Oxaliplatin, Xeloda, Avastin "not working" whats next??

trish07
trish07 Member Posts: 138
edited March 2014 in Colorectal Cancer #1
Anyone have any ideas about what might be next? Tried Xeloda alone, kept it stable for awhile then wasn't able to hold it. Next,Avastin with xeloda, severe reaction to Avastin, had to stop. Next, 5 rounds of Oxaliplatin with 4,000 mgs. a day of Xeloda [14 on 7 off], no change. Any ideas of what we might expect next, besides a clinical trial? My husband has a rare cancer [ appendiceal mucinous adenocarcinoma with pmp syndrome ] there is no proven treatment for this though they do seem to be able to hold it back using the same treatment for colon cancer since it behaves and spreads very similarly.

Any thoughts are appreciated, Trish

Comments

  • snommintj
    snommintj Member Posts: 601
    #2
    folfox
    maybe he should try the pump. He will get 6 hrs of chemo then have to where a 5-fu pump for 46 hours. I haven't tried xeloda yet but I know that when a cell metabolizes xeloda it makes 5-fu. It sucks about his reaction to avastin, it's pretty effective. He may also get put on folfiri, which is 5-fu and irenotecan. I don't respond to folfiri, but many folks do. There are several clinical trials currently enrolling. Hopefully your husband's cancer won't metastasize to a vulnerable area.
  • bdee
    bdee Member Posts: 304
    #3
    appendiceal mucinous adenocarcinoma with pmp syndrome
    I have this same condition and nothing has been helping my tumors, either. I am able to take Avastin, not able to take Oxaliplatin. My doctor tells me there aren't anymore drugs to try that wouldn't affect me like Oxaliplatin and since it almost killed me he doesn't want to try anymore. We are going on vacation September 4 for a week. When we get back I'll have another doctor's appointment on Monday September 14. I'm going to ask him, then, to try one of the ones who thinks will affect me too harshly. He won't know until he tries.
    What ever it is, I'll write you.

    Debbie
  • trish07
    trish07 Member Posts: 138
    #4
    snommintj said:

    folfox
    maybe he should try the pump. He will get 6 hrs of chemo then have to where a 5-fu pump for 46 hours. I haven't tried xeloda yet but I know that when a cell metabolizes xeloda it makes 5-fu. It sucks about his reaction to avastin, it's pretty effective. He may also get put on folfiri, which is 5-fu and irenotecan. I don't respond to folfiri, but many folks do. There are several clinical trials currently enrolling. Hopefully your husband's cancer won't metastasize to a vulnerable area.

    Thank you snommintj
    When he was diagnosed his appendix had already burst spreading the mucinous tumor throughout his peritoneal cavity causing a blockage. Had emergency ileostomy. Then debulking surgery [ 7 lbs. of tumors,removed part of large colon and sections of small intestine, spleen e.t.c.]. Also has several in lungs,largest being 7mm. Really watching the liver, tumors are attached to outside causing scalloping. Had ileostomy reversal about 4 months after debulking. Thank you for the info. When seeing the oncologist I like to have at least heard of what he is talking about. Sounds like that is what many people on this site are doing for their treatment.

    Thanks Again, Trish
  • trish07
    trish07 Member Posts: 138
    #5
    bdee said:

    appendiceal mucinous adenocarcinoma with pmp syndrome
    I have this same condition and nothing has been helping my tumors, either. I am able to take Avastin, not able to take Oxaliplatin. My doctor tells me there aren't anymore drugs to try that wouldn't affect me like Oxaliplatin and since it almost killed me he doesn't want to try anymore. We are going on vacation September 4 for a week. When we get back I'll have another doctor's appointment on Monday September 14. I'm going to ask him, then, to try one of the ones who thinks will affect me too harshly. He won't know until he tries.
    What ever it is, I'll write you.

