Colorectal cancer stage 4 mets to liver and lungs and now spread to brain

bernie63
bernie63 Member Posts: 3 Member
in Colorectal Cancer #1

Any one on here that knows anything about the above please help me understand what next

Comments

  • NewHere
    NewHere Member Posts: 1,429 Member
    #2

    Welcome to the boards. Sorry to have you here.

    The first thing to get an understanding as to what next is to speak with your doctors, they will have a better idea (People here can help a bit, but that is the best way. )

    All that being said, more details of what is happening may help people here give a bit more help/anecdotal things that happened here.

    That being said, some broad strokes...

    Your doctor is going to come up with a plan. Depending on the location and severity of the cancer, the plan may change. (Have you had surgery?)

    They may suggest chemo or radiation pre-surgery. If a tumor is small in one location (such as liver), but becoming more of an issue elsewhere (pressing on air ways) things may change. If you have a limited number of lung tumors, they may suggest ablation there.

    The brain tumor will probably be the focus. I am in a study right now with drugs that have been used for brain cancer and may work for colon cancer mets, depending on if there is a certain marker. They may put you on drugs for that, such as steroids - depending on the location in the brain, controlling swelling is something that often help. (I have had discussions on this with my doctors when dealing with my mets. I do not have brain mets, but do have them in my lungs, lymphs nodes and spine. Some NSAIDs even may help.)

    Try to stay as positive as you can. Try to ignore all the stats. Many of us have beaten the stats. Keep on an eye out on all trials out there. You may not need them now based on the course of treatment, but I always like knowing my next move if needed. I am now 7 years in. When I was diagnosed, a drug called Lonsurf was not yet approved for CRC. In the spring of 2020 they put me on Lonsurf (which had been approved by then) when my first two chemos stopped working. Lonsurf shrunk my tumors and got me another year plus before going into the trial.

  • bernie63
    bernie63 Member Posts: 3 Member
    #3

    Thank you so much for your reply and its so uplifting to hear your 7yrs n still going...My sister was diagnosed 2 yrs ago with corectal cancer stage 4 due to liver and lung mets.she had an colostomy. She was put on lonsurf recently and was due to start her 3rd round of tablets but was thinking of getting the dose lowered as it's been very hard on her..she is hospital at the moment as it has spread to her brain she had a shunt inserted and from what I can make out may have had some tumour removed. But what next as I think her body can't take much more she also had two very bad reactions to chemo when she was on it.

  • NewHere
    NewHere Member Posts: 1,429 Member
    #4

    I had a really bad reaction to my first dose of FOLFORI. I had radiation shortly before, but they were convinced it was the FOLFORI. It was so bad, that I told my wife there was no way I could continue. I was really sick three times. Anyway, they dropped the dose a bit and never happened again. Had 24 rounds of it and it kept things in check for about 14 months.

    What reactions did she have from the Lonsurf? There may be things to use to help alleviate the side effects if the drug is otherwise working. For instance, one of the trial drugs I am on is known to make you nauseous. I have been pretty lucky. For example, most of the time (58 rounds of chemo now) I get mild queasy and did not have to take the Zofran. Other than the one time with FOLFORI, I never vomited. Usually graham crackers, ginger snaps made it better. The current drug I need to take the Zofran an hour before. And occasionally have to pop one other times during the days.

    We have many people here who have had different drugs and reactions. There are often many good suggestions. I am sure. I had some reactions to Lonsurf - chemo belly - not nausea but a weird feeling. I also think it caused me a lot of muscle tightness and pain. Kind of a long story, but I think that was the cause. And it was off the charts.

  • bernie63
    bernie63 Member Posts: 3 Member
    #5

    The two reactions were when she was getting the chemo in oncology and took really bad seizures...she has been very sick on the lonsurf but it will have to be reviewed as mabey the sickness was due to what was happening in the brain...she is still in hospital hopefully will get home this week and her oncology team will have a plan

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