Chemotherapy and dieting?

2

Replies

  • PAV8888
    PAV8888 Posts: 14,259 Member
    edited February 2018
    YvetteK2015 wrote: »
    She won't gain any weight. It's cancer. It starves her body of nutrients. I have a feeling she's not so much "watching her calories" as she thinks. More so that she just isn't gaining any weight with what she is eating.
    ... while also at the same time feeling nauseous from the attempt and her illness.

    Obviously I have no way of knowing what is happening inside you.

    My mom managed to keep her weight relatively stable once she started chemotherapy (she visibly lost fat and muscle before treatment start). In spite of eating such than in the past she would have gained weight eating this way, she has only managed stability, perhaps a hint of recovery, based on visual evaluation.

    When dealing with illness and depending on what is happening inside you weight, by itself, can be a very un-reliable indicator. During my mom's first paracentesis the fluid that was removed added up to >10% of her total weight.

    While eating till you feel nausea may or may not be necessary, the fear I would have is that if you don't force yourself to eat you may continue to lose muscle and fat.

    Ensure also makes a high gain formula which maximizes calories per volume. As I've only seen it in hospital I don't know if it has to be prescribed or special ordered.
  • cbl40
    cbl40 Posts: 281 Member
    No advice for you as many posters already covered it. But, I just want to say how sorry I am that you are going through this. Wishing you peace and strength in the days and months ahead.
  • JustSomeJD
    JustSomeJD Posts: 416 Member
    You need NUTRITION, don't sweat a "diet" right now.
  • rickiimarieee
    rickiimarieee Posts: 2,212 Member
    rcervetto wrote: »
    I have never undergone chemotherapy/cancer treatment so I won't comment on that, but you have said this to a few people:

    I’ve been stuffing my face for the last two weeks and haven’t gained a pound so at this point I’d rather watch my calories and not be nauseous then to force myself to eat!

    If you've been eating more and not gaining/maintaining, why do you think you should eat less ("watch calories") to maintain? From your history, it seems that watching calories to not be nauseous will result in you losing weight. Which is probably what the doctor is concerned about. I think what @AnnPT77 was saying isto follow your current doctor's orders (gain weight/eat more) until you are able to be seen by your new doctor and hear what they recommend. Did you ask your doctor why they recommended you to gain when your research suggests maintaining, rather than just decide she's wrong and you need a new doctor?

    I actually didn’t get to ask her the reasons for gaining. She’s always in a hurry so I don’t get much time to process and think of questions until after the appointment is done
  • rickiimarieee
    rickiimarieee Posts: 2,212 Member
    edited February 2018
    AnnPT77 wrote: »
    YvetteK2015 wrote: »
    rcervetto wrote: »
    I have never undergone chemotherapy/cancer treatment so I won't comment on that, but you have said this to a few people:

    I’ve been stuffing my face for the last two weeks and haven’t gained a pound so at this point I’d rather watch my calories and not be nauseous then to force myself to eat!

    If you've been eating more and not gaining/maintaining, why do you think you should eat less ("watch calories") to maintain? From your history, it seems that watching calories to not be nauseous will result in you losing weight. Which is probably what the doctor is concerned about. I think what @AnnPT77 was saying isto follow your current doctor's orders (gain weight/eat more) until you are able to be seen by your new doctor and hear what they recommend. Did you ask your doctor why they recommended you to gain when your research suggests maintaining, rather than just decide she's wrong and you need a new doctor?

    She won't gain any weight. It's cancer. It starves her body of nutrients. I have a feeling she's not so much "watching her calories" as she thinks. More so that she just isn't gaining any weight with what she is eating.

    Cancer doesn't universally starve one's body of nutrients or prevent weight gain, at stages where we are mostly able to carry on with everyday life.

    Are you an oncologist? I'm not, so I'd be hesitant to make detailed assessments of OP's current probability of cancer cachexia based on what's been written here. I suspect her personal doctor, even a non-oncologist, is in a better position to assess that.