    Debbie

    bdee
    We are traveling to Stanford University Cancer Center today to see oncologist. I will let you know what his suggestions are for next treatment. I think we will be taking a chemo holiday first to give his body a rest and just so he can feel o.k. for awhile. Dr. usually has him take short breaks now and then for quality of life purposes.Also, sometimes the cancer becomes more reactive to treatment with breaks. Thank you bdee, I know you must be so excited about your trip to London and Paris, a girls dream! Will let you know what the Dr. said when we get back this evening.
  • sfmarie
    sfmarie Member Posts: 602
    #6
    trish07 said:

    bdee
    We are traveling to Stanford University Cancer Center today to see oncologist. I will let you know what his suggestions are for next treatment. I think we will be taking a chemo holiday first to give his body a rest and just so he can feel o.k. for awhile. Dr. usually has him take short breaks now and then for quality of life purposes.Also, sometimes the cancer becomes more reactive to treatment with breaks. Thank you bdee, I know you must be so excited about your trip to London and Paris, a girls dream! Will let you know what the Dr. said when we get back this evening.

    Trish07
    I went to a talk there last night about the latest in radiation treatments. Maybe he could benefit from one of them. As to mets to the peritoneum, there is the chemo washing they do at UCS. Good luck, you are in my prayers.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #7
    Gleevec or periotinatal chemo wash
    Hi,

    I'm not positive about the two I mentioned above, but my oncologist talked to me about Gleevec (I think that's how it's spelled) as the next thing to do in case my irinotecan (also called CPT-11 or Camptosar- have you tried that yet? It works well on many people). I believe Gleevec for this type of cancer would have to be on a clinical trial, as it isn't on the approved list for this type. You should google Gleevec clinical trials.
    Also, you didn't mention about having tried the hot chemo bath- which is when they put some kind (not sure what kind) of chemotherapy in your open abdomen, heat to a fairly high degree, then basically "wash" your whole inside of your pelvic or abdominal cavity in it. I know Dr. Lowy at UCSD/Moores (San Diego) does this, but I've heard of a few others around the country on the board also having this done. Please look into those options and ask your oncologist about finding clinical trials for Gleevec or anything else that might work. If your oncologist isn't knowledgeable about clinical trials, then contact the larger cancer centers near you, if you haven't already. Best wishes to you-

    Lisa
  • trish07
    trish07 Member Posts: 138
    #8
    lisa42 said:

    Gleevec or periotinatal chemo wash
    Hi,

    I'm not positive about the two I mentioned above, but my oncologist talked to me about Gleevec (I think that's how it's spelled) as the next thing to do in case my irinotecan (also called CPT-11 or Camptosar- have you tried that yet? It works well on many people). I believe Gleevec for this type of cancer would have to be on a clinical trial, as it isn't on the approved list for this type. You should google Gleevec clinical trials.
    Also, you didn't mention about having tried the hot chemo bath- which is when they put some kind (not sure what kind) of chemotherapy in your open abdomen, heat to a fairly high degree, then basically "wash" your whole inside of your pelvic or abdominal cavity in it. I know Dr. Lowy at UCSD/Moores (San Diego) does this, but I've heard of a few others around the country on the board also having this done. Please look into those options and ask your oncologist about finding clinical trials for Gleevec or anything else that might work. If your oncologist isn't knowledgeable about clinical trials, then contact the larger cancer centers near you, if you haven't already. Best wishes to you-

    Lisa

    Back from Stanford...
    Chemo holiday!! With this cancer its all about watch and wait. Even though the oxaliplaitin didn't shrink it, it's no larger. Oncologist said we will be trying the
    CPT-11 next, of course not with Avastin, so I'm guessing with Xeloda. He has incorporated that with all other treatments. As far as the heated chemo wash, husband was diagnosed at stg.1V, spread was too extensive for complete cytoreduction which is neccesary for chemo wash to be effective. Dr. also mentioned the KRAS mutation, which last visit they said was positive. Is that a pre-requisite for CPT-11? He got away before I got that question out. Or maybe he mentioned it because he's also thinking of another drug. Anyway, 3 months off!

