Hi All! I am 2 months shy of a year out from end of treatment but I am wondering when or if I will gain weight again. What has been the long-term experience of folks here? I know most or all of us lose a bunch of weight when we go through the treatments and I was no exception. But it has been months since I have been able to eat again and I'm eating 1900+ calories a day (according to my nutritionist I should be eating 1500-1600 per day to maintain my weight), so why am I not gaining any weight? Doctors simply shrug and tell me to eat ice cream. It's frustrating advice because: 1. calories isn't the problem; 2. sugar tastes like salt to me so ice cream is disgusting; and, 3. ice cream is not healthy so why are they telling me to eat crap?

Don't get me wrong, if this is my new normal, that's fine. I'm too thin right now (I'm not even on the BMI chart), but there are worse long term side effects, so I'm not complaining. I just want to know if I should go ahead and buy clothes that fit now or just keep getting a few things from the thrift shop and cinching my belt. If I'm going to gain weight again soon, I will not buy new clothes. If this weight is something I am likely to maintain for awhile, then I will get new clothes. What has been your experience?

Thanks in advance!

Welcome to OCF! Its always great having OC survivors join our ranks

As far as weight gain goes, just remember everybodys different. You will see this over and over as it really does pertain to so many things with oral cancer (OC), recovery, etc. At 10 months post rads, you are still in the recovery phase. It takes OC patients/survivors an entire 2 years post rads for a complete recovery. Your body is still burning up calories at an incredibly increased rate trying to heal itself from your treatments. That means you are probably like most of us and struggle to take in enough every day. Losing weight on a long term basis for some is very dangerous! They arent just losing body fat and water, they're losing energy and muscle too which can be next to impossible to build back up. Muscle wasting from cancer/malnutrition is a serious condition called chaxia. OC patients normally should be taking in at least 2500 calories and 48-64 oz of water every single day until at least they hit their 1 year post rads mark. Even better is if they continue taking in 2500 calories and 48-64 oz of water daily right thru until you hit your 2 year anniversary of completing rads. Your sense of taste and for most patients having a dry mouth are the final things that bother most OC patients. You should notice small improvements up until the 2 year post rads mark, some patients will have this happen even 28 months post rads. After what our bodies go thru fighting the cancer, the barbaric treatments, significant weight loss (major sign of patient being malnourished), etc it takes a LONG time to bounce back. Not a single OC patient can get well and back to their normal life as quickly as they think they should. Dont be surprised if you hit a few roadblocks and some setbacks during recovery. Unfortunately thats just all part of the very long process of eliminating the cancer and rebuilding your body.

Back when I went thru rads, many days I took in 7000 (some days higher) calories by drinking giant chocolate peanut butter shakes that packed at least 1500 calories in each one depending on how I made them. I had been concerned I wasnt gaining any weight even with taking in so much. One day after I counted up the calories in the shake and was shocked to learn just how many were in there, I did a little test. For a week I took in at least 7000 calories each day. My extra high calorie dairy laden diet sure surprised me when I didnt gain an ounce. I was about 8 months post rads and just like all patients, I thought I should be 100% better..... NOPE!!! After losing so much during rads by being malnourished and dehydrated a few times, I struggled to maintain my weight. It took me 10 years before I was able to gain anything and then it was only about 20 pounds so I didnt look so anorexic. I should add, I also have all kinds of stomach issues (with severe nausea/stomach aches/constipation/diarrhea to name a few of the problems) making me very ill where taking anything in and keeping it in is a major challenge. Currently Im struggling to maintain my weight again after my stomach issues that bothered me for 4 or 5 months causing me to lose 20-30 pounds within a couple weeks the end of last year. Thats not something every OC patient/survivor runs into, its just me and my rotten luck. Ive known many OC survivors who a year and half to 2 years post rads they began to ease up on their daily minimum intake of 2500 calories due to seeing slight weight gains. Ive only met 2 OC patients/survivors who gained a couple pounds when going thru rads. I dont know how they did it cuz a couple times during my rads and recovery I was sicker than a dog and not able to keep anything down, sometimes for days.

I suggest doing a test like I did. If you are holding your weight steady and not having any major health issues at 10 months post rads, try increasing your daily intake to 2500 calories every day for a week. Check your weight and see if you gain anything. If you gain weight then you know you're doing a great job with your recovery and you can try focusing on eating a healthy, well-balanced diet. If you dont gain anything then be patient, you arent even to the half way point of your recovery so it might take a little while longer.

