Just Diagnosed with stage 4 E.C.

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  • Wpturner05
    Wpturner05 Member Posts: 114
    #22
    mam132 said:

    Update
    I have now had 4 treatments with I.V. Chemo, 2 types and on the second round of 14 days of the chemo pills. If you want the names I will give them to you. I am doing very well and have had no side effects. I have not lost my hair as they said I would and the vision in my left eye has returned to almost normal. I had a chemo treatment on Wednesday and saw my oncologist who gave me an A++. I am going back to work on Monday. I have cleaned everything that doesn't move and fixed everthing that I could on my house and barn. I am going back to work on Monday. I feel going back to work will help me a great deal. I am still running for Sheriff next year and it's not that I am in a state of denial, I know how serious my condition is. It's just that I have no symptoms of cancer nor any effect from the chemo. Why I have no Idea. Maybe it's to early but the Doctor say's I more than likely won't feeling anything if I have not yet. I am going to my eye oncologist at the end of the month so he can take a measurment of the turmor in the eye. I don't know if it's still there. It was very small to begin with. That is the only met tumor that I had. Had a full CT scan in late October.

    What do you guys think? What's next? She wants to do some testing in January. I guess this will tell the story in terms of the cancer spreading. Please advise what I should be doing next.

    Hello
    Mike,

    I have read through all of your posts and applaud you for your positive attitude. I promise you, it will make a difference. I would be remiss if I did not say that I am either confused or concerned, maybe both, about your treatment plan to date. Is it my understanding that you are being followed primarily by ocular oncology? Or is your primary oncologist a GI oncologist? You are correct in saying that there are limited options if you are stage IV, but as was mentioned before - if your primary site is GE junction - and indeed adenocarcinma, you should be followed PRIMARILY by a GI oncologist. I hope that my understanding is incorrect and you are receiving all of the proper treatment plans. My guess is that at Cleveland clinic they would send you to the correct oncology group.

    I replied in this manner in response to your request on feedback and what to expect. I am not sure we can advise you until we understand a little better. I know it is all dizzying!! It was for all of us too. Unfortunately at this time, many of us have become very wise to the treatments and plans in regards to many stages of this cancer. I wish you well in you treatments. God speed.

    We look forward to helping you in any way we can.

    Sincerely,
    Whitney
  • mam132
    mam132 Member Posts: 20
    #23
    unclaw2002 said:

    Mike,I am sorry for what
    Mike,
    I am sorry for what you have been going through. Hearing those words --- you have cancer is a life altering moment.

    I must be blunt, however, I do not understand if your cancer is Esophageal Cancer and the primary site of the cancer is in the Esophagus why you are being treated by an eye oncologist. Esophageal Cancer is rare and many doctors are not familiar with the protocols for treatment --- and in your post it appears that your treatment is focused on the eye tumor and when you said she wants to check you in January sent chills up my spine.

    You have cancer in your esophagus --- and you need treatment for that and it should not wait even though you have no symptoms because the esophageal cancer has already started spreading to other parts of your body. As Chatal said --- a 3 to 4 week course of chemo is not the standard of care for Esophageal Cancer and most certainly you should have had scans to evaluate what is going on in your esophagus and other parts of your body. Perhaps we misunderstand your post but it sounds like the treatment has solely focused on your eye and not the rest of you.

    It sounds like you should really check into a second opinion --- having faith is important and having confidence in your doctors is important too --- but you can have trust and faith, but you should independently verify the information is correct. The old Reagan saying "Trust but Verify". Anyway you are indeed fortunate that the chemo has not had a really bad effect on you but again for EC patients they use the really big guns because it is such an aggressive cancer and we don't know what chemo they administered to you or the dosages.
    Good luck and keep us posted.

