Support and Advice please! Scans this week too!

I need some support and knowledge please!  I posted previously about my dh's CEA coming down during chemo with Folfox and Avastin.  He started chemo 11/29 and his CEA was 100 on that day and then dropped to 41 a month later and now is 37.   While I know that trending down is good, I expected a bigger drop this last one.  So a little worried about that.  And then, he has scans this week.  They are doing a PET/CT and also an MRI of the abdomen mainly for the liver.  These scans of course are to look at everything again and to make sure that he is still a candidate for a liver resection.  Of course we are hoping for this surgery.  I'm just worried about these scans.  My anxiety is through the roof.  There are still questionable lung nodules that we don't know if they are inflammatory or cancer.  So we were told that if there is any change in the lung nodules, shrinking or growth then they more than likely are mets.   And if they are mets in lungs, I don't know if they will do liver resection. Any advice and knowledge would be helpful!  

Comments

  • Pamcakes
    Pamcakes Member Posts: 112 Member
    I really don't have any

    I really don't have any advice, but as a caregiver I understand what you are going through. I try to do all of the worring for DH so he can focus on getting better. I have learned I can't control the results of the scans, CEA results, blood test... nothing. However, I am able to take measures to control myself and even some of the worring and anxiety. i really hope everything goes well. This is such a roller coaster.

  • Trubrit
    Trubrit Member Posts: 5,791 Member
    CEA

    My CEA was slow to drop after my liver ablation.  It finally went down into a normal range, but it was scary times for sure. 

    Tru

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    I don't have any experience

    I don't have any experience with the combination of liver and lung mets, I just wanted to say that I feel for you. I try not to worry too much about the CEA level. It's not a definite marker at all and can go up or down for seemingly no reason. Mine was normal the whole time I had the colon tumour but now is up because of the mets in my lung. I'm just over 50 right now. Last summer before I started the latest chemo I was over 100 and the chemo brought it down to 7.5.

    Take care of yourself and try not to drive yourself crazy with worry. Easy to say but I feel so badly for caregivers. 

    Jan

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Sorry

    Sorry to hear about your husband, but it sounds like they are really trying to get a handle on what is going on.  Can understand how your anxiety level is high without knowing the answers to everything and especially with the scan coming up.  I'm wishing him well and hoping that he can have his surgery.

    Kim

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    going beyond standard answers

    Hopefully the lung nodules are nothing.

    If the lung nodules are significant, to go beyond "standard answers", like denials, you have to do homework, work through medical problems and objections, and be a successful advocate. This means finding a credible pathway to success and avoiding perfunctory negatives when there are suitable positives to latch onto, to overcome standard objections.   Partly it is matter of getting documented results and practiced enough to present a potentially successful case to the right surgeon or team, who really are better.  This is one area where we could sometimes use all our extra bloodwork to seduce or bludgeon with.

    In the lung met case, multistage or multimodal treatment would need to become more than buzzwords.  Filling in the details of each step becomes critical to both the current patient realities for success, and the sales effort.  e.g.   experimental/alternative tx1, cut, chemo and experimental/alternative tx2, cut,  chemo and experimental/alternative tx3, etc.  You have to find doctors or support(ers) that can and will help you through particular obstacles.  Multistaged surgeries typically puts you in a higher class company - heads of departments and/or more specialized hospitals, perhaps even overseas. 

    In my wife's case, we had eliminated/stopped/stabilized metastases that were considered grimly unstoppable (peritoneal mets and para-aortic LN) and pushed for a nonstandard surgery, that was normally considered futile.  Once you can mostly stop the mets, the surgery isn't necessarily futile anymore.  Once we had the better surgeon's interest, "I gotta see this for myself", we had a lot of buy-in even if he was still concerned about show stoppers (peritoneal mets in this case). With unbiopsied lesions stable, small or disappearing, they ignored these things in the lungs and liver. In some ways we "cheated" - used nonstandard treatments to advantage, managed to use more chemo closer to surgery (usually off 2-6 weeks before and after surgery), loaded the dice by shopping better opinions, and more artfully presented case details with relation to medical papers on new successes despite typical prior failures in a category.

    NB. In a war with mCRC, there is no cheating.  Just survival.

  • caregiver3
    caregiver3 Member Posts: 49
    Update! Got PET scan results!

    Thank you so much for the replies.  Sorry it took me so long to respond.   It's been a rough few days!  

     

    Anyways, we got the results from the pet scan and I guess the news is good and bad.  

     

    The good news is the report says that he is having response to therapy.  The lesion in his liver has gotten a little smaller, but not much.  Also, the lung nodules that we have been questioning went from 6mm and 7mm to 3mm and 5mm.  And we were told from the previous scans that they weren't sure if these were mets or not.  But the fact that they "changed" and got smaller tells me that they were mets all along right?  Also he had moderate uptake in his esophagus?  Not sure what this is.  But he has had major sores from chemo in his mouth.  So could this be from the chemo?  We obviously haven't had the follow up with the doctors yet on this scan,  but they put them online for us to read sometimes ahead of time.  

     

    Any thoughts?  We are still waiting on the MRI. 

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    That sounds positive! Yay! I

    That sounds positive! Yay! I think the esophagus means there's some inflammation there or something like that. When I got my PET scan results they said I had something in my throat but I felt nothing, a few days later I had a sore throat.

    Jan

  • Worriedchild
    Worriedchild Member Posts: 56
    edited February 2018 #9
    JanJan63 said:

    That sounds positive! Yay! I

    That sounds positive! Yay! I think the esophagus means there's some inflammation there or something like that. When I got my PET scan results they said I had something in my throat but I felt nothing, a few days later I had a sore throat.

    Jan

    Jan You are such a positive person

    I have been reading all you responses iam so happy to meet you at this forum even it is virtually Jan

  • NewHere
    NewHere Member Posts: 1,422 Member
    tanstaafl This Is What I Have Going On Now

     para-aortic LN

     

    I am using vtiamins (D & C), mineral supplements and herbs.  I stated when I got the news and the first scan after I started with these things indicated "slow growth" and "not that aggresive yet."  But that scan was two months out and I am not sure how long is needed to take hold. Maybe the slow growth was due to that.  Will get a sense in about another 2 months on next scan.  

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited February 2018 #11

    Jan You are such a positive person

    I have been reading all you responses iam so happy to meet you at this forum even it is virtually Jan

    You're so sweet! I'm happy to

    You're so sweet! I'm happy to 'meet' you, too. Everyone on here is great and while I'm happy to meet new members I'm also sad at the situation that brought them here. 

    Thank you for bringing a smile to my face!

    Jan

  • Worriedchild
    Worriedchild Member Posts: 56
    edited February 2018 #12
    JanJan63 said:

    You're so sweet! I'm happy to

    You're so sweet! I'm happy to 'meet' you, too. Everyone on here is great and while I'm happy to meet new members I'm also sad at the situation that brought them here. 

    Thank you for bringing a smile to my face!

    Jan

    love and prayers Jan :)

    love and prayers Jan :)