weight loss?

Skiffin16 said:

PEG
More than likely depending on your situation and where she is in treatment, she is probably a prime candidtae for a PEG...

JG

Weight loss
I loss over 50 lbs while in treatment, got 10 of it back and still looking for the other 40.

Take care
Hondo

Glenna M said:

Another vote for the PEG
I'm sure her doctor will recommend the PEG since she is so tiny. I have also always been a tiny person but I've always had a pretty big appetite for someone my size. On my first visit to my medical oncologist he told me that I would be getting a PEG before treatment started. I didn't argue because I was confident that he was doing what needed to be done. Thank God I listened to him. It's not a big deal and quite easy to use and is definitely a life saver!!

If your mother gets the PEG she will also get a prescription for canned nutrition that will sustain her and keep her from losing too much weight.

I went down to 98 pounds during treatment but have managed to get back up to 103 pounds and holding and doing great. I may never gain all the weight back but I am okay with where I am now and feeling good, which is what matters.

Please keep us posted on how your mom, and you, are doing.

Glenna

Pro-PEG
People here may recognize me as anti-PEG unless you have to. I made it without. But in this case, with her health and weight so close to the edge, even I agree. Please make us all feel better and consider a PEG. (My wife, DrMary, will never believe I said that.) Doug

sweetblood22 said:

I was against the PEG tube at first too...
Thank God I got it or I would have died. No joke. I went from 130 lbs to 87. Not good. I am obviously in the pro peg tube camp. When you are already tiny (I was 120 at diagnosis. Perfect weight for me at 5'2") you cannot afford to loose that weight. Yes, there are some people I know who made it through without them, but 99% had weight to lose. At 105 your mom doesnt have the room to screw around. I changed my mind after I read that a lot of HNC patients die of malnutrition. I ended up with some severe side effects so I needed my tube longer. I am free of it and I am 107 now.

Not sure if you have been pointed to it already but there is a thread on the first page of the board called:

HNC Superthread. A COLLECTION OF HELPFUL LINKS ONLY. (please post only informative links here) Help for some FAQ.

There are a lot of good links to articles, and threads that have a wealth of tips and info that should be helpful to you.

I had my tonsils out as a kid and it hurt then too.

Oh, another thing, if you aren't getting adequate nutrition, your body cannot heal and it cannot fight off disease. This is life or death we are talking about. I got the peg because I wanted to be proactive- not reactive with my treatment. I just wish I would have found this site before I had rads.

about weight loss
when I started radiation I weighted at 200 and now after post treatments I am any where from 145 to 150 lbs the weight very's everyday. I lost about 50 lbs with radiation treatments. Of course I dont drink anymore pop only thing I drink now is either 2% milk or alots of water.

DrMary said:

Either way
you have described someone who seems to work with a carbohydrate economy (Doug always seemed to be a carb guy while I'm all about the proteins - we have different metabolisms). You might consider this when looking at food - with or without the PEG, you might want to tailor her diet to include more carbohydrates. Doug's body responded better when I was able to get carbohydrates (in the form of maltodextrin) into his mostly-protein shakes. She will likely benefit from increased fiber, also, even if it is in the form of BeneFiber or similar.

Going for the PEG is a tough call - she can't afford to lose much weight, but she might not lose much; it takes far fewer calories to maintain her body mass than it does Doug's (or mine, which still out-masses his). The greater concern to me would be to make sure she is getting enough of the essentials: calcium, magnesium, phosphates, potassium, protein, vitamin A and C (those are the biggies that come to mind). She would need to be able to swallow 24-32 oz per day to get these via Boost Plus or similar.

Between nausea from chemo and sore throat from radiation, this might not happen for the worst 3-5 weeks of treatment. I'd consider the PEG also - they can put it in with a day or so of notice (we made and canceled 2 appointments) so she does not necessarily have to have it pre-treatment.

I agree with Scam - when she is eating again, try to get her off the bagels and on to the whole grain bread and brown rice (something to look forward to!).

PEG
Would advise you to re-read Scam's post on this thread, as his summary is right-on.

Like Sweet, I was against it when my Onco told me I had to get one on my first visit with her. Before the second visit I did some research, and it became an obvious decision for me. The only thing in question was the severity of the treatment's impact to the actual ability to ingest food the old-fashioned way, and that is specific to the C patient. I trusted my Onco's opinion on where the treatment would take me, and am very glad I did. Even with the PEG/Jevity diet for the last 7 weeks of treatment, I went from 142lbs down to 117lbs. A lot does depend on how aggressive the treatment really is; however, what is not in question is the fact that a PEG does eliminate the ability issue of getting the Nutrition into the stomach by bypassing the problem areas of the mouth and throat. And, getting the PEG installed, along with maintenace and using, was not that big of a deal to me- though the entire notion of it shocked the daylights out of me on the first Onco visit! Is just a little outpatient Op. to install, and doesn't take an Op. to remove.

Bottom-line: knowing what I do from experience, I consider the PEG as a necessary for anyone getting full H&N rads with chemo, because of the PEG, itself, and the CRITICAL matter of how important Nutrition is during treatment.

kcass

J3 said:

Regaining weight
I just found this site today and I am wondering why I didn't look sooner.

