Maintenance therapy for stage IV - Erbitux

katienavs
katienavs Member Posts: 88 Member
edited March 2014 in Colorectal Cancer #1
Has anyone done maintenance therapy after becoming NED? I will be done with me twelve rounds of oxaliplatin, xeloda, and erbitux on December 15th. My most recent PET scan was totally clear and my CEA is down t0 1.0. My oncologist has suggested continuing me on just the Erbitux for a while.
Here's a brief history of my cancer. I was originally diagnosed with stage IV in June 2006, mets to the liver. I was 24 years old at the time. I had surgery, radiation, and 12 rounds of folfox. I was NED until February 2009 when I had a recurrence in some lymph nodes and did 12 rounds of folfiri. I was NED again but only for three months when it came back in January 2010 in my spine and lymph nodes near my spine. This year I have had surgery, six weeks of radiation and the oxaliplatin, xeloda, erbitux cocktail.
My oncologist thinks that continuing me on the erbitux even though I have no sign of cancer left will hopefully give me a longer period of being cancer free before another recurrence.
He says there is very little data on maintenace therapy and no real protocol for it.
I would appreciate hearing from anyone who has any information or experience with this.
Thank you so much!
Katie

Comments

  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #2
    Katie
    I don't have personal experience with maintenance therapy, as I have not been NED. I just wanted to say thanks for coming on here + congratulations on being NED. You have been through a lot for anyone, never mind a 24 year old. I find your story inspirational + want to wish you many many years of NED!
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #3
    Katie
    I have not done maintenance therapy either since I have not reached NED status but I have been on Erbitux for the better part of 4 years. It has done very well with shrinking tumors and/or keeping them stable. During this time I've had 3 RFA procedures to get rid of small nodes in my lungs. All I can add is that Erbitux has done OK by me. There are side effects that can be annoying. I do not have much trouble with the rash that many get. I had it pretty bad at first but as time has gone by it's lessened. I do have more issues with cracked fingertips and some toe issues but as far as being very sick from side effects, I do not have that. There have been times when I've taken Erbitux along with CPT11 (Irinotecan) and that causes some nasty stomach cramps but I switch from being on just Erbitux to being on both meds.

    I hope this is of some help to you
    -phil
  • katienavs
    katienavs Member Posts: 88 Member
    #4
    PhillieG said:

    Katie
    I have not done maintenance therapy either since I have not reached NED status but I have been on Erbitux for the better part of 4 years. It has done very well with shrinking tumors and/or keeping them stable. During this time I've had 3 RFA procedures to get rid of small nodes in my lungs. All I can add is that Erbitux has done OK by me. There are side effects that can be annoying. I do not have much trouble with the rash that many get. I had it pretty bad at first but as time has gone by it's lessened. I do have more issues with cracked fingertips and some toe issues but as far as being very sick from side effects, I do not have that. There have been times when I've taken Erbitux along with CPT11 (Irinotecan) and that causes some nasty stomach cramps but I switch from being on just Erbitux to being on both meds.

    I hope this is of some help to you
    -phil

    Hi Phil,
    Thank you for
    Hi Phil,
    Thank you for responding. I also have toe issues. The big toes on both of my feet are really inflamed, red, have been infected on and off and they hurt. I have been doing epsom salt soaks which helps some. My oncologist said there wasn't much that could really be done except anitbiotics when they do get infected and have pus. So gross, I know. But he said the general toe issues won't resolve until I stop taking Erbitux. Have you found anything to help the toe issues? Or the cracked fingers which I also have?
    What schedule have you taken the erbitux on over the past four years?
    Thank you for any information you can share.
    Katie
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #5
    Hi Katie
    Hi Katie,

    Wow, you have been through a lot. You must be a tough lady and have a good team working with you. I'm so glad to hear that you are NED.

    My husband is at a place where we are looking at maintenance possibilities as well. A bit of background, **** was diagnosed stage 3c in January 2009. He had surgery and then 12 rounds of Folfox 6. Scans showed lymph node enlarged so he has 12 rounds of Folfori + Avastin. Lymph node shrinking but still enlarged so surgically removed in May 2010. 17/ of 19 nodes showed small amounts of cancer. 8 more rounds of Folfori + Avastin. Clear scan in October 2010. His local oncologist plans to scan him in January.
    However, he has also been seen by Dr. Lenz. I spoke with Dr. Lenz's office today and they said he never stops chemo cold turkey. He usually recommends Xeloda. They were not prescribing that for **** since they have not seen him recently, they were just saying what normally happens. **** will fly out to LA in the next week or so to see Dr. Lenz and I'll report what he says.
    Best to you.