Many OC patients also have long-term issues with their bloodwork numbers being way off for a long time after finishing treatments. This is especially true for the patients who had chemo along with their rads. That takes many months possibly years to come back to being close to what the numbers were before cancer and treatments. Rads can affect the thyroid too where most OC survivors end up taking meds to stabilize it. The wacky thyroid numbers hit me a few years after rads. Thats actually one of the easiest things to fix and control. To me, its no big deal taking a tiny pill every morning.

Heres a link to Livestrong article about cancer patients and weight. They have several others Ive read which were informative and helped me to better understand my weight loss and why I wasnt gaining anything back. Best wishes with your continued recovery!!!

Livestrong, Cancer Patients Weight Gain

Wow! thank you so much for the thoughtful, thorough reply!!! I really appreciate it! Why haven't any of my doctors told me this stuff? I've certainly asked ... multiple times! I don't like that they just tell me to eat junk food. I'm trying to create new, healthy eating habits to get and stay healthy. I have also been exercising (which I never did before). I will take your advice and up my caloric intake a bit more. I was bigger than I should have been before all this happened, so I don't want to get back all of my old weight, but another 10 or even 20 pounds wouldn't hurt me at this point. I went from a size 14 to a size zero. Yikes! Which is why I posted this question. It sounds vain to ask about clothes, but this is truly a practicality issue. My old clothes literally fall off of my body. I had to buy a few things to look respectable at work, but I don't want to go crazy with a whole new wardrobe if I'm likely to gain a bunch of weight back. On the other hand, I don't want to buy things that are a little baggy, thinking that I will "grow into" them later, if I am going to be this size for the rest of my life. I wish I had the money to buy all new stuff every year, but I don't. I guess I'll just continue to pick up a few things from the thrift shop to get me through each season. After 2 years or so, hopefully I'll have a better handle on my weight and can feel better about buying nicer things.

You are SO right about not getting better as fast as I think I should! I keep thinking I should be better by now (less fatigue, normalizing weight - I know the mouth issues are not likely to ever go back to 100%), but my oncologist, radiologist, and ENT, all said I am doing great. I wish one of them would have said that it takes up to 2 years. That takes a lot of the pressure and stress off of me, as I tend to have high expectations and get frustrated with myself when I can't deliver. So, again, thank you for your response. I feel a lot better!!!

I would love to hear others' experiences with their weight as well, so if anyone else is reading this, your reply would be most appreciated!

You're welcome!

Ive found success with clothing on ebay and social media. Theres pages where you can pick up new, unworn clothing often with tags still on for next to nothing when people clean out their closets. Yard sales can be great for inexpensive but still nice clothing too. Ive found the majority of my clothes on sale, hitting the clearance racks towards the end of seasons helps. You could try online "stores" too, theres always discounts and deals going on. Many OC patients are very slow to gain their weight back. After a complete recovery, most settle at weights less than they had been before cancer.

Im a bit ashamed to say I currently have a range of 4 sizes in my closet. My kids would say Im being a pack-rat. LOL! The past 6 months Ive been wearing the smaller sizes. Hopefully I can put a few pounds back on. For me, losing weight is NOT good! If I get sick after Ive lost weight I dont have anything extra to lose and weight loss tends to deplete any energy or stamina I had. Definitely NOT a good situation for me as any little thing could easily turn into a hospital stay which is something I detest.

Good luck with your shopping!!!

Hello Rabbit,

Day of my Glossectomy surgery April 25, 2017--- I was 64 pounds. That's no misprint. 64 pounds and I survived that 7+ hour surgery that's outlined in my Signature below ( hopefully it shows up there)
Today, at my head & neck surgeons clinic, I weighed in at 76.7 pounds, clothed..

Yes, I have Cachexia caused by my cancer. One year post Radiation, I still have active invasive SCC cancer.. In fact, they set up my next surgery to go after New tumors, for May 14th. I just had a double surgery in the Main OR, April 11th.!! But my tumors are growing fast, visibly -- so we cannot wait.

76.7 pounds-- Rabbit, I caanot Eat . I no longer have the ability to Eat, and the last time I had actual Food, was early March 2017. I even remember what it was ...

I'm on continuous tube feeding via my G tube. And right now, they are allowing me liquids by mouth..For Quality of Life . The huge problem is-- I am actively Aspirating. Into my trachea & lungs. Battling pneumonia right now, from E. Coli ! Yes, I aspirated stomach contents and have E. Coli in my lungs ...

Getting better though, on my 3rd course of antibiotics now...

Besides, Cachexia, my other diagnosis related to my wasting syndrome is " Severe Protein- Calorie Malnutrition. ".