    I'm sympathetic that she's worried about the current doctor's competence, but diagnosis and treatment are doctor territory, not internet forum territory, IMO.

    Actually to be clear, I am seeing an oncologist. But she isn’t competent enough to know the big signs. There’s doctors out there that aren’t good at the jobs and I’d consider her one of them. Is she a bad person? Absolutely not. Could she have prevented my cancer from getting this far? Yes yes yes. My biopsy tests came back reactive, she told me it was nothing and I have a portal where I can read all my test results and I read them months later after my portal was opened and read that it was reactive. But I assumed because she specializes in this I’d trust her. They grew back months later after not hearing from her at all. And she finally did a pet scan. A year and a half later after I came to her the first time. I’m not really looking for answers on what to do because you all don’t know my past my medical history or anything I’m just wondering if anyone has been through what I’ve been through and received the same advice or been told completely opposite
  • rickiimarieee
    rickiimarieee Posts: 2,212 Member
    YvetteK2015 wrote: »
    AnnPT77 wrote: »
    YvetteK2015 wrote: »
    rcervetto wrote: »
    I have never undergone chemotherapy/cancer treatment so I won't comment on that, but you have said this to a few people:

    I’ve been stuffing my face for the last two weeks and haven’t gained a pound so at this point I’d rather watch my calories and not be nauseous then to force myself to eat!

    If you've been eating more and not gaining/maintaining, why do you think you should eat less ("watch calories") to maintain? From your history, it seems that watching calories to not be nauseous will result in you losing weight. Which is probably what the doctor is concerned about. I think what @AnnPT77 was saying isto follow your current doctor's orders (gain weight/eat more) until you are able to be seen by your new doctor and hear what they recommend. Did you ask your doctor why they recommended you to gain when your research suggests maintaining, rather than just decide she's wrong and you need a new doctor?

    She won't gain any weight. It's cancer. It starves her body of nutrients. I have a feeling she's not so much "watching her calories" as she thinks. More so that she just isn't gaining any weight with what she is eating.

    Cancer doesn't universally starve one's body of nutrients or prevent weight gain, at stages where we are mostly able to carry on with everyday life.

    Are you an oncologist? I'm not, so I'd be hesitant to make detailed assessments of OP's current probability of cancer cachexia based on what's been written here. I suspect her personal doctor, even a non-oncologist, is in a better position to assess that.

    I'm sympathetic that she's worried about the current doctor's competence, but diagnosis and treatment are doctor territory, not internet forum territory, IMO.

    No, not an oncologist, but cancer type can be a determining factor in weight loss from cancer. Were you may not lose weight from a brain tumor necessarily, lymphomas are notorious for that. Plus her stating that she can't gain no matter how much she eats? Those are specific signs to look for.

    Plus I'm not stating anything that isn't already known to be a symptom. When you get a workup for cancer, weightloss is one of the main questions. If it's making you lose weight, being told to gain weight first before chemo is almost impossible.

    This is 100%. No matter how much you eat cancer finds a way of making it impossible to gain. What I’m saying is there’s no reason for me to force myself Day in and day out eating and eating and eating when I’m not getting what I’m suppose to be getting out of it besides being entirely too sick to do anything.
  • rickiimarieee
    rickiimarieee Posts: 2,212 Member
    PAV8888 wrote: »
    YvetteK2015 wrote: »
    She won't gain any weight. It's cancer. It starves her body of nutrients. I have a feeling she's not so much "watching her calories" as she thinks. More so that she just isn't gaining any weight with what she is eating.
    ... while also at the same time feeling nauseous from the attempt and her illness.

    Obviously I have no way of knowing what is happening inside you.

    My mom managed to keep her weight relatively stable once she started chemotherapy (she visibly lost fat and muscle before treatment start). In spite of eating such than in the past she would have gained weight eating this way, she has only managed stability, perhaps a hint of recovery, based on visual evaluation.

    When dealing with illness and depending on what is happening inside you weight, by itself, can be a very un-reliable indicator. During my mom's first paracentesis the fluid that was removed added up to >10% of her total weight.

