38 and diagnosed with stage 4 esophageal cancer

135

Comments

  • 1979bmg
    1979bmg Member Posts: 47 Member
    14 and 17 month update

    Well...this outage and all those posts being erased sure sucks.

     

    My November scans showed the PET SUV uptake decreased at the GE junction to 3.1, meaning it likely was inflammation...no other evidence of metastatic disease.

     

    January scans show no suspicious esophageal uptake, and mild diffused increased PET SUV uptake in the stomach which is likely inflammation.

     

    A few deep lung nodules that were suspicious at initial diagnosis are unchanged since then, and and mildly enlarged spleen continues, 13.4 cm which isnt that bad.

     

    Everything else is "stable...negative...unremarkable...no new evidence of metastatic disease."

  • gshaffer01
    gshaffer01 Member Posts: 2
    1979bmg said:

    14 and 17 month update

    Well...this outage and all those posts being erased sure sucks.

     

    My November scans showed the PET SUV uptake decreased at the GE junction to 3.1, meaning it likely was inflammation...no other evidence of metastatic disease.

     

    January scans show no suspicious esophageal uptake, and mild diffused increased PET SUV uptake in the stomach which is likely inflammation.

     

    A few deep lung nodules that were suspicious at initial diagnosis are unchanged since then, and and mildly enlarged spleen continues, 13.4 cm which isnt that bad.

     

    Everything else is "stable...negative...unremarkable...no new evidence of metastatic disease."

    hope

    My boyfriend is 40 years old and was just diagnosed. I am hoping because he is fit and strong he can fight this. This is absolutely a terrible thing to have. I hope that you have more good news, your stories are giving me hope in a time that I desperately need it. 

  • 1979bmg
    1979bmg Member Posts: 47 Member
    20 Month and 23 month update, April 2019 and July 2019.

    All scans for the last 6 months still show no "measurable" evidence of metastatic disease.

    Fatigue has slowly become worse overall since January 2019 and especially since August 2018.

     

    Overall, I have been EXTREMELY fortunate with having minimal side effects and virtually no complications. No surgery, no dilations, no strictures, no effusions, no ascites.  

     

    The last few treatments of Oxaliplatin gave me high fevers and sent my platelets and White cell counts into the sewer, but not to the point that I needed Nulasta or any blood transfusion. This was Jnauary/February 2018, and this is really the worst that has happened so far.

     

    Mildly enlarged spleeen since August 2018  and a few lung nodules that haven't changed since diagnosis are the only real things that show up abnormal on any scans.

     

    The right paratracheal node in the neck , which was golf ball sized with a cancerous mass at diagnosis (34mm x 23 mm) 23 months ago, now measures between 5mm and 7mm and has remained stable since October 2018, with stable mild soft tissue thickening.

     

    As of July 16th, I have eliminated the 5fu chemotherapy from treatment regimen and now continue with Immunotherapy alone.

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    Congrats!!

    Hello,

    Congratulations on even more good news.  Stage IV survivors aren't particularly common, but they exist.  It's awesome that you continue to share your story of success to help folks who are finding themselves in a similar situation.  A ray of hope can go a long way when they are blindsided with a diagnosis that they really don't understand and are fearful of.  I hope everything continues to go well for you on your journey, but as you know, there are the occasional bumpy stretches.  You've weathered them, though.  So congratulations and continued good health to you.

    Best Wishes,

    Ed

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    bluetick said:

    hang in there

    can be whipped!!

    You seem dangerous

    Hello bluetick,

    I'm glad that you have had a good response to your treatment, but you are a dangerous thing to other EC patients.  You are recommending not doing prescribed chemo.  You are advocating for not doing recommended surgery.  I'm seriously glad that it seems to have temporarily worked out for you, but you are the very definition of an anecdotal case.  The science & real statistics advocate for doing everything the exact opposite of the way you are recommending.  Please do not try to do active damage to others who are finding themselves suffering from EC.  You may well think you are helping, but you are a menace to people who are looking for how to deal with EC.

  • midlandgigi
    midlandgigi Member Posts: 16
    AGREE WITH DEATHORGLORY

    I personally know someone who had the attitude of Bluetick and he lived only a few months.  Every patient is different and each body reacts differently to the disease and to treatment.  As a Stage 4 survivor, I feel strongly that it would be foolish of me to ignore Oncologists/Surgeons who have dealt with this disease for many years.   I have been through some extreme treatments with extreme side effects but for now I am free of active cancer.    I am blessed to have Faith that keeps me fighting, Drs. who are skilled and compassionte and family and friends who  support me in every way.  