I just do the best I can. My oncology dietician told me recently, that I have No Reserves. I know that's true. But still , I came back from 64 pounds !!

I wear Girls clothes. Not Juniors--- GIRLS. I am Size 12 girls. Luckily aldo, I am a seamstress!! So I can alter clothes as well.

My next big surgery in 2 weeks May 14. My invasive SCC is back. It's even invaded my reconstructed tongue flap. It's ....just terrible.
I gotta get through it, and keep going somehow.

Crystal

Oh my gosh, Crystal, I am so impressed with your strength and resiliency! You are getting through an incredibly tough situation. I really respect you for it. I wish you all the best on your upcoming surgery and on everything!!!

Christine, Having 4 sizes in your closet sounds smart to me! I bought some things at the end of last year from the thrift store that were a little baggy thinking that I would gain weight and fill them out, but then I lost more weight, so those items are packed up, waiting for that extra 10 or 15 pounds to show up. LOL.
I wish you all the very best on your journey!

Hi Rabbit,

I’ve had cancer cachexia. I went from 250 or so to less than 130lbs in less than a month. I had TPF induction chemo, and that put me in the hospital and nursing home for 6 months. Probably from the weight loss I could not walk for a year. It’s right you loose fat, but skeletal muscle too.

I can laugh now, but one day in the hospital I woke up, and couldn’t find my legs (from the waist down I had no movement) and patted the blanket. I figured they needed to take my legs, only to find I had snuck in the bed mattress!

I was still underweight from my initial weight. I read up on cachexia, and part of is not due to the lack of eating, it’s a metabolic metabolism effect from the tumor. To help reverse this effect, I took certain vitamins, protein drinks a prescription drug called Marinol, and anabolic steroids through a doctors prescription, and weight training. It takes time, and eventually I went up to 200lbs, but my kidney doctor told me not to gain more weight because it’s effecting my kidney.

I had a few more recurrences, 6, and was up and down with my weight. Currently, 10 years after diagnosis, i’m 180, but was in better shape a few years ago goibg o the gym and watching my diet, but slacked off due to other issues.

Here’s one link about Cachexia. You may not have cachexia, but I read it can effect up to 20 percent of cancer patients.,

https://www.verywellhealth.com/understanding-cachexia-symptoms-causes-and-treatments-2249008

It goes with saying, discuss any concerns with your doctor(s) too!

Paul, thank you for your very informative post! This info helps others who are struggling thru their recoveries. You have given readers hope! For so many weather they are going thru the shock of being diagnosed, OC's barbaric treatments, a seemingly never-ending recovery, or even being a caregiver, its easy to lose focus on ever getting well and back to normal. What you've been thru and so kindly share with others helps remind us there really is a light at the end of the tunnel, at least for most of us there is. We all could use a little dose of hope from time to time.

Be well my friend!!!

Thank you

Rabbit,
Your post certainly hits home.
I am also 10 months out, and basically just weigh a couple of pounds over my weight after the treatments ended. I was down about 50 pounds.
Actually I lost another 5 pounds the few months after treatment.
I am a man, and I always had no hips and people would goof about my pants hanging too low. So now, wearing my old clothes was totally out of the question, even with the suspenders I bought.
So I bought a few pairs of pants, 4 inches thinner. But still rely on the suspenders. Fortunately, I am not working, so I don't need a big wardrobe, I can wear sweat pants around the house.
So I too, am frustrated by the longer then expected recovery, and when or what clothes to purchase. Now, with the summer coming in the Northeast, I need to get shorts that fit. And suspenders with shorts, looks rather odd, unless you are in Bavaria. 😀
A few tips I can give on eating, from a Nutricianist I went to.
Try to eat more smaller meals, don't drink your liquids before meals, it may fill you up.
If you don't have issues with a high fat diet, try to always add a little fat here and there.
Such as, cook with a higher fat oil, not Canola. Put a dollop of Ricotta in foods. A bit of peanut butter or other nut butters or Avacado, as a topping where you normally wouldn't use it.
In other words, she told me, don't try to gain it all at once, but try as best to amp up fat, calories and protein as you eat your small meals or snacks.
And eat what you like. When I tried forcing things that put me off, sometimes it affected me for a few days.
Also, I found that it is still good for me to try to have Ensures or Boosts, etc. every day or so, even though I am back to eating again.
My daughters use Poshmark a lot to buy and sell clothes, maybe you can find some temporary nice clothes on there, that are reasonably priced. Some were never worn.
Best of luck.