Diet : Hi. I was wondering if anyone has any... - CLL Support

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Diet

Madison1995
Madison1995

Hi. I was wondering if anyone has any good advice about gaining weight. I’ve always been thin and never had much of an appetite I’m 5’5 110. I’ve lost some weight due to diagnosis and the anxiety I have had as I actually lose my appetite. I would love to get up to at least 120 if not more. I drink boost and really only have an appetite for dinner. But I’ve been that way my whole life. Ugh. Any suggestions would be great. Thank you

57 Replies
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I have been in your situation most of my life - and especially when CLL was progressing. I did drop 10% of normal body weight unintentionally, which is one of the symptoms of CLL progressing. My go-to foods for weight gain have historically been big plates of plain pasta with grated cheese on top, or big pile of mashed potatoes with butter & some milk. But that's because my body loves those particularly foods, so I can get quite a bit of it down if I need to. I'm not saying it's the most nutritious way to do it. But think you want to find a good carb food that your body likes and naturally gravitates to.

I am not now in that situation because since resolving both cancers (both in remission - CLL and anal cancer)... my weight popped up higher than it has been before (just 5 lbs above my normal). and the extra 5 lbs seems to primarily be at the belly. So I am not going out of my way to load carbs now. And I am wondering if this belly roll will go away now that I have just ended ibrutinib (which may have been contributing).

JigFettler
JigFettlerVolunteer

The solution is simple, you must consume more calories then you use.

If you are eating only 1 meal a day - then you will be fasting part of the day.

Are you very active?

Check thyroid status. Other medical issues such as gluten allergy - if un-diagnosed - may play a part.

This is something for your family physician, as it requires a review of you total medical situation.

Jig

My thyroid is fine had that checked as well as tons of gi issues and celiac disease Ect in the past 10 years. I usually am active but been pretty depressed the past year So I’m sure that has something to do with it. I know if I just eat first thing in the morning my appetite will increase but I almost get nauseated because mornings are the worst for me mentally as I face this everyday. If that makes Since

A green smoothie in morning can be a good way to get things started. Easier on stomach than a meal. I too am not a person who wants to eat upon waking.

I work in Medical and I believe that women that have the middle belly weight is Hormonal. Typically. I worked o gun for 20 years. I eat a lot of carbs and have a very high metabolism as my father did. But I would like to get in a better weight category. Last night I made fried pork chops homemade gravy corn on the cob as I’m a country girl and was raised on that lol. I just can’t seem to get an appetite and I just believe that is all stress not due to the CLL. I force myself to eat but nothing is helping

I eat like that too! Pork chops, gravy, corn. Sounds like my dinner! And I too usually make myself eat because I know I have to to stay healthy. I am rarely actually hungry. Good luck to you!

Thank you. I used to love to eat. People would laugh as I could eat a large pizza and never gain weight. Happy for you that your treatments are going well now. 😊❤️

Thank you. Yes, the venetoclax treatment is going really well so far!

That’s great!! I love seeing so many positives with the newer drugs. You’ve had a little bit of a challenge so you’re due for some good news 😉

cllady01
cllady01Volunteer

Madison, you might benefit from the ABC group---check it out:

healthunlocked.com/user/ABC-

cllady01
cllady01Volunteer

Actually your weight is just 3 pounds below the lower limit in 5'5" women, so not considered dangerous according to: en.wikipedia.org/wiki/Under...

And, with your eating habits being as they are, you could probably benefit from eating breakfast as well as the evening meal you have said you eat.

Thank you. My BMI at my doctors stated I should be 126. So 16lbs below the weight I should be. Which I’ve only been that weight when I cheered and ran track on high school 25 years ago lol

cllady01
cllady01Volunteer
in reply to Madison1995

Yes, that would be your "Ideal Weight", but the lower limit is 113, so that is what I am saying. And, if you read the article, you will see what is a dangerous low weight for you. Are your Drs saying your are harming your body at our current weight?

cllady01
cllady01Volunteer
in reply to Madison1995

Okay, here is a BMI site (linked below) weight assessment. With the calculation for BMI, you are about .02 underweight for your health. So you do have some work to do to remain healthy, so getting on a good/normal? (not your normal, but a healthy normal) eating regime will gradually get you gaining a bit of weight. I do hope you can see that while it is less weight than you need ideally, it should be any easy thing to do--to eat some more daily.