    While eating till you feel nausea may or may not be necessary, the fear I would have is that if you don't force yourself to eat you may continue to lose muscle and fat.

    Ensure also makes a high gain formula which maximizes calories per volume. As I've only seen it in hospital I don't know if it has to be prescribed or special ordered.

    See the advice I was mainly looking for was things that could up my calorie intake without making me so much as sick as food does. Yes I’ve lost weight and muscle, but as I’m forcing myself I’m not gaining anything by it. I’m not gaining the weight I’m just staying the same as I was before. I’m not asking for a doctors opinion because obviously you all can’t tell what’s happening in me or what I’m feeling or any of my medical history but what I’m mainly asking is if anyone else was in the same situation and told the same thing or if they were told to do differently.
  • AnnPT77
    AnnPT77 Posts: 34,257 Member
    rickiimarieee wrote: »
    AnnPT77 wrote: »
    YvetteK2015 wrote: »
    rcervetto wrote: »
    I have never undergone chemotherapy/cancer treatment so I won't comment on that, but you have said this to a few people:

    I’ve been stuffing my face for the last two weeks and haven’t gained a pound so at this point I’d rather watch my calories and not be nauseous then to force myself to eat!

    If you've been eating more and not gaining/maintaining, why do you think you should eat less ("watch calories") to maintain? From your history, it seems that watching calories to not be nauseous will result in you losing weight. Which is probably what the doctor is concerned about. I think what @AnnPT77 was saying isto follow your current doctor's orders (gain weight/eat more) until you are able to be seen by your new doctor and hear what they recommend. Did you ask your doctor why they recommended you to gain when your research suggests maintaining, rather than just decide she's wrong and you need a new doctor?

    She won't gain any weight. It's cancer. It starves her body of nutrients. I have a feeling she's not so much "watching her calories" as she thinks. More so that she just isn't gaining any weight with what she is eating.

    Cancer doesn't universally starve one's body of nutrients or prevent weight gain, at stages where we are mostly able to carry on with everyday life.

    Are you an oncologist? I'm not, so I'd be hesitant to make detailed assessments of OP's current probability of cancer cachexia based on what's been written here. I suspect her personal doctor, even a non-oncologist, is in a better position to assess that.

    I'm sympathetic that she's worried about the current doctor's competence, but diagnosis and treatment are doctor territory, not internet forum territory, IMO.

    Actually to be clear, I am seeing an oncologist. But she isn’t competent enough to know the big signs. There’s doctors out there that aren’t good at the jobs and I’d consider her one of them. Is she a bad person? Absolutely not. Could she have prevented my cancer from getting this far? Yes yes yes. My biopsy tests came back reactive, she told me it was nothing and I have a portal where I can read all my test results and I read them months later after my portal was opened and read that it was reactive. But I assumed because she specializes in this I’d trust her. They grew back months later after not hearing from her at all. And she finally did a pet scan. A year and a half later after I came to her the first time. I’m not really looking for answers on what to do because you all don’t know my past my medical history or anything I’m just wondering if anyone has been through what I’ve been through and received the same advice or been told completely opposite

    I was told to maintain . . . but I was obese at the time. I lost some weight during 6 months of chemo & 6 weeks of radiation, but not a lot, as I was trying hard to follow instructions.

    I lost no weight due to the cancer itself (i.e., before treatment). I may even have gained a bit because I was so tired all the time. I had thought the fatigue was from my job (long hours/high stress), but it turned out to have been from the cancer.
  • rickiimarieee
    rickiimarieee Posts: 2,212 Member
    jseams1234 wrote: »
    rickiimarieee wrote: »
    kazgorat1 wrote: »
    I would do your best to put on some weight. You can worry about losing any excess later. If you end up doing a round of chemo, I have to believe the weight will come off anyway, which is probably one of the reasons your doctor is concerned.

    Try eating calorie dense foods like peanut butter, nuts, etc. when you are having a tough time.

    A lady I worked with was having chemo, and she was able to obtain medical marijuana, which she told me helped quite a bit with both nausea and her appetite.

