Cancer gone and still losing weight

Paulssister
Paulssister Member Posts: 30
edited March 2014 in Head and Neck Cancer #1
My brother, Paul was told the cancer on the back of his tongue is gone...that's the good news. He finished his radiation treatments about 3 months ago but still has a couple of small lymph nodes on his neck which in a couple of weeks he will have a Pet scan to see if they are free of cancer. I have two questions...the first, he is extremely tired all the time and depressed even though he takes antidepressants...is this to be expected? And second, he had a food tube but had it removed against the doctor's orders. The Boost they wanted him to take gave him indigestion and caused diarrhea. And, although he eats well he continues to lose weight rapidly. Is this normal and will he start gaining in the future?

Happy Holidays to all of you and thank you for your support.

Kind regards,

Susan

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,304 Member
    Sounds Normal
    Hi Susan,

    It sounds pretty normal considering the time frame...especially removing the PEG against the MD's wishes.

    The fatigue and other symptoms can last for a year or more...just curious you didn't mention, did he receive any chemo at all?

    Also, when you say he eats well, do you keep any idea of calorie intake for his size? I didn't have a PEG, and though I started eating again afew weeks after teatment (Ensure mainly for seven weeks). I really didn't eat that much because I couldn't really taste much and it still wasn't that comfortable eating. He may just not be taking in enough calories to not lose weight.

    I have regained nearly all of my taste and salivary function back...actually to the point, I need to start losing weight. I'm gaining back more than I wanted. This is never a good time of year to try and lose weight.

    Just a few thoughts to consider.....if in doubt, communicate with the doctors.

    Best and Happy Holidays,
    John
  • DrMary
    DrMary Member Posts: 529 Member
    Count Those Calories
    I second the suggestion to keep track of calories, at least for a while (like, a week). Doug was positive he was stuffing himself when he was only putting in about 1500 calories per day. He needs at least 2300 per day right now to maintain his weight gain goals of 1-2 lbs per week. Even so, it took 3 weeks before he even gained an ounce - we were warned, but it's still frustrating.

    I use about.com's calorie count, but there are a lot of web-based ones out there. Most help you decide a calorie goal and let you know how you are doing in terms of vitamins and minerals in your food. Ours gives us a warning every day, as Doug's diet is pretty high in dairy and egg fat right now. Until his nerves get their protective layer of fat back on them, I'm ignoring that warning.

    About the Boost - it is possible he has developed some temporary food allergies, as this can happen after severe gastric disturbances. Encourage him to try some of the other supplements (although Boost plus has the most calories per bottle). There is also a high-calorie supplement called BeneCalorie (also made by Nestle). It's not cheap, but it's something like 300 calories per quarter cup and high in protein. You can do straight shots of it or mix it with applesauce. Many folks say it was the only thing that helped when they had kids who could not gain weight.

    If he can drink milk, try making smoothies and adding calories with one of the supplements body-builders use (we use CarboGain - it's pure maltodextrin). Our recipe is 1 cup of milk, 1 scoop of whey isolate, 1/2 cup of carbogain, a spoon of glutamine, and 2 spoons of vanilla syrup (the kind coffee shops use). That's about 500 calories and 2 a day can really supplement "normal" eating.
  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Susan
    I agree with John and DrMary you need to get some idea of his calorie intake. Also for him to be tired all the time is normal for the treatment he just went through. You might want to get his thyroid checked and get him on some Iron Supplement as well just check with his doc first.

    All the best to you both
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Hondo said:

    Hi Susan
    I agree with John and DrMary you need to get some idea of his calorie intake. Also for him to be tired all the time is normal for the treatment he just went through. You might want to get his thyroid checked and get him on some Iron Supplement as well just check with his doc first.

