Mark yanked off study - need you now

musiclover
musiclover Member Posts: 242
edited March 2014 in Colorectal Cancer #1
I went along with my friend Mark to what I thought would be a routine appointment for his trial. He has a new oncologist - the other left last month, the one that put him on the study. New doctor dropped the bomb. CT scan number two shows disease progression - tumors in lungs are larger, tumors in liver the same (okay news), fluid in "abdominal area." No one could explain what that means. New doctor says he's off the old trial (oxaliplatin, avastin, xelodo) and presented the new-improved trial. I really felt like he was getting a sales pitch except there are no redeeming qualities to the new trial. No news, no stats just another shot in the dark.

Here is what the papers say - 3C-06-2 is the name of the trial. Drugs - Cetuximab and E7820 (this drug doesn't seem to have a name, just a number). Is anyone familiar with this? The only other alternative is to put him on standard treatment. Has anyone out there with rectal cancer stage IV with mets to liver and lungs been helped with standard treatment (I'm assuming that is 5FU)?

I could really use some encouraging words right now for him. I hated seeing him drive off - he was so devastated. The other chemo was giving him hope and was actually working for the first two months. This is rotten news to say the least.

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    Maybe it is the time to try standard methods that are known to be helpful. I don't think there is time for trying. The sooner something starts working, the better. These doctors are interested in doing research, they are not interested in the patient. I would have him do what you think is the best and fast helping.

    Let's hope and pray that Mark will be better soon.

    God Bless.
    Eleonora
  • vinny3
    vinny3 Member Posts: 928 Member
    #3
    Not familiar with the drug but you might want to look at the National Cancer Institute website which has alot of information on different cancers, chemo, trials etc. The website is www.cancer.gov. Hope you find some useful info there. Keep encouraging him and keep your chin up. We will pray for you and Mark.
    ****
  • themis01
    themis01 Member Posts: 167
    #4
    If he was doing oxilplatin, xeloda, and avastin that is a lot of the standard drugs. My mom went through ALL of the standard drugs and her disease progressed on all of them. She also had the fluid in her abdomen that was explained to us as the tumors "weeping" and basically fluid coming out. Looking back I wish we would have had the chance to try some trials but by the time she had tried all of the regular drugs and different surgeries her body was completely beaten down and the cancer was really advanced. She did oxilplatin, CPT-11, avastin, erbitux, 5FU, and some others I don't remember. It is really good that he is off the old study because once the disease progresses it means the treatment is no longer working.
  • houseofclay
    houseofclay Member Posts: 63
    #5
    Hi, I don't reply often but I did want to say a couple of things about clinical trials. The drugs Mark has been on are standard therapies for fighting CRC. I am sorry they did not work in Mark's case. If the doctor is suggesting a new trial, he is not just trying to sell Mark something. If there has been tumor progression, it's time to try something else. Whether it is a new trial or a tried-and-true drug combination is a hard decision but one that Mark needs to make along with you and the rest of team.

    For anyone to imply that doctors suggest trials for their own reasons other than patient survival is irresponsible. The goal of a trial includes trying new drugs and/or combinations of drugs but patient survival is also goal. These goals are not mutally exclusive. Another way to think about the decision to try another clinical trial is that Mark takes an awful event in his life to help others while, hopefully, helping himself.

    I think a second opinion is always a good idea although if I remember Mark's insurance situation, that might be costly. Another idea is to research this particular drug trial and see what the early data shows. I know it seemed like the trial offered no redeeming qualities but now that the shock has worn off, I would be surprised if you couldn't find more information.

    Hope that helps.
  • terril
    terril Member Posts: 296
    #6
    Hi!
    I am sorry to hear about Mark's situation. Don't give up. With some of these new drugs, there could be something that might work. Terri
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #7
    Hi Kathryn -

    I am sorry Mark is not responding. I never really understood his current "trial" as Xeloda/oxaliplatin/Avastin is standard Stage IV treatment. But, I am quite sure this trial had some subtle nuances that aren't obvious. I would quiz the doctor about what "standard treatment" means - 5FU alone is not standard treatmet for Stage IV disease.

    Has the doc provided you with written info regarding the suggested trial? When I was evaluated at NIH, they inundated me with written information and from there I was able to find more on the net.

    Good luck, Kathryn. My best to Mark. And, remember, these doctors and nurses do want to finish their protocols (i.e. find enough patients), but they are also mostly very professional and would not be "selling" you on a trial unless they thought it had a chance of benefit. It may well be that a change of drugs at this point would be good - I certainly hope so.

    Take care,
    Betsy

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