    In my state medical marijuana isn’t legal yet unfortunately

    Yes, but Marinol (dronabinol) is. I was given Marinol during the end of my treatments because I had such a hard time eating and had lost so much weight. Marinol is THC suspended in oil in a little white gel cap. They worked - gave me quite the buzz too. I'd pop a few and hit the food court at the mall. I'd eat so much that I could barely waddle to the train. ;)

    I went from 230 pounds at 6'1 to 135 pounds at the end. I can't imagine what would have happened if I had been much lighter at the start. A good chunk of deaths attributed to cancer are directly caused by wasting... You have a fight on your hands. You are going to want to stack the deck as much as you can in your favor.
    I agree. That’s a lot! I read that some make you lose but some you can maintain. It all just depends on the chemo ‘cocktail’ they make you. That’s a lot of weight that definitely jolts me. I’ll be sure to ask about the oil! It should help. Right now peppermints seem to be helping me but only for a little bit. I’m sorry you had to go through that! Nice to hear that you’ve made it through!
    yirara wrote: »
    I'm not sure you want to hear it, but my mom lost the battle with cancer. She always had somewhat disordered thinking about food and weight, and was happy when she lost more. She was given food via a tube when she refused to eat, but she removed it. Doctors said she had a real chance of recovery. She chose not to but to be thin instead. :(

    I’m so sorry for your loss. I won’t be happy if I lose more! Thank you for the burst and motivation to keep stuffing my face!
  • rickiimarieee
    rickiimarieee Posts: 2,212 Member
    YvetteK2015 wrote: »
    11 years ago I had NHL. A very aggressive form. I was 5'5 and 110 lbs. There was no concern about putting extra weight on. And my rounds of chemo lasted 96 hours each. But I will say that I was put on 2 anti nausea drugs. One I was given during chemo, and the other I could take as much as I needed. It worked so well, I never got sick, I hardly ever felt sick (I took ALOT of that second drug) so I ate all the time. I even gained weight during treatment.

    The standard anti nausea they will give you during treatment is zofran....but I asked my oncologist to give me extra thorazine on top of that. It's AMAZING for strong nausea and was a life saver for me. If the doctor doesn't want to give that, you can ask for compazine....but it's not as strong.

    I’ll definitely keep this in mind! Thank you so much!!
  • rickiimarieee
    rickiimarieee Posts: 2,212 Member
    danae16 wrote: »
    My mom just went through lymphoma and the treatment. First - you may be sick or you might not. She did well with the chemo that she had and never actually threw up. One of the things that she noticed is that if she took the anti-nausea medication right when she started feeling a little off she could get through it without being sick. She didn't lose a lot of weight or anything while doing chemo. I'd talk to your oncologist about nausea medication and other things they can give you. Also - figure out what tastes good and eat it. Some stuff didn't taste the same for her. She ended up eating ramin noodles which is hilarious (I'd never seen her buy them in all my years at home). Also - she would eat lemon deserts because the flavor was better than chocolate or other rich foods. Drink a ton of water. It will help.

    I'm so sorry that you are going through this! Best of luck!!
    Thank you. I’m sorry your mother had to go through that! Best of wishes to you! Thank you for the advice!
    mitch16 wrote: »
    My father has lung cancer (this week, incidentally, marks 2 years since he was diagnosed). He went through 2 different rounds of chemo. One of the rounds of chemo made him very thin and frail, but my mom has done a fantastic job of fattening him up again. He's holding steady now on immunotherapy.

    Regardless of you thinking that your doctor is terrible, gaining a little bit of weight is a good idea as you will have a little extra fat stores in case you do end up losing your appetite or find it difficult to eat. It doesn't have to be a complete binge that makes you feel sick, either. Just add a few extra hundred calories every day will do it--just add a small bowl of ice cream or something else that you enjoy eating.

    Good luck!

