tmaizeinlv Posted July 24, 2003 Share Posted July 24, 2003 My mother has Stage IV NSCLC, mets to brain, adrenal gland, lymph system. She's done 2 rounds of chemo and 15 days of whole brain radiation (latest chemo Monday, finished radiation Tuesday). She won't eat. She had mouth sores/fungus, that has been cleared up. But, she just won't eat. Yesterday, she had an 8-oz can of Boost, nothing else. She said nothing tastes good. She is very weak and losing weight like crazy. They put her on an appetite stimulant but it doesn't seem to be working. The Oncologist doesn't seem terribly concerned, but he has basically given her no hope of survival, despite the fact that her tumors have shrunken significantly with the chemo. She also seems to have kind of given up and is extremely depressed. I live in Las Vegas, she lives in Omaha. I am leaving for Omaha in a couple of hours to go see her for the weekend at the request of my dad (she's not talking to anyone, including me). Does anyone have any advice for me? I would like to help convince her to get a second opinion (we have insurance that actually pays for this, including travel) and some counseling and to eat! I have a feeling that what she's going through is common, so I am hoping someone can help me find the right words of encouragement. Thanks so much, and prayers to all of you. Terre Quote Link to comment Share on other sites More sharing options...
Don Wood Posted July 24, 2003 Share Posted July 24, 2003 Our onc says that weight loss can be very significant and should be noted. I have insisted during chemo and radiation treatments that my wife drink plenty fluids and eat soft foods. You can run the risk of dehydration and/or infection if you don't get enough fluids and nourishment, regardless of how it tastes. My wife called me the "food Nazi" because I wouldn't let her get away with it, even when she couldn't swallow well or like the taste. Your mom needs a "food and liquid Nazi" to help her through this time. The mouth thrush is common with chemo. Glad it had cleared up. Have a good trip. Let us know how things are going. Don Quote Link to comment Share on other sites More sharing options...
Guest DaveG Posted July 24, 2003 Share Posted July 24, 2003 My oncologist has put me in Megace, an appetite inhancer. Since being on Megace my weight has begun to increase and I definitely had an increased appetite. I suggest bring up megace to the doctor because I believe it is well worth the effort. Quote Link to comment Share on other sites More sharing options...
ginnyd Posted July 24, 2003 Share Posted July 24, 2003 As a Hall of Fame Food Nazi, I agree with Don. Beg, nag whatever to get your mother to eat and drink. Also, is she on an antidepressant? If not, why not. Hope your trip is good. Quote Link to comment Share on other sites More sharing options...
norme Posted July 24, 2003 Share Posted July 24, 2003 Hi Terri, by now you are prob on the plane headed for omaha. what can one do for a person who has decided nothing is going to work. i felt this way when my husband was told he had lung cancer in the left lobe. i had been through so much of this in the past but somehow after i found this sight i do have a lot of hope. i don't know about full recovery, but hope of having him around for many many and many more months, maybe 10 but also maybe 1,000,000.. he also had whole head radiation and two wks ago he had a brain scan and nothing at the present time is showing. i believe he had this too before he was operated on. they did not do the chemo until after the oper. they did not find the brain tumors until some months after the oper because of a near fall a few times. his one leg was giving him prob as i recall. he started chemo again today because it now is in his liver. it also is in his rib bones. but dispite all of this, he and i enjoy being with each other, go out for lunch, etc. for someone i had buried, he and i are still going, slow but going. he has chosen to go with the new chemo treatment because of me i know and i am glad. no one, no one, knows what meds could be the one for them and survive a long time and in good health. your mom has already buried herself and she needs to know that my husband, with some of the same cancer locations as hers is hanging in there, and for me is trying to make it. tell her, its not just her who dies but the whole family when one does not try. tell her my husband's recent scan shows no mets in the brain and he had three. they took his left lung so no cancer there now. one by one we are working on getting all the cancers gone and she should to. it is fightable (not sure this is a word but who cares) at this point. Eating was a big problem while he was going through all the radiation and chemo and he lost 60 lbs but he has now been holding his weight for over two months and for this we are thankful. he ate if he could but it was very little. he knew what he could take and i let him go with that. we got through it but it was really hard.... God bless your mom, dad and you. it is not easy but it is worth the fight. Quote Link to comment Share on other sites More sharing options...
