Recovering after chemo and Radiation

GGHT
GGHT Member Posts: 4
in Esophageal Cancer #1

Hello,

I am new on this board. My dad was DX in July '13  with stage IIB EC. It is apparently not opperable due to its location near the vocal cords. He has just completed 2 rounds of chemo (Cisplatin and 5-FU) and about 5 weeks of radiation. He has been completely flat out in the hospital since about a week after his last chemo treatment. He does have a feeding tube which he started early as the radiation ulcerated his throat early on an he had major Thrush so he couldn't eat at all. His stomache is a complete mess anyway. I guess he now has ulcerations from the chemo so his stomache isn't even digesting the feeding tube meals. His stomache gets so distented and makes super loud sounds. He has pretty much been on morphine, although they started to take him off a few days ago. As of today supposedly he was off of it. He is so confused and doesn't even know where he is etc...is this normal to be this much of a mess after this treatment? They never mentioned he would be so sick he would be in the hospital for weeks. They mentioned he will be weak , not be able to eat etc...But being at home was what they figured. His blood work has been really good over all. The good news is they did an endoscopy the other night to check on the stomach stuff. They said his tumor was gone :-) of course I know that doesn't mean the cancer is gone...but atleast maybe it has set it back some. (still praying for NED) I know my dad and he will never put himself through this again. This was a one shot deal. It is so sad...my dad has never missed a day of work that I can remember, nor has he ever been quiet. It has  been so horrible to see him sleep all the time and not be able to say anything coherent. His voice is coming back a bit now, but he is not making any sense really. Have others experienced this from the treatment. If so....how long will it take for him to get back to himself. Will he ever be himself again? We are also doing some alternative therapies and will get super aggressive with them as soon as he is able. We were juicing, alkaline diet, ozone water...

 

regarding diagnosis...crazy! He was feeling weakness in his body, naseau "dizziness" type symptoms. This was in early May. He went to ER and spend about 5 days in the hospital and they couldn't really find anything wrong with him. Did EVERY test but a endoscope. Looked for stroke, heart issues, lung, diabetes etc...his heart rate declined once during the night. One doctor said he needed a pacemaker. Had him on the board for it, another doctor said no he didn't need it. Needless to say he didnt' get it (thankfully) His diagnosis after 5 days in the hospital DEPRESSION/ANXIETY. Yep...suddenly my dad at 72 was having panic attacks. I kept pressing him that it isnt' adding up. The meds they kept putting him on made him a mess, his voice started to get really weak (that was just anxiety though). My dad finally said he was going crazy...he could not live like this and felt somewhat suicidal (love those antidepressants). Checked himself into a pych ward and the Dr. on staff immediately said he was not in the right place. Called a GI doc up from another floor (due to the weak voice) and had endoscope the next day. God only knows how long this could have went on....

 

Thanks for listening!

Comments

  • paul61
    paul61 Member Posts: 1,392 Member
    #2
    I am so sorry to hear of your Dad's suffering

    I am very sorry to hear of the severe side effects your Dad has experienced from his treatments. Ulceration in the throat and digestive system as a result of radiation and chemotherapyis common but the side effects are not typically as severe as your Dad has experienced. Most of us who have been through chemotherapy and surgery are not anxious to repeat the experience, but when faced with death as an alternative one never knows what decision we would make until we get there.

    If I can offer any positive thoughts, it would be that most side effects of treatment are temporary and things improve with time. The important thing is to kill the cancer.

    You did not mention if your Dad was a candidate for surgery. I hope his recovery will proceed quickly. It sounds like the hospital if definitely the right place for him now.

    Many of us have also had a long and confused journey to the diagnosis of esophageal cancer, since it is a relatively uncommon cancer many medical professionals just don’t pick up on the symptoms until the cancer is in an advanced stage.

    I hope your Dad will be feeling better soon.

    Best Regards,

    Paul Adams

    Grand Blanc, Michigan
    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
    Cisplatin, Epirubicin, 5 FU - Three Year Survivor

     

  • GGHT
    GGHT Member Posts: 4
    #3
    paul61 said:

    I am so sorry to hear of your Dad's suffering

    I am very sorry to hear of the severe side effects your Dad has experienced from his treatments. Ulceration in the throat and digestive system as a result of radiation and chemotherapyis common but the side effects are not typically as severe as your Dad has experienced. Most of us who have been through chemotherapy and surgery are not anxious to repeat the experience, but when faced with death as an alternative one never knows what decision we would make until we get there.

    If I can offer any positive thoughts, it would be that most side effects of treatment are temporary and things improve with time. The important thing is to kill the cancer.

    You did not mention if your Dad was a candidate for surgery. I hope his recovery will proceed quickly. It sounds like the hospital if definitely the right place for him now.

    Many of us have also had a long and confused journey to the diagnosis of esophageal cancer, since it is a relatively uncommon cancer many medical professionals just don’t pick up on the symptoms until the cancer is in an advanced stage.

