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loss of appetite question

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loss of appetite question

Postby starbuck30 » Sun Jul 11, 2010 8:16 pm

Ok, so I just had my 7th tx of Folfox and I'm having an issue. I'm not really nauseous, but I've almost completely lost my appetite. I have a pretty big breakfast because I'm hungry in the morning, and then throughout the day I want nothing. I eat dinner, but it's pretty light. Maybe some soup. I'm BARELY keeping up on my fluids (I know, I'm a hydration hypocrite, I hate it), but I'm more worried about the eating right now. I'm definitely going to talk to my onc about it, but I was wondering if anyone might have some suggestions to help improve my appetite or that I might mention to my doc? I just can't seem to work up an interest in ANYTHING and it's killing my energy and I'm worried about how it may be effecting my treatment.

Many thanks in advance and much love to all,
Starbuck
2/26/10 Dx'd colon cancer
3/12 complete colerectomy, temporary ileostomy
3/19 pathology came back Stage IIIC CC
4/2 started FOLFOX
Chemo "precautionary", last CT showed NED PLEASE God let's keep it that way
9/16/10 FOLFOX finished! Woo hah!
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Re: loss of appetite question

Postby Bev G » Sun Jul 11, 2010 8:38 pm

Hi Starbuck:

It's a question near and dear to my heart. I actually sort of lost my appetite about a year before I was diagnosed (should have been another warning sign, but that's another story). I had NO appetite from the time of my colon resection in December. This was probably attributable to absolutely constant nausea with no time off between chemo. I have prescriptions for six different anti-nausea meds, the only one that helped even a little was Zofran (they did give me Emend prior to chemo and for 2 days after). As a result of this, I have lost 50 pounds since December and am pretty malnourished. Fortunately I had the weight to lose, but of course, this is the worst possible way to lose it. I am now back to my high school/college weight :roll: The nausea finally went away about two weeks ago when I was discussing the problem with one of my three liver surgeons and mentioned I had stopped taking prilosec after my colon resection because my GERD had magically gone away (had been on that or similar meds for 15 years) She explained how GERD could sort of magically morph into nausea!!! I couldn't believe it! I can't count the number of docs who knew I had stopped taking Prilosec (including my at-home genius--who of course claimed he had "no idea" I had stopped it :shock: ). So after all these months, I went back on Prilosec, and ta-da, nausea is essentially gone. Go figure. I'm telling this in case anyone who is nauseated had a prior history of GERD and may want to try Prilosec. I swear it was like a miracle.

Anyway, as far as your loss of appetite, try to make sure every thing you eat is chock full of calories. Don't eat anything that will fill you up without any calories in it. Consider superforifying your milk, if you are drinking milk. You do this by mixing dry milk into your milk. It will significantly increase both calories and protein. Keep your jar of peanut butter on the counter and try eating a tablespoon or two of it each time you walk by. Even though veggies are great, forgo some of them to keep your protein and carb intake up. Don't know how you feel about cannabis, but that can help appetite a lot, and you may already know. At this point, if something seems good, even if it's total junk food, eat it. I'm a big fan of Cheetos these days. No idea why, but at this point I am eating ANYTHING that I can think of that sounds good. Also, try eating really small, frequent meals.

Can't think of anything else right now, but I'll let you know if I do. Good luck, sweetie.

Love, Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now
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Re: loss of appetite question

Postby ams5796 » Sun Jul 11, 2010 8:50 pm

Starbuck,

I remember when I was on Folfox I also lost my appetite and I had a lot of trouble drinking because of the cold sensitivity. My oncologist was much more concerned about me getting my fluids in than about my food intake. Hydration is critical. My kidneys almost shut down and I ended up hospitalized due to dehydration at about my tenth treatment. I also had infusions of fluids many times. So, drink up. I'm not sure you have to worry too much about your food intake if you are eating somewhat and not losing too much weight. My oncologist told me to eat whatever I wanted.

