Overlyaverage's Journey with Esophagus (Esophageal) Cancer

Patient: Esophagus (Esophageal) Cancer

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 4 years ago, Female, Age: 75

  1. 1
    over 4 years ago
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    Cancer has spread/Metastasized

    Oh No

    The oncologist who gave me this information expressed no recognition of the impact his information was having on me.

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  2. 2
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I wasn't prepared for the experience. I have never had anything that couldn't be cured overnight with an antibiotic or a pain medication so I expected there would be the same kind of results with medications. I realize now how naive I was and I don't know if having the knowledge before hand would have been better or not. I think I felt very disappointed with my medical providers and found hollow their assurances that they wanted to address my problems and for me to feel okay. Given the limited options available to treat the side effects I finally came to the conclusion that though they truly did want to give me relief it wasn't possible. I decided then that I needed to take more charge of my recovery and to feel more in charge. I have been doing that and I do think it is a better choice for me. I have always been a very independent person and I have never known how to be dependent in a way that is a good balance.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    1 Comment
  3. 3
    over 4 years ago
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    Eating problems (anorexia)

    Side Effects

    I have been feeling more intense side effects these past three weeks or so-no appetite, upset stomach much of the time, tired. I also realized I haven't been fighting back. So, now I am. I am eating small meals and I was surprised to find the food tasted good though I had no appetite. I have also been getting outside more which has reduced the amount of sleeping I am doing. I hadn't realize the extent to which I had allowed the side effects to run my days. I am inspired by the journeys of other people and I am grateful for their examples.

    4 Comments
  4. 4
    about 4 years ago
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    Other

    Drug or Chemo Therapy

    I had a Barium swallow yesterday and learned the pain I have in swallowing is just the residual inflammation from the radiation therapy and this too will pass. I learned I don't have acid reflux, I don't have thrush, I don't have a new tumor, I don't need a dilation of my esophagus-all wonderful neg findings. I also want to share something with people who have having pain on swallowing. Dr. Lily, the radiologist who did the Barium swallow test was so patient with me. I told him I was sure I couldn't swallow anything and if I did I would vomit. He just said we'll try. I did discover I didn't vomit. Considering I hadn't had anything to drink or eat since the midnight before, he probably knew the odds were against vomiting. He also wanted me to swallow three swallows in a row. I was sure I would vomit and I didn't. So...I realize if swallowing in painful and if vomiting is not going to happen, don't take tiny sips-instead take good swallows and get something into you. Turns out less pain with fewer swallows. If I am the only person who didn't know that....

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  5. 5
    about 4 years ago
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    Finished treatment

    Celebration

    This person has yet to add any details about this experience.

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  6. 6
    about 4 years ago
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    Every day there are reminders of how far I've come from the dark days of treatment and the aftermath when I feared I would never return to me previous health and energy level. I am so grateful now to eat with gusto, to have the strong body I had taken fo

    Celebration

    Now that I have faced the possibility and maybe even the likelihood my life might be shortened, the things that seemed so important before have reduced considerably and my gratitude has increased exponentially.

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  7. 7
    almost 4 years ago
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    While the chemotherapy and radiation knocked out the cancer in the two lymph nodes, the cancer in the tumor remains. A CAT scan revealed spots on my lungs or lung and a tumor on a kidney. I have decided to forgo any futher treatment and to rely on palli

    Decision Point

    I am experiencing many of the symptoms I had during and immediately after treatment which were terrible-no appetite, some nausea, pains in my abdomen and pain that started out under my right breast and went around to my mid upper back. I feared I would die from the side effects of treatment and I decided the quality of my living is far more important than the length.

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  8. 8
    almost 4 years ago
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    Other Care

    This person has yet to add any details about this experience.