    My grandfather had lung cancer, it was a rough rough road! I’m so sorry that he has to go through that! Thank you for the advice!!
  • rickiimarieee
    rickiimarieee Posts: 2,212 Member
    AnnPT77 wrote: »
    rickiimarieee wrote: »
    AnnPT77 wrote: »
    YvetteK2015 wrote: »
    rcervetto wrote: »
    I have never undergone chemotherapy/cancer treatment so I won't comment on that, but you have said this to a few people:

    I’ve been stuffing my face for the last two weeks and haven’t gained a pound so at this point I’d rather watch my calories and not be nauseous then to force myself to eat!

    If you've been eating more and not gaining/maintaining, why do you think you should eat less ("watch calories") to maintain? From your history, it seems that watching calories to not be nauseous will result in you losing weight. Which is probably what the doctor is concerned about. I think what @AnnPT77 was saying isto follow your current doctor's orders (gain weight/eat more) until you are able to be seen by your new doctor and hear what they recommend. Did you ask your doctor why they recommended you to gain when your research suggests maintaining, rather than just decide she's wrong and you need a new doctor?

    She won't gain any weight. It's cancer. It starves her body of nutrients. I have a feeling she's not so much "watching her calories" as she thinks. More so that she just isn't gaining any weight with what she is eating.

    Cancer doesn't universally starve one's body of nutrients or prevent weight gain, at stages where we are mostly able to carry on with everyday life.

    Are you an oncologist? I'm not, so I'd be hesitant to make detailed assessments of OP's current probability of cancer cachexia based on what's been written here. I suspect her personal doctor, even a non-oncologist, is in a better position to assess that.

    I'm sympathetic that she's worried about the current doctor's competence, but diagnosis and treatment are doctor territory, not internet forum territory, IMO.

    Actually to be clear, I am seeing an oncologist. But she isn’t competent enough to know the big signs. There’s doctors out there that aren’t good at the jobs and I’d consider her one of them. Is she a bad person? Absolutely not. Could she have prevented my cancer from getting this far? Yes yes yes. My biopsy tests came back reactive, she told me it was nothing and I have a portal where I can read all my test results and I read them months later after my portal was opened and read that it was reactive. But I assumed because she specializes in this I’d trust her. They grew back months later after not hearing from her at all. And she finally did a pet scan. A year and a half later after I came to her the first time. I’m not really looking for answers on what to do because you all don’t know my past my medical history or anything I’m just wondering if anyone has been through what I’ve been through and received the same advice or been told completely opposite

    I was told to maintain . . . but I was obese at the time. I lost some weight during 6 months of chemo & 6 weeks of radiation, but not a lot, as I was trying hard to follow instructions.

    I lost no weight due to the cancer itself (i.e., before treatment). I may even have gained a bit because I was so tired all the time. I had thought the fatigue was from my job (long hours/high stress), but it turned out to have been from the cancer.

    Yes lymphoma is called the silent killer because most of the symptoms can go unnoticed! That’s why I kept on my doctor so much about these lumps. I knew it wasn’t something to just let go. I have had troubles with being tired so very tired for as long as I can remember and I also have troubles with dizziness and almost blacking our everything I stand up, that also got put aside because I was told it was nothing. Also with pain in my back and feeling so nauseous after eating or drinking. The cancer is in my muscular skeletal system so it’s in my bones which is why it I’ve had pain in my back, thought it was from my years of nursing and lifting people coming back to haunt me.
  • ssurvivor
    ssurvivor Posts: 142 Member
    I'm a two-time cancer survivor (brain and ovarian). Your MD is probably concerned about the weight you'll lose once you begin your treatment. The fact is that everyone is different. Depending on the type of treatment and your reaction, you may lose weight, maintain or gain.

    For example, for my brain cancer, I had surgery, took Cytoxan and Prednisone (plus some other drugs because I was still fertile). I was originally supposed to have an IV drip for the Cytoxan but because of my fertility and the successful surgery, they switched to PO. But they didn't change the Prednisone dose accordingly so I ended up gaining weight. With the ovarian cancer, my medications were appropriate and I was obsessive about my nutritional content so I maintained. But a friend in one of my support groups lost half her body weight with her treatment.