    Thank you All so much for your responses, Trish
  • dmdwins
    dmdwins Member Posts: 454 Member
    #9
    trish07 said:

    Back from Stanford...
    Chemo holiday!! With this cancer its all about watch and wait. Even though the oxaliplaitin didn't shrink it, it's no larger. Oncologist said we will be trying the
    CPT-11 next, of course not with Avastin, so I'm guessing with Xeloda. He has incorporated that with all other treatments. As far as the heated chemo wash, husband was diagnosed at stg.1V, spread was too extensive for complete cytoreduction which is neccesary for chemo wash to be effective. Dr. also mentioned the KRAS mutation, which last visit they said was positive. Is that a pre-requisite for CPT-11? He got away before I got that question out. Or maybe he mentioned it because he's also thinking of another drug. Anyway, 3 months off!

    Thank you All so much for your responses, Trish

    CPT 11 - no erbitux
    Hi Trish

    The KRas mutation lets your doctors know that Erbitux is not an option. CPT-11 is commonly given to those of us that are Kras mutants. I had Folfox but CPT-11 would be my second line therapy if there is a reoccurence. Hope that helps.

    Dawn
  • trish07
    trish07 Member Posts: 138
    #10
    dmdwins said:

    CPT 11 - no erbitux
    Hi Trish

    The KRas mutation lets your doctors know that Erbitux is not an option. CPT-11 is commonly given to those of us that are Kras mutants. I had Folfox but CPT-11 would be my second line therapy if there is a reoccurence. Hope that helps.

    Dawn

    Thank you dmdwins
    Bingo! That must be why he mentioned the KRAS mutation...I knew there was a drug that was not an option but I had forgotten the name. So now he will just try to enjoy his 3 mth. chemo holiday and hopefully the CPT-11 will be the one that will have some effect.

    Thanks again and thank you to everyone for posting,
    Trish
  • trish07
    trish07 Member Posts: 138
    #11
    bdee said:

    appendiceal mucinous adenocarcinoma with pmp syndrome
    I have this same condition and nothing has been helping my tumors, either. I am able to take Avastin, not able to take Oxaliplatin. My doctor tells me there aren't anymore drugs to try that wouldn't affect me like Oxaliplatin and since it almost killed me he doesn't want to try anymore. We are going on vacation September 4 for a week. When we get back I'll have another doctor's appointment on Monday September 14. I'm going to ask him, then, to try one of the ones who thinks will affect me too harshly. He won't know until he tries.
    What ever it is, I'll write you.

    Debbie

    CPT-11
    bdee, when you see your Dr. ask him about the CPT-11 [ irinotecan ]. Of course since my husband hasn't tried it yet, I don't know what effect it will have. Avastin almost killed him and oxaliplatin didn't shrink it but we will continue to try until there are no drugs left. Has your Dr. tested for the KRAS mutation? So ask about CPT-11 and testing for the KRAS mutation. Your Dr. saying there aren't anymore drugs to try concerns me.
    Let me know what he says,
    Take good care, Trish

    * Another post said that if you don't have the KRAS mutation you could also try Erbitux.
    My husband is positive for Kras.
  • dmdwins
    dmdwins Member Posts: 454 Member
    #12
    trish07 said:

    Thank you dmdwins
    Bingo! That must be why he mentioned the KRAS mutation...I knew there was a drug that was not an option but I had forgotten the name. So now he will just try to enjoy his 3 mth. chemo holiday and hopefully the CPT-11 will be the one that will have some effect.

    Thanks again and thank you to everyone for posting,
    Trish

    A break
    It is good sometimes to have a chemo break. It is so tough on our bodies. I hope that
    CPT-11 will be the one to just destroy that darn cancer. I will keep you and your hubby in my thoughts and prayers. Keep us updated.

    Smiles,
    Dawn

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