    All the best to you both

    Counting calories is a must.
    I agree. This is a must. I keep track of my daily intake because if I don't I will end up losing weight. I used to write everything down, but now I know most everything I eat. I still have problems swallowing and with my mouth and tongue burning. My diet is also still high in dairy and eggs. I have managed to go from 87 lbs to 101 lbs in 18 or so months. If I don't keep forcing myself to eat, and get in 2400 cals a day I lose weight. It's not easy. I often joke and say all I feel like I'm doing is eating and brushing my teeth. :(

    I don't eat or drink anything unless it has calories in it. My fluids are milk, chai tea brewed with whole milk, decaf coffee and coconut water.

    I also know people that have used the Benecal with good results.

    I eat a lot of veggies, beans & legumes and grains (like barley, couscous, pastina, bulgar, oatmeal). (not really any meat because I can't swallow it.) To boost the calorie count of my veggies, I use good olive oils, truffle oil, almond butter, avocado, coconut milk, and marscarpone.

    Best wishes,

    Sweet
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    chiming in
    Thought maybe I would respond to Susan since I posted this same question about my husband a few months ago.

    Susan, my husband, Jim, had advanced base of tongue and hypopharyngeal cancer diagnosed in May. He had 35 radiation treatments and three chemos of Cisplatin. Jim's starting weight was 165 and he lost down to 121. Although Jim had a PEG, we never had to use it because Jim never lost his ability to eat. Consuming around 3500 calories a day, every day, was not able to stave off the weight loss: it seems to be a result of the treatment process.

    This morning,four months post-treatment (ended late August) Jim tips the scales at 137 and has been there for several days now. Praise the Lord.

    Jim thinks these things are important:

    1) Listen to your cancer team's advise. They are pros and have seen it all.
    2) Eat, eat, eat. Consume all the things you never could eat before because of calories or concern about nutritional value. Make healthy choices but this is a good time to indulge. Enjoy milkshakes and tolerate them well? Have them a couple of times a day. Remember to consider all your body's systems when making choices: to counter the effects painkillers can have on the rest of your body (slowing down digestion and elimination), Jim's last food for the day is a big bowl of oatmeal, loaded with butter and sugar and cinnamon. Eat even if doesn't appeal to you right now, or even if not hungry: remember, this is part of a process and the end result is your goal. You won't get stronger or feel better if you don't EAT.
    3) Get some fresh air every day. When possible weather-wise, even when at his weakest, Jim took a short walk every day around the block and as he has gained strength and weather permits, he takes several short walks every day. REMEMBER: you don't have to run a marathon. Just get out and do it!
    4) For the depression and feelings of anxiety and simply to get your mind somewhere else, pick up a hobby. Jim has started oil painting again but anything that lets you move away from the cancer mentally and keeps your hands occupied will do.
    5) Make plans. Your life may be altered but it is not over. Look to your future: the next doctor's appointment is not a goal, it is a reality. Plan something pleasurable and do it.

    This is a process: Jim is, by profession, a process engineer. As he was able to see this is a process with an end result, he has been able to keep moving forward. Jim has been constantly striving to make the end result as good as possible. It just takes TIME and there is no real "standard" by which he can measure himself because everyone responds differently to the treatment.

    Remember, you are your own guinea pig. If it feels right, and your team agrees, try it.

    Remember people are always on this site, Susan, to answer questions. It is a great place with compassionate people with lots of experience.

    Hugs.
  • Paulssister
    Paulssister Member Posts: 30
    Skiffin16 said:

    Sounds Normal
    Hi Susan,

    It sounds pretty normal considering the time frame...especially removing the PEG against the MD's wishes.

    The fatigue and other symptoms can last for a year or more...just curious you didn't mention, did he receive any chemo at all?

    Also, when you say he eats well, do you keep any idea of calorie intake for his size? I didn't have a PEG, and though I started eating again afew weeks after teatment (Ensure mainly for seven weeks). I really didn't eat that much because I couldn't really taste much and it still wasn't that comfortable eating. He may just not be taking in enough calories to not lose weight.

    I have regained nearly all of my taste and salivary function back...actually to the point, I need to start losing weight. I'm gaining back more than I wanted. This is never a good time of year to try and lose weight.

