Laying flat for radiation

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cobolca
cobolca Member Posts: 12
in Esophageal Cancer #1
Aug 7th I had my esophagus removed with Ivor Lewis. I had pre-surgery radiation for 5 days a week for 6 weeks and then the 5 day chemo pack for 6 sessions. I had been diagnosed with stage 3, but 2 months after the surgery, a node started growing larger in the clavical area by the throat. It has grown huge and some of the other nodes have now also been shown to be metastasized. The post-surgery chemo is not working, so they are now going to start radiation again. The made a mask yesterday to bolt me flat down on a table for the radiation. Now, I've been fighting this 'Beast' for 2 years as Esophageal cancer was preceded by Cervical cancer. I'm 73 and the doctors gave me zero chance, but I keep going like that bunny, but I'm terrified of having to lay flat for the radiation. Has anyone had radiation after removal of the esophagus? Any advice from this wonderful forum that has carried me through all this. I live alone and don't know what I would have done without the knowledge from this group. Thanks to all of you.

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  • unclaw2002
    unclaw2002 Member Posts: 599
    #2
    Options
    *************
    I am not a
    *************
    I am not a doctor and this is my personal opinion based on my experiences with my dad who was diagnosed with EC in December of 2009
    *******************************

    I am not sure about the lying down part after the Ivor Lewis, but I would speak to your doctors and inquire as to how many treatements they intend to give you. I was under the impression that the mid thirties is about the maximum number of radiation treatments someone can have. According to your post you have already had 30 treatments so it looks like you may be at the upper end. Where are you being treated and who are your doctors? Where do you live. Have you received a second opinion since the recurrence?

    My father is 79 and was initially, Stage III, T3, N1, MO but he had some complications and by the time we were contemplating surgery the cancer had spread to his liver. He is currently undergoing a personal clinical trial at the UPMC in Pittsburg with a combination of Irinotican and Erbitux. They are also runing a trial for Stage Iv patients at the UPMC if you are interested I can forward the information to you.

    Every person is different and every person has different experiences and stamina and goals. I know the doctors told my dad in August after the cancer had spread to his liver he had months to live and he wouldn't make it to Christmas. Thank God he is still with us and right now he seems to be tolerating the treatment, is enjoying himself and my mother is happy to have him by her side. They live in New Orleans, but travelled to Pittsburg to get this treatment. They are living in the "Family House" down the street from the cancer center and have really settled in. The family house is housing for cancer and surgery and transplant patients who are away for home during treatment, and recovery. Each room is a suite and the house has common areas, solarium, huge kitchen and lots of fellowship and support from the other folks staying there - the people there are so nice and my dad is enjoying the interaction with other folks in a relaxed setting away from the chemo suite.

    We have talked to my dad about when he may want to stop treatment and call in hospice - but we have agreed with him that if he can tolerate the treatment, he doesn't end up in the hospital every week and we see that the cancer becomes stable that we will support him in his efforts to fight. We all know that as a Stage IV patient he won't beat this beast, without a miracle, but he says he wants to try this last treatment and see how he does. So my mom and the family are supporting this effort. And we will enjoy the time we have with him. We had a really nice chat the other night and he mentioned that although he never wanted this cancer --- it has been a blessing in a strange sort of way because it has brought the family really closer together, and people (myself included) have put aside old grudges (no time for those when you are fighting for your life) and that he has had so much time with all of us and that we have made time for him - including nieces and nephews, grandkids, his brother and me and my brother.

    I know you said you live alone, but I hope you have a support system - don't hesitate to ask for support and help.

