Low energy, difficulty concentrating, "chemo" brain

kodvm1
kodvm1 Member Posts: 4
in Esophageal Cancer #1
My husband, Gale, 46 years young, was diagnosed with esophageal adenocarcinoma IVa in Jan '09. He had 5-FU/cisplatin/radiation treatment, followed by esophagectomy in 5/09, and was given adjuvant chemo post surgery with gemcitabine/taxol. By Feb '10, he was having problems again, and he had a j-tube placed and more radiation. This was followed by cetuximab/irinotecan thru the summer. He improved enough that the j-tube was pulled, and he was maintaining weight and good quality of life Sept thru Jan this year. When he strictured down, the adenocarcinoma was found during dilation. So, he has gone back on the cetuximab/irinotecan again. He is having a LOT more exhaustion with the chemo this time. He gets tired, confused, and cranky, which didn't seem to happen so much with the regimen last year. Has anyone had ritalin or other medication prescribed for this? His oncologist suggested this, and I just wanted to know what your experiences were. Did this help? Is there anything better? Just live with it? Thanks...Katie-

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  • Unknown
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    #2
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  • cher76
    cher76 Member Posts: 292
    #4
    My husband is also receiving
    My husband is also receiving Cetuximab and Irinotecan at this time. So far he has had 2 treatments and is also experiencing extreme exhaustion. At this time he is still having trouble eating solid food so that makes it difficult to keep his energy level up. He has received 2 units of blood as well as iron to help with the low blood counts. As he was also diagnosed at Stage IV I would like to talk to you about your husband's diagnosis and treatment. There are so very few here at this stage.
  • kodvm1
    kodvm1 Member Posts: 4
    #5
    unknown said:

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    Thanks!
    I've written a reply three times and it isn't getting posted. I don't know what's going wrong.

    Gale was initially thought to have localized disease, but it was found (during surgery) to involve about half the nodes removed including the celiac node and nodes near the pancreas. He had an abdominal approach thru the diaphragmatic hiatus and an additional incision in the neck. The distal half of the esophagus and proximal one third of the stomach were resected. The surgical margins were dirty. More of a salvage procedure than a curative procedure. He did the adjuvant chemo and thrived in the face of poor prognosis. He had recurrence at the surgical anastomosis in 3/10, and it responded nicely to treatment. He actually looked and felt healthy 9/10 thru 12/10. The second recurrence was diagnosed last month, and he is back in treatment again.

    The ritalin was suggested because Gale feels hazy, having a hard time concentrating, short tempered, and exhausted. He had mild symptoms with the cetuximab/irinotecan before, but he is having trouble even playing with his daughter now. I just wanted more info, and you have really helped me with the legwork! Thank you!! :)

    Katie-
  • kodvm1
    kodvm1 Member Posts: 4
    #6
    unknown said:

    This comment has been removed by the Moderator

    Thanks!!
    Thank you for the info. We're not looking for a miracle, but it would be so nice if he was semi-functional. He hasn't been able to work for two years, but he would like to be able to play with his daughter and enjoy his days.
    Katie-
  • kodvm1
    kodvm1 Member Posts: 4
    #7
    cher76 said:

    My husband is also receiving
    My husband is also receiving Cetuximab and Irinotecan at this time. So far he has had 2 treatments and is also experiencing extreme exhaustion. At this time he is still having trouble eating solid food so that makes it difficult to keep his energy level up. He has received 2 units of blood as well as iron to help with the low blood counts. As he was also diagnosed at Stage IV I would like to talk to you about your husband's diagnosis and treatment. There are so very few here at this stage.

    Hi! :)
    This is Gale's second go around with this protocol. It is harsh. He gets cetuximab once weekly, and he gets the irinotecan every three weeks. He is scheduled for 4 cycles (12 weeks). Then he'll got to the irinotecan every third week until...forever? We have difficulty knowing the extent of his cancer. His adenocarcinoma is not FDG avid. This means the cancer cells do not take up the sugar tracer that the PET scan measures. So, PET scans do not show the cancer. We know the adenocarcinoma is present in the remaining esophagus from lesions biopsied during endoscopy. We also know there is a "suspicious" mass adjacent to the diaphragm on the abdominal side. This is the second recurrence since esophagectomy, but Gale is a stubborn man. His goal is to see his daughter (4yr-old) go to school. I'm hoping he means he'll watch her go off to college!! :)
    Katie-
  • cher76
    cher76 Member Posts: 292
    #8
    kodvm1 said:

    Hi! :)
    This is Gale's second go around with this protocol. It is harsh. He gets cetuximab once weekly, and he gets the irinotecan every three weeks. He is scheduled for 4 cycles (12 weeks). Then he'll got to the irinotecan every third week until...forever? We have difficulty knowing the extent of his cancer. His adenocarcinoma is not FDG avid. This means the cancer cells do not take up the sugar tracer that the PET scan measures. So, PET scans do not show the cancer. We know the adenocarcinoma is present in the remaining esophagus from lesions biopsied during endoscopy. We also know there is a "suspicious" mass adjacent to the diaphragm on the abdominal side. This is the second recurrence since esophagectomy, but Gale is a stubborn man. His goal is to see his daughter (4yr-old) go to school. I'm hoping he means he'll watch her go off to college!! :)
    Katie-

    Magnesium levels
    Katie,
    I was reading through some literature that we were given at MDAnderson about the Cetuximab and it mentioned one of the side effects being low magnesium levels. It states that this may cause depression, agitation, confusion, disorientation, delirium, and hallucinations to occur. Perhaps your doctor can check his magnesium levels to see if they are low. We are currently dealing with the diarrhea that goes along with the Irinotecan. Not being able to eat solid foods (or very little) really makes it difficult. The ensure he drinks seems to go right through him. Today I am going to try to get him to eat some banana and toast. Any advice on this you might have would be much appreciated.
    Cheryl

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