Boyfriend with Stage IV mCRC - MSI/MSS status until now not performed - what to do

annarama
annarama Member Posts: 6 Member
edited August 2022 in Colorectal Cancer #1

Hi,

I am a bit in a bind, to put it gently. So as it turns out I went to a couple of doctors for a second opinion because my boyfriend currently being on Avasting and Xeloda (having previously operated twice on for liver mets) has had a progression in the last three months while on them (5 new lung mets, they were two in January) and I have just found out that his tumor has not been tested for MSI/MSS status (at his current clinic) - as you might have guessed the other doctors have asked for it from the get go.

Has anyone gone through this and what happens if we don't have the tumor now, how will they check for MSI/MSS? The current doctor just gave me the contacts from the company that performs - them (obviously the tumor had been tested for a KRAS mutation there too (July 2020) so they could have done the check for MSI too). I obviously told the doctor I know how the analysis is done, but he deflected and just referred me further. I am just wondering, because now I am beyond my wits with sadness and anger... if anyone else has gone through this and what they did?

Oh and he had been diagnosed early 2019, he has been to the same private clinic since so you can imagine what is going through my head now.

Thank you for any of your answers,

Anna

Comments

  • abita
    abita Member Posts: 1,152 Member
    #2

    Are you saying he has 7 lung mets(5 new plus the 2 that were there since Jan), and no other mets?

    Why do you feel the need to test for MSI/MSS? Why are they thinking that is the issue, and not just that Xeloda stopped working so time to move to a new chemo? Also, why can't a biopsy be done? I don't understand why they didn't do a full testing for all mutations, and only check for KRAS.

  • annarama
    annarama Member Posts: 6 Member
    #3
    https://csn.cancer.org/discussion/comment/1699707#Comment_1699707

    Thanks for your reply, Abita.

    When he was diagnosed he already had liver mets (no lung mets). The last surgery for liver mets was in January. The two lung mets were there since 2020, recent very rapid progression was this year under Avastin and Xeloda (last PET CT on the 17th of June). He previously had chemo with Oxaliplatin and Irinotecan (+Avastin since 2021). Oxaliplatin gave him a third grade allergic reaction and they stopped treating him with it and they stopped Irinotecan last year in december when they detected two new liver mets (that he had surgery for in Jan).

    They tested for AllRAS, he has a KRAS G12D mutation (I wrote that in a haste).

    The thing is I live in Europe and I have written to a lot of doctors for a medical second opinion (all doctors requested the MSI/MSS testing to be done) and afaik some immunotherapy and medication requires this testing. It is even mentioned in one of his files from 2020 that this test has to be done (signed by his doctor) and they have the results nowhere nor has this test have been performed. Now not only do I not have this results to give to the other doctors, but I am a bit baffled as to why this treatment is being continued (since he has taken also Xeloda before, not only Avastin and the lungs are being invaded by new mets.

    Meanwhile I have found out that the private hospital still has the paraffin-embedded tumor tissues, but I don't know if it's enough left for the test.

  • abita
    abita Member Posts: 1,152 Member
    #4
    https://csn.cancer.org/discussion/comment/1699714#Comment_1699714

    I still don't understand why a biopsy isn't possible, if there are tumors.

    I know all about the reaction to oxaliplatin. I ended up with the rapid response team taking me to the ED. Not pleasant.

  • annarama
    annarama Member Posts: 6 Member
    #5
    https://csn.cancer.org/discussion/comment/1699721#Comment_1699721

    Yes, that is what happened to him to while they were administering Oxaliplatin, sadly. I also don't, I am at my wits end.

  • vivgrl
    vivgrl Member Posts: 34 Member
    #6

    I don't have an answer to your question but I noticed that you said your boyfriend had been treated with Oxaliplatin until he had an allergic reaction and the drug was stopped. I had a severe allergic reaction and the drug was stopped. I am now back on Oxaliplatin and being given the drug on a slow drip over about 12 hours. I am admitted to the hospital overnight for this purpose. Then I go home with the chemo pump for 46 hours. I don't know if your boyfriend could go on a slow drip too but Oxali is a first line drug and might be effective. I just had a scan and it is working.

  • abita
    abita Member Posts: 1,152 Member
    #7
    https://csn.cancer.org/discussion/comment/1699767#Comment_1699767

    I was on it like that too after my recurrence, for about 5 months. lots of allergy meds during the infusion. I kept going until I got rigors from oxaliplatin.

  • vivgrl
    vivgrl Member Posts: 34 Member
    #8
    https://csn.cancer.org/discussion/comment/1699769#Comment_1699769

    I've never heard of rigors. Lots of allergy meds for me too during the infusion. I've been doing it for about 2 1/2 months. I wish it would work forever but I know it won't. Trying to be "present".

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