I was taken off chem last December, and was on Tarceva for only one month. In March I had 2.5 weeks of radiation.
Since after finishing radiation, just about at the end, I've been nauseaus whenever I smell food. Even when I just think about eating.
I can take an anti-nausea tablet, which stops the nausea, but I rarely have any appetite.
Since March I've lost 8kg.
My sense of smell is also terrible. I smell burnt food when it isn't burnt, and so many things that should smell ok smell bad to me. Just smelling food cooking makes me feel sick.
I'm really worried about this now, and although I'm seeing my oncologist this week, I thought I'd post it here and see if you had any opinion on when this might go away, or if this is just normal.
BTW, although I've lost weight, I'm still over the healthy weight for my height.
Reply # - May 12, 2014, 06:02 AM
Reply To: I need help, my appetite never came back.
Tarceva can cause loss of appetite and so can radiation, especially if it touched part of the GI tract. Whatever the cause, there are a number of ways to try to combat it. Taking your anti-nausea medication on a schedule, rather than waiting for nausea to develop first, can be very effective. Also, eating smaller, snack-size meals is better than larger meals, and you may need to experiment to find foods that are appealing (and you may need to think outside the box; a number of GRACErs have settled in on some pretty strange choices!) Drinking Ensure (or a similar product) can help, as can appetite stimulants such as Megace.
GRACE member Debra (double trouble) had these suggestions:
"I will add to the applause for Ensure. I tried the other brands and they all taste like vitamins. Ensure is the only one I like. They have several flavors, and now there is a Clear Ensure that is like fruit juice. I’ve tried the apple and it’s not bad. Sometimes you just don’t want a shake.
My appetite has been turned on by some meds, off by others, and when it is pretty normal I have that heightened sense of smell/taste too.
I stick to mostly fruits and veggies, some grains like kinoa and bulgar wheat, and I need more protein but I’m a little turned off by meats, beans and eggs. Used to love them all but having trouble digesting them now.
I also find that the most simply prepared foods are the best for me. The more fussy, the less I seem to like it.
Also, you might consider a protein powder in smoothies or juices. It does have a flavor all its own so you probably either like it or you don’t, but I have lived on smoothies at times. My favorite, ginger peach!" - http://cancergrace.org/topic/tarceva-and-appetite#post-1256689
You might also want to check out these posts:
http://cancergrace.org/forums/index.php?topic=11387.0
http://cancergrace.org/forums/index.php?topic=5464.0
Good luck!
JimC
Forum moderator
Reply # - May 12, 2014, 06:13 PM
Reply To: I need help, my appetite never came back.
I don't have a good answer. I become concerned that weight loss is from the underlying cancer if someone is continuing to lose weight when not on chemo, but it's somewhat reassuring if the cancer doesn't show any signs of progression on scans.
You'd generally expect taste changes from prior treatments to gradually diminish after a few weeks to months, but there CAN be a long tail on that.
One other thing that might be worth checking is a brain scan, just to ensure that the weight loss and taste changes aren't from something brain-mediated, rather than tongue- or stomach-mediated issues.
Good luck.
-Dr. West
Reply # - May 15, 2014, 01:38 PM
Reply To: I need help, my appetite never came back.
I agree with Dr West - it is not uncommon for cancer itself to produce problems with malaise, fatigue, lack of appetite, weight loss. It may also be reasonable to check for endocrine problems, like cortisol or TSH. Hope this helps.