BTW, I really lost weight (40 lbs) from low appetite about the 7th year of my diagnosis and have maintained that weight now even with a low appetite by being sure I eat a fruit, a protein (meat or beans) and vegetables daily. I have a good, warm oatmeal breakfast, then a lunch--sandwich and potato chips, usually. Sometimes that is 1/2 sandwich because I fill up on that much. --but sometimes a warm meal (esp. when I eat out)--then mid afternoon I have an apple or a banana and a handful of lightly salted mixed nuts. I don't get hungry--and I drink enough water to keep me hydrated.

A low appetite can be nurtured back to better (if not what it was) by eating several small snacks during the day, rather than having a big meal--which I always have to divide and if at restaurant, bring home the rest for the next day.

I would suggest, don't try to rush weight gain, just get your daily requirements for nutrition and remain healthy for the time (and your's is predicted to be like mine---way down the road).

Best Wishes

cdc.gov/healthyweight/asses...

Thank you so much for all of your help!! I really appreciate it!! ❤️😊

No he just noticed I’ve lost some weight due to diagnosis and the stress

I think there is just a lot of time I spend on my own not having a spouse and I work for myself so I just constantly think which in turn creates the anxiety of everything that could go wrong then I just get in a stopper and can motivate myself sometimes. Just wish I had someone at home to help cope with all of it. That’s probably the hardest part for me.

I hear what you are saying about needing support at home. On the worst days I daydream about having someone massage me after my bath and hand me tea and soup all day. Try to train yourself to think more positively. Read How to Be Sick by Toni Bernhard. She offers constructive exercises to take your mind off your suffering. Having someone at home also comes with its problems, being ill all the time is hard on them too.

You’re absolutely right. Just trying to get a hold of all of this. Trying to look at the positives and hopefully the meds out there now I can just be treated like a chronic condition and live a good full life. I’ve always wanted certain things like a marriage again and I know with this no one will want that with me which I understand but that was always a dream of mine. Silly I know proabably to want that

Don't give up, I bet there is someone out there who would enjoy your company and be happy to take care of you.

You’re sweet. Thank you for your encouragement

I am reading your post and I so think like you do. I am divorced after almost 28 years of having someone with me. Now alone. After Dx I think like you. No one will want me. I don’t know if I ever will find someone to help me with all these. But I pray we both find that special someone bc we both deserve it. And I do think we have a lot of love and life to live. ❤️

Jackie

Naka
Naka
in reply to Madison1995

Medison I'll message you some links and suggestions that I'm doing that helped me tremendously with anxiety and pulling myself together. Carrying that monkey on our backs day in and day out is not easy. I lost a lot of weight at the time of diagnosis. Then again when it was time for treatment. Right now I'm working hard gaining the weight back. Definitely not easy!!

Naka

Madison1995
Madison1995
in reply to Naka

I’d appreciate that. You all help me a lot. It’s just a lot to take in at first. And to be a lone is hard sometimes. I’ve always been independent and I just let this take over. I’m doing better each day but today was rough for me I’ve lost everything I have every known and just in a very unknown place. No comfort or security. It’s a scary place to be. Which I know we are all there. I just don’t want to die at an early age as I have a lot I want to do and give and no matter what I try to do I’m just so lost and fearful if that makes since

Madison1995
Madison1995
in reply to Naka

I’d appreciate that. You all help me a lot. It’s just a lot to take in at first. And to be a lone is hard sometimes. I’ve always been independent and I just let this take over. I’m doing better each day but today was rough for me I’ve lost everything I have every known and just in a very unknown place. No comfort or security. It’s a scary place to be. Which I know we are all there. I just don’t want to die at an early age as I have a lot I want to do and give and no matter what I try to do I’m just so lost and fearful if that makes since

Madison - I have always been tall, small boned, and thin. I used to be able to eat whatever I wanted. Friends were always coming up with ways for me to gain weight. Etched in my memory is “Drink cream instead of milk!” Gag!