    Best,
    Cindy

    I do have two oncologists. One for the eye and one for upper G.I. I got rid of the oncologist that was going to treat me for lung cancer. He wanted to do no further testing and advised me I had a short time to live. He told me to tell my adult children that I was going to die and that's what I did. Since then I have a new Doctor and she is working very well with me. Maybe I didn't explain myself, I know that I may go through many rounds of chemo. She has me scheduled for three rounds now. She will then do further testing to determine what my next move would be. I also must visit the eye oncologist for measurment of the turmor if there is any left. I just wondered what you guys thought about my treatment so far. Like I say I am feeling wonderful. I am going to stay positive as I know of no other way to be. I have done this my whole life and have been extremely sucessful and reufuse to stop because of this. I will live life to the fullest one day at a time and go from there.
  • Wpturner05
    Wpturner05 Member Posts: 114
    #24
    mam132 said:

    I do have two oncologists. One for the eye and one for upper G.I. I got rid of the oncologist that was going to treat me for lung cancer. He wanted to do no further testing and advised me I had a short time to live. He told me to tell my adult children that I was going to die and that's what I did. Since then I have a new Doctor and she is working very well with me. Maybe I didn't explain myself, I know that I may go through many rounds of chemo. She has me scheduled for three rounds now. She will then do further testing to determine what my next move would be. I also must visit the eye oncologist for measurment of the turmor if there is any left. I just wondered what you guys thought about my treatment so far. Like I say I am feeling wonderful. I am going to stay positive as I know of no other way to be. I have done this my whole life and have been extremely sucessful and reufuse to stop because of this. I will live life to the fullest one day at a time and go from there.

    That's right!!!
    Mike,
    So glad I am clear. YOU GO!!! Stay in the positive. This EC road can be difficult and a strong positive attitude will do wonders. I am happy you seem to be getting a good plan and enjoying life.

    Sincerely,

    Whitney
  • Daisylin
    Daisylin Member Posts: 365
    #25
    mam132 said:

    I do have two oncologists. One for the eye and one for upper G.I. I got rid of the oncologist that was going to treat me for lung cancer. He wanted to do no further testing and advised me I had a short time to live. He told me to tell my adult children that I was going to die and that's what I did. Since then I have a new Doctor and she is working very well with me. Maybe I didn't explain myself, I know that I may go through many rounds of chemo. She has me scheduled for three rounds now. She will then do further testing to determine what my next move would be. I also must visit the eye oncologist for measurment of the turmor if there is any left. I just wondered what you guys thought about my treatment so far. Like I say I am feeling wonderful. I am going to stay positive as I know of no other way to be. I have done this my whole life and have been extremely sucessful and reufuse to stop because of this. I will live life to the fullest one day at a time and go from there.

    We need clarification!!
    Hi, I think you have us all confused here...... are you still taking chemo treatment? It seemed by your last post that you were done, and returning to work, which is why we all replied with the "3 weeks is not enough chemo" Now this post sounds like you are still receiving treatment......

    Could you please clarify for us so that we can understand what you are going through? Also if you tell us the names of your chemo drugs, that would be a great help as well. It's hard to answer your question about how we think your treatment is going so far without more information.

    Glad you are feeling great! Hope it stays that way
    Chantal
  • TerryV
    TerryV Member Posts: 887
    #26
    mam132 said:

    I do have two oncologists. One for the eye and one for upper G.I. I got rid of the oncologist that was going to treat me for lung cancer. He wanted to do no further testing and advised me I had a short time to live. He told me to tell my adult children that I was going to die and that's what I did. Since then I have a new Doctor and she is working very well with me. Maybe I didn't explain myself, I know that I may go through many rounds of chemo. She has me scheduled for three rounds now. She will then do further testing to determine what my next move would be. I also must visit the eye oncologist for measurment of the turmor if there is any left. I just wondered what you guys thought about my treatment so far. Like I say I am feeling wonderful. I am going to stay positive as I know of no other way to be. I have done this my whole life and have been extremely sucessful and reufuse to stop because of this. I will live life to the fullest one day at a time and go from there.

    Yup - we're a nosy bunch!
    Mike,

    I know it seems like we are a terribly nosy group of *strangers*, but! We ask our questions from understanding the path.

    Is the 3 week chemo then reevaulate maybe a "let's see how current chemo has done before we decide which chemo "cocktail" to use next"? Has the doctor laid out a treatment plan for you that you might share with us?

    We have many (too many) here with Stage IV experience. I know they are wishing to help, but really do need clear understanding of the treatment plan set out by your oncologist. There is likely to be someone here that has traveled that exact path before you. That shared experience and the ability to make use of the knowledge they gained during their EC journey is invaluable.

    Keep the positive thoughts strong! Keep planning for the future! Keep us in mind for the days you need to ask for a hand or wish to share a victory moment.

    Love & Hugs!

    Terry

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