MRI and mutations - Update

Tueffel
Tueffel Member Posts: 327 Member
edited October 2020 in Colorectal Cancer #1

So hello guys,

A month back my dad had a little jaundice. They didnt find anything on the USG, so last week a MRI was scheduled. 

Today they think that there is a hemangioma in his liver. A benign tumor. They will check it further on Friday after the chemotherapy number 6. He will have 2 more as far as I know.

His mutations got back today. I just got a paper with it and I wasnt there so I am not 100% what I write is correct. He has a KRAS mutation. BRAF is WT and MSS. I read that MSS is present in ummunocompromised patients and my dad is that. But I also read that MSS excludes for immunotherapy and that mutations are general a poor prognostic factor in studies...

What are your experiences with it?

 

Update 16th October

So today was the USG with contrast. They postponed the chemo 6 because of further checking. My dad met his oncologist today (they are a team but one is basically his favorite). My dad was joking because of the IT that it didnt work and they had no MRI. The oncologist was furious because the radiologist wrote something about liver metastases but has no qualifications for it and was talking about things they have no idea about. 

The USG showed a small cyst, nothing else. They wont worry about the cyst and will just continue next week with normal chemo. So Papa cets a week of break and then 3 more chemos. 

Comments

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    #2
    It is being found that if

    It is being found that if tumour burden is high enough with MSS, I believe somewhere around 8, then immunotherapy could work.  

  • NewHere
    NewHere Member Posts: 1,429 Member
    #3
    I Am KRAS MSS

    KRAS Mutation may take some drugs off the table to being used.  MSS was/generally is considered not subject to immunotherapy.  But when my cancer came back for the third time in three years (three years ago today) there were trials and studies going on to use immunotherapy on MSS.  I am not sure of the current state of trials (SnapDragon looks to have updated information there.)

    I also have other mutations.  

    Various mutations and other things may, in fact, provide a route for different treatments.  I have some form of BRAF mutation that a doctor said opens up certain kinds of treatments that are more successful.  I have not pursued these avenues, thought I was going to start.  They put me on Lonsurf when COVID started, after the FOLFORI stopped being effective for me in December of last year (and had FOLFOX in 2015) to try to slow down/stop growth.  Found out in August, first scan after I started Lonsurf, that it was shriking all my cancer.  So keeping on it for as long as it works.

    I have about 80 tumors in my lungs, a couple in my spine, many lymph nodes.  The first indication that had cancer was a scan in December 2014.

    What that all means is that do not get bogged down in the poor prognosis aspect and instead go to the NIH site to look for trials, and try to keep your Dad as positive as possible.  I biked an hour and a half on a trainer yesterday and do did almost a mile the day before swimming.  Bottom line, I am probably healthier than most people, except for the cancer thing Laughing

     

    Try to stay positive, and if you ahve any questions, I am happy to answer them to the extent I can.

  • Tueffel
    Tueffel Member Posts: 327 Member
    edited October 2020 #4
    SnapDragon2 said:

    It is being found that if

    It is being found that if tumour burden is high enough with MSS, I believe somewhere around 8, then immunotherapy could work.  

    Dont

    I dont really want him to have that anyways but you know reading it and I was like "this cancer will come back" but that doesnt have to be. The studies are older and he might be treated differently now because of new guidelines. 

    For now he wont have chemo until they discussed him on the tumor board. I dont believe that this is a bad sign. As far I understood it was not because of side effects but more because they might punctuate the hemangioma (risk of rupture and inflammation) and look how the new guidelines applies to my dad. I should not read all the bad stuff on the internet.

  • Tueffel
    Tueffel Member Posts: 327 Member
    #5
    NewHere said:

    I Am KRAS MSS

    KRAS Mutation may take some drugs off the table to being used.  MSS was/generally is considered not subject to immunotherapy.  But when my cancer came back for the third time in three years (three years ago today) there were trials and studies going on to use immunotherapy on MSS.  I am not sure of the current state of trials (SnapDragon looks to have updated information there.)

    I also have other mutations.  

    Various mutations and other things may, in fact, provide a route for different treatments.  I have some form of BRAF mutation that a doctor said opens up certain kinds of treatments that are more successful.  I have not pursued these avenues, thought I was going to start.  They put me on Lonsurf when COVID started, after the FOLFORI stopped being effective for me in December of last year (and had FOLFOX in 2015) to try to slow down/stop growth.  Found out in August, first scan after I started Lonsurf, that it was shriking all my cancer.  So keeping on it for as long as it works.

    I have about 80 tumors in my lungs, a couple in my spine, many lymph nodes.  The first indication that had cancer was a scan in December 2014.

    What that all means is that do not get bogged down in the poor prognosis aspect and instead go to the NIH site to look for trials, and try to keep your Dad as positive as possible.  I biked an hour and a half on a trainer yesterday and do did almost a mile the day before swimming.  Bottom line, I am probably healthier than most people, except for the cancer thing Laughing

     

    Try to stay positive, and if you ahve any questions, I am happy to answer them to the extent I can.

    You know

    You know reading your post was terrible for me. You know I would like my dad to be done with it, no meds etc but I know your story (which is impressive because you are fighter) and I was like "As a family that road might be really hard" because I dont know if my dad is still willing to find if there is a recurrence or just prolonging life. But then what I believe is into medicine. There are so many developments, we might manage it. 

    So dad had no MRI today because IT system crashed. They will check the hemangioma, moght puncture it to prevent rupture or inflammation. Next week is tumor board because of the hemangioma and possible new guidelines to treat, also to discuss the after care. I believe the mutations are known longer already so who knows what will actually change. Chemo number 6 is postponed for now. We will know more next week. 

    The doctor told us that they can cet every drug even if they are not admitted in the EU. You know I am in Germany, so everything is different. Still they would import it. I can just say: I have trust in the doctors and I should stay away from old studies

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    #6
    I read a person on another

    I read a person on another board had successful immunotherapy on her solid MSS tumor. She had several inoperable mets and so was a candidate for a trial. She reported her CEA as being below 1 and NED on scans.

  • Tueffel
    Tueffel Member Posts: 327 Member
    edited October 2020 #7
    Real Tar Heel said:

    I read a person on another

    I read a person on another board had successful immunotherapy on her solid MSS tumor. She had several inoperable mets and so was a candidate for a trial. She reported her CEA as being below 1 and NED on scans.

    Developing

    Good to hear that they are developing things. What makes me happy, is that they are developing many drugs against cancer. Still not all are cured but I am hopeful for the future!

    Hope your friend will stay fine

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