to participate in clinical trial...or not

billysaunt
billysaunt Member Posts: 3
edited March 2014 in Colorectal Cancer #1
Hi, everyone. I am looking for some advice from people who may have already had these treatments. My 25 year old nephew has stage 2 colon cancer, had the tumor removed in an ileostomy surgery and now must undergo chemo. The doctors have presented him with the option of taking part in a research study to forego the traditional chemo. drugs used AT HIS STAGE. There are three groups which he would be randomly placed in. Group A: Oxaliplatin, 5-FU and Leucovorin (CF) (FOLFOX) Group B: Irinotecan (CPT-11), 5-FU, and CF (FOLFIRI) or Group C: Treating first with Oxaliplatin, 5-FU, and CF and then treating with Irinotecan, 5-FU and CF. It goes on to state that "the reason for the study is to find out the effectiveness of the three different combinations of drugs in preventing the return of your colon/rectal cancer (these treatments, namely Irinotecan and Oxaliplatin, are considered investigational in the stage of colon cancer that you have)" If anyone has had any of these treatments please let me know how it worked, the side effects, success, etc. It is such a hard decision for someone so young. Thanks for your reply.

Comments

  • mikew42
    mikew42 Member Posts: 114 Member
    #2
    billysaunt, I am sorry to hear of your nephew. I can't imagine dealing with this at such a young age. I am 42 with Stage 4. All of those options seem to be standard chemo treatments. I am on the Group B treatment although I am not in a clinical study. I have a treatment on Fridays (usually 3 hours) for three striaght weeks then get a week off. This is supposed to go on for 6 months. I have had 4 treatments so far and only minimal side effects (a little tired for 2-3 days, slight naseua).
    Mike
  • Tessyann
    Tessyann Member Posts: 56
    #3
    Hi Billysaunt, I think he should,I really like him to see if he cant get on Irinotecan also known as CPT 11 why ? cause my husband was stage 3 when first dx,... failed twice on 5fu with 2 different added combos... tho Irinotecan is a more ruffer chemo aka side affects it gave him the longest remission 6 years... its ashame they just dont give it and only reserve certain drugs for certain stages I believe all should be given all avalible chemos. Why not shoot for the stars before its given a chance to recurr
    Best of luck
    Teresa
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #4
    Tessyann said:

    Hi Billysaunt, I think he should,I really like him to see if he cant get on Irinotecan also known as CPT 11 why ? cause my husband was stage 3 when first dx,... failed twice on 5fu with 2 different added combos... tho Irinotecan is a more ruffer chemo aka side affects it gave him the longest remission 6 years... its ashame they just dont give it and only reserve certain drugs for certain stages I believe all should be given all avalible chemos. Why not shoot for the stars before its given a chance to recurr
    Best of luck
    Teresa

    Hullo billysaunt---I too had stage 2(australian system--think they are the same) and have recently completed 5fu/leucovorin.I was never offered other regimes although I had heard about them.At this stage I am considered all clear and the followups will determine whether there is any re-occurance.I guess it is a hard decision to make --but also that in the final analysis someone has to be involved in trails.If offered I would have probably taken the best shot available as I was told that my regime would only cut 3% off the probability of re-ocurance.
    We are sorry to hear that your nephew has cancer at such a young age and please pass on our love and best wishes.--kanga n Jen
  • jgomez
    jgomez Member Posts: 25
    #5
    Billysaunt, I went with group C, but I started with Irinotecan for 3 months and the next 3 months with Oxaliplatin. My treatments were every two weeks.
    I had stage 3 with 4 positive lymph nodes. In addition with chemotherapy I was careful with my diet, I didn't do much exercise, but its highly recomended.
    It's been 3 years, and so far I've been clean of ca. And I was 35 years old.

    Take care and have faith.
    Jose
  • Unknown
    Unknown
    #6
    jgomez said:

    Billysaunt, I went with group C, but I started with Irinotecan for 3 months and the next 3 months with Oxaliplatin. My treatments were every two weeks.
    I had stage 3 with 4 positive lymph nodes. In addition with chemotherapy I was careful with my diet, I didn't do much exercise, but its highly recomended.
    It's been 3 years, and so far I've been clean of ca. And I was 35 years old.

    Take care and have faith.
    Jose

    Jose, you have the same diagnosis as my husband Bert....stage III with four nodes involved. To know that it's been three years for you gives me such hope and encouragement for Bert....thank you!!!

    On his HMO, Bert was on just 5fu/leuc for four months but when I switched his insurance to my PPO and got him to a new oncologist, he was immediately placed on 5fu/leuc/oxal and has been on this regime for another 4 months. I think the onc plans to keep him on it for a full 6 months which is what he feels Bert should have gotten from the get-go!

    Again, thank you for sharing.

    Monika
  • 4mykids
    4mykids Member Posts: 33
    #7
    I can only comment on side effects on some of the drugs mentioned. I have been on 5FU/leuc once a month continuously since my dx (June 2003). On their own, they give me almost no negative side effects (just a little tired for a couple days). But most treatments have been combined with other drugs. I will give you all of them because I don't know all the different names for the same drug!! First was cisplatin (liver infusion) (once a month). That was pretty rough for 4-5 days with nausua, fatigue, but then bounced back after that. Second was camptosar (irinotecan, I think?). That was weekly with one week off after 3 weeks, and I had no problems with that until the last couple of treatments with a bit of diarrhea. The third was/is oxaliplatin (liver infusion). I just had my first treatment of that a little over a week ago. It knocked me flat on my b*&%!! Severe nausua, fatigue, diarrhea, fever. I am better now, but it took a good week before I was up and around. I was told it was not as harsh to the system at the cisplatin, but I beg to differ. However, I am curious how others have tolerated it. I was pretty run down from diarrhea and fever right before treatment and perhaps that led to difficulty tolerating the treatment. I plan to discuss this with onc next week at appt prior to next treatment.

    Of course, everyone reacts very differently to treatments, so these are only my personal reactions. I hope this info helps, though, in some way.

    I wish you and your nephew much luck, thoughts, and prayers!!

    Michelle

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