I also have never been a jump out of bed and eat breakfast person. My body doesn’t want to deal with more than maybe coffee and toast when I get up. I know that all of the breakfast eaters out there can’t relate, but I’m sure some members do.

Before I retired, especially when newly diagnosed and down 50 lbs., most of which I didn’t need to lose, I got into an evening survival routine. I would pack up food to get me through lunch the next day, in a cooler type lunch box with an ice pack. Some of my staples were boiled eggs peeled and in a baggie, cheese sticks, toast (cold, but food) or crackers, a banana, V8 juice or other relatively healthy juice, and for lunch when uninspired an avocado, small can of tuna, and Triscuits, plus a thermos of coffee ready to pour into a travel mug when I got into the car in the morning. I nibbled on some of it going to work - very long commute - and usually had coffee and a cafeteria muffin when I got there. More nibbling at recess (teacher). I also always have a box of Cliff Bars in my car and water - partially earthquake preparedness, but when I get past healthy hunger I always have something to munch on. I became the queen of reasonably healthy freezer to microwave meals for the times I just couldn’t deal with more than that. Trader Joe helped keep me alive when I was really ill. And munching in the evening helped. Nachos was a favorite.

Can you tell that I’m neither a foodie nor a cook?!?!LOL! Don’t worry about the old three square meals a day model. Try thinking in terms of healthy foods (and a few treats) that you can combine to add up to a reasonably healthy intake for the day. Things will even out. Be patient with yourself.

One of the pursuits that medical science loves is standardisation. It's both a blessing and a curse. A blessing because we want our doctors to have a certain standard measure when assessing us. But a curse when it tries to shoe-horn us into a standard that we don't quite fit.

BMI is one of those curses because it doesn't cover all bases. Medical science has for a very long time recognised that there are many body forms in the human race, but have reduced them into 3 main categories. Ectomorph, endomorph, and mesomorph. Unfortunately, BMI doesn't take these into account, it just averages them all out.

From your description of yourself, you seem to be in the ectomorph category. Ectomorphs are naturally slender and lightweight. So please don't feel pressured into being something different from what nature made you.

Awe thank you guys. I have always been thin. My dad was the same way. I just keep hearing everything I’m doing and not doing is because of anxiety. Well of course it is as I am scared and feel pretty lonely today to be honest. I just feel so lost. So I’m just trying to see if anyone had suggestions on gaining weight because everyone i sees says you’re so thin. I don’t need anything else to bring me down. Sorry just feeling a bit sorry for myself today I suppose. I’m just having a lost day today.

Most of the people who made an issue of me being thin were people who needed to diet! Just tell people who comment that you plan to drink cream instead of milk and try to not laugh too hard if they react.

Lol. I will do that. 😂

Make your own smoothies. Boost is not food. Get some protein powder, fresh or frozen fruit, and blend with liquid of your choice, juice, milk, etc. Add a handful of raw almonds. You can get lots of calories in a smoothie with protein powder and it's easy to eat when you just don't have an appetite.

Thank you. I’m going to try that. Any suggestions on the protein power

Orgain Organic protein powder, you can order in on Amazon, 21 grams of protein per serving.

My Mom had a problem with eating too. She didn't like Boost so my Dad made her Carnation instant milk with ice cream (the REALLY good stuff). He gave her a 1/2 cup several times a day. That kept her weight up. Good Luck. Anna

Spend a week with me!

Hello Madison1995

Do you smoke?

Madison1995
Madison1995
in reply to Big_Dee

I do. I’m in the processes of stopping as we speak for a million reasons. It has been hard to with the stress but my goal is by Monday to be totally done.