    Just a few thoughts to consider.....if in doubt, communicate with the doctors.

    Best and Happy Holidays,
    John

    Sounds Normal
    John...

    Thank you so much for taking the time to reply to my questions. You have eased my mind and words are simply not enough to let you know how much I appreciate your answers.

    Paul did not opt for the chemo...he had cancer in his late high school years and did chemo then...no one could talk him into it this time.

    The information you have so kindly shared will be forwarded to him as I know it will put his mind at ease as well.

    Again, many thanks and God bless.

    Kindest regards,

    Susan
  • ekdennie
    ekdennie Member Posts: 236 Member
    depression
    it is pretty common to still be depressed while on antidepressants...I would let the doctor know, they may need to adjust the medication, or it hasn't had enough time to work (depends on the medication). I am eating as much as I can , but my weight is still going down. I am doing too much activities with not enough calories. my doctor had me use a product called scanishake...you mix it with milk and it packs a lot of calories in just a small amount of fluid, more than boost plus. I also force myself to drink a glass of milk with each meal, I hate milk, but it is giving me calories.
    wishing you and him luck!
  • DrMary
    DrMary Member Posts: 529 Member
    Surprise - exercise!
    I want to second the comments about activity and depression. A small amount of exercise, such as a daily walk, some swimming or yoga/taekwon do, etc., will help both with depression and appetite. Most folks think of exercise as a way to lose weight, but you will end up eating more than you burn, unless you really push it.
  • JUDYV5
    JUDYV5 Member Posts: 392
    DrMary said:

    Surprise - exercise!
    I want to second the comments about activity and depression. A small amount of exercise, such as a daily walk, some swimming or yoga/taekwon do, etc., will help both with depression and appetite. Most folks think of exercise as a way to lose weight, but you will end up eating more than you burn, unless you really push it.

    Everyone here has such great ideas
    I am 6 months post treatment. I took the body building powder and I ride a stationary bike 2 slow miles every morning. I only lost 20 pounds during treatment (I was thin to begin with) and have gained a little more then 10 back. I really didn't start to gain until I began riding. It helps with the fatigue also.
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    Spot On
    I think Noelle's Mom's advice along with Doc Mary's hit the nail right on the proverbial head. I couldn't have put it better myself. Cheers

    Jimbo
  • Paulssister
    Paulssister Member Posts: 30
    DrMary said:

    Count Those Calories
    I second the suggestion to keep track of calories, at least for a while (like, a week). Doug was positive he was stuffing himself when he was only putting in about 1500 calories per day. He needs at least 2300 per day right now to maintain his weight gain goals of 1-2 lbs per week. Even so, it took 3 weeks before he even gained an ounce - we were warned, but it's still frustrating.

    I use about.com's calorie count, but there are a lot of web-based ones out there. Most help you decide a calorie goal and let you know how you are doing in terms of vitamins and minerals in your food. Ours gives us a warning every day, as Doug's diet is pretty high in dairy and egg fat right now. Until his nerves get their protective layer of fat back on them, I'm ignoring that warning.

    About the Boost - it is possible he has developed some temporary food allergies, as this can happen after severe gastric disturbances. Encourage him to try some of the other supplements (although Boost plus has the most calories per bottle). There is also a high-calorie supplement called BeneCalorie (also made by Nestle). It's not cheap, but it's something like 300 calories per quarter cup and high in protein. You can do straight shots of it or mix it with applesauce. Many folks say it was the only thing that helped when they had kids who could not gain weight.

    If he can drink milk, try making smoothies and adding calories with one of the supplements body-builders use (we use CarboGain - it's pure maltodextrin). Our recipe is 1 cup of milk, 1 scoop of whey isolate, 1/2 cup of carbogain, a spoon of glutamine, and 2 spoons of vanilla syrup (the kind coffee shops use). That's about 500 calories and 2 a day can really supplement "normal" eating.

    Losing weight - Gaining weight
    Dr. Mary...

