New question RE: HER-2 & tumor testing

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Bobs1wife
Bobs1wife Member Posts: 150
edited March 2014 in Esophageal Cancer #1
I have another question regarding HER-2 and testing of the tumor. I also inquired at our post op check on Friday about testing of the tumor to see if it would help if we requested post op chemo. We were told that they didn't do that as there is no evidence of a benefit to know. We did have some staining tests, but I believe it was just to confirm that the esophagus tumor was the primary tumor and supported the diagnosis. I know there has been some discussion here, but we are just now trying to get "in-the-know". I would really like to know if you have had experience with testing and HER-2 positive/negative results. Linda

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  • Unknown
    Unknown
    #2
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  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    #3
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    Herceptin
    Linda,
    As William mentioned, my husband Charlie was on Herceptin. He was originally dx with stage IV ec in March 2009. Had 4 rounds of chemo....taxotere, cisplatin, and 5-FU. He was in remission after the 4 rounds. Dr put him on the oral form of 5-FU (Xeloda) and since his tumor had tested positive for HER-2, the dr suggested Herceptin. He said it had recently been discovered to help gastric cancers. So Charlie started it last Oct and had 12 rounds. The PET scan Charlie had in May showed some activity so the dr thought the Xeloda and Herceptin had stopped working. So we are back on chemo now (Taxol and Carboplatin) and once we are finished with this, the dr has not ruled out going back on the Herceptin. Charlie is convinced it was the Herceptin that kept him in remission from Oct to May...he is hoping to get back on it again.
    Good luck to you and your husband...I will keep you both in my prayers.
    Jane
  • LivingFaith
    LivingFaith Member Posts: 74
    #4
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    JaneE2366 said:

    Herceptin
    Linda,
    As William mentioned, my husband Charlie was on Herceptin. He was originally dx with stage IV ec in March 2009. Had 4 rounds of chemo....taxotere, cisplatin, and 5-FU. He was in remission after the 4 rounds. Dr put him on the oral form of 5-FU (Xeloda) and since his tumor had tested positive for HER-2, the dr suggested Herceptin. He said it had recently been discovered to help gastric cancers. So Charlie started it last Oct and had 12 rounds. The PET scan Charlie had in May showed some activity so the dr thought the Xeloda and Herceptin had stopped working. So we are back on chemo now (Taxol and Carboplatin) and once we are finished with this, the dr has not ruled out going back on the Herceptin. Charlie is convinced it was the Herceptin that kept him in remission from Oct to May...he is hoping to get back on it again.
    Good luck to you and your husband...I will keep you both in my prayers.
    Jane

    Herceptin
    I had my mom ask also about it last week at my dad's doctor's appt. He said he knew of it but my dad would have to get another biopsy to be tested. He also told them he was unable to get it and the people from the EC board must have been in a study. Both Bob and my dad are being treated in NE and I think they might have the same "group" of doctors as there is only a few groups in our area and they go to all the hospitals in Omaha.

    When my mom asked if he could have it even if they paid cash as it is not approved by insurance the dr said he would have to find it elsewhere. I think that sounds kind of fishy if you ask me. I also think my dad is so ill and the end is getting near that the doctor didn't want to say "oh, he'll be dead soon, so don't waste your money". Okay that was sarcastic of me but sometimes that's how I feel :-(
  • Myrtle9
    Myrtle9 Member Posts: 9
    #5
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    Linda
    Hi and best wishes to
    Linda

    Hi and best wishes to both of you on your decisions. First, I want to tell you that my husband had positive lymph nodes at surgery....2 of 16. His oncologist sent us to an oncology radiologist who told us that we should strongly consider postop chemo and radiation. His words were that if the cancer comes back, you will have the peace of knowing that you did everything. The cancer did return after about 18 mo. The oncologist tested the original biopsy specimen for Herceptin. My husband tested negative. Then he told us that sometimes the patient tests positive after chemotherapy. So he tested paracentesis fluid since he was starting to build up abdominal fluid. Unfortunately, he tested negative again. But the dr. had showed us some wonderful strong studies supporting Herceptin. Our prayers are with you and all here!

    Bonnie
  • unclaw2002
    unclaw2002 Member Posts: 599
    #6
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    LivingFaith said:

    Herceptin
    I had my mom ask also about it last week at my dad's doctor's appt. He said he knew of it but my dad would have to get another biopsy to be tested. He also told them he was unable to get it and the people from the EC board must have been in a study. Both Bob and my dad are being treated in NE and I think they might have the same "group" of doctors as there is only a few groups in our area and they go to all the hospitals in Omaha.

    When my mom asked if he could have it even if they paid cash as it is not approved by insurance the dr said he would have to find it elsewhere. I think that sounds kind of fishy if you ask me. I also think my dad is so ill and the end is getting near that the doctor didn't want to say "oh, he'll be dead soon, so don't waste your money". Okay that was sarcastic of me but sometimes that's how I feel :-(

    Some days it is so hard to
    Some days it is so hard to read the posts on this Board when good people are dismissed by doctors and told you must not know what you are talking about.