    I will keep you in my prayers and thoughts,

    Best,
    Cindy
  • cobolca
    cobolca Member Posts: 12
    #3
    Options
    unclaw2002 said:

    *************
    I am not a
    *************
    I am not a doctor and this is my personal opinion based on my experiences with my dad who was diagnosed with EC in December of 2009
    *******************************

    I am not sure about the lying down part after the Ivor Lewis, but I would speak to your doctors and inquire as to how many treatements they intend to give you. I was under the impression that the mid thirties is about the maximum number of radiation treatments someone can have. According to your post you have already had 30 treatments so it looks like you may be at the upper end. Where are you being treated and who are your doctors? Where do you live. Have you received a second opinion since the recurrence?

    My father is 79 and was initially, Stage III, T3, N1, MO but he had some complications and by the time we were contemplating surgery the cancer had spread to his liver. He is currently undergoing a personal clinical trial at the UPMC in Pittsburg with a combination of Irinotican and Erbitux. They are also runing a trial for Stage Iv patients at the UPMC if you are interested I can forward the information to you.

    Every person is different and every person has different experiences and stamina and goals. I know the doctors told my dad in August after the cancer had spread to his liver he had months to live and he wouldn't make it to Christmas. Thank God he is still with us and right now he seems to be tolerating the treatment, is enjoying himself and my mother is happy to have him by her side. They live in New Orleans, but travelled to Pittsburg to get this treatment. They are living in the "Family House" down the street from the cancer center and have really settled in. The family house is housing for cancer and surgery and transplant patients who are away for home during treatment, and recovery. Each room is a suite and the house has common areas, solarium, huge kitchen and lots of fellowship and support from the other folks staying there - the people there are so nice and my dad is enjoying the interaction with other folks in a relaxed setting away from the chemo suite.

    We have talked to my dad about when he may want to stop treatment and call in hospice - but we have agreed with him that if he can tolerate the treatment, he doesn't end up in the hospital every week and we see that the cancer becomes stable that we will support him in his efforts to fight. We all know that as a Stage IV patient he won't beat this beast, without a miracle, but he says he wants to try this last treatment and see how he does. So my mom and the family are supporting this effort. And we will enjoy the time we have with him. We had a really nice chat the other night and he mentioned that although he never wanted this cancer --- it has been a blessing in a strange sort of way because it has brought the family really closer together, and people (myself included) have put aside old grudges (no time for those when you are fighting for your life) and that he has had so much time with all of us and that we have made time for him - including nieces and nephews, grandkids, his brother and me and my brother.

    I know you said you live alone, but I hope you have a support system - don't hesitate to ask for support and help.

    I will keep you in my prayers and thoughts,

    Best,
    Cindy

    Laying flat
    Thank you for sharing. I'm in a small rural area of South West Illinois. My doctors would all be unknowns, but have done a great job so far. Surgeon was Dr. Hazelrigg who has written several articles on Esophageal surgery. My Oncologist is a Dr. Agamah who is from Ghana and flies back and forth to tend to the Medical Mission that he started there. He is a very articulate doctor and compassionate. The radiation doctor is a Doctor Mahmoud who is not from the U.S. either, and is new for me. He is highly recommended by all. Doctor Ahmad was my other radiation doctor. I will say that the other radiation worked. I was unable to either eat or drink liquids when I started radiation. Within a few weeks I was eating and was able to put on many pounds before surgery, which saved me. I'm down to 108 right now, from 176.

    I am interested in the trials, because if the radiation doesn't work, they will give up on me here. They actually have given me about 6 weeks, which is about the same as they gave me back in Oct. 09. My e-mail is yehuditz@gmail.com

    So far the cancer has only spread to the nodes, and other than fighting the constant diarrhea and fatigue I'm doing pretty well. I did spend most of last week in the hospital getting 2 pints of blood and daily IV fluids. I guess like most, I have up moments and down ones, but I'm just not ready to give up. I did start pain meds last week, but they worked so well, that right now I don't need them again. I guess this huge tumor in my neck got off whatever nerve it was sitting on.

    Anyhow, I appreciate your taking time to write and especially for the encouragement. In fact, I'm excited about the idea of a trial and another chance to beat the "Beastie".

    Yehudit

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