that are considered Her2, so potential for immunotherapeutic vaccine benefits for a larger group

  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited April 2015

    I can't bring myself to watch it..

  • dltnhm
    dltnhm Member Posts: 873
    edited April 2015

    SpecialK/

    Since I am Her2 Low - that particular aspect is interesting to me.

    I am part of a trial, NSABP-47, where Her2 Low patients are given Herceptin, Having been assigned to a control arm, I did not receive Herceptin. (FYI for anyone - this is not immunotherapy).

    Thanks for your response & info.

    Diana

  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2015

    dltnhm - Phase II of my trial is now closed, and Phase III is not yet open.  For Phase II there was criteria to enroll within six months of the end of treatment - whether that was chemo or Herceptin.  Also, to be sorted into the AE37 arm you would need to be histologically A2-, this is tissue typing like for an organ transplant, and there is a 50/50 split in the general population. Of course, you have about a 50/50 chance of receiving the actual vaccine, but in my trial the placebo was also an immune boosting drug, GM-CSF (sargramostim, similar to Neulasta). Hopefully, as more becomes known about immunology and breast cancer more of this type of drug will become available.  Have you considered the Neuvax trial?  Here is a link:

    https://clinicaltrials.gov/ct2/show/NCT01479244


     

  • SweetHope
    SweetHope Member Posts: 439
    edited April 2015

    MusicLover, You are right. I had to go back and rewatch that segment to clarify it to myself. They said it was most successful with melanoma and kidney cancer. They went on to discuss how difficult it is to "unlock" the mechanism that lets the immune system go to work on destroying other cancers. (I guess that is where I got confused.)

    The promising research discussed next was about removing the "blindfold" that is letting the cancer grow unchecked. By doing so, the Tcells can then see the cancer (which they previously ignored) and attack. It is an inexpensive, easily accomplished by any hospital, therapy. So here the studies are now focusing on the individual and not the cancer.

  • dltnhm
    dltnhm Member Posts: 873
    edited April 2015

    Special K -

    Oh yes. I knew that it was closed. I didn't mean I was interested in joining that phase and trial as much as I am interested in the study, results, etc. I knew I was too far out from treatments.

    Thank you for the other link.

    Only a small portion of patients participate in trials. Would love to be part of educating the masses of what these studies mean to all of us for generations to come.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2015

    dltnhm - I looked at the Neuvax trial material and I did not see any limitation on when you can enroll and it appears they are still recruiting so that one might work for you if you are interested, I know there are many waiting to see when the Phase III for the AE37/GP2 trial may open - if it does.  There have been a few hiccups with funding and a lawsuit involving the original principal doc and one of the pharmaceutical companies for the GP2 arm.  It is a shame that this is the case as the preliminary results from the trial so far are extremely promising.  Eeesh!  I finished with my last booster in December, and will now just be followed on the phone.  I joined this trial for several reasons - to potentially obtain the vaccine for myself and derive personal benefit, to advance the science so that this type of drug becomes available for more patients, and as a payback for those who participated in the Herceptin trials and allowed that drug to come to the market and be available to me. 

  • JohnSmith
    JohnSmith Member Posts: 651
    edited April 2015

    The last hour of Part Three (called 'Finding the Achilles Heel') highlighting Immunotherapy gives me hope.

    Here's my questions:
    1. How can Immunotherapy be translated to the field of breast cancer, and more specifically for the various subtypes (IDC, ILC, IBC, etc)?

    2. Who's doing the Immunotherapy (including Oncolytic Virutherapy) breast cancer research?

    3. Are there any clinical trials?

    Is anyone asking these questions?

    Slightly off topic... This has obvious overtones of the recent HBO / Vice special, "Killing Cancer" as well as the 60 Minutes broadcast on March 30, 2015.

    For those that missed the 60 Minutes episode this past Sunday. It discussed how Duke University researchers genetically re-engineered the Polio virus to attack and kill GBM brain tumors.
    The recent HBO / Vice special, "Killing Cancer" discussed patients with multiple myeloma, GBM brain tumors and leukemia who were treated with genetically modified viruses with surprising success. Those were:
    - HIV Virus [T Cell Therapy] for Leukemia (Patient: Emily Whitehead. Visit www.emilywhitehead.com to track her journey).
    - Adenovirus (common cold) for GBM brain tumors.
    - Measles virus for multiple myeloma (Phase 2 results leaked out after filming stopped. Apparently results were not as favorably as anticipated).

  • dltnhm
    dltnhm Member Posts: 873
    edited April 2015

    John -

    I posted a link on the first page to some immunotherapy clinical trials for BC.

  • Trvler
    Trvler Member Posts: 3,159
    edited April 2015

    I don't know much about HER+ and haven't yet watched Parts 2 and 3 but is it standard protocol to be on Herceptin for a year? Does that have SE's like other chemos?

  • dltnhm
    dltnhm Member Posts: 873
    edited April 2015

    Trvlr-

    Herceptin is the best treatment option going for Her2+ cancers. My understanding is that the most concern related to this therapy is possible effects on the heart. Patients are screened prior to Herceptin as with chemotherapy regarding heart issues. Someone who had or is having Herceptin will chime in with other side effects.

    The study that I am involved in is based on the benefit of Herceptin to those classified as Her2- but are not Her2 0 . You can be classified Her2- but be Her2 low as in IHC1+ or IHC2+. Your pathology results will detail this.

