Long-term maintenance therapy for esophageal cancer

dmb1216
dmb1216 Member Posts: 1
in Esophageal Cancer #1

Hello all.  I am a 43 year old diagnosed with HER-2 negative distal esophageal/GE junction adenocarcinoma with nodal, liver, and lung mets in September of 2017.  I completed 6 cycles of FOLFOX and had a short course of radiation therapy to palliate bleeding as the tumor bled to the point that I required a transfusion.  I was restaged earlier in January, with a PET/CT showing resolution of the lesions in my lungs, no residual activity in my liver, and significant improvement in my esophageal and nodal disease, which is significantly debulked with much reduced but not completely resolved PET activity. My oncologist added 2 additional cycles of FOLFOX, the last of which begins on Monday the 22nd, after which I will be transitioned to some form of long-term maintenance therapy.   I am a physician myself (radiologist) and understand how blessed I am to have gotten the response I have from the initial chemotherapy, and want to transition to the maintenance therapy that gives me the best chance to keep the disease suppressed for as long as possible.  Of course I know my doctors and colleagues will give me great advice, and am going for a second opinion as well to make sure I have my bases covered, but I am curious as to what patients treated elsewhere have experienced in similar circumstances and what sorts of results you have gotten from long-term options. Thanks in advance for any information you can share and God bless you all and all your loved ones.   

Comments

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    edited January 2018 #2
    Hello dmb

    Hello dmb,

    I was stage III and 40 years old my 1st time around with EC in 2008 (my oncologist calls it gastric junction cancer).  I did chemo/radiation, then an esophajectomy, then a bonus course of chemo (same but stronger than the 1st time) just to bayonet the cancer corpses and make sure they were really dead.  The surgical pathology showed that I had had a complete response to the initial chemo/radiation.  We still went ahead with the bonus chemo because I was young and wanted to be as aggressive as possible.  Unfortunately, what EC does best is keep coming back and I had a recurrence in a lung in 2011 when 44.  I was stage IV and given a particularly poor prognosis (7-8 months).  Herceptin had just been approved for stage IV EC a short time before I was diagnosed and I was at a top quality hospital where they knew to test for my HER2 status.  Folks still show up on this site and have no idea what that is because they are being treated by the 50% of doctors and hospitals that are below average.  I was HER2+ and had herceptin added to my chemo (12 rounds of folfox).  The folfox nearly killed me, but I had a great response to the treatment.  I had another complete response and am still testing clean 6+ years later.  I've been getting the herceptin every week by itself since I stopped the folfox (May 2012).  That's been my long term plan.  You're HER2-, so that won't be your path, but I truly hope there is a similar path open for you.

    Best Wishes beating this SOB,

    Ed

     

  • AngelaMarsh
    AngelaMarsh Member Posts: 19
    #3
    Hello dmb. I'm sure no one

    Hello dmb. I'm sure no one needs to tell you that we're all different.  That being said my husband has been on maintenance chemo for approx 9 mos. and at present we're waiting to find out if there is a trial available to him. in August 2016 he was diagnosed with stage 4 EC. He had a 12cm tumor in his esophagus with mets to 4 surrounding nodes. He underwent 6 folfox treatments which put him in the hospital with a bleeding ulcer and a-fib. The gastro who cleaned out the blood said he saw very little cancer at the juncture between stomach and esophagus. The next PET showed him in complete remission "clinically". We celebrated in Feb of 2017 and since he is HER2+ he continued with herceptin. He also went on a maintenance protocol. August 2017 he had difficulty walking down stairs. An MRI showed a tumor in his cerebellum which was removed then a one time radiation blast (the name of this type of radiation escapes me but you probably know it being a radiologist). His surgeon said the tumor had been there awhile - I probably should have but never asked what awhile meant - I was just thankful the surgery went well - she said tumor popped out like a cork. His first brain MRI showed his brain clean. His 2nd brain MRI is Monday, january 22. He will also be scheduled for a PET soon as well. He continues on the treatments however after the brain mets the onc added oxalyplatin again. He is infused every other week - no fanny pack because that amount of chemo played havoc with his system. He's losing weight which scares me. In August 2016 he was 190; today he's 146. This SOB cancer as Ed refers to it is a tough one. I wish you much success in beating it.  

    PS: Ed I send regards

  • Zzdunne
    Zzdunne Member Posts: 4 Member
    #4
    Husband on 2nd therapy after FOLFOX

    Hi dmb. My husband was initially diagnosed as stage2b, had his Esophagectomy in Nov 2016, then restaged to Stage 4 in Feb 2017 on discovery of  extensive liver metastases.  He had 9 rounds of Folfox which shrank the tumours but not a complete response. 2 CTs afrer rounds 7 and 9 showed little improvement and he was being laid low by the Folfox so was transitioned to a maintenance therapy of Xeloda.  This is essentially a tablet form of the 5fu portion of Folfox. Some people do well on this for a long time. Unfortunately it did not work for my husband and the tumours grew and more developed in the 2 months he was on Xeloda.  He is now on Keytruda....immunotherapy. The first scan a couple of weeks ago...after 4 infusions....showed small shrinkage in the larger tumours but a possible new one.  He will have another scan after 3 more infusions.  It does not look like he will have any miracle response but more quality time would be wonderful. Just a note....if you do go on Xeloda, watch out for side effects caused by Folic acid (nausea). In both the US and Australia, folic acid is added to bread flour . Once I discovered  the linkage and found organic bread without added Folic acid, and stopped his multi vitamin that had high levels of folate ,  he no longer suffered from nausea. Keep it in mind . The very best of luck to you. 

  • CancerEclipse
    CancerEclipse Member Posts: 15
    edited February 2018 #5
    Hi dmb, What a diagnosis and

    Hi dmb, What a diagnosis and cancer treatment path you've been on! Since you wrote this in January, I'm wondering how you are doing mid-Feb? I'm wondering if you have thought about broadening out your personal treatment track to include the foods you're eating, juicing environment? If not, let me know and I'll send you some ideas on that, <Content removed by CSN Support Team>. I took two years between my chemo-radiation until I had my surgery - March 14, 2017. During that time we really hit the cancer with natural and spiritual means which made the huge difference in my ability to handle the chemo, and the operation.

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