    This is why I and others on this Board tell people to get a second opinion, to go get a second opinion from a major cancer center, to go to a cancer center that specializes in esophageal cancer. If you are fighting a cancer so agreesive and deadly you need every possible advantage at your disposal. But so many decide to just stay with their local doctor, hospital and then don't have the opportunities for cutting edge treatment and the results are often deadly.

    Anyway, a major cancer center can do the HER2 tests internally, a regional hospital may have to send it out. There should be slides somewhere in pathology and perhaps if you speak with the lab they may know more than the doctor about whether or not something can be sent out for testing.

    As William said the HER2 test on tumors and the use of Herceptin has been effective in treating Breast Cancer, and has also proven effective on EC - I am not sure if it is considered off-label use but it is certainly a part of the arsenal used to treat EC these days. This is not part of a clinical trial. Thia is a recognized treatment for the 20% of the population that tests positive for the HER2 receptor. Herception is a targeted drug. Indeed there are similarities between both Breast and Colon cancers and EC and many of the approved treatments for those two cancers are being successfully used in the treatment of EC as well.

    I would insist on getting the test - your dad may not be a candidate --- mine wasn't --- but if he is the Herceptin may be just what he needs to get a new lease on life. This is a proven treatment you aren't asking for something experimental and it has proven to help many EC patients. Don't take no for an answer and keep on asking. If your dad is on Medicare they do pay for this and so should any other legitimate insurance company.

    Good luck,

    Cindy
  • kstorger
    kstorger Member Posts: 5
    #7
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    Herceptin and HER2
    You can read my odyssey in the topic Cancer Controlled --Near Remission. I just was declared cancer free last week since being diagnosed Stage IV, Terminal in March 2010. My UC San Francisco Dr. immediately after biopsy of my esophagus that I qualified at the top of the scale for HER2 protiens and would use Herceptin in my 6 chemo treatments. My tumor shrunk away to where it was just scarring lesions. When 10 biospsies wee run no cancer was evident. It was the onocologists belief that the Herceptin was highly effective in controlling this tumor. I am near remission and in a clinical cure category meaning this ugly disease can come back and can be controlled but not totally cured. Of course anything is possible. I am on continuing treatments of Herceptin every 3 weeks right now for an indefinite period, which is OK with me. No side effects other than limited exposure to the sun, but OK with suncreen. They need to test you for the HER2 protein. Demand it or find a new treatment center and doctor. Keith.
  • mrsbotch
    mrsbotch Member Posts: 349
    #8
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    kstorger said:

    Herceptin and HER2
    You can read my odyssey in the topic Cancer Controlled --Near Remission. I just was declared cancer free last week since being diagnosed Stage IV, Terminal in March 2010. My UC San Francisco Dr. immediately after biopsy of my esophagus that I qualified at the top of the scale for HER2 protiens and would use Herceptin in my 6 chemo treatments. My tumor shrunk away to where it was just scarring lesions. When 10 biospsies wee run no cancer was evident. It was the onocologists belief that the Herceptin was highly effective in controlling this tumor. I am near remission and in a clinical cure category meaning this ugly disease can come back and can be controlled but not totally cured. Of course anything is possible. I am on continuing treatments of Herceptin every 3 weeks right now for an indefinite period, which is OK with me. No side effects other than limited exposure to the sun, but OK with suncreen. They need to test you for the HER2 protein. Demand it or find a new treatment center and doctor. Keith.

    Hi
    My husband has recurrent esophageal cancer now in the plural fluid and tissue. I just read the site about Herceptin being approved by the FDA. Where do you get tested for the HER2? Is it from the oncologist?
    I am very happy for you that you ahave come to a good remission. That is wonderful.
    Continued success for everyone in this fight. It sure can get ugly.
  • unclaw2002
    unclaw2002 Member Posts: 599
    #9
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    mrsbotch said:

    Hi
    My husband has recurrent esophageal cancer now in the plural fluid and tissue. I just read the site about Herceptin being approved by the FDA. Where do you get tested for the HER2? Is it from the oncologist?
    I am very happy for you that you ahave come to a good remission. That is wonderful.
    Continued success for everyone in this fight. It sure can get ugly.

    I posted this answer on the
    I posted this answer on the FDA approval of Herceptin post - but wanted to include it here for anyone that misses that post.

    The oncologist orders the pathology lab in the hospital to do the test, if the hospital has the facilities it can do it, or the hospital will send it out to a third party lab. You need a tumor sample - they need to use an unstained slide --- when the hospital did the biopsy they should have created multiple slides so hopefully they have some that can be used for the test and they won't need to do another biopsy.

