I've been done with treatment since 6/07, the G tube was yanked in September. My family and friends have all become obsessed with my weight and how little I eat these days. I simply have no appetite - I don't feel hunger no matter how few calories I eat during a day (I'm LUCKY to get in 750-1000 a day). I have my taste back, I mechanically have no problems eating (other than dealing with the dry mouth) - I just have no interest in eating. If I get busy, I will completely forget to eat and won't even realize it until my energy level crashes. I wasn't overly concerned myself with the weight loss until I stepped on the scale at my rad onc appointment last week and saw that I had lost 15 pounds since my last appointment 3 months ago. That brings my grand total to 75 pounds of weight loss since 5/07 (thankfully I had some weight to lose). On the BMI scale, I can lose another 10 pounds before being considered "underweight."

Has anyone else had this issue? I'm worried that if this cancer pops back up I'll have absolutely no reserves left to fight with. My scan results the other day show two "pulmonary densities" - one in each lung - 7mm in one and 9mm. Of course I'm panicked about whether or not they are mets...I see the doc again on 12/27...

Lisa,

Your body has been brought to a near death state and it will take many many months for it to recover. Has your docs checked your thyroid levels, I had to start taking thyroid meds appx 8 mos post Tx which I was told is about the time it takes for thyroid damage to show up.

I too went thru a long period being able to eat but just not enjoying it so I really didn't care to eat. I maintained my weight by drinking Carnation VHC. If your not familair with it here's a repost I made long ago:

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Try Carnation Instant Breakfast VHC. It has 560 nutritional balanced calories in a 8 oz can and will cut the misery and the time in feedings. You order it thru your pharmacy dept and some have suggested that if you get a prescription for it, your insurance company will pick up the tab. I only pay about $32.00 per 24 can case at Walgreens. That's only $5.00 a day for 2000 calories. Click on this link:

http://www.nestle-nutrition.com/family.aspx?objectID=86E49EB3-BE25-4B16-81D7-235E6F6E5183

Under the PURCHASE PRODUCTS tab, select FIND A PHARMACY NEAR YOU.

Under the PRODUCT NAME pull down, select Carnation Instant Breakfast Lactose Free VHC and fill in your zip code and they will give you a list of pharmacies that carries it.

At the top of that list note the Product Code and NDC Number in case that helps you when you call the store. When I call Walgreens it only takes a day or 2 at the most to get it delivered to the store and they call me when it's in.

You can also order it online but it usually costs more and takes much longer to get.

No, I do not work for the company nor do I get a commission (I wish) but this product made my feeding life during and post treatment much much easier and I am sure it will do the same for you.

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Now I'm 16 months post Tx and riding over 100 miles a week and eating 3 meals a day and still not gaining a pound. I lost about 30 pounds during Tx and I didn't really have a pound to spare and I have only put back 10 of those pounds. Most people that see me for the first time say " Oh, you've lost weight". My wife, my office mgr, my mother in law, etc all want me to gain weight BUT I don't want to. I feel great; I ride better but I do look skinney compared to pre Tx. I have started drinking the VHC again to see if that may help calm the females down.

One problem I ran into was I was eating all the bad foods trying to put on weight only to have my blood work show higher than normal cholestrol last time so the conundrum is how can you add weight without eating fatty foods. I'm been told to drink protein shakes but I'm going to try the VHC first.

Hi Lisa, I had a similar course of treatment around the same time as you. It did take me a long time to get back to eating a sufficient amount to keep my weight up - I kept feeling full on fairly small amounts.

In my case the motivation to push myself and eat more and more was that my PEG tube wouldn't be removed until I could take enough nutrition orally to keep my weight stable. I wanted shot of the tube badly, so I pushed myself to eat a bit more each day until I got back to a normal (for me) amount of food.

Part of the problem is that something which used to be a pleasure has become a bit of a chore, so we need a bit of an extra push to stick to the routine. I just stuck to set meal times and had a goal for each day to eat a certain amount, gradually working up to where I needed to be.

Three months is along time to wait to check your weight I think - maybe check it every month, that way it'll be a reminder to stick to the regime?

I noticed since I got my peg tube out, my appetite has come back pretty strongly. Now I'm back to eating as much as I did before the illness.

Hope things work out OK at the docs,

John

I only eat unprocessed foods and now can't stand the taste of meat - so yes, it is very difficult to get enough calories in without resorting to the "bad for you stuff." It takes one heck of a lot of veggies and unsweetened organic yogurt to maintain my weight!

Unfortunately I do not tolerate any of the liquid supplements like Carnation very well - one of the reasons why I lost so much weight even with the G tube in. I throw up ANYTHING like that - I have a sensitivity to milk products and ended up having to use only clear liquid supplements (which are nasty, taste disgusting - even though they went in the G tube I had the pleasure of throwing them up immediately after at every feeding).

I do weigh myself at home every couple of days - so I knew that I was losing weight, but it didn't register that it was so much until I was at the doctor's office. I'm used to always weighing more fully clothed on their scales than I do at home!

My weight was holding its own when they took out the feeding tube - it has really only been over the past 6 weeks or so that I've noticed that I've been absolutely disinterested in food.

I would think that thyroid problems would be hypothyroidism, right? In that case you would normally have weight gain instead of weight loss - but it is probably time to get that checked out too.

My nagging fear is that I have anorexia secondary to lung CA - I keep praying that those spots in my lungs are nothing...

Lisa,
how about soy based "milk: products? That might be an alternative.

Re food lethargy.... yes I have that too same with the red meat aversion. I tolerate seafood much better (especially shrimp, salmon and stuff like that).

Best

M

Lisa,

Find foods that you "like" or at least tolerate more than others and eat them all the time. You must push yourself to do something that used to be a pleasure and now is just another chore. I have found that as my dry mouth improves, as it will in small increments, that foods I once found intolerable are now almost like they were before Tx so if you don't like something today, try it in 6 months and then another 6 months. Just don't give up. It does and will get better. I promise.

Hit the reply to soon.

What part of Fl are you in and where were you treated??

Hi David,
Thanks for the advice! I live in Sanford, FL (about 30 miles from Orlando) and I was treated at MD Anderson in Orlando. How about you?! Where are you?!
Lisa

Lisa,

I live in a tiny "throw back" town, probably like Sanford, called Gulfport which is on the water next to St Petersburg.

I was treated at Moffitt in Tampa about 40 miles away so I drove it probably like you.

Hi David - I've heard of Gulfport - we like to vacation in St. Petersburg and have family there too - so we are in that area every so often. Yes - made the drive to Orlando every day for my 6 weeks of radiation not to mention all of those other appointments they seem to keep you running for!
Lisa