I was diagnosed with stage four tonsil cancer, HPV+, with lymph involvement. I did not have a PEG at the recommendation of my team. Cisplatin once a week and 38 radiation treatments. Swallowing was difficult at times and all taste was gone but I was still able to drink ensure and eat some food. I lost 23 pounds from a 5'7" frame. The treatment was brutal but doable and I had my first clear pet scan 3 months ago. I still cannot tolerate sweets or most bread but most things are coming back taste wise. I am not putting any weight back on yet and were not sure if it is because I don't eat anything bad now or if its something else.

Your metabolism will take a full 2 years to adjust to what you have just gone thru. Recovery from cancer treatments takes that long to completely heal. Since you didnt have a feeding tube your nutrition and calories were probably substantially less than what it should have been which is why you lost 23 pounds. It will take time but you will get back to normal eventually.

I would take in 7000+ calories a few days a week drinking 2 or 3 chocolate peanut butter milkshakes. Even with calories that high, I didnt gain an ounce. Every day you still should be taking in 2500 calories and 48 oz of water. To help heal quicker try a high protein diet. Of course you will want to discuss this with your physician first.

Welcome and best wishes with your continued recovery.

[quote]I would take in 7000+ calories a few days a week drinking 2 or 3 chocolate peanut butter milkshakes. Even with calories that high, I didnt gain an ounce.[/quote]If only you could fully taste and enjoy all those calories!

Don, I was able to taste the milkshakes. Thats why I drank so many of them. They were good!!!!

Welcome, and congratulations on a clear scan! Weight loss, weight gain, can be problamatic and have multiple factors in cancer patients, and other illnesses, which I addressed on another thread pasted below. I don't know all your particulars, nor am I a medical professional, so seeing them is best, and may include different doctors and therapists, such as pain management, speech and swallow threapist, counselor, nutrionist, dentist, endocrinologist, hematologist. Increaasing calories, sometimes is not enough, and may not be in lean body mass, and other meds such as anaoboilic steroids, corticosteroids, appetitie stimulants, vitamins, melatinin, omega 3 fatty acids, and other nutrional intervention, exercise, is needed, to name a few.

"I have looked into this area, probably more than most, having suffered from cachexia or wasting, losing 110 pounds in one month, 50 percent of my body weight, having weighed 100kg at the start of treament, which nearly killed me, and has taken me three years to gain 40 lbs back. It's not the same as normal starvation, and takes a long road to recover, and usually not just by increasing calories, medications, which may increase body weight, but not lean body mass.

Cachexia, wasting, anorexia is very complex, and multi-factor. It is one of the worst effects of cancer, and accounts up to one third of cancer related deaths. There are many studies with this effect in cancer patients, and other illnesses. The complications associated with this, effects physiological and biochemical balance and influences the effects of cancer treatment, resulting in decreased survival time, QOL, and overlaps chronic infection, surgery, tumor, metabolsim, thyroid, hormones, glucose, energy, nasusea, acquired taste aversions, depression.

Early and appropriate nutrional interventions hold promise of improving the ability to undergo and tolerate treatments, including radiation, chemo, and surgery, and other forms. In contrast to normal starvation, cachexia is the advanced state of wasting marked by excess loss of skeletal muscle, muscle mass relative to body weight. Normal starvation is adaptive, and weight loss occurring gradually, beacuse of decreased caloric intake, with relative maintenance of lean body mass at the expense of body fat as an energy source. Bacause of metabolic and nutrional effects accompying advanced cancer, these adaptions are inhibited or impaired leading to advanced malnutrition, and life threatening cachexia. Certain forms of cancer are marked with weight loss at time of diagnosis, and Head and Neck cancer is one, mine was 25lb at diagnosis, so I really lost total 135lbs. Overall, malnutrition varies from 30 to 87% of patients, 5 percent of unintentional weight loss is considered late effects of cachexia. Anorxia, effecting 14-40% of patients, at time of daignosis, has a role in weight loss, but cannot explain all the loss."

Good luck.

I lost over 30 lbs on my 5'7" frame and post Tx I was consuming appx 3000 cals a day and during my first year PT I didn't gain a pound. I slowly started to add back weight in my 2nd year and now weight the same.

Hi there... I too was in a similar position weight wise. I haven't gained it back either other than say five lbs. That's because I don't eat garbage at all. Diet change makes a big difference. However, there are healthy high calorie foods you can eat that will help with the weight but still be nutritious. best of luck.

Congrats on coming through a very tough treatment and especially on the clear scan. You're a hero.

We all lose weight and most of us go through weird taste changes. Some never seem to gain it back, myself included. But you do say that most things are coming back and that's great.

Keep eating and most of all keep the positive attitude! At three months post scan you're over the worst. Oh and did you have your thyroid levels tested? Might not be a bad idea.

Welcome to the family. We're glad you found us.