    0 Comments
  9. 9
    almost 4 years ago
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    Decision Point

    Thank you for your responses. It is so very helpful to have your perspective and your support. During my radiation and chemo I lost over 30 lbs because I couldn't eat. I had repeated hydrations because I couldn't swallow and I vomited continuously. Though my team recommended and prescribed various drugs and methods, non of them relieved the symptoms and I spent at least 90 or more days after treatment slowly recovering. Given the likelihood of the chemo I could take actually adding more than a couple months to my life at this point, I want to feel as good as I can as long as I can so I decided to stop treatment and to use palliative care to relieve pain as it happens. I've learned in the last few days that my have a small tumor on one of my kidneys. I haven't yet talked with my oncologist about the tumor and treatment decisions. The tumor is not thought to be the esophageal tumor. I will continue to check out the options available as I learn more about this stage of cancer. Again, thank you so much.

    1 Comment
  10. 10
    about 3 years ago
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    Cancer is shrinking

    Celebration

    I learned in January the tumor in my esophagus had shrunk. I experienced a low sodium count in January that resulted in several days hospitalization and terrific memory problems that are almost gone. I wasn't able to remember one minute to another at the very beginning. I was also feeling very nauseated for several months and that is gone. My appetite is increasing. I lost so much weight my stomach shrunk and I get full very easily so sometimes I don't take in enough calories. The return of feeling hungry at least sometimes is most welcomed. I don't seem to have in significant symptoms these days. I continue with taxol and cyramza. My doctor reminds me my cancer is not curable and even he seems pleasantly surprised by my ability to handle this drug regimen so well and that I am doing so well. I count myself to be so fortunate and I am grateful for every day. The progress in curing and living with cancer is astonishing to me. I feel physically as strong as I ever have even when I was younger. In my case the weight loss has been beneficial because I was considerably overweight and I weight now what I should for my height and body structure. So I am celebrating life every day though I am very human and get angry and behave like an idiot at the same time. I hope to hear more and more good news from survivors.

    1 Comment
  11. 11
    about 3 years ago
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    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  12. 12
    about 3 years ago
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    Milestones

    The first two oncologists whom I saw and fired give me 6 to 9 months to live. My oncologist now doesn't make predictions. I had a PET scan May 2015, a CAT scan this past January and another PET scan on Tuesday this week. I was first diagnosed in January, 2015. My CAT scan in January demonstrated a shrinkage in the tumor in my Esophagus and the PET scan info I received yesterday shows the cancer has not spread and a spot in my Kidney did not light up from the scan so whatever it is it is not seen as cancerous. I am on Taxol and Cyramza. The only significant side effects these days is sometimes a queasy stomach sometimes that leads to a poor appetite. I think this probably happens when I get constipated so I am working on resolving constipation, My fingernails and toe nails are infected from the taxol and there is really not much that can be done it seems. Infected must be the wrong word because no medication is recommended to treat the problem. My nails smell from whatever is underneath and they hurt much of the time. Small prices to pay for being alive and feeling pretty great almost all of the time. I have plenty of energy and except for these complaints I feel as healthy as ever. My hope is that I continue to benefit from my chemotherapy and targeted therapy until something in the autoimmune system research comes along that could knock out the cancer entirely because I understand the autoimmune therapy has little to no side effects. I think the cyramza is doing the trick.

    1 Comment
  13. 13
    over 2 years ago
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    Nerve damage (peripheral neuropathy)

    Side Effects

    I've decided to stop taking Taxol due to the neuropathy in my feet which includes my toes and a small part of the pad of the foot to which the toes are attached. I've taken Taxol far longer than most people with fewer side effects until now so I count myself lucky. The Taxol has also affected (caused infections) my fingernails and toe nails and now my nails are almost cleared of the infection and I hope will grow out to be somewhat like normal in a few months.

    0 Comments
  14. 14
    over 2 years ago
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    Whether or not to continue Taxol due to expanding neuropathy.

    Decision Point

    This person has yet to add any details about this experience.

    0 Comments
  15. 15
    over 2 years ago
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    Remission

    Celebration

    The CAT scan I completed in June indicated no cancer. I continue to take Cyramza just in case some cancer cells too small to be picked up by the scan are still being produced. The side effects of Cyramza are minimal so it is like an insurance policy at this point. My gratitude for this happy state of affairs knows no bounds. My great wish is that other people with esophageal cancer of the ad? (spelling?) kind will have this experience too. Check out Cyramza and if necessary the Cyramza/Taxol approach.