    I hope your Dad will be feeling better soon.

    Best Regards,

    Paul Adams

    Grand Blanc, Michigan
    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
    Cisplatin, Epirubicin, 5 FU - Three Year Survivor

     

    He is not a canidate for

    He is not a canidate for surgery. It is too close to his vocal cords. They are going to look at it again though after this treatment. It will depend on if/where any cancer cells are still located. Unless a miracle happens I can't see my dad signing up for that either. He has had a pretty rough attitude toward the whole thing which of course does not help. When he recovers enough I will share this with him. He just doesn't get that he could survive this! They did a MRI tonight to see if something else is going on causing the confusion and changes in his mental state. I am praying it will be clear...Thanks for your thoughts! I enjoy reading your encouragement in other post as well.

     

    Be Well,

    Gretchen

     

  • JKGulliver
    JKGulliver Member Posts: 93
    #4
    Experienced something similar

    My husband was dx in March '13 with stage IIB EC.  He had six weeks of Folfox (the chemo cocktail which includes 5-FU), then six weeks of chemo/radiation, with Folfox and extra 5-FU.  During the second round, when chemo and radiation were done daily, the confusion you describe in your father set in with my husband.  He could not remember words, would forget what he wanted to say and was sometimes lost for words, in his head.  At the end of the chemo/radiation, he had five weeks before his surgery.  During that time, the confusion went away.  It was not gradual.  After two weeks without treatment, his confusion suddenly lifted.  I remember the exact day that marked a turning point.  But it has not gone completely away.  He had surgery in September.  He will get confused on occasion, or search in vain for words sometimes, when he is tired.  Naps will restore him.  

    Perhaps robotic assisted surgery would be a possibility for your dad.  This is what my husband had and it was amazing.  Although his EC was at the other end - near the stomach - it might be worthwhile investigating.  Robot assisted surgery can be very precise, making much smaller, cuts, with very little blood loss and a remarkably low infection rate.  

    One other thing - my husband avoided mouth sores by rinsing with a solution given to us by our oncologist.  It was very simple.  In one cup of warm water, mix a half teaspoon of salt (table) and a half teaspoon of baking soda.  Stir well.  Rinse thoroughly every day, even if sore go away.

    All the best to you and your family.  

  • GGHT
    GGHT Member Posts: 4
    #5
    update

    I just wanted to share that my dad is slowly getting stronger. He is still in the hospital but they are starting him on PT now to get him up and stronger again. He is pretty depressed but still in a lot of pain. Which I think would be normal. He feels like he will never be able to have his life again. He thinks he will never walk, eat, or talk (strongly) again.  The good news is the biopsy came back with no cancer cells at tumor site. And the tumor is gone as I had mentioned before. We need to wait on another scan they will do in a few weeks to make sure it hasn't traveled. I am praying it is clean. Since he had no nodes involved prior I am hoping it stayed that way. We are trying to convince him of how fortunate it seems things are at this time and he needs to get strong again to live again. I am sure easier said then done.

     

    Gretchen

  • trentster
    trentster Member Posts: 18
    #6
    JKGulliver said:

    Experienced something similar

    My husband was dx in March '13 with stage IIB EC.  He had six weeks of Folfox (the chemo cocktail which includes 5-FU), then six weeks of chemo/radiation, with Folfox and extra 5-FU.  During the second round, when chemo and radiation were done daily, the confusion you describe in your father set in with my husband.  He could not remember words, would forget what he wanted to say and was sometimes lost for words, in his head.  At the end of the chemo/radiation, he had five weeks before his surgery.  During that time, the confusion went away.  It was not gradual.  After two weeks without treatment, his confusion suddenly lifted.  I remember the exact day that marked a turning point.  But it has not gone completely away.  He had surgery in September.  He will get confused on occasion, or search in vain for words sometimes, when he is tired.  Naps will restore him.  

    Perhaps robotic assisted surgery would be a possibility for your dad.  This is what my husband had and it was amazing.  Although his EC was at the other end - near the stomach - it might be worthwhile investigating.  Robot assisted surgery can be very precise, making much smaller, cuts, with very little blood loss and a remarkably low infection rate.  

    One other thing - my husband avoided mouth sores by rinsing with a solution given to us by our oncologist.  It was very simple.  In one cup of warm water, mix a half teaspoon of salt (table) and a half teaspoon of baking soda.  Stir well.  Rinse thoroughly every day, even if sore go away.

    All the best to you and your family.  

    Experience similar

    I am so glad I found this site.  It sounds as if my husband is having a similar treatment as yours. We have had our first treatment yesterday.  We are in a clinical trial at Sloan Kettering. His cancer is near the stomach as well. I would like to hear more about your journey. It sounds as if we are exactly going through what you have been through. It gives me such hope. Only trying to stay positve. All the best.

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