    I wish that BCO had a way to differentiate this in sig lines because it does open up possibilities for those in the Her2 LOW range.

    What led to these studies was retrospective analysis and reassessment of Her2 factor in study participants who were classified Her2+ and had Herceptin. In reassessing the Her2 for these participants, they found that there was a population who had been classified Her2+ but were actually Her2 Low. Researchers found that Herceptin appeared to benefit Her2 Low - which was not an expectation prior to this finding. The population was large enough to warrant further investigation - and thus were born trials adding Herceptin for Her2 Low patients.

    I hope my explanation does not further confuse you. I tried to make it understandable.

    Diana

  • Trvler
    Trvler Member Posts: 3,159
    edited April 2015

    No, Diana, that was very helpful.

  • MusicLover
    MusicLover Member Posts: 4,225
    edited April 2015

    Thank you everyone for sharing your knowledge! 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2015

    I read the book last year and found it interesting.  I found the PBS special very depressing.  it makes me realize that most of the research done is simply by drug companies who want to earn more money.  They charge unbelievable amounts for adding one month to someone's life.

    Chris Rock says it best, we don't find cures anymore.  The money is in the medicine not in the cure.

    Melissa


  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2015

    trvler - Herceptin (trastuzumab) is not chemo, but rather a targeted therapy - a monoclonal antibody.  It does have some side effects - most of them minor like runny nose, joint aching, etc., but does include the more serious risk of decreased cardiac ejection fraction for a small percentage of patients.  This is usually reversible - unlike cardiac damage from chemo.  Herceptin is given concurrently with chemo (usually the taxane portion) as it is thought to work synergistically, and then continued for the balance of a year.  It can be infused weekly, or every three weeks in a more concentrated dose.  It is generally prescribed for any type of invasive Her2+ cancer over 5mm.  Less than 5mm is open for oncological interpretation.  There is also the newly FDA approved Perjeta (pertuzumab), also a monoclonal antibody drug, for Her2+ patients with tumors over 2cm.  This drug is currently only approved for neoadjuvent use for early stage patients as of the fall of 2013.

    johnsmith - dltnhm linked some excellent immunotherapy info and resources on the previous page about who is doing what - including current research and open trials.  Here is her link again for anyone who doesn't want to go back a page.  I participate in a clinical trial using immunotherapy in vaccine form for Her2+ recurrence prevention. 

     http://www.cancerresearch.org/cancer-immunotherapy/impacting-all-cancers/breast-cancer

     

     


     

  • JohnSmith
    JohnSmith Member Posts: 651
    edited April 2015

    Yup. Got that. Thanks for the links. This is an excellent starting point. Lots of rabbit holes to explore. :)

  • jessica749
    jessica749 Member Posts: 429
    edited April 2015

    wow - haven't finished watching via DVR yet (only episodes 1 &2) but really excellently done. Could never bring myself to read the book but now have reserved it at local library.

    I thought it was terrific how clearly a detailed, complex, dense story (as I'm sure the book tells) is distilled into very compelling television. Kudos to the producer/director Barak Goodman. Wishing brave Dr Lori Wilson - so open with her story and her life at its most vulnerable time/tables turned (doctor as patient) - the best.

  • jessica749
    jessica749 Member Posts: 429
    edited April 2015

    the other obvious thing that struck me was how it was someone thinking outside the box /operating outside the mainstream - sometimes to the shock and horror of colleagues -who moved medicine forward.

  • Trvler
    Trvler Member Posts: 3,159
    edited April 2015

    If you like this kind of thing, there is an amazing book (which I am sure many of you have read) called The Immortal Life of Henrietta Lacks. A true story about a woman who had cancer. Her cells were used in research that pushed medicine forward in amazing ways. Excellent read.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2015

    Yes, both Emperor & Henrietta are absolutely fascinating!

  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited April 2015

    yes, The Immortal Life of Henrietta Lacks is an amazing book.

  • JohnSmith
    JohnSmith Member Posts: 651
    edited April 2015

    Media article today on huffingtonpost.com called: Why You Should Watch the Film Cancer: the Emperor of All Maladies: A Biography of Cancer

    Watch "Cancer: Emperor of All Maladies" online for free on pbs.org

  • eyo
    eyo Member Posts: 5
    edited August 2015

    good morning maam/sir is it ok to ask you something,i dont have money to go on a check up so i read about ibc and experience some of the symptom like The breast may become harder im 24 yrs old male image this picture is not me and that encircled part is where i experience a slight pain hardening and a little of burning sensation and sometimes when my chest hurts this side of my back hurts too.

    image can someone pls help me

  • Hortense
    Hortense Member Posts: 982
    edited August 2015

    I just finished the book which was excellent, if hard to push through as much was technical and my chemo brain made it hard to concentrate and understand. Reading in short bursts was helpful.

    I was treated for breast cancer in 2012 when it was also discovered that I had indolent Lymphoma. Yesterday I was diagnosed with pancreatic cancer. The book helped me understand why we still have no cures for most cancers and why chemo works for some.

  • dltnhm
    dltnhm Member Posts: 873
    edited August 2015

    Hortense,

    I am so sorry to hear of your recent diagnosis with pancreatic cancer. Although we do not 'know' each other, I have read many of your posts. I chose to not do cold caps and it was the right decision for me. I have kept up with the board. Hoping that you will have an excellent medical team with this diagnosis.

    Diana

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