#43539 07-06-2004 08:58 AM | Joined: Jun 2004 Posts: 17 Member | OP Member Joined: Jun 2004 Posts: 17 | Hi all
Sorry I have not been around lately, I have not been feeling to good. I would just like to ask how I am meant to keep the weight on during chemo/rad. Has anyone any suggestions on what I should be eating. I have lost 20lb's in 3 weeks and am a small frame anyway so its not helping. I am not that sick only 4 0r 5 times a day mostly in the evening, in fact I can set my clock by it. So I try and I mean try, my throat is sore at the moment, to eat as much as I can in the morning. I have been given advice but I would appreciate hearing how some of you are coping with the eating.
Warmest thoughts Sweety
Stage 1vb Metastatic Cervical Cancer. Metastatic squamous neck cancer. Currently having RT,Chemo. Tumor removed 07/04 Immune therapy.
WHERE THERE'S LIFE THERE'S HOPE.
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#43540 07-06-2004 11:43 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Hi Sweety!
I am probably the wrong person to ask since I lost 70 lbs but I did everything possible to increase calories. I was on almost 4,000 calories a day for two months before my weight came back. I ate every piece of meat I could find, even chowing on some prime rib and grilling ribeyes every chance with sausage snacks in-between, Boost Plus, etc. I even tried the PEG routine for a while but could not keep the liquids down. Once the weight started coming back, there seems to be no stopping it!
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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#43541 07-06-2004 11:44 AM | Joined: Mar 2003 Posts: 251 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Mar 2003 Posts: 251 | Sweety, Can't remember if you have a PEG tube or not. If not, it could be worth seriously considering. My husband was really resistant to the PEG tube but when he finally got it (at 6 weeks into radiation) the whole nutrition issue got alot better.
Sending good thoughts your way... Anita
Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
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#43542 07-07-2004 02:41 AM | Joined: May 2004 Posts: 34 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: May 2004 Posts: 34 | Sweety - my sister is having the same issue - see my post re; weight gain. Cathy was really having problems with her swallowing after surgery so when radiation started she wanted a PEG tube. Because of side effects with radiation she has been in hospital since May 18th. She is now on high cal Resource 2.0 and has been having 3 a day for about 1400 calories so she (hopefully) won't lose anymore - (she started at 100 and is now 83 pounds) and she is working on upping that little by little up to 4 a day which would be 1900 cal - so at her size she should put some weight on. There is no way she could get to consuming 3000 calories a day - that is just too much volume for her to ingest.
Caregiver/twin sister to Cathy diagnosed with tongue cancer Feb. 2004/partial glossectomy and neck dissection Mar 2004/recurrence may 2004
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#43543 07-07-2004 10:44 AM | Joined: Jun 2004 Posts: 106 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2004 Posts: 106 | Hi, Sweety, I know, they tell you you should keep your weight up while you are throwing up and can't swallow anything. It is a battle! Milkshakes and those ensure type drinks, if you can stand them (they make me sick even though I can't taste them) are the best stuff I can suggest. I have lived on yoghurt smoothies for over a month, and lost about 30 lb in three months. I think the yoghurt also helps to keep your mouth healthier - look for the kind with live cultures. Some people can't eat them because of the acidity burning, but I have not had that problem - avoid the kinds with citrus fruit. Things are getting better for me (almost 4 weeks postradiation) but I still spend most of the day eating - very slowly. I never had a PEG, but do talk to the dr about one, it can be a lifesaver. Lots of luck, Leena
scc right tonsil T1N1M0, right tonsillectomy + modified neck dissection 3/04, radiation IMRT both sides X33 ended 6/04. Also had renal cell carcinoma, left kidney removed 11/04
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#43544 07-07-2004 11:06 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Dec 2003 Posts: 207 | Hi sweety... My wife made these mega-calorie shakes for me during my worst times.