Ann
Stage 3C Rectal Cancer 01/07
6 wks 5FU and radiation, colon resection 5/07,
FOLFOX with Avastin
reversal 1/08
2/10 lung mets
7 months of Xeloda
3/11 VATS
6/11 VATS
NED
7/13 lung met
2/14 SBRT
NED 8/14
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Re: loss of appetite question

Postby Bev G » Sun Jul 11, 2010 9:14 pm

Hi Starbuck:

It's a question near and dear to my heart. I actually sort of lost my appetite about a year before I was diagnosed (should have been another warning sign, but that's another story). I had NO appetite from the time of my colon resection in December. This was probably attributable to absolutely constant nausea with no time off between chemo. I have prescriptions for six different anti-nausea meds, the only one that helped even a little was Zofran (they did give me Emend prior to chemo and for 2 days after). As a result of this, I have lost 50 pounds since December and am pretty malnourished. Fortunately I had the weight to lose, but of course, this is the worst possible way to lose it. I am now back to my high school/college weight :roll: The nausea finally went away about two weeks ago when I was discussing the problem with one of my three liver surgeons and mentioned I had stopped taking prilosec after my colon resection because my GERD had magically gone away (had been on that or similar meds for 15 years) She explained how GERD could sort of magically morph into nausea!!! I couldn't believe it! I can't count the number of docs who knew I had stopped taking Prilosec (including my at-home genius--who of course claimed he had "no idea" I had stopped it :shock: ). So after all these months, I went back on Prilosec, and ta-da, nausea is essentially gone. Go figure. I'm telling this in case anyone who is nauseated had a prior history of GERD and may want to try Prilosec. I swear it was like a miracle.

Anyway, as far as your loss of appetite, try to make sure every thing you eat is chock full of calories. Don't eat anything that will fill you up without any calories in it. Consider superforifying your milk, if you are drinking milk. You do this by mixing dry milk into your milk. It will significantly increase both calories and protein. Keep your jar of peanut butter on the counter and try eating a tablespoon or two of it each time you walk by. Even though veggies are great, forgo some of them to keep your protein and carb intake up. Don't know how you feel about cannabis, but that can help appetite a lot, and you may already know. At this point, if something seems good, even if it's total junk food, eat it. I'm a big fan of Cheetos these days. No idea why, but at this point I am eating ANYTHING that I can think of that sounds good. Also, try eating really small, frequent meals.

Can't think of anything else right now, but I'll let you know if I do. Good luck, sweetie.

Love, Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now
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Re: loss of appetite question

Postby joeyooser » Sun Jul 11, 2010 9:24 pm

I guess I can't recommend living on ice cream :D but how about things like pie and greasy baconators from wendys. I took it as an opportunity to eat the crap I couldn't usually eat because I used to pack on weight so easily. Warm Gatorade was also oddly appealing for me.
Tim
Stage IIIc - 9/23 lymph nodes, poorly diff, 35yo father of 2.
Lap resection Jul 28 09 resulted in near-deadly leak
Finished chemo Feb '10; Takedown March '10;
Nov 2010 - carcinomatosis
May 2011 - Clinical Trial, failed out of trial, in hospice care
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Re: loss of appetite question

Postby wwroam » Sun Jul 11, 2010 9:43 pm

Though I was never nauseous ( thanks to Kytril) and having only a few cold food problems ,I also had major appetite issues. Breakfast cereal, bread, cheesy food( lasagne) and fried foods were completely unpalatable. I experimented a lot and managed to find things which were OK. Slightly acidic ( eg tomatoes) , full flavored , slightly spicy were all OK. I ate dhall ( a mild Indian lentil curry) at least twice a week. And a good deal of ice cream. Rice and pasta were also OK.
Stage 3a DX 25/06/07
Folfox complete 30/01/08
7 years NED
Port scheduled for removal 8/02/10 Gone.
PSA .54 No prostate problems
Diagnosed Type 2 Diabetic
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Re: loss of appetite question

Postby SkiFletch » Sun Jul 11, 2010 10:18 pm

joeyooser wrote:I guess I can't recommend living on ice cream :D but how about things like pie and greasy baconators from wendys. I took it as an opportunity to eat the crap I couldn't usually eat because I used to pack on weight so easily. Warm Gatorade was also oddly appealing for me.


Oh I hear that Joy, I ate triple baconators during chemo, forget the singles :D. I had lost so much weight through my disease (duh, should have been a tipoff) and then surgery that I was down to an emaciated 160lbs at 6'4". So baconators became my friend. Same with multiple 1/2lb burritos for lunch.

