New to group

MAE66
MAE66 Member Posts: 66
edited March 2014 in Esophageal Cancer #1
This is my first post to this group. I have checked posting a couple of times since my husband was diagnosed with stage IV esophageal cancer in July and have found it helpful, thank you. Discussion boards are new to me, please forgive any novice mistakes.

He has compleated 5 weeks of radiation and 5 rounds of chemo. The first 3 rounds put him in the hospital. He had a dose reduction for round 4 and 5 and did well. Radiation was okay, no major problems. He will start the 6th round tomorrow, and hopefully it will be the last.

So far 2 PET scans and a CT scan show continued inprovement but it is hard to get a grasp on weather it is enough of a response. We have been able to stay focused on the positive, and we have many things to be grateful for. What is really tough right now is the fatigue and inability to focus. Even following a TV program is hard. I am familliar with the term "chemo brain" and it describes my husband. Right now he is fustrated/scared that the fatigue won't get better(we are only 2 weeks out of radiation) and he won't get his mind back and most of all will interfere with treatment.

Food has not been a problem, he has a stint and an appetite so he is getting nutrition, even puting on weight. He has also received blood transfusions to help with anemia.

Any ideas on how to overcome the fatigue would be greatly appreciated. Any other comments are welcome too.

Susan

Comments

  • kitten0385
    kitten0385 Member Posts: 248
    #2
    Fatigue
    Hi Susan,

    My name is Cathy. I am 24, and am currently battling a recurrence of esophageal cancer. During my first bought of cancer, I went through 5 weeks of radiation and was extremely fatigued as well. I fell asleep all the time. I hardly ever made it through my favorite tv shows. I found that this feeling lasted a few weeks after radiation, and then it improved a bit. By that time I was on my chemo regimen, which I believe also made me fatigued, but not nearly as bad as the radiation. Other than fatigue though, I didn't have hardly any side effects from the radiation....but, my first round of chemo (EOX), made me quite nauseous until they found the right combination of anti-nausea meds. Be very happy he has an appetite, that's one thing I did struggle with! I've also had several blood transfusions in the past couple of months due to anemia as well. If you wish to talk, feel free to message me any time. I wish you the best!!
  • Unknown
    Unknown
    #3
    This comment has been removed by the Moderator
  • aunti_m
    aunti_m Member Posts: 41
    #4
    Fatigue
    Hi Susan,
    Glad to meet you. My husband was dx with Stage iv EC in May of 2009. He did not recieve radiation, he has done 6 rounds of chemo and from that became very fatigued. He still continues to go to work, but the "chemo brain" is making it hard for him to concentrate. He usually wakes up later than usual, 7 or 8am and by 2pm he's wiped out and falls in and out of sleep the rest of the night. I notice the weekends are worse. If he doesn't force himself to get up and get moving, he will lay in bed all day and sleep. His doctor put him on Mirtazapine because he was becoming quite depressed. It seems to have helped him out of this funk the past week. It's been a roller coster ride while trying to figure out what meds make what side effects better. He's still tired a lot but not quite as bad. I've heard sleeping too much can make fatigue worse so I've been trying to plan activities for the family to keep him moving without overdoing it.
    It's great to stay focused on the positive. Continued improvment is good, sounds like the chemo and rad are killing those cancer cells. Stay strong and good luck to you.
  • mumphy
    mumphy Member Posts: 440
    #5
    aunti_m said:

    Fatigue
    Hi Susan,
    Glad to meet you. My husband was dx with Stage iv EC in May of 2009. He did not recieve radiation, he has done 6 rounds of chemo and from that became very fatigued. He still continues to go to work, but the "chemo brain" is making it hard for him to concentrate. He usually wakes up later than usual, 7 or 8am and by 2pm he's wiped out and falls in and out of sleep the rest of the night. I notice the weekends are worse. If he doesn't force himself to get up and get moving, he will lay in bed all day and sleep. His doctor put him on Mirtazapine because he was becoming quite depressed. It seems to have helped him out of this funk the past week. It's been a roller coster ride while trying to figure out what meds make what side effects better. He's still tired a lot but not quite as bad. I've heard sleeping too much can make fatigue worse so I've been trying to plan activities for the family to keep him moving without overdoing it.
    It's great to stay focused on the positive. Continued improvment is good, sounds like the chemo and rad are killing those cancer cells. Stay strong and good luck to you.

    Nice to meet you!
    Hi,
    My husband was diagnosed in May with Stage IV, He had hard time with his chemo and was in the hospital 3 times during his treatments. He was very fatigued and also had difficulty
    with concentration. He did not have any radiation. He just kept himself busy and when he was tired he rested. You have to remember that his body was not ment to have the poison for lack of a better word so it will take some time for his body to bounce back.

    Chemo effects everyone differently so I have been told many, many, times by his Dr's.
    The last time he was in the hospital they did a chest x-ray and noticed that his tumor
    looked like it was shrinking. They held his last chemo treatments and did a PET scan
    and it did so we had a meeting with the surgeon and he said O.K. lets do surgery. We are now 2 weeks post surgery and he is doing fine the tumor is gone along with most of the lymph nodes. He will still have to have follow up radiation and maybe a round or two or radiation just to make sure.

