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GeriR
GeriR Member Posts: 20
in Esophageal Cancer #1

Hi all. I was happy to come across this site. It's nice to see the positivity and encouragement offered here. As you all know, there's not a lot of that in researching online. My husband was diagnosed with EC this past february. He had chemo and radiation in Asheville NC where we live then surgery at Duke in July. He did very well after surgery and is eating whatever he wants, just in smaller portions.  He was diagnosed a month ago with metastasis to the right hip area, which has been there since before surgery. It was biopsied in July and we were told results were negative. Needless to say we were devastated to hear this. Fortunately at this time that is the only area involved. He has gone through 18 rounds of radiation and Xeloda. Next step is to rescan in a couple of weeks and proceed with surgery to remove this area if the scans are clean. It's been a tough year to say the least. Lots of falling through the cracks with some of his health care providers. My heart goes out to each one of you. This is not an easy road for the patient or family. I will keep you in my prayers. 

One thing I will say is never give up hope. Enjoy the present moment and try not to project into the future. 

Geri

Comments

  • paul61
    paul61 Member Posts: 1,392 Member
    #2
    I am happy to hear it seems to be isolated

    Hello Geri,

    I am so sorry to hear that additional cancer has been found after your husband has gone through surgery, but glad to hear that it seems to be isolated to one area. I assume the plan is to reduce the tumor with targeted radiation and use Xeloda as “mop-up” or “insurance” treatment. I am so hoping the next scan comes back clear. I hope they are doing a whole-body CT/PET to insure nothing is missed this time around.

    I know it must be very frustrating for both of you to get this news after you had thought you had completed treatment the first time. As a survivor, I know what you mean about issues with health care providers. I am sure your husband is happy to have you as an advocate as he tries to navigate his way through treatment. You really can’t take things for granted when it comes to insuring that you get the best care and treatment options.

    Best Regards,

    Paul Adams

    McCormick, South Carolina

    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
    Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, EpirubDicin, 5 FU
    Eight Year Survivor

     

    Life may not be the party we hoped for, but while we are here we might as well dance!

  • GeriR
    GeriR Member Posts: 20
    #3
    Paul, thank you so much for

    Paul, thank you so much for your reply. Your posts are so encouraging and I'm so happy that you're doing so well. The plan is for a bone scan and CT of chest, abdomen and pelvis. We are also waiting for results of PDL1. We're hoping he'll be able to do immunotherapy. 

    You're so right about being an advocate.  I encourage everyone to not be afraid to speak up and ask questions. 

    Thanks again for responding  

     

    Geri 

     

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    #4
    Hello Geri

    Hello Geri,

    Sorry that you find yourself here.  It upsets me to hear folks saying that things have fallen through the cracks (and they missed on a biopsy as well??).  This is quite literally life and death stuff to us and needs to be treated as such by all involved.  Fully half of all doctors and hospitals are below average.  Your husband needs and deserves to be treated by the better ones.  Duke is a great hospital and it's good that you went there for surgery.  I'd suggest finding somewhere equally good for his remaining care.  I apologize for sounding harsh, but as I mentioned, I find it upsetting when folks don't get the care they deserve.  It happens far too frequently that I see that on this site.  What may well be a valuable learning experience for a doctor can come at a very high price for the patient.  

    Please tell me your husband has been tested to see if he is HER positive.  I was/am stage IV my second time around (was stage III the 1st time).  I had a recurrence in a lung and tested HER positive.  I was able to get herceptin along with chemo and had a great response to it.  I'm now 6+ years from being given just a few months to live as my prognosis.  Stage IV can be beaten back; please be the next success story.

    Best wishes & hoping for great test results,

    Ed

  • GeriR
    GeriR Member Posts: 20
    edited December 2017 #5
    Hi Ed. Thanks for taking the

    Hi Ed. Thanks for taking the time to send a message. Yes the first biopsy was negative. We also found out the spot on the right hip was there on the first PET scan in March but was so small they read it as insignificant. It lit up in July at Duke before the surgery and they sent us back home for biopsy. Dr at Duke told us he thought it was metastatic disease. He was right. Unfortunately it wasn't diagnosed until after the surgery. We just have to move forward from here and do what has to be done. Hopeful that scans in a couple of weeks will be good. No one has mentioned the HER testing. I will definitely check into that. They are testing for PDL1. Not sure if these are similar? 