Starbuck, do you struggle with appetite constantly, or just for a few days on the cycle. I pretty much ate next to zero food on the evening of day 3 through day 4. But it was OK cause I did take my vitamins, and the baconators helped juice me back up. So if it's only a couple days, don't sweat it. If it's longer, consider trying to entice yourself with really spicy/flavorful foods. I know my lack of appetite was directly tied to my lack of sense of smell, so the more flavor a dish had, the more apt I was to eat it. Crazy spicy/flavorful mexican and indian became my best friends in that regard. I remember Kelly tried to feed me hot dogs on day 3 around my 3rd treatment or so, I couldn't stomach them. Too bland for me.
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D

"Can any one of you by worrying add a single hour to your life."
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Re: loss of appetite question

Postby Sinfulsot » Mon Jul 12, 2010 6:52 am

focus on the fluids. eating will come. and if you are already chowing down on a big breakfast, i repeat "focus on the fluids"
And now something so wonderful, you could get wonderful poisoning.
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Re: loss of appetite question

Postby helen098 » Mon Jul 12, 2010 9:12 am

I could also only eat breakfast then the rest of the day I just couldn’t get much food down
My onc said eat as much as you could when ever your could
For breakfast I had (every work day) 2 eggs with bacon and cheese on a toasted buttered roll, a banana
The small kiddy milk and OJ (once they warmed up of course)

Lunch was ¼ to ½ of a sandwich and water
Dinner was a tiny piece of meat and some potatoes and a spoon full of veggies

I ended up in the hospital with the above diet so I don’t recommend you follow it

After the hospital I hate the same but forced down the liquids warm v8 before my nap, warm milk (whole milk) and OJ after my nap
A ensure before bed , a banana and a glass of juice when I woke up in the middle of the night and while
I held on to 152 I didn’t end up back in the hospital

junk/fast food had no appeal to me and I didn't want to risk the empty calories
though before the hospitilization I craved salt

Good luck
stage 3A surgery 6/6/6 finished chemo jan 07
11 5FU/12 Levcouorin/10oxaliplatim
port removed jun 07
anal fistula surgery oct 05 may 07 feb 08 sep 08 jun 09
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Re: loss of appetite question

Postby Ivona » Mon Jul 12, 2010 10:08 am

Been there done that....LOL.... :lol:

You are ahead of the game by the fact that you can eat breakfast! Good for you! While on the pump, I too had a hard time facing food. For me, starchy bland foods sat well. I couldn't even LOOK at meat or dishes with meat let alone eat any of them. Hubby did a lot of solo suppers! LOL!! I was able to force myself to eat mashed potatoes, toasted crumpets or english muffins with cream cheese.

Look into cannabis or marinol if this continues to be a problem for you. Keep up the fluids tho! (yea, I know...easier said than done!)
dx'd Oct '08 (age 48)
T3bN2Mx
9/23 LN's
resection Nov '08
Folfox Jan '09 - March '09
Xeloda March 24/09 - July 6/09

"Yesterday is history, tomorrow is a mystery, but today is a gift. That is why it's called 'the present'. "
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Re: loss of appetite question

Postby Anonymouse » Mon Jul 12, 2010 11:42 am

I would gorge on fast food when I could eat, breakfast at Mcd's was very common for me during cycles. I still continued to lose weight none-the-less, mostly because water was so hard for me to put down, warm and tepid just wouldn't jive with me. I did a lot of mighty shakes mixed with chocolate milk when I could drink something.

For 3/4 of chemo, the only foods that didn't taste like metal to me were spicey foods, chinese/mexican were my choices. But for the last, everything tasted like metal. I'm 7 weeks off chemo and still dont have the best appetite yet, only up 10 pounds.

