Need some help with medication and no appetite

Paula G.
Paula G. Member Posts: 596
edited March 2014 in Colorectal Cancer #1
Hi everyone,
I need some help from all of you that have been on irinotecan plus 5-FU or Xeloda.
John is taking Xeloda and irinotecan plus the avastin every thee weeks. He just started this last Friday and Friday and Saturday we pretty good. Sunday was a big drop I thought is was the steroid they gave him. Monday rolls around and the diarrhea started so he is taking imodium AD for this but the bad part is he is not eating or drinking much at all. He had about 8oz. of water yesterday a small amount of oatmeal a half of bagel and just a little bit of a milk shake. He say he doesn't have an appetite at all.

Any suggestions? He won't drink ensure or any of the other drinks for nutrition. They did give him compazine and Ondansetron and Lorazepam for nausea. He took one compazine but says he really isn't nauseated. If you can help at all I would appreciate it. Paula

Comments

  • lisa42
    lisa42 Member Posts: 3,625 Member
    appetite and diarhea
    Paula,

    Get some prescription lomotil for the diarhea- it controls it much better than immodium. Immodium worked for me for a while, but then I had to change to lomotil. Now, even though I'm no longer on irinotecan, the xeloda causes diarhea and I still need lomotil at least 3-4 days a week.

    I wish I could think of something helpful for the appetite other than marijuana. I have heard from so many people who have finally tried it that it's really the only thing that helps with getting the appetite back. I don't know if it's legal in your state or not or if you can get it or not but, if so, I would certainly try it. They have edibles and sprays, if you don't like the smoke, but I've heard smoking it is what works best. I've tried it a couple of times, but stopped because I really didn't need it anymore & also because I was too paranoid. Mainly I wasn't, but my husband was- even though medical mj is supposedly legal in California, the feds have been harrasing the local dispensaries, closing them down over ridiculous supposed violations, etc & I was afraid of ending up on the news. If my husband weren't so paranoid about it, I'd do it anyhow.
    If you don't have that worry, I'd get it for your hubby- a cancer patient is the "poster child" of who can benefit and qualify for medical marijuana (that's what the doctor told me when i went to get my mj medical card last fall).

    Lisa
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Hi Paula,
    It sounds like I

    Hi Paula,

    It sounds like I am on the same treatment as John (folfiri + avastin), except I have treatment every two weeks. I just had a treatment yesterday + found I couldn't eat too much last night. I am drinking a smoothie right now + I am thinking I'll have an omelette a little later. I find lemon flavoured drinks seem to work for me. Also macaroni + cheese seems easy to deal with when I am not feeling up to it - we do noodles + make a simple cheese sauce. The bottom line is whatever I am able to eat/drink the first 3-4 days is what I do. I try to eat pretty healthily but those first few days it's what appeals to me + making sure to drink lots of fluids. If this is John's 1st treatment of this "cocktail", he may find that after a few days, his aappetite may come back, as mine does. Best of luck with this!
  • This comment has been removed by the Moderator
  • coloCan
    coloCan Member Posts: 1,944 Member
    unknown said:

    This comment has been removed by the Moderator

    Maybe John might want to try Boost Breeze, which is supposed to
    be clear, flavored nutrition drink; was suggested to me by radiologist but I preferred Boost/Ensure/CVS Plus drinks. Diarrhea causes you to lose essential salts and other minerals so talk with 0nc. The BRAT diet is also recommended (banana,rice,applesause,toast, I think)...Hoping John's runs shortly solidify.....steve
  • coolvdub
    coolvdub Member Posts: 408 Member
    unknown said:

    This comment has been removed by the Moderator

    It worked for me
    Hi Paula,

    I have to agree with what Lisa told you about the Medical Marijauna, it was the only way I was able to eat some days. I don't know if you are in a MM friendly state, but if you are I highly recommend getting a card and doing it legaly. If not, I would still do it, just be careful.