    Basically, I'm just trying to illustrate that you never know how the treatment is going to impact you so it's pointless to prepare for it. The best thing you can do is follow the nutritionist's advice. Did your Oncologist send you to an oncology-certified nutritionist yet?
  • YvetteK2015
    YvetteK2015 Posts: 654 Member
    @rickiimarieee, my weight didn't start to come back up until chemo started and the tumors began to shrink. I too had to leave my first doctors because I didn't trust what they were saying and they were screwing up my biopsies. I think you are making a great choice by going to CTCOA. That would have been my second choice of places to go. I really wish you all the luck in the world. I know how hard it is going through this. Just stay strong and believe you will get through this. You are going to a wonderful treatment center.
  • cheryldumais
    cheryldumais Posts: 1,907 Member
    I think if you are uncomfortable with your doc you absolutely should change. I also agree that not all doctors were at the top of the class so find someone you trust. Who knows you guys just may not click or she may be too busy in her practice. If she's standing at the door rushing away I would feel very alone in this whole thing. She works for you not the other way around. I'm not sure where you are located but many doctors are rated on the internet. Maybe do a bit of research if you can to find someone who is competent as well as compassionate. Sometimes you only get one or the other. I have also been known to write down my questions on a piece of paper because I can get flustered when a doctor comes rushing in to make sure I ask all my questions. This is your life and health and you have every right to know WHY you are doing something.
  • The_Ta
    The_Ta Posts: 59 Member
    Write down questions for your doctors when you think of them. Bring in your notes when you have appointments. Try to write down their answers, and some may let you record their reply. You might also be able to ask the nurse questions too. Do not “worry” that you are bothering/annoying the medical staff. Patient education is essential but often skipped.

    Cancer sucks in so many ways.
  • YvetteK2015
    YvetteK2015 Posts: 654 Member
    edited February 2018
    saintor1 wrote: »
    Went from 158 to 124. I’m 5’3 and 124 pounds and she told me I was too small for chemotherapy and my body couldn’t handle it. So I would need to gain weight. It’s not the first crazy thing I’ve ever heard from her and kids go through chemo all of the time.

    I would indeed change doctor.

    Not an expert, but I would stay away from sugar and all "-ose" (even fructose), that might fuel the cancer.
    https://www.nbcnews.com/health/cancer/here-s-how-sugar-might-fuel-growth-cancer-n488456

    That's probably not the best study to link to. At one point it states that cancer patients don't die from primary tumors but of metastatic tumors, and you are linking it to a stage 4 cancer patient. Stage 4=metastatic tumors.
  • AnnPT77
    AnnPT77 Posts: 34,257 Member
    The_Ta wrote: »
    Write down questions for your doctors when you think of them. Bring in your notes when you have appointments. Try to write down their answers, and some may let you record their reply. You might also be able to ask the nurse questions too. Do not “worry” that you are bothering/annoying the medical staff. Patient education is essential but often skipped.

    Cancer sucks in so many ways.

    It helped me, during treatment, to have an official notebook for this. I'd write down questions (or weird symptoms, or whatever) when I thought of them, take the notebook to appointments to write the answers & any instructions given in real time. I don't think I could've gotten through the chemobrain phase any other way.

    Notes on one's tablet could work instead, but I'd look for a case with a pocket for papers they give you.
  • JulieMar50
    JulieMar50 Posts: 2 Member
    My mom is fighting stage 4 lymphoma as well, with varying degrees of success with different chemo therapy.. She lost 30 lbs in a few weeks and could afford to lose it, but now the doctor is telling her to eat calorie dense foods she likes, Costco muffins, anything she can handle and likes.. not to worry about losing weight now.. Good luck with your battle, cancer sucks! If you want to pm me feel free too :)
  • mywayroche
    mywayroche Posts: 218 Member
    This is why cannabis should be legalised medically across the world. It is a nightmare, my mum went though the same thing. We managed to increase fat levels in her food without her noticing so that's a thought
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