    Aloha,
    Kathleen
  • katienavs
    katienavs Member Posts: 88 Member
    #6
    Kathleen808 said:

    Hi Katie
    Hi Katie,

    Wow, you have been through a lot. You must be a tough lady and have a good team working with you. I'm so glad to hear that you are NED.

    My husband is at a place where we are looking at maintenance possibilities as well. A bit of background, **** was diagnosed stage 3c in January 2009. He had surgery and then 12 rounds of Folfox 6. Scans showed lymph node enlarged so he has 12 rounds of Folfori + Avastin. Lymph node shrinking but still enlarged so surgically removed in May 2010. 17/ of 19 nodes showed small amounts of cancer. 8 more rounds of Folfori + Avastin. Clear scan in October 2010. His local oncologist plans to scan him in January.
    However, he has also been seen by Dr. Lenz. I spoke with Dr. Lenz's office today and they said he never stops chemo cold turkey. He usually recommends Xeloda. They were not prescribing that for **** since they have not seen him recently, they were just saying what normally happens. **** will fly out to LA in the next week or so to see Dr. Lenz and I'll report what he says.
    Best to you.

    Aloha,
    Kathleen

    Thank you, Kathleen
    Hi Kathleen,
    Kathleen is my name too but I've always gone by Katie.
    Thanks so much for responding! Please do keep in touch and let me know what Dr. Lenz recommends for ****. I reached out to my old oncologist today to get her opinion and she said she usually uses xeloda when it comes to maintenance. But she also said there are no easy answers when it comes to this. I understand but it's so frustrating to hear that and to have so much uncertainty about the decision.
    Hope to hear from you in the next couple of weeks. Good luck to you and ****!
    Katie
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #7
    katienavs said:

    Hi Phil,
    Thank you for
    Hi Phil,
    Thank you for responding. I also have toe issues. The big toes on both of my feet are really inflamed, red, have been infected on and off and they hurt. I have been doing epsom salt soaks which helps some. My oncologist said there wasn't much that could really be done except anitbiotics when they do get infected and have pus. So gross, I know. But he said the general toe issues won't resolve until I stop taking Erbitux. Have you found anything to help the toe issues? Or the cracked fingers which I also have?
    What schedule have you taken the erbitux on over the past four years?
    Thank you for any information you can share.
    Katie

    Hi Katie
    For the toes, there is a procedure I've had done a few times where a Dr cuts part of the nail around the infected area then uses silver nitrate(?) to cauterize it and seal it up so to speak. It hurts like hell when they put the needle in to numb the toe but it has given relief for a while. I have minor issue now that is getting worse but I'm not a big fan of getting pricked in the toe either.
    For the hands, I've found that Bag Balm (green square can) helps to some extent. it's made for cow udders to help keep them from getting chapped in the winter (and we all know how painful chapped udders can be!) and also Aquaphore)sp?) helps somewhat too. I just got the store brand of it and it was a bit less expensive. It's petroleum based but gets absorbed after a little while so you don't get all greasy. For bad splits I've used everything from Crazy Glue to Liquid Bandage. They sort of help but I've found that the skin issues are mainly from the inside out so most topical ointments only help so much. I've found that the cuts usually have to run their course then they pop up in another area.

    For the Erbitux, I get a double dose every other week. That's mostly what I've done. There was a time when I went weekly but they found they have the same results if it's done every other week at a higher dose so that's more convenient for me. I also take minocyclin daily.
    Hope this helps. Email me if you want more specifics - not that I really left anything out other than photos ;-)
    -phil
  • taipei
    taipei Member Posts: 33 Member
    #8
    Maintenance therapy
    Hi Katie: Congratulation for doing so well. I did 4 mo of chemo (xeloda, avastin) after NED. onc wants me to do 6 mo that was DEC 2007, from there I just do my own, supplement: multipe vitamin, grape seed, turmeric, mushroom complex, calcium, vitamin d3, low does aspirin, I buy from vitamin shoppe.
    Best wish to you.


    Winnie in Houston

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