    Lisa,
    If I can but into your business, if going to a co-op or dispensary bothers your husband. Would he be okay with a delivery service? That's how I get my M&M's as my wifes Aunt calls it. We just meet up usually at a fast food restaraunt. It works out really well for all involved. Maybe you can offer this up to the hubby as an acceptable compromise, I mean if it works for you and makes you more comfortable, surely he wouldn't deny you some relief.

    Graci,
    Great suggestion, I know all to well the phrase, you have to eat, eat something. And you are certainly right with your asessment, it does stress us to the max. We know we need to eat, we just can't. I mean we have cancer, it's not like our brains stopped working. We are just not able to eat. it's very hard to get somebody who isn't going through this to understand. But I like the idea of the of the Mega High calorie drinks. I have always had issues with my weight. I could put on weight, just thinking about food. Now I have a hard time maintaining it, a couple of weeks ago I was down to 140, down 100 pounds from my normal weight. It has taken a few weeks of eating like a pig to get back up to 155.

    Don
  • PamPam2
    PamPam2 Member Posts: 370 Member
    Paula
    Hi Paula
    I was drinking chocolate milk and milkshakes, then got diarrhea, the onc nurse said milk/dairy products can cause this, cause lactose intolerance, and this can become permanent if you continue to eat it. Keeping fluids in is very important, I found soda pop and water with some lemon or lime slices I could get down. While on the chemo I didn't focus too much on "healthy" foods, just ate whatever tasted good to me. I hope John will increase his fluid intake and can find some foods he will eat. Best to you both
    Pam
  • Paula G.
    Paula G. Member Posts: 596
    PamPam2 said:

    Paula
    Hi Paula
    I was drinking chocolate milk and milkshakes, then got diarrhea, the onc nurse said milk/dairy products can cause this, cause lactose intolerance, and this can become permanent if you continue to eat it. Keeping fluids in is very important, I found soda pop and water with some lemon or lime slices I could get down. While on the chemo I didn't focus too much on "healthy" foods, just ate whatever tasted good to me. I hope John will increase his fluid intake and can find some foods he will eat. Best to you both
    Pam

    Thanks guys,
    He feels a bit

    Thanks guys,
    He feels a bit better today. He did eat this morning and is drinking a little more. He won't do the ensure Boost stuff. He tried them at the start of all this when he first came out of the hospial for colon surgery. Just couldn't get them down.
    As far as MJ I have thought of that but and this is a big issue, our 19 year old was smoking it in the house and we came unglued with him. We don't want him to think we think it is okay because he would abuse it. He also is 19 and thinks or I should say doesn't think. I worry every time he leaves the house that we will get a call from the cops. He always thinks he is smarter than everyone else. I just told him that all it is going to do is make him fat, stupid and lazy. All of which he doesn't need help with. Sorry I do love him with all my heart but I was 19 once and did smoke pot. I think at that age we all thought we were smarter than we really were.Oh and my dad was a cop. I really thought I had the wool pulled over his eyes. NOT!!! Well I guess at least know where I can score some.
    I will just keep hoping that it will get better in a couple of days. Paula
  • abrub
    abrub Member Posts: 2,174 Member
    I understand that there is a medication: Marinol; which is an appetite-enhancer based on marijuana. A friend is on it to encourage her to eat. You can talk to John's dr about appetite enhancement.
  • coolvdub
    coolvdub Member Posts: 408 Member
    abrub said:

    I understand that there is a medication: Marinol; which is an appetite-enhancer based on marijuana. A friend is on it to encourage her to eat. You can talk to John's dr about appetite enhancement.

    Paula,
    I'm sorry the 19 year

    Paula,
    I'm sorry the 19 year old has caused you such problems, That being said, it might be a good opportunity to teach your 19 year old that it can be used responsably. But I certainly do understand the position you guys are in. I have not used marinol so I can't speak to how good it does or doesn't work. But give it a try if you feel it may be a good alternative.

