On clinical trails——Dah.......

Butt
Butt Member Posts: 352 Member
in Colorectal Cancer #1

First, sorry for the lack of paragraphs because I am typing from the mobile.... When a year ago my cancer returned to lungs after a brief remission, I started to look on clinical trails. I found a couple of databases and invested my effort and time looking on those trails. First, I noticed that the vast majority of them never make to phase 2, not to mention stage 3. Also, each phase easily may take 1,5 years or longer to potentially move to the next one. In addition, they are initiated by multiple clinics in this country and of course overseas. It is unclear on which one you need to jump because you can't have several ones at the same time. I am MSS and I know as many of you, too that there are no immunotherapy for that. Sure, they have been working on this for years. Many people were hoping that something will come up soon but those people are no longer with us. We are literally talking about life and death. According to my oncolgUsf who is knowlegable in his field colon cancer research has been very weak over the course of years and there is nothing promising cooking in the kitchen that may become available in the next couple of years and as you know for the majority of the current stage 4 patients whatever eventually will come may be too late. Local cancer groups may assign you to a trail because they were given a spot and need to recruit the patients. It doesn't. Mean it will be the best trail for you( that by the way may not even exist). Colon club on Facebook had a table with MSS trails and there are quite a few of them but they may hVe only 2-3 people who tried a particular one and they may have very mixed results.The sample is too small and too many trails with different numbers. According to my oncolgyst, many of those trails are BS because they research and they have to do research something related to colon cancer but is rather unimportant and definitely not related to immunotherapy first MSS or potential cure. Info on trails is public available. They have no clue which one will be good for you and understand that most likely they will fail. Guess what? I heard the same from an MD Anderson branch doctor, a doctor in actual MD Anderson in Houston and a one in MSK. kinda the same info just different words and examples. How that you are supposed to find a good trail for yourself that will bring strong positive results? Time is very precious here. Any intelligent thoughts on this one? Butt.

Comments

  • NewHere
    NewHere Member Posts: 1,429 Member
    #2
    Trials Are ...

    An educated crap shoot.  There are some things which indicate that things may work for a trial before the trial starts, but there are no guarantees.  I was in a trial that had good results for non-MSS and I got in because they thought perhaps it could work and there was nothing else really applicable.  Plus I had wiggle room - my tumors were small enough and limited enough that I had time before going on chemotherapy.

    As an aside, colon cancer seems to be heavily researched since it is one of the major cancers.  We even have a whole month for awareness ;)  I am not sure who you are dealing with at MSK, but I ask about updates and potential trials every visit.  There are things in the works.  Granted we rolled snake eyes with MSS, and there is no way to know absolutely for sure what will happen with trials and MSS makes it difficult because immunotherapy does not work..as of now.

    It is frustrating. And it is not easy knowing that we are on a clock.  Have you had all the sequencing possible?  Have you tried any lab that has specialized testing? (They test chemo combos etc.)   I am not sure if they are that much further along that treatments at MD Anderson or MSK, but it sounds like something you can look into.   There are no definate answers and many things feel like (and are) out of control for us.  

    In terms of intelligent thoughts, I am not sure there is one in terms of a crystal ball or guarantees of a trial that will work or one that will be developed.  Keep on looking, keep on asking and try as much to be able to do anything you can do in all of this which helps you feel like you have some control/stacking your odds of continuing.  Exercise, diet, whatever it is. Also you may want to speak to someone regarding your thoughts and feelings with all of these things you have brought up in this post and otherwise.  All of us are overwhelmed by dealing with what we have.  All of us are great resources for one another in terms of support and hope.  But sometimes speaking to someone directly with expertise in terms of coping and the rest may be the best move.

    Hang in there Butt.  I do not want to lose anyone else from this board.  

  • Butt
    Butt Member Posts: 352 Member
    #3

    First, I am not aware of specialize testing. I had 3 visits to MD Anderson -Dr, Key and one to MSK -Dr. Epstein. Both are good docs. Epstein came a bit more personal and warm but it is not that important. He told me that they don t have trails for me and if I want one I need to keep going to MD Anderson because they have more trails. MSK told me if I want to come for another consultation I am welcome but they don t think they can offer me anything except chemo for life and it is exactly what I have been hearing from my local oncolgyst and an MD Anderson doc. I understand that there are many institutions that have been initiating those trails for years. They are not new to this. I have been looking on it for a year and don t know which one I should jump one and my docs can t give me this info. Many things are not guaranteed in life.  I am going to give a simple example. If a woman wants to lose 30 lbs. and starts diet/exercise and looses 25 lbs in 3 months things look promising and if she continues her agenda it seems with a high level of probability she can accomplish her goal in a few months. I don t see it from current clinical trails in regard of the specific matter. The above mentioned docs don t indicate it to me either. They are not assisting with a selection of the trail because they have no clue and I think they are all great docs. My thoughts......

  • NewHere
    NewHere Member Posts: 1,429 Member
    #4
    General

    I tried to go to MD Anderson, they had me scheduled and due to the entire circumstances I did not go - the communications were so brutally horrific that I decided I would take my chances with my cancer :)    As to MSK, I have been happy with my treatment and docs overall.  But they are straight up in terms of telling me if something is available. 

    There are so many trials out there that picking the right one is daunting.  And, by definiiton pretty much, they are trials and educated guesses.  There is nothing like the diet example in any of this.  Nature of the beast.  There  are some things that come semi-close, such the chemotherapy in use now, but even then it is far from outcome determined.  Some people respond to it.  Some do not.  Some will respond for a period of time before it becomes ineffective.  Some may have it continue to work.  

    NIH has almost 400 trials listed

    https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/r?q=colon&t=&a=&z=&rl=1

    There is a number and a online chat.  Perhaps they can help steer you to one?

    As to testing - things like this at MSK

    https://www.mskcc.org/msk-impact

    General description

    https://labtestsonline.org/tests/genetic-tests-targeted-cancer-therapy

    https://www.labcorp.com/help/patient-test-info/genetic-tests-for-targeted-cancer-therapy

    There are places where they run samples of a patients cancer through different chemotherapy treaments to see which ones seem to work the best.

    Kind of like this

    https://medlineplus.gov/lab-tests/pdl1-immunotherapy-tests/

    There are a couple of places I had seen, but do not have the links will post back if i do.

     

  • SoCal42
    SoCal42 Member Posts: 78
    #5
    Trials

    My medical center automatically ran genetic testing on both my colon tumor and later on my lung met biopsy, and then sent a tissue sample to NSABP, because they are working on a project to match patients to appropriate trials. Don't now if it will ever turn into anything concrete, but I don't mind them having a piece of my tumor for research. I think they work with large medical centers all over the country.

    http://www.nsabp.pitt.edu

    I'm honestly hoping I can continue to have decent disease control using standard therapies for a long time before I have to mess with all the unknowns of clinical trials.

  • feckcancer
    feckcancer Member Posts: 189 Member
    #6
    https://www.imugene.com

    https://www.imugene.com/clinical-trials 

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