Big_Dee
Big_Dee
in reply to Madison1995

Hello Madison1995

Sorry for the somewhat personal question. When I was about your age I tried everything I could think of to gain weight. I quite smoking and my weight went up about 30 lbs in one year. The smoking tends to curb your appetite. Also when people are more stressed they also smoke more. I quite smoking 28 years ago "cold turkey" and had tried several times before to quite without success. When did finally quite, I knew I had to come up with a plan to deal with stress as I would reach for a cigarette when stressed. I my case there was a oak tree stump behind my office. Every time I would crave a cigarette, I would take my hatchet and chop on stump. I chopped out whole stump in three days and never looked back. Blessings, you can do this.

Madison1995
Madison1995
in reply to Big_Dee

Thank you. It’s a nasty habit with a lot of problems that can come with it. I believe that is why I had to get this as no one in my family ever smoked and right before my mom passed last year she said her one of her wishes for me was to quit smoking. I promised her I would. Unfortunately the CLL diagnosis had to get me to do it. But I’m so much better than I was. I just have to quit no meds or anything else is going to do it just me mentally. Now that the sun is out I’m going to start walking find a new place to live and hopefully live the life I’ve always wanted to have. If that makes sense

Big_Dee
Big_Dee
in reply to Madison1995

Hello Madison1995

I wish you success. I know with the stress of having CLL may not be the best time to quite. I am so glad I quite because years ago, I did not want to end up in a hospital sick and stressed over not being able to smoke a cigarette too. Do this on your own terms without being forced. Blessings you can do this.

Newdawn
NewdawnAdministrator

It’s hard for me to personally relate to this Madison because I have the opposite problem but it’s clearly a problem to many judging by the people I see in the Day Unit who are struggling to gain or maintain their weight. We do need a bit of extra fat on our bones come treatment time in case it induces nausea or weight loss. Ibrutinib seems to increase weight in many of us, me included and it’s the other unwelcome side of the coin.

Sounds like you have a lot of nervous energy and where I might reach for a biscuit (cookie), you’d probably have a cigarette. You’ve also clearly got ‘thin’ genes from your father and that’s important. I imagine you’re always on the go too. However, the main issue is the anxiety that’s robbing you of your appetite and making you a bit nauseous. Hopefully that will steady in time but in the meantime you need to eat smaller and more often. You say you had pork chops, gravy and sweetcorn. No potatoes? It’s the carbs that you’ll need to bulk up a bit. I’m sure you know what you need to eat but perhaps you need to see a dietician. You’re not massively underweight but obviously you don’t want to keep losing weight.

Hoping you can get your anxieties under control because any degree of depression can result in weight loss.

Sending best wishes,

Newdawn

Peggy4
Peggy4
in reply to Newdawn

Ain’t that the truth. I could usually write a book ‘How to put a stone ON in a week and keep it on’ but Im not sure it would sell well! However, after diagnosis I lost 21lbs in three weeks out of pure fright. Really not nice.

Peggy

Madison1995
Madison1995
in reply to Newdawn

I did have fried potatoes lol. Yes anxiety is worse than anything in my opinion. It does rob you so much. My first counseling is March 18 and hoping for great coping skills and more positive feed back to let me still have a future and normal life with dealing with this. If I drink a glass of wine each day I get an appetite which is probabaly horrible one problem for another. I hate anxiety.

Newdawn
NewdawnAdministrator
in reply to Madison1995

Have that glass of wine and if it gives you the munchies so much the better. It’s a stress reliever (though I’m not suggesting you take it up as your main hobby) 😉

Stop seeing yourself as different to everyone else Madison. It’s clear from your previous photo that you’re an attractive, vibrant woman. You have a great future ahead but at the moment you can’t see that. Hope that changes soon for you. I do understand anxiety and fear and it’s a happiness thief. Hope the counselling helps you to chase it away!

