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Thread: Confused

  1. #11
    Newbie New User
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    Nov 2015
    Quote Originally Posted by po18guy View Post
    Sorry for my apparent misunderstanding. Rather, let us look back over the past few decades and take in the amazing progress that has been made in cancer treatment. In the cases of my great-great grandfather (liver cancer) and aunt (unknown variety), absolutely nothing could be done for them. Only a limited amount could be done for another aunt in 1975 (leukemia) and for my father in 1979 (throat/lung). I, however, remain alive after four battles solely because of risk-based private investment in biotech made in the last ten years. 50 years ago, cancer was nearly 100% fatal. Today, that picture is far better, and steadily improving.

    Have you read The Emperor of all Maladies by Siddhartha Mukherjee? Excellent reading and very informative about this incredibly complex struggle.
    I completely agree with what you just said, and thanks for the book recommendation

  2. #12
    Administrator Top User ChemoMan's Avatar
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    Jun 2008
    Blog Entries
    Ok an explanation of this site.

    It is a support forum. That is its primary role. As such we are interested in your story all the trials tribulations and silver linings in your journey with cancer. These stories help others who come here make sense of what they are going through. If you stay and offer support to others even better.

    What we don't want is someone spamming the forums with the latest cure all treatment and offer nothing else. If you have a soapbox to stand on then you are not really in the right place.

    We have a few members here skilled at reading studies, having cancer does stimulate intellectual interest in a subset of cancer patients and their carers, and we have forums where you can post links to literature, this being one of them

    I have moved your post and it replies to its own thread where you can continue if you wish

    Age 62
    Diffuse Large B cell Lymphoma
    Stage 2a Bulky presentation
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof

    Still alive in 2019 !

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  3. #13
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    Remember too that this is not a site just to post rants but is what is described above.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  4. #14
    Newbie Top User BobInBonita's Avatar
    Join Date
    Mar 2014
    Aw heck, I don't do it often but as I see it:

    In the U.S. the FDA has historically been the decision point for what is generally available to patients outside of clinical trials. Their position is difficult. Approve things too slowly and get compared to countries that already have new therapies available. Approve things too quickly and get bashed about patient safety. There was a balance that was relatively easy to see and adjust / fine tune.

    Then a new balance appeared with excessive awards in liability cases and excessive profits taken before patent expiration. The balance became more complicated and approval times got longer and longer.

    The clinical trial that I am enrolled in took over 3 years to fully enroll even though 70+ sites participated in the trial. Enrollment was on target as far as timing is concerned. The original estimated completion date for the trial was over a year ago. The protocol for the trial was agreed on before it started under what is known as an SPA (special protocol agreement). An SPA is meant to decrease the trial time and decision making by predefining the endpoints. Not enough patients have died to meet the SPA, and it now looks like the endpoint will be two to three years later than originally expected (probably towards the end of 2016). Patients are living much longer than historically seen (the average time on trial for all patients is now about 43 months and the expected median survival at the beginning of the trial was 19 months).

    The question is if the unexpected doubling of survival times is due to the new chemo combinations used in pancreatic cancer or due to the effectiveness of the vaccine that is being tested OR a combination of both? In order to be able to answer that question with scientific validity, we have to wait while patients die.

    This is a very personal question for me. I am in the control arm of the study. If the vaccine works, I would likely be eligible as one of the first to receive it as a crossover. Part of me cheers for the other team (the vaccine patients) and hopes that my team dies more quickly. Part of me cheers for my own team, because then all current patients have the treatments available.

    As someone with a scientific background I have to cheer for science, because by doing the science correctly, waiting for the statistical evidence to be solid, more people will benefit in the long run. Yes, waiting sucks while advances are being made, but sometimes it just has to be that way.

    PS - I agree wholeheartedly that checkpoint inhibition will play a major role in cancer treatment in the near future, but it is still probably three to five years away. It takes time to do the studies and get it right. Unfortunately, the better things work, the longer it takes to prove it. There is a growing body of evidence that combining multiple checkpoint inhibitors with each other or with other IO approaches increases the number of patients that respond and the duration of the response, with many more complete responses.
    7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
    8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
    12/12 Whipple - R0 margins, 2/29 nodes pos.
    1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
    2/13 - 8/13 Gemzar for 6 months
    Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
    3/15 - spot larger - probable met - surgery planned
    4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
    5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
    10/15 - 8/16 maintenance 5-fu every other week
    8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
    9/16 - lung biopsy confirms pan can met,
    10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
    4/17 - PET/CT showed significant disease progression, multiple lung mets, pancreatic bed tumor has grown
    5/17 - Started hospice care - striving for acceptance

    Stay busy and live life to the best of your ability.


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