    Don
  • Paula G.
    Paula G. Member Posts: 596
    coolvdub said:

    Paula,
    I'm sorry the 19 year

    Paula,
    I'm sorry the 19 year old has caused you such problems, That being said, it might be a good opportunity to teach your 19 year old that it can be used responsably. But I certainly do understand the position you guys are in. I have not used marinol so I can't speak to how good it does or doesn't work. But give it a try if you feel it may be a good alternative.

    Don

    Thanks I will ask the Dr.
    Thanks I will ask the Dr. about the marinol. He has not ate anything but a little yogurt today.
  • taraHK
    taraHK Member Posts: 1,952 Member
    Whatever he can
    I agree with what some others have said -- whatever he can tolerate or whatever appeals to him, he should eat -- just get calories in, somehow. I've just started chemo again and I'm facing this issue again. For me, "comfort food" helps, the first couple of days. And, eating several small meals (in fact, snacks), rather than 3 (or even 1!) big meal. Also high calorie snacks -- shortbread helped me!

    Good luck with this.....

    Tara
  • taraHK said:

    Whatever he can
    I agree with what some others have said -- whatever he can tolerate or whatever appeals to him, he should eat -- just get calories in, somehow. I've just started chemo again and I'm facing this issue again. For me, "comfort food" helps, the first couple of days. And, eating several small meals (in fact, snacks), rather than 3 (or even 1!) big meal. Also high calorie snacks -- shortbread helped me!

    Good luck with this.....

    Tara

    This comment has been removed by the Moderator
  • petppetp
    petppetp Member Posts: 14
    megace.....
    tell your doc you want a prescription for 'megace' (also known as magestrol). they have it in pill form, and also in a concetrated liquid called 'megace ES'....which my mom prefers. one teaspoon a day and he wont be able to STOP eating...its amazing. i give it to my mom and every 2 hours she says shes hungry. and there are no side-effects either.
    ask your doc if he/she has samples to give you, it comes in little bottles thats about a weeks supply.

    cheers
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Paula G. said:

    Thanks guys,
    He feels a bit

    Thanks guys,
    He feels a bit better today. He did eat this morning and is drinking a little more. He won't do the ensure Boost stuff. He tried them at the start of all this when he first came out of the hospial for colon surgery. Just couldn't get them down.
    As far as MJ I have thought of that but and this is a big issue, our 19 year old was smoking it in the house and we came unglued with him. We don't want him to think we think it is okay because he would abuse it. He also is 19 and thinks or I should say doesn't think. I worry every time he leaves the house that we will get a call from the cops. He always thinks he is smarter than everyone else. I just told him that all it is going to do is make him fat, stupid and lazy. All of which he doesn't need help with. Sorry I do love him with all my heart but I was 19 once and did smoke pot. I think at that age we all thought we were smarter than we really were.Oh and my dad was a cop. I really thought I had the wool pulled over his eyes. NOT!!! Well I guess at least know where I can score some.
    I will just keep hoping that it will get better in a couple of days. Paula

    HI Paula
    I have not come face-face with the MJ and my 16 yr old son but he knows that I do not want him smoking it as a "kid". When he's older and wants to use it, I hope I'm around to share with him. So my situation is different since he is not actively smoking it. I think though that if he were that I would try to have him see the different situation your husband is in. He's not doing it for kicks, he would utilize the medicinal benefits from it. I know that we are "thinking like adults" as my son has said to me on occasion.

    I hope you all are doing better
    -phil
  • petppetp said:

    megace.....
    tell your doc you want a prescription for 'megace' (also known as magestrol). they have it in pill form, and also in a concetrated liquid called 'megace ES'....which my mom prefers. one teaspoon a day and he wont be able to STOP eating...its amazing. i give it to my mom and every 2 hours she says shes hungry. and there are no side-effects either.
    ask your doc if he/she has samples to give you, it comes in little bottles thats about a weeks supply.

    cheers

    This comment has been removed by the Moderator