  • bluetick
    bluetick Member Posts: 2
    hang in there

    can be whipped!!

  • What are you doing besides chemo?

    Dear BMG,

    I've fought with ec for 3 years, but not stage 4 level. Sorry yours was so advanced when they found it. I started my treatments with chemo-radiation then switched to naturopathic means for a couple years. Actually this regenerated my esophagus somewhat, kept my immune system strong (chemo really knocks that down) -- haven't had a cold for 3 years, and contained the cancer in the tumor area. If interested in how I dealt with this through the medical, natural, and spiritual, let me know.  [email protected]

    EC

    My 54 year old husband was just diagnosed with EC and I would love to know what kind of naturopathic means you used.  His is such a new diagnosis, he hasn't had the petscan done yet.

     

    Thank you so much in advance.

  • paul61 said:

    Just an annual EGD follow up

    1979bmg,

    After year seven I am no longer in contact with my oncologist. I just have an annual endoscopy with biopsies at the anastamosis and the standard blood work you would receive with a typical annual physical.

    Paul

     

    EC

    Paul that is wonderful!  My husband was just diagnosed, and besides the inital shock, we are not sure where to start, where to go.  Could you offer any advice?

  • paul61
    paul61 Member Posts: 1,379 Member
    edited October 2019 #51

    EC

    Paul that is wonderful!  My husband was just diagnosed, and besides the inital shock, we are not sure where to start, where to go.  Could you offer any advice?

    Testing and staging will be first then a treatment plan

    I am so sorry to hear about your husband's recent diagnosis. A cancer diagnosis is frightening but survivable. You will be referred to an oncologist who will order a series of tests to complete "staging". Staging is to determine the locations of the cancer and the extent it has penetrated the esophagus. He should receive a PET Scan or a CT scan and an endoscopic ultrasound (EUS). The EUS will determine the size of the tumor and the depth it has penetrated into the esophagus. The PET or CT scan will determine the extent that the cancer has spread in your husband’s body. At that point they will assign the cancer a “stage” and define a treatment plan accordingly.

    His treatment plan would typically include radiation therapy to kill the cancer cells that are evident from the testing, and chemotherapy to seek out cancer in other areas of the body and destroy those cells. Modern treatment with chemotherapy and radiation therapy is not always pleasant,  but there have been significant improvements in the way drugs are administered, and support medications to reduce side effects.

    Some things to consider going forward:

    1. Ignore what you read on the internet about survival outcomes. That information is typically dated and is made up of averages that do not consider your husband’s age, health profile, or support network.
    2. Attend all of your husband’s appointments that you can and take a notebook and pen so you can take notes and write down questions that you may have in advance of the appointment. You are going to hear a lot of terms that are new. Don’t be afraid to ask to definition of terms and explanation of procedures that you are not clear about. Medical professionals tend to forget that we don’t understand the terms they use every day.
    3. Your friends want to help but they don’t know what to do. Be specific about how they can help you with things around the house, shopping, and help with other tasks. You and your husband will be very busy with testing and treatment appointments for the next few months.

    Here are some questions you should ask your oncologist:

    1. What kind of cancer does my husband have? Adenocarcinoma or Squamous cell carcinoma?
    2. Where is the cancer located and how extensive is the spread?
    3. What is my husband’s “staging” and what does that mean?
    4. Have my husband’s tumor cells been tested for HER overexpression?
    5. What treatment protocols will my husband receive?
    6. What are the typical side effects he may have?
    7. How long will treatment last?
    8. Is the intent of the treatment curative or palliative?
    9. Is there a 24-hour contact number we can use in the event of questions about treatment or side effects?

    I would suggest you post your questions on a cancer forum called “Smart Patients”. This forum is also a cancer survivors form but gets much more readership and is more interactive than this forum. You will find it a https://www.smartpatients.com.

    Wishing you the best of outcomes and you complete your treatment journey.

     Best Regards,

     Paul

  • 1979bmg
    1979bmg Member Posts: 47 Member
    25 1/2 month update.

    Last 6 Treatments have been with Tecentriq immunotherapy alone.  No more PET scans for the time being unless something shows up on the CT. As of yesterday, nothing has. Still Showing No evidence of disease for the past 16 months.