    Sorry for the delayed response but I was out of town for a few days and didn't have access to a computer. I did, however, prior to leaving, emailed your response to my questions to my brother, Paul.

    I do thank you from the bottom of my heart for taking time to respond and for your detailed information. I would never have thought of counting calories but now that you have mentioned it...it makes all the sense in the world.

    The support I have received from those of you on this web site has been invaluable and, once again, I feel much less stressed and better equipped to deal with the situation.

    Again, many thanks and God bless.

    Kind regards,

    Susan
  • Paulssister
    Paulssister Member Posts: 30
    Hondo said:

    Hi Susan
    I agree with John and DrMary you need to get some idea of his calorie intake. Also for him to be tired all the time is normal for the treatment he just went through. You might want to get his thyroid checked and get him on some Iron Supplement as well just check with his doc first.

    All the best to you both

    Paul had cancer
    Hondo...

    Such good suggestions! I will let my brother know...thank you for writing...I do so appreciate it.

    Kind regards,

    Susan
  • Paulssister
    Paulssister Member Posts: 30

    Counting calories is a must.
    I agree. This is a must. I keep track of my daily intake because if I don't I will end up losing weight. I used to write everything down, but now I know most everything I eat. I still have problems swallowing and with my mouth and tongue burning. My diet is also still high in dairy and eggs. I have managed to go from 87 lbs to 101 lbs in 18 or so months. If I don't keep forcing myself to eat, and get in 2400 cals a day I lose weight. It's not easy. I often joke and say all I feel like I'm doing is eating and brushing my teeth. :(

    I don't eat or drink anything unless it has calories in it. My fluids are milk, chai tea brewed with whole milk, decaf coffee and coconut water.

    I also know people that have used the Benecal with good results.

    I eat a lot of veggies, beans & legumes and grains (like barley, couscous, pastina, bulgar, oatmeal). (not really any meat because I can't swallow it.) To boost the calorie count of my veggies, I use good olive oils, truffle oil, almond butter, avocado, coconut milk, and marscarpone.

    Best wishes,

    Sweet

    Counting calories
    Sweet...

    You are amazing! Congratulations for your weight gain...it is impressive! Also, thank you so much for sharing your experiences...you have so many good ideas on how to increase one's calorie intake and I did forward your email to my brother so that he can see it doesn't happen overnight and not to give up.

    Again, thank you so much. It means a lot to both my brother and myself to hear from people like you who have so much to give others.

    Kind regards,

    Susan
  • Paulssister
    Paulssister Member Posts: 30
    JUDYV5 said:

    Everyone here has such great ideas
    I am 6 months post treatment. I took the body building powder and I ride a stationary bike 2 slow miles every morning. I only lost 20 pounds during treatment (I was thin to begin with) and have gained a little more then 10 back. I really didn't start to gain until I began riding. It helps with the fatigue also.

    Gaining weight
    Judy...

    I agree with you...everyone here has good ideas including you. I thank you so much for sharing. I have forwarded your information to my brother Paul and from him and me...we do so appreciate you taking the time to write. It is always good to gain information from one that has been there.

    Do take care. God bless.

    Kind regards,

    Susan
  • Paulssister
    Paulssister Member Posts: 30
    Jimbo55 said:

    Spot On
    I think Noelle's Mom's advice along with Doc Mary's hit the nail right on the proverbial head. I couldn't have put it better myself. Cheers

    Jimbo

    Cancer Gone & Still Losing Weight
    Jimbo...

    Thank you for your support and kind words. My brother, Paul and myself do truly appreciate folks like you on this wonderful web site.

    Do take care and God bless.

    Kind regards,

    Susan
  • sweetblood22
    sweetblood22 Member Posts: 3,228

    Counting calories
    Sweet...

    You are amazing! Congratulations for your weight gain...it is impressive! Also, thank you so much for sharing your experiences...you have so many good ideas on how to increase one's calorie intake and I did forward your email to my brother so that he can see it doesn't happen overnight and not to give up.