    You might also want to have them do another gene test called the KRAS test at the same time - if this receptor is present you are not eligible for a new drug named Erbitux which is an experimental drug regime with FDA approval for use in Colon cancer and currently having excellent results in clinical trials for esophageal cancer (it is in Stage III trials). The KRAS receptor doesn't allow the erbitux to work. So with one of the targeted therapies you need the gene, with the other you can't have it. The targeted tumor gene therapy field is really amazing and where alot of research is being done these days.

    Good luck -- if he is lucky enough to have the HER2 gene it appears that the herceptin really can help.

    Cindy
  • Bobs1wife
    Bobs1wife Member Posts: 150
    #10
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    unclaw2002 said:

    I posted this answer on the
    I posted this answer on the FDA approval of Herceptin post - but wanted to include it here for anyone that misses that post.

    The oncologist orders the pathology lab in the hospital to do the test, if the hospital has the facilities it can do it, or the hospital will send it out to a third party lab. You need a tumor sample - they need to use an unstained slide --- when the hospital did the biopsy they should have created multiple slides so hopefully they have some that can be used for the test and they won't need to do another biopsy.

    You might also want to have them do another gene test called the KRAS test at the same time - if this receptor is present you are not eligible for a new drug named Erbitux which is an experimental drug regime with FDA approval for use in Colon cancer and currently having excellent results in clinical trials for esophageal cancer (it is in Stage III trials). The KRAS receptor doesn't allow the erbitux to work. So with one of the targeted therapies you need the gene, with the other you can't have it. The targeted tumor gene therapy field is really amazing and where alot of research is being done these days.

    Good luck -- if he is lucky enough to have the HER2 gene it appears that the herceptin really can help.

    Cindy

    Great information from you!
    Thank you for all of the information and personal experiences regarding HER2 testing. I will be pressing even more regarding this test. We have an oncologist appointment on Tuesday and I feel I am much better informed to go to that appointment. My husband will also schedule his first CT scan since surgery on Aug 16. Linda
  • Hope_Faith
    Hope_Faith Member Posts: 150
    #11
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    unclaw2002 said:

    I posted this answer on the
    I posted this answer on the FDA approval of Herceptin post - but wanted to include it here for anyone that misses that post.

    The oncologist orders the pathology lab in the hospital to do the test, if the hospital has the facilities it can do it, or the hospital will send it out to a third party lab. You need a tumor sample - they need to use an unstained slide --- when the hospital did the biopsy they should have created multiple slides so hopefully they have some that can be used for the test and they won't need to do another biopsy.

    You might also want to have them do another gene test called the KRAS test at the same time - if this receptor is present you are not eligible for a new drug named Erbitux which is an experimental drug regime with FDA approval for use in Colon cancer and currently having excellent results in clinical trials for esophageal cancer (it is in Stage III trials). The KRAS receptor doesn't allow the erbitux to work. So with one of the targeted therapies you need the gene, with the other you can't have it. The targeted tumor gene therapy field is really amazing and where alot of research is being done these days.

    Good luck -- if he is lucky enough to have the HER2 gene it appears that the herceptin really can help.

    Cindy

    Thanks Cindy~
    Thanks for this information. I will be talking to my hubby's dr. about it on Monday.
  • Bobs1wife
    Bobs1wife Member Posts: 150
    #12
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    HER2 more questions
    Talked with my husband's oncologist and he says that they don't test primary tumors of the esophagus. Is this correct? It seems to me that it would be beneficial to test any tumor. Cindy, I did take a printed copy of your link with me. Thanks for that. Linda
  • unclaw2002
    unclaw2002 Member Posts: 599
    #13
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    Bobs1wife said:

    HER2 more questions
    Talked with my husband's oncologist and he says that they don't test primary tumors of the esophagus. Is this correct? It seems to me that it would be beneficial to test any tumor. Cindy, I did take a printed copy of your link with me. Thanks for that. Linda

    Linda,I don't know what the
    Linda,

    I don't know what the oncologist is speaking about. I am not a doctor, just a lawyer (LOL) so I can't speak with certainty. However my understanding is that you can test primary tumors in the esophagous and distant metastisis. This treatment can be for the first-line treatment of locally advanced, recurrent or metastatic gastric and gastroesophageal adenocarcinoma, So it doesn't appear that it has to involve metastatic disease so why wouldn't you test the primary tumor. But again I am not an expert. I would ask if this is the same doctor that told you this wasn't relevant to your husband's treatment if so I might probe further.

    Here is a link I found to a European study (I did a quick google search) which clearly discusses testing the primary as well as distant metastatic tumors in esophageal cancer for the HER2 expression gene. Here is the link to the study . . . http://www.nature.com/modpathol/journal/v20/n1/full/3800712a.html

    Report from 5/2010 stating that Herceptin can be medically necessary in the treatment of espohageal cancer http://www.anthem.com/ca/medicalpolicies/policies/mp_pw_b087953.htm

    Good luck,
    Cindy

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