Clinical Trials

joyceann619
joyceann619 Member Posts: 33 Member
edited March 2014 in Colorectal Cancer #1
Hi semi-colons,
I don't post much but I thought I would post today about recent events in my fight against stage 4 CC (inoperable mets in liver and lungs).
Over the past 3 years, I have been on five treatment protocols and according to my latest CT the tumors are still growing. I basically have exhausted all available treatment protocols to date.
So my oncologist recomended that I start looking into Clinical Trials. I was wondering if anyone on this site is currently involved in a Clinical Trial and how is it going?
There are quite a few trials aroung the country for colon cancer, how do you decide which is the best one to go on?
I live in the Phila area and am able and willing to travel anywhere.

Thanks in advance for your help,
Joyce

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    #2
    Sadly, I was not eligible for them....by the time I found out, I was into my second cancer, and no one would take me then. As they put it "The first cancer was less than 5 years ago". Sigh.

    Some trials carry a larger risk factor, and so it comes down to YOUR comfort level. This is based on which 'level' trial it is. Level 1, well, it's more experimental than level 3...

    That said, I have known warriors that have really benefited....one gal was in a trial to test Avastin in stage III (when it was exclusively for stage IV) colorectal cancer...she responded beautifully...obviously, not in the control group.

    Interestingly, there is a new one starting comparing Xeloda to 5-FU IV...this wouldn't be for you, but my newly-dx sister could participate.

    The great thing about a trial is that you get followed more closely than a 'normal' treatment protocol. And most (not all, so ask) foot the bill. As I said, not all...be careful...some want YOU to carry the drug cost, or the scans cost, etc, and then you MUST ask your insurance...they don't like to cover experimental stuff normally...get it in writing.

    Hugs, Kathi
  • HowardJ
    HowardJ Member Posts: 474
    #3
    Interesting Article
    We have had a number of posts questioning the usefuleness of chemo in stage II disease. There was a presentation at this years ASCO meeting (the oncology medical conference) about predictors--

    Title: High-Risk Features Identify Patients With Stage 2 Colon Cancer Who May Benefit from Adjuvant Therapy

    http://www.medscape.com/viewarticle/558804?src=mp

    Howard
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #4
    Hi Joyce -

    I might be "over-reading" your post, but as I read it your oncologist told you to go out and find some clinical trials. Great for you to look around, but is your oncologist doing anything for you in this regard? If not, he/she should be. If you are not getting help from your onc in this regard, then you should look for another oncologist, perhaps at a major cancer center, who will be an advocate and look for / advise you on trials.

    I wish you the best.

    Betsy
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #5
    KathiM said:

    Sadly, I was not eligible for them....by the time I found out, I was into my second cancer, and no one would take me then. As they put it "The first cancer was less than 5 years ago". Sigh.

    Some trials carry a larger risk factor, and so it comes down to YOUR comfort level. This is based on which 'level' trial it is. Level 1, well, it's more experimental than level 3...

    That said, I have known warriors that have really benefited....one gal was in a trial to test Avastin in stage III (when it was exclusively for stage IV) colorectal cancer...she responded beautifully...obviously, not in the control group.

    Interestingly, there is a new one starting comparing Xeloda to 5-FU IV...this wouldn't be for you, but my newly-dx sister could participate.

    The great thing about a trial is that you get followed more closely than a 'normal' treatment protocol. And most (not all, so ask) foot the bill. As I said, not all...be careful...some want YOU to carry the drug cost, or the scans cost, etc, and then you MUST ask your insurance...they don't like to cover experimental stuff normally...get it in writing.

    Hugs, Kathi

    Kathi is right that Phase 1 trials are generally more risky than Phase 3 trials. However, there are all kinds of trials. Phase 1 trials are officially aimed at determining the maximum possible drug dose without serious adverse reactions. But, that said, Phase 1 trials may actually "just" involve combinations of drugs and procedures where the combination is different from what is normally done, but where each drug / procedure used is actually already in approved use. In those cases the risks are relatively speaking low. (I was evaluated twice for such a trial at NIH/NCI.) I didn't qualify (for good reasons) but would have felt very comfortable going through with it if I had. Your oncologist should be able to help you make decisions about individual trials.

    Take care,
    Betsy
  • jana11
    jana11 Member Posts: 705
    #6
    Hi Joyce,

    I get my care at MD Anderson.. I just started a phase 1 study about 6 weeks ago. It uses established drugs, but in a new combination. Check out research in Houston and San Antonio - for texas. San Antonio is home to a lot of drug companies and does a LOT of cancer research (according to my local onc). Have your doc look into it. If you want more info about my study.. I KNOW it is still open because I am the only participant at this time. There was another woman but she dropped out.

    Email me if you would like to hear more. Good luck. Contact any of the major cancer centers: Sloan Kettering, Dana Farber, etc - they are more likely to have trials going on. Your onc should be doing the leg work trying to find you a trial. Maybe get a second opinion if your onc isn't helping you out. :)

    Stay tough.. jana
  • hopefulone
    hopefulone Member Posts: 1,043 Member
    #7
    Hi Joyce. My husband is on a clinical trial involving avastin, xeloda and oxal. It was going well, but unfortunately he's developed a small blood clot in his leg, so may have to go off the avastin or the study altogether. We'll find out in a week. It's a phase III trial. He goes to a "cancer center" in upstate NY which operates 5 or 6 centers. They found the info and did all the paperwork, etc. The NCI also lists clinical trials I believe that are going on across the country. Check out their website. Your oncologist should be also assisting you in this regard. We are currently corresponding with a clinical trial nurse at another hospital in Albany (via email) regarding theraspheres. If you do a search on theraspheres, it will give you sites across the country that may offer that procedure. Also if you haven't already, you may want to check out the Fox Chase Cancer center in PA for clinical trials or Sloan Kettering in NY. Good luck and God Bless. Keep us posted.

    Diane
  • joyceann619
    joyceann619 Member Posts: 33 Member
    #8
    Betsydoglover said:

    Hi Joyce -

    I might be "over-reading" your post, but as I read it your oncologist told you to go out and find some clinical trials. Great for you to look around, but is your oncologist doing anything for you in this regard? If not, he/she should be. If you are not getting help from your onc in this regard, then you should look for another oncologist, perhaps at a major cancer center, who will be an advocate and look for / advise you on trials.

    I wish you the best.

    Betsy

    Oh my oncologist is helping me. I am being treated at the Univ of PA Abramson Cancer Center. They have a Clinical Trials Group that I will meet with soon. I am just trying to gather some info on my own so I am prepared.
    Joyce

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