     

    My spleen is back to normal size after the damage from heavy chemotherapy 2 years ago. My energy level seems to be slowly improving. Fatigue is still noticeable, but manageable and I am able to work around it.

     

    I am having my original tumors tested for PDL-1 expression. I assumed that this was done when starting treatment but it never was. This would determine if I could ever take this immunotherapy or Keytruda again if I ever stop treatment and end up with a recurrence.

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    1979bmg said:

    25 1/2 month update.

    Last 6 Treatments have been with Tecentriq immunotherapy alone.  No more PET scans for the time being unless something shows up on the CT. As of yesterday, nothing has. Still Showing No evidence of disease for the past 16 months.

     

    My spleen is back to normal size after the damage from heavy chemotherapy 2 years ago. My energy level seems to be slowly improving. Fatigue is still noticeable, but manageable and I am able to work around it.

     

    I am having my original tumors tested for PDL-1 expression. I assumed that this was done when starting treatment but it never was. This would determine if I could ever take this immunotherapy or Keytruda again if I ever stop treatment and end up with a recurrence.

    Absofvckinglutely tremendous

    Well 1979bmg, that's about as good as it gets.  Congratulations, and continued best wishes going forward.  The world needs a lot more folks like you to shine the light.

  • Connab
    Connab Member Posts: 1
    New Here

    My husband was diagnosed with EC on 8/27/19. He had reflux for years but was not sick. He went to his primary doctors and they wanted to do a upper GI since he had a few occasions that he felt something was stuck in his throat a few times. Well he has been diagnosed with stage 3. He is doing his last chemo this Wed. This will be his 4th chemo and his chemo is FLOT. Has anyone had the surgery? What happens if his chemo is not working? This has been such a nightmare and I am scared (he is too). Has anyone gotten a second opinion? We were thinking of going to MD Anderson (we live in GA and we are currently seeing Emory). How do you get a second opinion of your currently getting treatment done? Thanks for any advice. He is 49.

  • 1979bmg
    1979bmg Member Posts: 47 Member
    2nd Opinion

    I am not sure what the process is in getting a 2nd opinion, but I would definitely do it.

     

    This cancer is nothing to be taken lightly, and a lot of local hospitals that aren't experienced in treating this sometimes take a casual and non-aggressive approach that costs the patient valuable time or even their life.

     

    MD Anderson is one of the top hospitals for treating EC. As well as Mayo Clinic, Cleveland Clinic, Dana Farber and Sloan-Kettering. You want to be at a comprehensive cancer center like the ones I just mentioned, or at the very least a university/teaching hospital. The will have the most experienced Oncologists, as well as the most up to date and cutting edge treatments.

     

    If you do the surgery, you want a surgeon and a facility that does hundreds or thousands of these per year, not one or two. Complications after surgery are common and you want a facility that has the experience in helping the patient recover well.

     

    If chemo isn't working at all, likely another type of chemotherapy or immunotherapy can be tried. 

     

    The surgery is brutal, bit it is your best chance of survival of you are able to do it. Unfortunately I was not able to from the getgo, but my treatment has slaughtered most of the cancer and kept it contained. And my quality of life has been amazingly good all things considered.

     

    My prayers are with you both as you begin your fight.

  • 1979bmg
    1979bmg Member Posts: 47 Member
    29 month update

    In November, I did an endoscopy for the first time in over two years due to some difficulty swallowing food that was getting worse again.

     

    There is a tiny Nodular Mucosa in the lower end of the esophogus, it was biopsied and did come back cancerous. With as severe as the disease was initially, that is nothing shocking or Earth shattering. We are unsure if the tumor is residual or recurrent.

     

    My oncologist does not believe that the tiny tumor is big enough to be causing my swallowing issues. It is possible that is Achalasia or muscular problems that sometimes develop after large tumors disappear.

     

    The plan is to do an Endoscopic Ultrasound (EUS) and see if the tumor can be scooped out. If not, I will likely do some radiation with my current immunotherapy.

     

    The tumor is so small that my follow-up CT scans yesterday were unable to visualize it. The rest of the scan showed no definite evidence of any disease. Some of my lymph nodes have even decreased in size slightly,.meaning the disease is more than likely still contained and controlled. The last 13 treatments have been with Tecentriq Immunotherapy alone. Yesterday was my 61st treatment.