    Again, thank you so much. It means a lot to both my brother and myself to hear from people like you who have so much to give others.

    Kind regards,

    Susan

    Your welcome Susan.
    I am so glad your brother has you in his corner. :)
  • Paulssister
    Paulssister Member Posts: 30
    ekdennie said:

    depression
    it is pretty common to still be depressed while on antidepressants...I would let the doctor know, they may need to adjust the medication, or it hasn't had enough time to work (depends on the medication). I am eating as much as I can , but my weight is still going down. I am doing too much activities with not enough calories. my doctor had me use a product called scanishake...you mix it with milk and it packs a lot of calories in just a small amount of fluid, more than boost plus. I also force myself to drink a glass of milk with each meal, I hate milk, but it is giving me calories.
    wishing you and him luck!

    Losing weight - Gaining weight - - Depression
    ekdennie...

    Thank you for taking the time to write. My brother, Paul and myself truly appreciate you sharing both information and your experiences. I too dislike milk but sometimes you just have to do what you have to do...we wish you the best of luck as well and again, many thanks!

    Kind regards,

    Susan and Paul
  • Paulssister
    Paulssister Member Posts: 30

    chiming in
    Thought maybe I would respond to Susan since I posted this same question about my husband a few months ago.

    Susan, my husband, Jim, had advanced base of tongue and hypopharyngeal cancer diagnosed in May. He had 35 radiation treatments and three chemos of Cisplatin. Jim's starting weight was 165 and he lost down to 121. Although Jim had a PEG, we never had to use it because Jim never lost his ability to eat. Consuming around 3500 calories a day, every day, was not able to stave off the weight loss: it seems to be a result of the treatment process.

    This morning,four months post-treatment (ended late August) Jim tips the scales at 137 and has been there for several days now. Praise the Lord.

    Jim thinks these things are important:

    1) Listen to your cancer team's advise. They are pros and have seen it all.
    2) Eat, eat, eat. Consume all the things you never could eat before because of calories or concern about nutritional value. Make healthy choices but this is a good time to indulge. Enjoy milkshakes and tolerate them well? Have them a couple of times a day. Remember to consider all your body's systems when making choices: to counter the effects painkillers can have on the rest of your body (slowing down digestion and elimination), Jim's last food for the day is a big bowl of oatmeal, loaded with butter and sugar and cinnamon. Eat even if doesn't appeal to you right now, or even if not hungry: remember, this is part of a process and the end result is your goal. You won't get stronger or feel better if you don't EAT.
    3) Get some fresh air every day. When possible weather-wise, even when at his weakest, Jim took a short walk every day around the block and as he has gained strength and weather permits, he takes several short walks every day. REMEMBER: you don't have to run a marathon. Just get out and do it!
    4) For the depression and feelings of anxiety and simply to get your mind somewhere else, pick up a hobby. Jim has started oil painting again but anything that lets you move away from the cancer mentally and keeps your hands occupied will do.
    5) Make plans. Your life may be altered but it is not over. Look to your future: the next doctor's appointment is not a goal, it is a reality. Plan something pleasurable and do it.

    This is a process: Jim is, by profession, a process engineer. As he was able to see this is a process with an end result, he has been able to keep moving forward. Jim has been constantly striving to make the end result as good as possible. It just takes TIME and there is no real "standard" by which he can measure himself because everyone responds differently to the treatment.

    Remember, you are your own guinea pig. If it feels right, and your team agrees, try it.

    Remember people are always on this site, Susan, to answer questions. It is a great place with compassionate people with lots of experience.

    Hugs.

    Chiming in
    Dear Noellesmom...

    You were most kind to take the time to write and both my brother, Paul and I truly appreciate it. Not only was it invaluable information but it made us stop stressing and move forward in an intelligent way. We may have won the battle against the cancer with radiation but now we understand the war ain't over yet!

    Do take care, best of luck to you and your husband, Jim...and Happy New Year to the both of you!

    Kind regards,

    Susan and Paul