Need help - re: lung mets and chemo

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musiclover
musiclover Member Posts: 242
edited March 2014 in Colorectal Cancer #1
Thanks to all that posted to my plea below. I felt like my friend WAS being pressured into this decision. They need to move fast - CT results showed mets, several now, in liver and some in lung. Doctor could not tell me how many and how big! The new trial that they just threw at him (after he agonized and signed papers for another one) sounds very scary. There are six different combinations of drugs - either Folfiri/Avastin, Folfiri/Cetuximab, Folfox/Avastin, Folfox/Cetuximab, Folfox/Cet. AND Avastin, Folfiri/Cet. AND Avastin. The doctor himself chooses either Folfox or Folfiri, the study chooses the others. The side effects cover eleven pages of the twenty page study, they don't know anything about how patients are responding to it since it is the first phase. Nevertheless, the oncologist is pushing this one because it is new and cutting edge. They simply are not helpful with any statistics perhaps because there aren't any. Questions: does anyone know anything about these drug combos and 2) Anyone know about how the Avastin/Oxy/Xeloda works on lungs mets? Is Avastin successful shrinking lung mets? These studies are his two choices right now. Really could use some guidance/support for a very distraught friend.

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  • midnte0708
    midnte0708 Member Posts: 166
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    Hi,

    My father has been on the Folfiri/Avastin every other week since Aug 2005 for liver mets. His CEA has came down a lot and the scans he has every couple months have showed "no change" meaning cancer is not progressing. Also, the doctor said even though the cat scan shows "no change" the cancer could be dieing off since the scan only sees the "mass" and does not distinguish between dead or live tumors (or at least that is my understanding of everything).
    He still works full time and side effects are not too bad (not bad enough to keep him home from work).

    Good Luck with your friend.

    Sue
  • midnte0708
    midnte0708 Member Posts: 166
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    Actually I just got a call from my father after I sent the previous message and he just got the results of last weeks scan and doc said several of the large tumors have "disappeared."
    Chemo does work!
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
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    Hi Kathryn - I am sorry to hear this. I wish I could offer some good advice. I know Xeloda/oxy/Avastin worked well for me, but I don't have lung mets - "just" liver. When I saw my oncologist last Friday she said that EVERY patient she has put on this protocol has done well, but again, it was a casual convo (she had no appt right after mine - a definitely unusual occurrence - so we just chatted in the hall for a while) and she may well have really meant every patient with a few liver mets has done well - I just don't know.

    Is the doctor giving you guys any guidance? On what basis would he/she choose the Folfox or Folfiri? Sounds like the trial is aimed at comparing Avastin and Cetuximab either separately or combined. Which sounds interesting, but also very scary for a patient. I think the lack of statistics is not a big loss. Statistically speaking the results often look dismal ( X months survival vs Y months), but there are so many exceptions to these statistics that I think it is more troubling to look at them - best to just keep on fighting. Regarding lung, maybe Jana has some input (Geeze - I hope she will be ok with her surgery) - but probably not until after she has sufficiently recuperated to bother with a bulletin board.

    Kathryn - I wish I could give you some magic advice. Do you think Mark is "being pressured" because County hospital is involved? Bad as all this is, it really isn't an emergency - you have a few weeks to consider options? (I forget - when was his surgery? No one wants to use Avastin until around 6 weeks post surgery and I would not be surprised if Cetuximab is not the same - though I haven't looked it up.)

    I'll be thinking of you and Mark and again I want to tell you just how lucky Mark is to have you as his friend.

    Good luck with decision - and once you make it try and go forward with a positive attitude, for there is definitely more than one way to skin this cat (and for the life of me, I never understood why anyone would want to skin a cat - did it once in an Anatomy class, and that was enough for me!)

    Betsy
  • CAMaura
    CAMaura Member Posts: 719 Member
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    Have any of the docs spoken about Erbitux? I know it is used with lung mets. You might want to get a second or third opinion regarding teh protocol. It could allow Mark to sift through ideas and decide what is the best thing for him... All the best to you both - Maura
  • nanuk
    nanuk Member Posts: 1,358 Member
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    Something is wrong here..these protocols have been in place for over a year, some more..there have to be some statistics. trial results, etc. just make sure you are accepting whatever you accept; that you are comfortable with the
    treatment, and the possible side effects..no one can give you guarantees. They obviously don't know what works..otherwise they wouldn't be offering choices. Emily's oncologist came down with colon cancer, and is now juicing.. who knows...? in the end, the patient makes his/her hopefully informed decision, and is ultimately responsible for the consequences.. each trial has a disclosure document
    (can't think of the label..) for the professionals, and another for the patient. insist on the former.. Bud
  • musiclover
    musiclover Member Posts: 242
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    nanuk said:

    Something is wrong here..these protocols have been in place for over a year, some more..there have to be some statistics. trial results, etc. just make sure you are accepting whatever you accept; that you are comfortable with the
    treatment, and the possible side effects..no one can give you guarantees. They obviously don't know what works..otherwise they wouldn't be offering choices. Emily's oncologist came down with colon cancer, and is now juicing.. who knows...? in the end, the patient makes his/her hopefully informed decision, and is ultimately responsible for the consequences.. each trial has a disclosure document
    (can't think of the label..) for the professionals, and another for the patient. insist on the former.. Bud

    You have a good point. This just sounds like a crap shoot and if anyone gets horrific side effects, well they are helping the future lot coming into the trial. That is noble but I want Mark to survive not be a statistic. There are too many choices here - six different arms. They have no information for me regarding any results whatsoever. Sometimes too many choices can be paralyzing.
  • CAMaura
    CAMaura Member Posts: 719 Member
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    You have a good point. This just sounds like a crap shoot and if anyone gets horrific side effects, well they are helping the future lot coming into the trial. That is noble but I want Mark to survive not be a statistic. There are too many choices here - six different arms. They have no information for me regarding any results whatsoever. Sometimes too many choices can be paralyzing.

    It is so important that mark have faith in his docs and in the decisions that are made together. he is not a lab rat and should not be made to feel that he is being thrown into anything. I really hope that he can find someone with whom he can develop a trusting relationship and help him make informed decisions abaout his treatment plan. Again, wishing both of you the best - Maura
  • musiclover
    musiclover Member Posts: 242
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    CAMaura said:

    Have any of the docs spoken about Erbitux? I know it is used with lung mets. You might want to get a second or third opinion regarding teh protocol. It could allow Mark to sift through ideas and decide what is the best thing for him... All the best to you both - Maura

    Side effects of Erbitux are scary when it comes to the lungs. Same with the Oxiplatin. It is "only" 1 in 100 - sounds like too much to me. Any thoughts?