     

    Also, I did have my PDL1 level tested. It is near zero. So theoretically, the Immunotherapy should not have worked.

     

    The reseaech company has finally given us the ok to do treatment every 3 weeks instead of every two. Meaning as long as this  treatment keeps working, I have more time to enjoy life and forget about cancer.

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    1979bmg said:

    29 month update

    In November, I did an endoscopy for the first time in over two years due to some difficulty swallowing food that was getting worse again.

     

    There is a tiny Nodular Mucosa in the lower end of the esophogus, it was biopsied and did come back cancerous. With as severe as the disease was initially, that is nothing shocking or Earth shattering. We are unsure if the tumor is residual or recurrent.

     

    My oncologist does not believe that the tiny tumor is big enough to be causing my swallowing issues. It is possible that is Achalasia or muscular problems that sometimes develop after large tumors disappear.

     

    The plan is to do an Endoscopic Ultrasound (EUS) and see if the tumor can be scooped out. If not, I will likely do some radiation with my current immunotherapy.

     

    The tumor is so small that my follow-up CT scans yesterday were unable to visualize it. The rest of the scan showed no definite evidence of any disease. Some of my lymph nodes have even decreased in size slightly,.meaning the disease is more than likely still contained and controlled. The last 13 treatments have been with Tecentriq Immunotherapy alone. Yesterday was my 61st treatment.

     

    Also, I did have my PDL1 level tested. It is near zero. So theoretically, the Immunotherapy should not have worked.

     

    The reseaech company has finally given us the ok to do treatment every 3 weeks instead of every two. Meaning as long as this  treatment keeps working, I have more time to enjoy life and forget about cancer.

    More Bumps in the Road

    Hello,

    Seems you've run into more bumps in the road.  But you're in your third year of fighting and winning.  You are now an experienced fighter with a winning track record.  You provide hope and inspiration to folks who are finding themselves with a new diagnosis.  Hopefully, they can just scoop out the tumor while they're there anyway.  And perhaps something like a stretching can help with the swallowing.  

    One of the things I say all of the time is that nothing is perfect, but I'm here to complain about it, so I'm winning.  Sounds like you.

    Best Wishes,

    Ed

  • ARTSIOM
    ARTSIOM Member Posts: 2
    edited January 2020 #58
    my father have adenocarcinoma

    my father have adenocarcinoma oesophagus T3N2M1

    Where can I found all chemotherapy combination for this disease?

    Thank you!

  • paul61
    paul61 Member Posts: 1,379 Member
    ARTSIOM said:

    my father have adenocarcinoma

    my father have adenocarcinoma oesophagus T3N2M1

    Where can I found all chemotherapy combination for this disease?

    Thank you!

    The National Comprehensive Cancer Network has excellent info

    The National Comprehensive Cancer Network (NCCN) has excellent patient and clinical guideline info:

    https://www.nccn.org/patients/guidelines/content/PDF/nccnquickguide-esophageal-patient.pdf

    Wishing your father the best in his treatment plan.

    Regards,

    Paul

  • ARTSIOM
    ARTSIOM Member Posts: 2
    edited January 2020 #60
    My father end 1 course of

    My father end 1 course of FLOT combination of chemeotherapy, therapy is not radical, only for life extension 

    Maybe anybody know numbers of doctors in Isreal who work with gastric/ gastric oesopgagus junction?

  • harry458
    harry458 Member Posts: 4
    edited March 2020 #61

    Good to Hear

    Hello,

    It's good to hear that you're doing well with your treatment.  It hits different people in different ways, but I'd assume that your youth and physical fitness are factors working to your advantage. 

    You mention that you've completed round #3 of chemo.  What chemo are you on and how many rounds are you scheduled for?  My stage IV go-around was 12 rounds of bi-weekly Folfox with weekly Herceptin.  It was brutal (especially at the end), but it was effective. 

    I'm six years from my stage IV diagnosis this month.  Unfortunately, there aren't a ton of stage IV success stories out there (though there are a few).  Please continue posting/updating here, you are, in fact, giving hope to others.  If you look at the counter on your post, you can see that a whole lot more people read your posts than actually reply.  Each of those readers may well be someone you've positively impacted.

    Best Wishes,

    Ed

    the way you encourage others

    the way you encourage others to post is greatly appreciated:)