    Any way my point is if this was his HOPEFULLY his last round of chemo you may be able to
    find out if it has done the job it was supposed to do if it has then you husband will start
    to feel alot better in a few weeks.

    I don't know if they think he is a candidate for surgery now, but if he wasn't he may be now I know of some people that were told that they would not be able to have surgery and
    right now as I am posting this are going home from the hospital and had surgery.

    Never give up HOPE!

    I hope this helps.
    Kath
  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    #6
    fatigue
    Hi Susan,
    We are in the same "club." My husband was dx in March with stage iv EC. Mets to lymph nodes, lung, liver, and peritoneal cavity. Chemo was his only option. Went through 4 rounds in the hospital.....in remission after the 2nd round. Now he is on Xeloda (oral chemo) to try to keep it in remission. He also started Herceptin treatment last week. When he takes the Xeloda, he takes it for 2 weeks and is off 1 week. The last few weeks he is exhausted.....just as bad as when he was having the chemo in the hospital. We go to a support group on Wed and he really had to force himself to go today. I intend to ask the dr about the Adderall (thanks Sherri for the tip.) For the longest time, my husband could not read, watch TV....never mind try to watch a movie. That has gotten a bit better. One good thing was he has never had a problem eating...other than no appetite and mouth sores after chemo.
    Sorry I have no magic solution.....I wish you the best. Try to stay strong and I will keep you and your husband in my prayers.
    Jane
  • Unknown
    Unknown
    #7
    JaneE2366 said:

    fatigue
    Hi Susan,
    We are in the same "club." My husband was dx in March with stage iv EC. Mets to lymph nodes, lung, liver, and peritoneal cavity. Chemo was his only option. Went through 4 rounds in the hospital.....in remission after the 2nd round. Now he is on Xeloda (oral chemo) to try to keep it in remission. He also started Herceptin treatment last week. When he takes the Xeloda, he takes it for 2 weeks and is off 1 week. The last few weeks he is exhausted.....just as bad as when he was having the chemo in the hospital. We go to a support group on Wed and he really had to force himself to go today. I intend to ask the dr about the Adderall (thanks Sherri for the tip.) For the longest time, my husband could not read, watch TV....never mind try to watch a movie. That has gotten a bit better. One good thing was he has never had a problem eating...other than no appetite and mouth sores after chemo.
    Sorry I have no magic solution.....I wish you the best. Try to stay strong and I will keep you and your husband in my prayers.
    Jane

    This comment has been removed by the Moderator
  • K_ann1015
    K_ann1015 Member Posts: 500
    #8
    unknown said:

    This comment has been removed by the Moderator

    What about Adderall & Ritalin suppressing?
    What about these suppressing appetite (side effect of these meds) in those whose appetite is already suppressed. I would love to share this info with my mom (for my dad)but he was always a small man--now he's lost weight and doesn't have an appetite post chemo-rad RX. He could really use something like this, but I wouldn't go forward talking to the Dr---knowing that my dad NEEDS to gain weight... Has anyone heard of other Rx's for cancer fatigue and/or "chemo brain" type effects?
    thanks
    Kim
  • Unknown
    Unknown
    #9
    K_ann1015 said:

    What about Adderall & Ritalin suppressing?
    What about these suppressing appetite (side effect of these meds) in those whose appetite is already suppressed. I would love to share this info with my mom (for my dad)but he was always a small man--now he's lost weight and doesn't have an appetite post chemo-rad RX. He could really use something like this, but I wouldn't go forward talking to the Dr---knowing that my dad NEEDS to gain weight... Has anyone heard of other Rx's for cancer fatigue and/or "chemo brain" type effects?
    thanks
    Kim

    This comment has been removed by the Moderator
  • MAE66
    MAE66 Member Posts: 66
    #10
    unknown said:

    This comment has been removed by the Moderator

    Adderal
    Thanks for the suggestions of Adderall. Paul started taking it yesterday and wow, what a difference. He still has the physical fatigue, but his mind is back. He was able to watch TV and answer e mail at the same time. I also noticed a change in his speach, clearer and there is not as much searching for words. He is on day 4 of his 5FU pump and doing better than expected. In the beginning of treatment everyone told him to eat whatever sounded good and as much of it he could get down, well one of the nurses saw him and commented on his weight gain, so thankfully appetite or weight is not a concern right now.
  • Unknown
    Unknown
    #11
    MAE66 said:

    Adderal
    Thanks for the suggestions of Adderall. Paul started taking it yesterday and wow, what a difference. He still has the physical fatigue, but his mind is back. He was able to watch TV and answer e mail at the same time. I also noticed a change in his speach, clearer and there is not as much searching for words. He is on day 4 of his 5FU pump and doing better than expected. In the beginning of treatment everyone told him to eat whatever sounded good and as much of it he could get down, well one of the nurses saw him and commented on his weight gain, so thankfully appetite or weight is not a concern right now.

    This comment has been removed by the Moderator

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