Help needed: Should we change chemo scheme now (from Folfox to Folfiri)?

Makord
Makord Member Posts: 37
in Colorectal Cancer #1

I have the following situation: my moms primary oncologist recommends we stay the course, i.e. to continue with Folfox 4 but to add also on top Avastin after the CT scan results of January 4th. She believes the deterioration in the liver is not that big and that we shouldn’t get rid of a med so quickly (potentially because we don’t have so many options afterward??). She also believes Avastin will make a difference while she recommends CEA check after two rounds. Only if then the tumors in the liver continue to increase will she change to Folfiri. 

On the other hand the other two oncologists I consulted (2nd & 3rd opinion) clearly recommended to change immediately to Folfiri+Avastin. They believe it’s clear Folfox doesn’t work and we shouldn’t lose time.

Anybody has been in similar situation? Any advise on how to choose? For perspective after 4 rounds of Folfox 4, the liver mets grew from 5mm to 17mm, from 14mm to 22mm, from 13mm to 21mm + a new one of 5mm appeared, whilst the lung mets remained stable with one decreasing. Also importantly the CT scan we base the comparison with was made on September 20th, while we started Folfox 4 in November 1st, so someone could argue that during these 40 days the mets grew anyway And we cannot know the right base to compare with 

Mamy thanks for the help!

 

Comments

  • Phil64
    Phil64 Member Posts: 838 Member
    #2
    after four rounds I would

    after four rounds I would have hoped to see some improvements or at least a stalemat. Seeing increases after four rounds seems to beg for trying something different. I would heed the advice of second opinions. But this is offered without having eat the doctors. I tend to rely on gut feel about my doctors. I want to trust them and listen to their direction. Good luck. Sending Love and Light your way. 

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited January 2018 #3
    That's a tough one. Not a

    That's a tough one. Not a situation I've dealt with. I was on an oral chemo last summer and developed a fourth met in my lung and then switched to a different chemo that did reduce them in size. Well, three of them, anyway. The biggest one didn't shrink but did stay the same size. I'm not a fan of Folfox. It's a tough one to be on.

    Jan

  • NewHere
    NewHere Member Posts: 1,429 Member
    #4
    I Would Stay The Course

    If is difficult to tell for sure without knowing all the facts, but chemo "runs out" of effectiveness at some point.  Based on the scans perhaps there is something along the lines of what you suggested - there was a 40 day gap between things.  The chemo may kick in or there is a timing issue.  This is something I am facing now with my recurrence that is inoperable.  My second opinion said start the new chemo right away, while my oncologist said to hold off as long as possible - wait until I am symptomatic or scans show very aggressive growth and spread - due to the fact that the chemo will be eventually ineffective.  So I would give the current treatment a longer run before cutting it off if possible.  Especially if the lung mets are stable or decreasing, it looks like it may be helping.  

    If symptoms develop (which may indicate growth), perhaps it may be time to change.  I would also find out the risk of not switching right now in terms of long term issues.  Basically if chemo is going to work, it is going to work.  So if it turns out the liver mets conitnue to grow, switching will work (or not work) and reduce things at that time or hold things stable if it is going to work.  So if the FOLFOX does not work and the liver mets grow, how much do they have to grow before causing long term problems if the FOLFORI does turn out to work?  In my case the tumors are located in my lungs and elsewhere in positions where I have time before they will affect blood supplies/nerves etc.  A long way around of saying, you may be able to give it more time to see if it is effective on the liver mets ....

    Get into the details of why more with the opinions.

    If I listened to the second opinion I would have been on chemo since October (if I got the second opinion right away, they said they would have done it right away at the time based on the scans)   Instead I am not on chemo, and based on the growth rate (which sounded fast to me, but doctors said now) I am still not on chemo and may have more time before I have to. 

    I am so sorry your Mom is going through this - you are tremendous in your help you are providing to her and I wish the best for both of you.

  • Makord
    Makord Member Posts: 37
    #5
    Phil, Jan, Newhere, thank you

    Phil, Jan, Newhere, thank you so much for coming back! Newhere thanks for the comprehensive feedback and your advise, it gave me more strength to go ahead with what we were thinking those last couple of days. We will stay the course most probably for two more rounds at least. I talked also with 2 surgeons and were both in favour of staying the course and not killing this med too soon, because the mets should have grown anyway during these 40 days before we started chemo. Plus the last surgeon I saw focused a lot in the CEA numbers and the truth is that between November numbers and December there is a statistically important reduction in CEA which is encouraging that the med might work if we give it some more time and on top add Avastin. So we are thinking of staying the course for two more rounds and then run CT scan and CEA again and pending results decide next steps. Wish luck and strength to all! Thanks so much for all the support! 

  • Makord
    Makord Member Posts: 37
    edited January 2018 #6
    just wanted to let you know

    just wanted to let you know we had our 5th round of Folfox and added on top Avastin last week. it was the first time my mother felt well after treatment without any big side effects, opposite to 3rd or4th round....weird but I’m so happy to see her well during last week! Now I’m truly looking forward for some good CT scan results in mid Feb after we do also the 6th round of Folfox (2nd with Avastin). 

    My warmest wishes to all for strength and good results!

     

  • Woodytele
    Woodytele Member Posts: 163
    edited February 2018 #7
    Avastin

    it can definitely work for some, it can cause some side affects too, gooD luck,

  • Phil64
    Phil64 Member Posts: 838 Member
    #8
    Makord said:

    just wanted to let you know

    just wanted to let you know we had our 5th round of Folfox and added on top Avastin last week. it was the first time my mother felt well after treatment without any big side effects, opposite to 3rd or4th round....weird but I’m so happy to see her well during last week! Now I’m truly looking forward for some good CT scan results in mid Feb after we do also the 6th round of Folfox (2nd with Avastin). 

    My warmest wishes to all for strength and good results!

     

    Great to read your update.

    Great to read your update. CEA can be a really good marker. And intuition and gut feel with your doctors is also a good indicator. For me I really felt like my doctor knew his stuff so I grew to trust him completel. Sending Love and Light your way. ((Hugs))

  • Makord
    Makord Member Posts: 37
    #9
    Phil64 said:

    Great to read your update.

    Great to read your update. CEA can be a really good marker. And intuition and gut feel with your doctors is also a good indicator. For me I really felt like my doctor knew his stuff so I grew to trust him completel. Sending Love and Light your way. ((Hugs))

    Thank you so much! Cross our

    Thank you so much! Cross our fingers the combination will work, we will know in a couple of weeks. Take good care of you! 

  • Makord
    Makord Member Posts: 37
    #10
    Woodytele said:

    Avastin

    it can definitely work for some, it can cause some side affects too, gooD luck,

    Thank you! All the best to

    Thank you! All the best to you too!

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