Best of luck!
Dx 9/2009 with 2 cancers in colon
KRAS wild,HNPCC/Lynch Syndrome (MSH2)
T3,N1,M0 Poorly differentiated Signet Ring
Total colectomy with ileorectal anastomosis 10/2009
FOLFOX complete 5/2010
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Re: loss of appetite question

Postby hopeful » Mon Jul 12, 2010 12:20 pm

My husband was never hungry when I would ask him what he wanted to eat. But if I started making something and set it in front of him, he'd eat the whole thing. Or, we'd go out to lunch and, looking at the menu, he'd always find something he wanted and he'd polish off the whole thing. When all else failed I'd go get him a foot long Subway sandwich and he always ate it. Not being the one on chemo, I don't know what it is, but there seems to be a disconnect when it comes to appetite. It's like he's never "hungry" until there's a suggestion of a specific food or it's sitting there in front of him. It's so weird about the Subway thing. When my sister was going through chemo for breast cancer 10 years ago, that's the one thing she was always hungry for. Sublimital advertising maybe? :?:

Starbuck, maybe you could look up restaurant menus on the internet and the suggestions would make you hungry. Just a thought.
Caregiver to husband diagnosed 11/09 stage IIIb colon cancer
Surgery 11/5/09
12 rounds FOLFOX beginning 12/18/09
Folfox finished 6/3/10
Last scan Jan 2014
NED since Dec. 2009
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Re: loss of appetite question

Postby starbuck30 » Mon Jul 12, 2010 2:29 pm

You guys have given me a LOT of great suggestions and once again I'm incredibly grateful for the help. My onc is prescribing Megase (sp?) to help stimulate my appetite. She said they've had a lot of luck with it and it has very few side effects, so I'm hopeful about that.

It's funny, everyone seems to be trying to get me high. Feels like high school all over again. :) Alas, neither cannibis nor Marinol is an option for me as I get ridiculously sick off both. The quality of the pot never seemed to make a difference, either. I think I said this already but grade A government grown pot, and the nasty, seed-filled skunk weed I'd buy from the skinny jack-ass that would sell behind my old high-school got me equally, messily sick. I guess I'm kind of weak-sister when it comes to drugs. I couldn't take my oxycodone after surgery either. Had to settle for Aleve.

At any rate, I'm hopeful this Megase stuff works and that's the end of that. Thanks again for all the help and suggestions. I love you guys. :D

Much love to all,
Starbuck
2/26/10 Dx'd colon cancer
3/12 complete colerectomy, temporary ileostomy
3/19 pathology came back Stage IIIC CC
4/2 started FOLFOX
Chemo "precautionary", last CT showed NED PLEASE God let's keep it that way
9/16/10 FOLFOX finished! Woo hah!
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Re: loss of appetite question

Postby Anonymouse » Mon Jul 12, 2010 4:55 pm

Well, I'll say it. Cannabis was a godsend to me. I was allowed by the state to use it and I had it delivered to my house for a fair price. My onc had given me marinol and I hated it, made me very dizzy with a lot of anxiety and I didn't end up eating anymore as a result of it.

Many people I shared recliners with at the center felt the same way about it, I since learned a lot about what different kinds work medically and what kinds don't and how to cultivate it using organic methods.

Obvously it has legal and ethical implications, but when it came to my ability to eat, I didn't care what the federal government said.

I favored it mostly because to me, it's not a drug. It's a plant, not manufactured, processed from one form into another but good just as God made it.
Dx 9/2009 with 2 cancers in colon
KRAS wild,HNPCC/Lynch Syndrome (MSH2)
T3,N1,M0 Poorly differentiated Signet Ring
Total colectomy with ileorectal anastomosis 10/2009
FOLFOX complete 5/2010
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Re: loss of appetite question

Postby Phuong » Mon Jul 12, 2010 8:40 pm

I've always been light (normal for me was 105), but I was down to 80 lbs when I was dx'd. I had a real uphill battle to fight and I HATED protein shakes because they taste so awful. My husband tried everything with them, including ice-cream in the shakes. It was still horrible. So when a friend of mine suggested Isagenix I was really hesitant to try it, but when you get desperate enough I guess you'll try anything. I found that not only was it tolerable, I loved it. Drinking 8 oz of a shake is much less daunting than eating a full meal. They have all sorts of yummy fruit and energy powders that can be mixed in too. Message me if you want more info and I'll put you in touch with my friend. Good luck - I hope you find something that works for you!!!
Phuong
http://sonofamotherlessgoat.net/
Stage III Rectal (T3 N1 M0)
6/07 dx
Chemorad
11/07 Colon resection
Folfox
11/08 liver resection
Folfiri
3/09 lung resection
5/10 PVE
8/10 Hepatectomy (2nd liver met)
NED :)
12/12 Boo...it's back.
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