Taken off Erbitux

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steveandnat
steveandnat Member Posts: 886
in Colorectal Cancer #1
Went to get my treatment today but platelet count was below 100,000 so the onconlogist won't give a full treatment. Last week he gave me only 400ml of Erbitux. The week before that I got my full treatment except he stopped Avistin and gave me 700ml of Erbitux thinking it would help keep my platelets up. Today when I just finished getting some premeds and before the Erbitux the ongololgist stopped the treatment because he found out I was K-ras mutated. I'm a little confused? Has this happened to anyone else? I'm new here. I was dx with colorectal cancer jun 09 and have been getting treatment ever since. I usually get treatment every two weeks but over the past 5 months my platelets haven't been doing too good. He tried giving me a shot but I had really bad reaction so he stopped those also. My last ct scan was Jul and schedled again in Oct. the last one was still good.
Thanks all and bless you all.
Jeff

Comments

  • laurettas
    laurettas Member Posts: 372
    #2
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    Hi Jeff
    My husband just started Erbitux a week ago and had to have his tumor tested for KRAS mutation because Erbitux doesn't work on that type of cancer. That is all I know about it. Kinda surprised your doctor didn't test for KRAS before he started you on it. Think that is pretty standard now.
  • steveandnat
    steveandnat Member Posts: 886
    #3
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    laurettas said:

    Hi Jeff
    My husband just started Erbitux a week ago and had to have his tumor tested for KRAS mutation because Erbitux doesn't work on that type of cancer. That is all I know about it. Kinda surprised your doctor didn't test for KRAS before he started you on it. Think that is pretty standard now.

    Thanks for the comment. I
    Thanks for the comment. I was surprised too...not to happy about all the side effects I went through. I think he just assumed it would be okay. either that or the insurance company rejected it. ha?
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #4
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    Hi Jeff
    I'm very surprised (too) that your oncologist didn't check you first before experimenting with treatments. Personally, I'd seriously look into getting a new oncologist who knows what they are doing. Maybe your counts wouldn't be so low?
    -phil
  • Kathy62
    Kathy62 Member Posts: 5
    #5
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    For me since I have been on
    For me since I have been on Erbitux I have been more tired then almost all my other so called toughter treatments. My lower back is hurting with a burning sensation and my upper right side under my ribs really hurts. I am so tired I can hardly sit up to work. I am at work now crying because I don't think I can make it through the day. I see the Dr tomorrow for another treatment. Just don't know.
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #6
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    PhillieG said:

    Hi Jeff
    I'm very surprised (too) that your oncologist didn't check you first before experimenting with treatments. Personally, I'd seriously look into getting a new oncologist who knows what they are doing. Maybe your counts wouldn't be so low?
    -phil

    Not always a fan
    of the run to another Onclologist advice (usually because of a reported conversation with the doc, where we really do not know what the intent was as only one of us was there), but in this case I agree with Phil. The first thing my docs did was send the tumor out for genetic testing, this helps sets the course of treatment (as my secondary Oncologist called it, the bullets in the gun) for the future. If yours failed to do this, and if he started a course of treatment that is dependent on this, then it is probably time to look for another doctor (as John23 would advise, from a separate medical group).

    Blake
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #7
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    Have you been on Erbitux since June 2009?
    Have you been on Erbitux since June 2009?

    There are some trials to use a secondary drug to try and enhance effectiveness of Erbitux in KRAS mutant tumors. But that is all pretty new - not known or tried in 2009.

    It was well-known at the time of your dx that Erbitux was not suggested for anyone KRAS mutant, and oncologists have been testing first before using it. (I was possibly going to do a clinical trial that included it, but after being tested and being mutant, I was disqualified.) If your oncologist did not test you and has had you on that drug all this time, I'd first ask him why. Then if he didn't have a VERY VERY good explanation, I'd be reporting him, and RUN, not walk, to a new oncologist!

    As far as bad labs and needing to get counts back up, the shots aren't fun, but can make a huge difference. You might want to ask if you had Nuelasta or Neupogen - and try the opposite one. (If I am on any 5-FU combo (FOLFOX, FOLFIRI) I have to get shots or I would have four weeks in between all treatments...
  • steveandnat
    steveandnat Member Posts: 886
    #8
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    Kathryn_in_MN said:

    Have you been on Erbitux since June 2009?
    Have you been on Erbitux since June 2009?

    There are some trials to use a secondary drug to try and enhance effectiveness of Erbitux in KRAS mutant tumors. But that is all pretty new - not known or tried in 2009.

    It was well-known at the time of your dx that Erbitux was not suggested for anyone KRAS mutant, and oncologists have been testing first before using it. (I was possibly going to do a clinical trial that included it, but after being tested and being mutant, I was disqualified.) If your oncologist did not test you and has had you on that drug all this time, I'd first ask him why. Then if he didn't have a VERY VERY good explanation, I'd be reporting him, and RUN, not walk, to a new oncologist!