    0 Comments
  16. 16
    over 2 years ago
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    Decision Point

    I will be having a CAT scan later in January about the same time my cancer-Stage 4-was diagnosed two years ago and I was told I would have 6 to 9 months to live. The reason for the CAT scan is to determine if a spot on one of my lungs is cancer. The radiologist doesn't think it is metastasized from the esophageal cancer site. There is some increased thickness in the walls of the esophagus too and again it could be more cancer or more results from the chemotherapy. I realized when talking with my therapist yesterday that the blahs I had been feeling was the result of my worries about the outcome of the CAT scan. I am 73 years old now and nearing the end of my life from one cause or another. I feel very healthy-lots of energy and I have no symptoms that would point to cancer. Nevertheless...I think I don't want to go through the heavy duty treatment I did earlier. So I think I would choose to let the cancer take it's course. At the same time I plan to live as fully as I can regardless of the outcome which leads me to think about this last portion of my life and what matters to me in living it. My therapist gave me some books from her library. I wonder if others when they thought they were facing a death as the result of the cancer or were thinking about what they wanted to do with what remains of their lives have learned and what they have put into practice or plan to before they die. Right now when I feel so strong and healthy, I want to make better use of my body and energy. I want to get back to the aquatic exercise group. How are you living your life especially if you are older and know you are going to die one way or another?

    2 Comments
  17. 17
    over 2 years ago
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    Cancer is back/Recurred

    Oh No

    A recent CAT Scan follow up since June shows a speculated ovid nodula lung mass and several other nodules of the size that usually indicates cancer. I will see my oncologist on Tuesday for more information and a course of action. I have had no symptoms which seems to be the norm. interesting that after I have been diagnosed with Esophageal cancer and have been dealing with that successfully, this new cancer even though it may kill me doesn't scare me at all to the degree the first diagnosis did. For you who have had recurrences of the first cancer or an occurrence of another cancer,what was your response to the news and what advice would you give me.

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  18. 18
    over 2 years ago
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    The nodule in my lung is not cancer and as far as I know I may be cancer free.

    Celebration

    It seems as though I am tempting fate when I say I may be cancer free. I've read the thoughts of other people about possibly being cancer free and it seems many of us find it hard to believe. Cancers seem to have a way of waking up or developing new places and forms. Nevertheless I am celebrating this respite and I am so grateful. My greatest wish is that others will have this experience. Please check out Cyramza if you have my kind of cancer. Remember no side effects. It was prescribed to me as palliative care and I think it can be used to fight the cancer from the onset.

    0 Comments
  19. 19
    almost 2 years ago
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    Clinical Trial

    This person has yet to add any details about this experience.

    0 Comments
  20. 20
    almost 2 years ago
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    Other Care

    This person has yet to add any details about this experience.

    0 Comments
  21. 21
    almost 2 years ago
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    Hair is back

    Celebration

    I am already taking my fuller head of hair for granted and wishing it would behave better. My liver tests are high in four areas and my oncologist was concerned cancer was the cause. Turned out there is no cancer and he is now wondering if a statin I was taking for high cholesterol might have been the culprit. I off that drug now and we are watching the numbers. I want to celebrate the WE in my cancer journey. I have so much appreciated our approach to my treatment and that we celebrate the good news and we worry about the bad. My cancer has stayed confined to the esophagus and it has not grown in the year between these most recent CT and endoscopy exams and last year. I know, though, that I will die of esophageal cancer and the knowledge only causes me to appreciate my current day that much more. The Cyramza has extended my life and there for a while it looked as though the Cyramza was not enough. My problem now is my weight which keeps sliding. Only cancer patients can rue the loss of weight-well maybe some other conditions cause weight loss too. The up side is that I can eat as much as and I can eat anything I want and even with that I don't want to eat ice cream and cake all of the time. Most amazing.

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