She bought some weight-gain type powder from the natural health food store (might want to check with your docs before doing this just in case they don't want you having any of the ingredients that might be in them -- some of them can be loaded with all sorts of stuff), then she would add yogurt, fruit, soy milk and other such goodies, even Ensure or Boost.
If I could down a couple a day, I was getting more than 1,000 calories in... Of course, some of them tasted awful but it sure beat chewing during the roughest times...
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#43545 07-07-2004 04:50 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Sweety, You can do it! I found that it was easier to eat something all the time. Big amounts of food were too overwhelming. Try the blender on different kinds of food and make smoothies. I think loosing weight is part of the deal. Just keep trying to as much good food in you and don't forget water!
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#43546 07-08-2004 10:12 AM | Joined: Apr 2004 Posts: 156 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Apr 2004 Posts: 156 | For weeks on end I white knuckled down only Ensure Plus and Boost Plus. The nutritionist also recommended straight cream and/or a tablespoon of canola oil - that's a lot of calories in a small amount.
See what the doc can give you to keep the food down. Maybe something like Zofran or Emend for nausea to stop the initial booting reflex would help.
You should seriously consider seeing a nutritionist. Your hospital should have one available to you. S/he'll give you great ideas.
Also, when I was in the hospital last time, I was unable to eat and refused a throat feeding tube (long story). They fed me through an IV for 5 days and I didn't lose weight (another story when I returned home). Your hospital may be able to hook you up once a week to get some nutrition and calories into you.
Sabrina | | |
#43547 07-08-2004 07:23 PM | Joined: May 2004 Posts: 80 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: May 2004 Posts: 80 | sweety,
there have been a series of posts around this issue lately which you may want to check out in the _currently in treatment_ forum. i've also been looking for weight gain or weight maintenance solutions for my sister who's got a PEG tube and unable to handle large amounts of any kind of food. here's what we've come up with so far for a lactose-free diet with some nutritional variety:
- eating small amounts but frequently (every 2-3 hrs).
- relying on scandishake (powder mix, 525 cals per 8 fl. oz) on days that she really has a tough time keeping food down and we need to keep the volume as low as possible. this is the most concentrated calorie rich product i've found (and i've spent a lot of time looking and going from one healthfood store to another). but it also has high sugar content, so i use it on her bad days or only as part of her diet.
- home-made pureed foods. usually some chicken or other meat, cooked with brown rice and/or potatoes and some vegies. after everything is cooked, i add fresh avocados which brings up the calories.
- add flax seed oil (130 cals per table spoon) to any food you eat. this oil is high in omega 3 fatty acids as well.
- oatmeal cooked in rice milk or soy milk (rice milk is usually higher in calories). to make it thinner for the tube, i add Isocal (Ensure type, prescription meal replacement) and flax seed oil and run it through the blender.
- home-made shake made with egg, bannana, rice/soy milk or Isocal/Ensure stuff.
- add whey protein to any food. it's tasteless and doesn't add much to the volume but has, depending on the brand, 80-110 calories per scoop.
- weight gain powder mix added to any food. depending on the brand, this stuff usually has 200-240 cals per scoop and doesn't add much to the volume. i look for stuff that do not have added sugar (a bit lower in calories but you can make up for it by adding oil).
my sister was truely in a rough shape 2-3 weeks ago and she was on iv for several days at home, etc., etc. we've now managed to stop the weight loss, and in fact she's gained 2 lbs since last week. not much, but this is pretty good for someone who can only eat 180 ml of liquid food at a time. hang in there. you can do it too, even if all you do is add the powder stuff and some oil to what you're already eating.
be well.
gita
sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
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#43548 07-09-2004 03:38 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Excellent ideas Gita!
I did not have a tube but I made smoothies in similar fashion and drank them. Check with the doctor and consider adding pulverized multi-vitamins to the mix as well. I found a mortar and pestle to help with crushing the vitamins. You might also have success with salad greens in the blender. It makes a green paste (use some oil and/or water) that is not fun to look at but is good food.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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