Newdawn

Madison1995
Madison1995
in reply to Newdawn

That was the nicest thing anyone has ever said to me. My boyfriend doesn’t see a future with us anymore 5 years together now that I have this so I needed to hear that. Thank you from the bottom of my heart. ❤️

AussieNeil
AussieNeilAdministrator
in reply to Madison1995

His loss. Given nearly 40% of the population in the USA develop cancer (so for a couple it's quite likely one of the couple will develop cancer- and it's more likely to be the man), honestly, it doesn't say much for his commitment to your relationship!

cancer.gov/about-cancer/und...

Neil

I know. Like I’ve said before a lot going on outside of my diagnosis. He didn’t even go to my moms funeral but wants me there for him. I try to give everyone the benefit of the doubt but I’m struggling as I feel pretty alone. I know he doesn’t care about me as much as I do him but it’s fearful to do this alone Just a lot to take in. And a lot to figure out. Not feeling sorry for myself it’s just hard to face this alone. It’s just a hard pill to swallow

Sorry. Just having a rough few days. Don’t need to put my drama on here. I’m just lost That’s why I come on here sometimes as maybe some people can understand.

Newdawn
NewdawnAdministrator
in reply to Madison1995

We do understand Madison but don’t let anyone ever make you feel you’re damaged goods because you’re certainly not. There’s many of our members much older and further along the CLL path who have found love and caring relationships. You can too because you’re much more than a few dodgy cells in your blood!

Newdawn

It feels terrible now, but if he's looking to move on because of this, he wasn't a good long term partner for you. You deserve better.

He just is distant and not wanting to progress anymore than what we have. So it would be nice due to my living arrangement to have him let me move there and help me if the day comes that I need treatment. We’ve always talked about doing that anyways before my diagnosis because we were always together. But now that’s off of the table. Which breaks my heart. I know I deserve better. But in turn I don’t want to be alone and I do love him very much and I don’t think I can dea with a heartbreak at this point I just need to find somewhere to live on my own and try to focus on other things vs CLL and money and my relationship. Just a yucky feeling with everything going on. Thank you for your support and hope you are well

That’s how my dr felt my spleen because my stomach is so thin and that’s when I asked you if you could feel yours. Ugh. I’m setting goals and trying to be patient and positive and pray everyday I can live at least another 30 40 years with this. The unknown is the worst

Hello Madison,

I have always had the opposite problem to you and am constantly hungry.

Fortunately i eat very healthy otherwise i would be obese. I actually practice calorie restriction with optimal nutrition, but only mildly. I find my weight goes up daily if i snack.

if i were you i would put out a certain amount of snacks which you like , and make sure you nibble these between meals. i love seedy bread and in Australia we have rice and corn cakes which are like a cracker and you can put whatever you like on them. i had to stop as i was eating a packet a day and putting on weight. Make the snacks available and visible to remind you. I realized a while back some days i never drank any water only tea and coffee, now i put out a two litre jug of water and ensure its finished each evening.

So guess its the carbs which will add to your weight and perhaps use a healthy oil daily like olive oil to increase calories.

I have suffered anxiety in the past and panic attacks where i would awake in the middle of the night and get in an awful state. I didn't take medications , though i tried , because i always felt more anxious when they were wearing off, though of course they can help along with anti depressants if your Dr thinks you need them.

Have you tried positive affirmations , where you write on bits of paper and stick them in the loo and around the house , and read them frequently especially before sleep.

ie things like I am calm and happy. ... I am in control of my health ... I will not worry or i will live a long life , ...I am strong and will deal with this.....and such things as pertain to you. i found them helpful when i had anxiety and confidence issues.

The people on this site are really lovely and supportive and all in the same boat as you ,

Good luck giving up smoking and sending you positive thoughts , Paul

Eat pies. Drink beer. :-)

Newdawn
NewdawnAdministrator
in reply to SOLLYTHEGOLLY

Now I know where I’m going wrong! 😀

Newdawn

I actually like beer more than wine