My Brother was just diagnosed with stage 4 colon cancer

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  • Jennilynn72080
    Jennilynn72080 Member Posts: 10
    #22
    Trubrit said:

    Welcome to the forum

    I am sorry you find youself here, searching for help for your brother and family. 

    37 is so young. Far too young to be dealing with the horror of CRC. But, its a done deal now, and moving forward is what comes next. 

    I think findthe...... has been quite succinct in their post, but I will add a couple of things that helped me on my trip - and what a trip -

    A notebook. A big notebook.  I wrote down everything that was happening to me, no matter how small or big, or how unrelated I thought it might be to Cancer or treatment. I took that book with me to every appointment, and I went though everything with my Oncologist.  I listed problems from the top of my head to my toes, and then the emotional side as well.  I know that on the first visit, my Onc popped his head around the door and wished me luck, and I called him back. He learned very quickly that I would need some time with him at each visit. 

    Depending on the treatment, other advice will be forthcoming from all here.  Treatment effects us each individually, but there are some givens.  Take the hair loss thing, I did lose my hair (see my lovely picture) but others didn't.   Neuropathy, cold sensitivity, mouth sores, these are a few givens if a patient is on Oxaliplatin.  

    But, lets not jump ahead too far. Thats another bit of advice. It can be terribly overwhelming if you look too far ahead. Take every day as it comes, and every step of treatment as it comes along. 

    I personally didn't take suppliments, others take many. It is a personal choice, made after careful study and deciding what is best for you (in this case, your brother's decision). 

    What Chemo cocktail will he be on? That will help us give you more targeted advice. 

    Everyone needs to be positive. Once treatment starts, the shock of diagnosis actually lessens. Doing something about the Cancer is a huge step for the mind. 

    Good luck to your brother and to you and all those who love him. 

    Visit often. We're here to help. 

    Tru

     

    Hes 34... I'm 37. Lol thank

    Hes 34... I'm 37. Lol thank you for ypur input... everyone is so helpful and comforting.  Makes this journey a bit less painful. 

    Not sure of the chemo cocktail yet. He is at his consult as we speak. 

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #23
    BRHMichigan said:

    Treated myself to a haircut. 

    Treated myself to a haircut.  I love you for the compliment.  Thank you so much for making my day.

    Good for you Beth. I agree

    Good for you Beth. I agree with Ruth. You look beautiful! Love your haircut! :)

  • coloCan
    coloCan Member Posts: 1,944 Member
    #24
    Something called eFT508 is currently starting a clinical

    trial for MSS CRC, alone or with Avelumab

    https://clinicaltrials.gov/ct2/show/NCT03258398

    On 11/10/17markets.businessinsider.com had an item on eFT508 by eFFector Therapeutics

     

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #25
    Welcome

    Jenni, sorry to hear the news about your brother but know that there are several of us Stage 4 fighters on here. I was originally diagnosed with Stage 3 in 2006; it came back as Stage 4 with liver mets in 2013; and it came back again this year in a vertebrae and lymph node. I finished my folfox regiment and am now taking targeted chemo (cyramza) for at least the next year as a precaution. I was 39 when originally diagnosed and am currently NED. I know from watching my wife how truly tough this battle is on the care givers but staying positive and strong for him is really good medicine. Joshua 1:9 "Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go."

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    #26
    Hello Jennilynn72080,
    For MSS type, looking for an actionable mutation could be an option. My partner's tumor had MSS with BRAF V600E mutation, and her stage 4, chemo-resistant, and highly aggressive cancer with unknown origin has been responding to BRAF+MEK inhibitor combination for almost a year now.
    You may be interested to look into this clinical trial as well. It is testing bifunctional antibody RO6958688 with Atezolizumab: https://clinicaltrials.gov/ct2/show/study/NCT02650713?term=NCT02650713&rank=1&show_locs=Y#locn.
  • Jennilynn72080
    Jennilynn72080 Member Posts: 10
    #27
    MyJourneywithCancer said:

    Hello Jennilynn72080,
    For MSS type, looking for an actionable mutation could be an option. My partner's tumor had MSS with BRAF V600E mutation, and her stage 4, chemo-resistant, and highly aggressive cancer with unknown origin has been responding to BRAF+MEK inhibitor combination for almost a year now.
    You may be interested to look into this clinical trial as well. It is testing bifunctional antibody RO6958688 with Atezolizumab: https://clinicaltrials.gov/ct2/show/study/NCT02650713?term=NCT02650713&rank=1&show_locs=Y#locn.

    Thank you. Will look into

    Thank you. Will look into this! 

  • Bellen
    Bellen Member Posts: 281 Member
    edited November 2017 #28
    CRC with multiple, dispersed liver mets

    Hello Jennilynn - I was diagnosed last summer with CRC with multiple, dispersed liver mets.  Told inoperable - have not had any surgery.  My chemo is avastin + folfiri (a chemo cocktail that includes irinotecan plus 5Fu bottle that I have connected to my port for 2 additional days).  I have had 27 chemo treatments, and am now having an extended break (2 1/2 mos) to recoup, as I have had low hemoglobin and white blood cells.  I believe my Onco chose the folfiri over the folfox, as he thought I could "tolerate" it for an extended time.  Each CT scan has shown some shrinkage of the larger tumours, and some of the smaller ones are not seen in the CT Scan, so things are going okay in that sense. I don't know if I will ever hear that the tumours have gone - but the intention right now is to continue with this same folfiri after I have my break.  I have had up and down days - suffer episodes of constipation and diarrhea each time I have chemo, crapoy feeling stomach that affects my eating some days, WBC shots cause me spinal and sternum pain, and other side effects.  I started off having chemo every two wks (about 14 treatments) and have been having more 3 wk chemos to give me more time to recoup.  I wish your brother all the best - will be thinking of him.  Please let us know what chemo is recommended for him.  If you have any other questions for me, I'd be happy to respond or help.  

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #29
    Oh my Goodness

    This has to be a terrible point for you and your brother.  Being diagnosed with CRC is hard enough but facing other issues that go along with it it such a hard to be at.  That is so young to be going through this as well.  He has a great sister in you in trying to get in some information.  I'm sorry I'm not able to help you with his diagnosis and treatment but he will be remembered in my prayers.  Wishing him the best and come on this board whenever you need encouragement.  We are great group and can help with much of what he and you is going through. Thanks for being such a great sister.

    Kim

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