I finished treatment in Oct. of '10 for lingual tonsil cancer. I was declared NED on Dec. 21st. I am wondering about weight gain. I was given a PEG right off the bat (1st week in Aug.) which was a good, though I hated it. The docs said I was too thin not to have one. I had complications from it starting the day it went in. It was removed in February. My weight was a concern but I am hanging in there. I don't know what I weighed going into treatment. There was no time to gain weight. I estimate I have lost 20 - 25 pounds. I am starting to believe I will not return to my old weight. Do we tend to stay thinner? Do some people regain? Does eating continue to be a challenge 1 year out, 2, 3, longer than that? It seems a trivial question, but should I keep buying new jeans, skirts, etc. or just wait. The two pair that fit are getting tired. Any advice would be appreciated.

Some have an easier time than others gaining weight back.
I had a peg for 18 months but finally got it removed. That was in september '10. I have gained about 10-13 lbs since then. I was down to 87lbs. I still have eating issues, a stricture and problems with my tongue, so gaining weight was so going. I am at baseline weight now, so my eating free for all is over. It was sort of fun while it lasted.

I still get more than half of my calories in by drinking them, but now instead of coconut milk, ice cream and milk shakes, I am drinking all fruit and vegetable smoothies. There is a thread about good weight gaining shakes on the head and neck cancer superthread. Lots of good into to check out if you haven't yet.

BEST WEIGHT GAINING DRINKS

I had plenty of weight to
I had plenty of weight to lose, so I'm not going to complain (it was my silver lining.) But, as time goes on through the treatment, it is very difficult to eat, but I refuse to let myself get to the point where I needed a PEG. Protein shakes are what kept me going. Consistancy was important to me and didn't like the Ensure or Boost, so went with the Special K drinks. I also would go to Jamba Juice adding protein to that as well or making my own smoothies. I lost a lot of muscle mass and a total of 36 pounds from my second surgery and radiation. Usually before treatment, a nurtritionist will go everything.

Clearblue said:

"boot my butt"
My darling wife is 20 days into RT . Fifteen more days of this inquisition seems absurd. She is weighing in at 92 pounds.(10 pounds down from 2008 gastric pullup surgery). Because of dumping syndrome , we believe that her aim is to maintain her weight and not neccessarily put on, which hardly seems realistic.

She has for the last three days been throwing up a little more than normal i think.
Shes had a slight fever, thought to be mouth sore caused infection, and is therefore on Augmentine Anti biotic. THough she is still able to sweallow, the mouth sores make it very difficult to get to the swallowing part.
Today was a bad "eating day", had very little nutrician owing to nausia adn throwing up.
THough very little actaully comes up, it is a little bloody, i think from the sores.
I am a bit worried , because she doesnt feel well(du yup!*@!)and is reliant mostly on pulmacare(abbots) canned feeding tube stuff, which she had half the intake today.
Such a battle. I am so frightened of Rad induced tumors adn blood issues, characteristic of Fanconi.
Am i right in saying that at least according to anecdotal evidence, weeks 3 onwards are the toughest! When i look at her now and think of this doubling in severity/difficulty etc for her, it seems to be just an unbeleivable scenario.
She would boot me in the butt, for talking this way, but she just doesnt have the strength for that.
Clear

Next 3 weeks
Yes, they start to get tougher because it is cumulative. Then it peaks about two weeks out.

I started throwing up about my third week too despite the anti nausea drugs. I was completely reliant on my peg tube two weeks in. I did not lose any weight until after rads was done tho. I was putting in 2000-2400 cals a day though.

I did get pretty weak. I had trouble standing up on my own. It was getting hard because I still had to feed myself. I ended up staying in my room for feeds. I remember one time I was at my dads after rads and I couldn't get out if the chair by myself.

I just hope her infection or whatever that is clears up. Keep me posted, Clear.

Also, has her bone marrow been ok and have her counts always been ok? I am thinking if she is older than I am that she is probably an FA that is a somatic mosaic. Do you know? Also, was she ever tested to find her complementation group? I haven't been so I don't know mine.

My brother had aplastic anemia at 8 years old and had to have a bone marrow transplant at 20. Apparently FA is usually worse in boys than girls. I am thinking he wasn't mosaic.


Sending you both hugs, and prayers.


Sweets

PEG or not to PEG that is the question
I was against the PEG but did see a gastroenterologist on the insistence of my radiation oncologist. I did not need a PEG but have lost 60 lbs since ending treatment December 3, 2011 and continue to lose. If your mom decides not to go with the PEG I would check out recipes for your own smoothies. I like the DANON yogurt site and their recipes for yogurt smoothies are a staple in my diet. Here is an example of my favorite breakfast smoothie made with Dannon Yogurt

I use 2 scoop vanila EAS protein powder. = 23 grams protein
1 cup Dannon vanilla yogurt
1 ripe banana
2 tsp peanut butter smooth not chunky
tsp cinnamon
2 ice cubes (you can add more if you want it more like an icee)

Blend in a Magic Bullet or regular home blender.

Drink and enjoy.

PS I am a huge fan of the Magic Bullet, you can buy them most anyplace now but they have great deals to buy one on TV usually on late at night. Mine was a gift and the best gift I received during my cancer treatment.

Prayers for your mom that she can maintain her weight.

PS - most importantly so she can eat make sure her doctors give her RX for lidocaine mouth rinse / or magic mouthwash as it numbs the mouth / throat so she can eat and drink to stay hydrated and health. If her doctors dont know what magic mouthwash is or lidocaine mouth rinse call the pharmacy at MD Anderson Cancer Center they can educate your doctor. Or contact the Head and Neck Center at MD Anderson Cancer Center for an opinion. This is where I go and I love my doctors, nurses and physician's assistant. They are the best.