    As far as bad labs and needing to get counts back up, the shots aren't fun, but can make a huge difference. You might want to ask if you had Nuelasta or Neupogen - and try the opposite one. (If I am on any 5-FU combo (FOLFOX, FOLFIRI) I have to get shots or I would have four weeks in between all treatments...

    I got my first Erbitux first
    I got my first Erbitux first week in Aug last month. I had a really harsh reaction...broke out all over. Everyone said that was a good thing because it meant it was doing what it was suppose to be doing. Second treatment of Erbitux a couple weeks after the first one. Then this week the onc wanted me to get another but stopped at the last second and told me I was Kras mutated. I'm still fighting the side effects from the two treatments. Now my finger nails are all sore. My hair has almost all fallen out. Tired too. Not a real happy camper! I use to get the shots Nulasta but I had a really bad reaction to it so the onc stopped it also. So now I have to wait on my body to build up my platelets on their own. I'm a little nervous if it takes too long.
  • marqimark
    marqimark Member Posts: 242 Member
    #9
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    steveandnat said:

    I got my first Erbitux first
    I got my first Erbitux first week in Aug last month. I had a really harsh reaction...broke out all over. Everyone said that was a good thing because it meant it was doing what it was suppose to be doing. Second treatment of Erbitux a couple weeks after the first one. Then this week the onc wanted me to get another but stopped at the last second and told me I was Kras mutated. I'm still fighting the side effects from the two treatments. Now my finger nails are all sore. My hair has almost all fallen out. Tired too. Not a real happy camper! I use to get the shots Nulasta but I had a really bad reaction to it so the onc stopped it also. So now I have to wait on my body to build up my platelets on their own. I'm a little nervous if it takes too long.

    K-ras mutated is new to me
    I was not treated with Erbitux. I had OXY, 5FU, leukavoren (SP)

    I did have trouble with the white blood cells and had Neulasta two days after infusion for the last eight rounds. I had been bumped several times for low counts.

    Then I started getting bumped for the platlets and the ONC said there wasn't a way to help the platlets.

    In my opinion Chemo sucks!!

    I hope whatever the ONC changes your treatment to it gets you NED (no evidence of disease)
    and is gentler on your system.

    Mark
  • CherylHutch
    CherylHutch Member Posts: 1,375
    #10
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    steveandnat said:

    I got my first Erbitux first
    I got my first Erbitux first week in Aug last month. I had a really harsh reaction...broke out all over. Everyone said that was a good thing because it meant it was doing what it was suppose to be doing. Second treatment of Erbitux a couple weeks after the first one. Then this week the onc wanted me to get another but stopped at the last second and told me I was Kras mutated. I'm still fighting the side effects from the two treatments. Now my finger nails are all sore. My hair has almost all fallen out. Tired too. Not a real happy camper! I use to get the shots Nulasta but I had a really bad reaction to it so the onc stopped it also. So now I have to wait on my body to build up my platelets on their own. I'm a little nervous if it takes too long.

    KRAS testing
    I'm on the band wagon with the others... it doesn't make sense that your onc would have started you on the Erbitux without having the tumour tested and results from that test prior to starting you on the Ertibux. Also, you said you had a really harsh reaction... the breakout of the rash all over. Did your onc not go over with you the known side affects, in particular the nasty rash that most people will get when they use this treatment (or it's sister treatment, Vectibix)? Both treatments you have to be tested for the KRAS gene because if you have it then neither Erbitux or Vectibix will do a thing for your type of cancer cells/tumours.

    It makes absolutely no sense why he/she would start you on a very powerful medication, not knowing beforehand whether or not you are even eligible for it. As for your insurance company... no, they will not pay for it if it won't work for you. I have no idea how the insurance industry in the States works but it wouldn't surprise me if they decide they won't pay for the two treatments you've had, when they find out you are KRAS mutant now, after the fact. I would be really leary about that because these treatments are not cheap :/

    Anywho... give the onc the benefit of the doubt and ask him WHY he put you on Erbitux, not knowing if you were a candidate for it and making you go through the suffering of these side affects, only to find out it was a total waste of time and money. If he has a reason for doing this, unbeknown to the rest of us, then this would definitely be something we'd all be interested in. If he says that he wanted to get you started on it, on the off chance you were a candidate for it, then found out you weren't... that's not good enough, and time to find an onc that actually knows what he/she is doing and understands these meds and how they work.

    Good luck!

    Cheryl
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #11
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    New Onc time
    I'd think. My onc, even though I did fine on my chemo's, since I've actually been considered NED, decided to do a KRAS test, for just in case down the road.
    I think that there is something wrong in your onc's office, wonder if he thought he had tested you.
    Take care.
    Winter Marie

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