Need Advice on next step

deneenb
deneenb Member Posts: 130
edited March 2014 in Colorectal Cancer #1
Hi Everyone,

I went with my Dad yesterday for his bi-weekly oncologist appointment. When we found out a few weeks ago that the cancer was back the oncologist sent a sample of his tumor out for testing with Erbitux. As it turns out my Dad's tumor does not express the EGFR protein which is supposedly what the Erbitux is designed to work on. The oncologist said that Erbitux has been known to work for people who do not express the protein. However, the FDA will not authorize payment for Erbitux for anyone NOT expressing the protein, at our treatment center. They will authorize payment if my father receives treatment at Sloan Kettering (why one place and not another? - different allowances for different types of centers apparently).

Anyway, my father has had one treatment with Folfox6 with Avastin. He is receiving one today as I type this. The Dr. was going to wait 2 months to do scans but said yesterday that he wants to do an MRI of the back and a CT scan of the abdomen after this treatment. He wants to see if the liver is responding. If it doesn't look like there is any change to the liver after 2 treatments he wants to stop treatment and try something else. I have 2 concerns - 1) Do 2 treatments determine if the therapy is going to work ? and 2) I asked if we would try Folfiri next and he said no. He would go to just Camptosar(Ironitecan) and Erbitux (which is not covered). I asked why not Folfiri when that's what he and the Sloan Dr. said last year would be the next option and all of my research shows that when folfox stops you go to Folfiri or vice-versa. He feels that if the folfox doesn't work neither will the folfiri because they both use 5FU. How does he know that it's not the oxaliplatin that would be the ineffective drug and not the 5FU that both treatments have in common ?

Has anyone gone to a second line therapy after the first one stopped working and if so, which one? Please help - I feel like the Dr is ready to give up already and I am not and neither is my father. He did too well last year after being told it was too agressive and to far gone.

He has increased his nutritional approaches but we are having a really hard time bringing his body up to an alkaline state. He has eliminated almost everything that causes a body to be acidic but still, everday his PH is as acid as it gets. Any suggestions would be greatly appreciated.

Thanks So Much,
Deneen

Comments

  • markatger
    markatger Member Posts: 314
    #2
    Hi Deneen

    My thoughts are with you as you are and your Dad try to gather information and decide on best the best treatment. I have find that part to be almost as hard as the treatment itself.

    I am not very knowledgeable on the different regimens. But I have had FOLFOX + Avastin. I had four treatments of this and my liver met shrunk in half. I then had radiation with 5 FU alone. My rectal tumor, which was getting the radiation, shrunk. But the liver tumor, which was only getting 5 FU, grew. The doctors seem to think that 5 FU alone was not effective on my tumor. So it was either the combo on all the FOLFOX ingredients or it was either the Oxaliplatin or Avastin that had the best effect for me. I will be back on all three after surgery next month.

    Keep asking the Docs your questions until they are answered satisfactorily.

    Best Wishes,
    Maria
  • Btrcup
    Btrcup Member Posts: 286
    #3
    Hi Deneen, sorry to hear of your dad's dilemma. Scott started the Campostar with Avastin for his second line of chemo. They tried to go in laproscopically to test the tumor against the Campostar, but they could not find any space to put the scope. He has done 2 treatments and tolerated it well. He had to cancel his last chemo because he developed an abcess and did not feel up to it. His onc said if he did not respond to this cocktail, they would try the Erbitux. They want to do some scans next month to see if there's any change. Since his CEA level has always been low, they can't use it as an indicator.

    I hope all goes well for your Dad and they find something that works. You will be in our prayers.

    Linda
  • McDermid
    McDermid Member Posts: 1
    #4
    hey i am on Erbitux without that protein and it is working for me, definately worth the try.
  • BusterBrown
    BusterBrown Member Posts: 221 Member
    #5
    "Do 2 treatments determine if the therapy is going to work ?"
    After just 3 cyles of 5fu and Oxliplatin, my three 1cm liver lesions disappeared completely, and have not returned.
    Buster
  • themis01
    themis01 Member Posts: 167
    #6
    Deneen my mom is getting ready to start Folfiri after 6 folofx sessions.

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