christymike Posted July 24, 2003 Share Posted July 24, 2003 Hey i live in omaha and so does my dad. Can i ask what hospital she goes to? Cuz my dad seems to get no hope from the doctors either and I think he needs to switch also. Not eating was common for my dad he usually started eating during the end of his chemo cycle. It was scary for awile but he made it though it. Prayers to you and your family Quote Link to comment Share on other sites More sharing options...
tmaizeinlv Posted July 25, 2003 Author Share Posted July 25, 2003 Thank you all so much for the information. I talked to her this morning and the reason she appears to have given up is that she thinks that this is the best she will ever feel and her quality of life will be awful. I am trying to tell her that this is just the side effects and that this will pass with time. She refuses psychological counseling, refuses to talk to anyone on the phone, refuses to see anyone, and refuses nutritional counseling. She won't take antidepressants. She's damn stubborn - I should know because I'm worse. Anyway, she's on the appetite drug, but the doctor says it will take several days/weeks to help her. She is trying to drink a can of boost every day, but that's about all she'll eat. The docs don't seem all that excited about this, but I don't think it's good. Her blood work is excellent except for low white cell. They gave her a shot for that and it's made her beyond miserable. She is in agony, especially her legs. She is so weak, she cannot stand without assistance and has really gone down hill since the "blood shot" (how's that for technical?). She's at the Methodist Hospital Cancer Center; her onc is Dr. Bud (that's kind of a nickname), her radiologist is Dr. Wheeler. Dr. Wheeler is spectacular; Dr. Bud is so-so in my opinion. He's probably technically ok, but I'm not sure of his attitude. If you dad is at Bergan Mercy, MOVE HIM! They missed mom's cancer (she had chest x-rays in December and April) and they missed it TWICE! Then they lost her x-rays. The cancer is so clearly there in December, even I can see it - her left lung looks like a dalmation. Anyway, enough of my ranting... hopefully some day I will be able to give something back here; I feel like all I'm doing is asking and taking. That said.... any advice would be welcome. I know this is probably the worst of it for her; chemo Monday, 3 weeks of radiation, and the white cell shot (my dad can't remember what it's really called) Tuesday. I've read a lot about this and know that the weakness is a common radiation side effect. Anyone know how long it lasts? My dad has agreed to be the food Nazi- he's half German (and half Swedish, so he's stubborn to - it's genetic!). A friend of the family and I are trying to get her to get some counseling or something. ALCASE has phone buddies; she said it sounded like a reasonable idea. Her speech is a little slurred and it's hard for her to talk; she says her mouth is very dry. Sucking ice, popscicles, etc., aren't an option (according to her). Thank you all so much for your kindness and support. You are all in my thoughts and prayers. I will never be able to repay you adequately for your replies. Terre Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted July 25, 2003 Share Posted July 25, 2003 Hi Terrie, Dear, your mom has been hit with a double whammy - chemo and radiation - and she SHOULD BE PHYSICALLY DRAINED. I am glad your dad agreed to be the Food Nazi. She definitely needs her nutrition. If you can line up a phone buddy for her that would be great. Only someone going through this themselves can know how she feels and offer advice and hope. You and your family are in all of our prayers. Peg Quote Link to comment Share on other sites More sharing options...
norme Posted July 25, 2003 Share Posted July 25, 2003 Terre, the chemo and radiation really knock one down. In fact, mine was so far down from the radiation that i didn't think he would be able to get back up. he did but it took a good three weeks after the last radiation treatment to get him to start eating again. it all will look really black before you see the sun again....tell your mom to hang in there. Quote Link to comment Share on other sites More sharing options...
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