what now?

vtishome
vtishome Member Posts: 1
in Anal Cancer #1

hello, I am here because my beloved cousin has stage 4 colon cancer. He lives in Maine and is Dr set it up for him to go to MD Anderson, Richard and his family made the trip to be told this!: At MD Anderson we learned that the clinical trials they have for which Richard might fit criteria for all have waiting lists. I am so angry!! how can they call themselves number 1 if they have someone travel halfway across the country to tell them this?..

Comments

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited March 2017 #2
    Vtishome

    Wow,that must have been a massive failure of communication between your cousin's home doctor and MD Anderson if the whole point of the trip was to get into a clinical trial.Did they offer an opinion on the treatment he should do? Not sure if your cousin has colon or anal cancer (there's a difference in cell type and therefore treatment strategies) but if he has colon cancer I happen to have a friend with colon cancer who had metastisis to his abdominal cavity- lots of them like little seeds throughout the abdominal cavity. His local oncologist was just going to give more conventional chemo but he went for a second opinion at KU med center in Kansas City and they did intra-operative chemo on him- took him to surgery and bathed his abdomen and intestines where the mets were for about three hours. He's doing well now. It's not clear if he is "cured" but he has survived five years with the cancer and right now is feeling good.

     

    Its a crushing disappointment at a time where everyone is scared and you thought you'd get answers and treatment instead of frustration. MD Andrson isn't the only place for clinical trials or advanced treatment options. Google everything, don't be afraid to call anyone you think could help. Be persistent and don't give up hope.

  • mp327
    mp327 Member Posts: 4,440 Member
    edited March 2017 #3
    vtishome

    I'm sorry to hear the experience with MDA was not a good one.  Other cancer facilities that are closer to Maine that would be worth checking into, IMO, would would Dana Farber in Boston, Memorial Sloan-Ketering in NYC, and Fox Chase in Philadelphia.  I wish your cousin all the very best.

    Martha

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited March 2017 #4
    vtishome....

    Oh my, how very upset your cousin must be, and especially at this point as I would expect hes not feeling physically well. I have heard so many good things about MD Anderson and would assume there was a major lapse in communication somewhere along the lines, I am so sorry. 

    I am not sure on specifics of getting into clinical trials and I would think there are different protocals for different trials. A friend of mine recently traveled from Wisconsin to Sloan-Kettering to get his foot in the door (which amounted to getting his name on a waiting list as well) for a trial for pancreatic cancer. Once there he had a very brief meeting with the doctor, was given some information, and told he qualified (I assume they reviewed his medical reports from home), but that now it was a waiting game. He too is frustrated as the clock ticks for him! 

    It must be so emotionally difficult to be so excited to have a plan, only to be told to wait with no date set!

    I will have your cousin and family in my thoughts and prayers for a speedy plan of action.

    katheryn

  • tanda
    tanda Member Posts: 174 Member
    edited March 2017 #5
    vtishome

    I don't know very much about clinical trials.  I'm guessing that maybe this trial was unique to MDAnderson (perhaps no other treatment sites on the east coast) or an early phase (1 or 2) trial with very few subjects, or an immunotherapy trial(very new and very few places offer these). I assume your cousin met the trial criteria and is still on the waiting list .  Perhaps a place will open at MDAnderson or another site or a similar trial will open elsewhere, or mayne he could have the same treatment off trial. In any case, the disappointment, and anger must be overwhelming, especially given the distance travelled by someone who is probably not feeling very well.

    You are  more welcome here for information and support, however there are a number of excellent colon cancer sites online.  Colon Cancer Alliance, acor.org(has a colongroup) Colontown and some others.  The people on these sites are usually VERY knowledgeable and very supportive; sometimes they know, in advance, of a new trial opening etc.

    I hope something opens very soon and your cousin will be offered a new and promising treatment.

     

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