    Praying he will be the next success story. 

    Thank you for sharing your story. 

     

    Geri

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    #6
    Hello Geri

    Hello Geri,

    Your doctors should absolutely know to test for HER/NEU2 status in 2017.  In 2011, when it was brand newly approved for EC (and I was diagnosed with it), they might not have known to test for it, but it is long past initial approval.  It is an EXTREMELY important thing for folks who are/might be stage IV EC.  It can very much be the difference between surviving and dying.  Believe me, I know I sound like some crusading nutjob (and I am), but I am also right.  Google it if you doubt me.  Or search this site for this stuff.

    Hoping the best for you guys,

    Ed

  • GeriR
    GeriR Member Posts: 20
    #7
    Thank you so much for the

    Thank you so much for the info Ed. I'm going to start researching and will contact Dr on Tuesday. I wonder why they didn't mention it. No one at Duke did either. I appreciate your advice. 

    Hapoy New Year to you! 

  • GeriR
    GeriR Member Posts: 20
    edited January 2018 #8
    GeriR said:

    Thank you so much for the

    Thank you so much for the info Ed. I'm going to start researching and will contact Dr on Tuesday. I wonder why they didn't mention it. No one at Duke did either. I appreciate your advice. 

    Hapoy New Year to you! 

    My husbands scans show no

    My husbands scans show no metastasis to major organs or bones thankfully but there is an area on left adrenal gland that wasn't there in November. This is of course concerning. Wondering if anyone has any info or personal experience with this finding?

  • GeriR
    GeriR Member Posts: 20
    #9
    We heard from one of the

    We heard from one of the doctors yesterday. They are going to treat this area systemically assuming it is mets. No PET or biopsy. I am going to give the doctor at Duke a call today for his opinion. Any thoughts? 

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    #10
    Sorry to hear that news

    Hello Geri,

    I'm sorry to hear that it sounds like the cancer has metastisized.  I haven't heard of mets to the adrenal gland, but then I'm not actually a doctor, so....  Sounds like you're doing the right thing by double checking and getting a second opinion.

    Best wishes,

    Ed

  • paul61
    paul61 Member Posts: 1,392 Member
    edited January 2018 #11
    PD-L1 is an evaluation for a specific immune checkpoint protein

    Just as HER2 positive is an evaluation for a specific over-expression of a protein that indicates that a cancer survivor may benefit from an immunotherapy drug like Herceptin, PD-L1 is an evaluation for an immunotherapy drug like Keytruda. In fact, there is a young lady who is also an esophageal cancer survivor who had a recurrence on her adrenal gland who is currently being treated with Keytruda and doing quite well the last time I heard from her. She is also a Stage IV survivor.

    It sounds like your oncologist is exploring the right areas. Although, like Ed, I am a bit surprised there has not been some discussion about HER2 testing. I think is always a good idea to get a second opinion. Since immunotherapy drugs are relatively new and many of them are FDA approved for types of cancer other than esophageal cancer. Some oncologists don’t feel they are worth investigation until the FDA approves them for esophageal cancer specifically. Herceptin, for example was originally approved for breast cancer, and Keytruda was originally approved for lung cancer, but progressive oncologists have found they can be effective for “off label” application like second line treatment of esophageal cancer.

    Best Regards,

    Paul Adams

    McCormick, South Carolina

    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
    Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
    Eight Year Survivor

     

    Life may not be the party we hoped for, but while we are here we might as well dance!

  • GeriR
    GeriR Member Posts: 20
    edited January 2018 #12
    Thank you both so much for

    Thank you both so much for your replies. I'm going to mention the Herceptin when we see oncologist next week. The PDL1 unfortunately came back negative. I think they were doing some other foundation testing but not sure if the HER2 is included in that. We will know more next week I suppose about those other results. This is obviously a very tricky beast but we are determined to do everything to try and beat it. Both of you guys are an inspiration and I thank you for sharing your stories of life and encouragement.  I'm trusting and believing for a miracle.

    Geri

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