CancerCompass message board discussion started by Dsa23 on 7/30/2005 http://www.cancercompass.com/message-board/message/all,2619,0.htm Mon, 13 Oct 2008 00:00:00 GMT Mon, 13 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My Mother who is 72 was diagnosed with Stage IV NSCLC in Feb 05. She had some small spots on her adrenal glands and the dr's were not sure if they were cancerous so they backed her up to stage IIIB and gave her massive amounts of radiation and chem to the chest. It has taken almost 4 months to recover from the radiation and now the dr say the adrenal glands have grown so she is definately stage IV. If they had known that they would have never have done the radiation. The radiation has left her with tremendous excessive mucus and constant reflux and she has no appetite and, since she has been basically been unable to eat solid food since April, she can't eat much of anything now. Her weight has dropped to 101 and the dr told her if she can't turn it around she'll be gone in 2 months. They put her on steriods to give her strength and try and stimulate her appetite. So far it is not working for her. The dr's have her on so much meds that she has no appetite and is nausous most of the time. She is scared to death which is making her ability to eat worse. Does anyone have any advise on how to turn this around. She is too weak to start chemo and the may start her on Tarceva if Insurance will allow it. Any thoughts would be appreciated. Dsa23 Sat, 30 Jul 2005 00:00:00 GMT My mothere was diagnosed with NSCL stage IV in February. We had a real rough go of it but she has finally recovered from her radiation and has slowly been able to come off all of her drugs including steroids. She is now only taking Tarceva - which has done quite well for her. She is also walking around 3 to 4 miles a day now as well. My mother's appetite is still very poor but every day we all make sure she at the very least drinks a nutirion packed smoothie that my father makes for her. She hates them but I believe they have really helped keep the protien going into her and helped her strength. I hope your insurance approves Tarceva - most do. Let me know if I can answer anything else. My thoughts are with you and your mom. Branna Tue, 09 Aug 2005 00:00:00 GMT Thank you for your response. It is nice to hear that someone with Stage IV is doing okay. And that is just wonderful that your Mother is walking 3-4 miles a day. Amazing! My Mother actually started the Tarceva last week but it is too early to tell whether it is working. Has your Mother had any side effects? You mentioned that you make a protien drink for your Mother. Can you tell me what you put in it? Also, how old is your Mother and, I'm just curious, where has her cancer spread to. Does she have a bad cough and lots of excess mucus? We live in the Boston area, where are you from? My Mother is very down as a result of Peter Jennings death. She is losing hope because her appetite is so nonexistent and she is on so much medication. I would like her to be able to speak to someone who has come out of the drudges of meds/radiation/chemo etc, to give her hope. If that is possible, let me know. Anyway, thank you for your response, it is much appreciated. Dsa23 Tue, 09 Aug 2005 00:00:00 GMT As far as side effects I think my mother has only mild ones. She can get diareha (sp?).Sometimes she will get a little pimple like spot on her face and she sometimes experiences fatigue and she has pretty severe appetitie loss but not sure if that is the cancer or Tarceva. Also, i do not know if the tarceva did this or the steroids or what but she had some very strange growth of facial hair that seems to be subsiding. I will definately get the smoothie recipe from my dad - he modifies it from time to time since my mother really does not like it but we really coax her to keep drinking - I know it is not something she looks forward too. lets see i will try to answer your other questions... my mother is 70. We live in the Seattle area. she has cancer in the lung with what was initailly a large number of mets to the spine and skull. The cancer had actually busted her spine up a bit and also cracked her rib. Her cough was never that bad, not a lot of mucous. All cases are individual so perhaps let your mother know that Peter Jennings is not her and her road might be quite different. I will definatly talk to my mom about being contacted. She might be shy about talking about this but I think it would be great for her as well. I think my mother was initially on an appetite booster drug for awhile - you may want to ask your oncologist about this. Branna Tue, 09 Aug 2005 00:00:00 GMT Hi Debra - I spoke with my mom and she said it would be fine to contact her. I also spoke with my dad and got the smoothie recipe so here it goes. -Start with 1 ensure or a cup of soy milk -cut up a banana -use 1 or 2 Benacalorie supplements -1 scoop of beneprotein -1 small container of vanila la creme by dannon -1 small container of culture soy yogurt -smidgen of flax seed oil (you may have to adjust this since it may cause diareha) -a fair amount of frozen fruit of choice - my mom likes the peaches put in blender and blend. My mom drinks this over the period of 1.5 days. She really does not like them but can get a good deal of calories and protien in her fairly quickly by getting them down. I think they are the key to keeping her wieght on although her appetitie has just now started to improve(slightly) in the last few days. Let me know if you need any other info etc. take care -ash Branna Fri, 12 Aug 2005 00:00:00 GMT Dear Ash, thank you so much for your recipe. Things took a turn for the worse yesterday. My Mother ended up in the hospital with a tube in her back to drain the fluid which had accumulated around her lungs and heart. Her heart rate was out of control and she was so short of breath. She seems to be better today and I think may be able to go home. But they say the tumor in her lung will accumulate fluid again, so this was just a temporary fix. We are told that her cancer is very aggressive and she is probably behind the 8 ball now in trying to control it or slow it down. They do not feel she has much time left, or time to get a treatment to help. She had started the Tarceva but that takes a month or two to show results. We just may have started it too late as a result of the horrendus radiation treatment she endured and took 3+ months to recover from. It's just been a nightmare. And I feel helpless. Well, I have to head off to the hospital. I really appreciate your recipe and will try it. I hope your Mom continues to do well. All the best, Debra Dsa23 Sat, 13 Aug 2005 00:00:00 GMT Sorry to hear this. My thoughts are with you. Let me know if you need any information. -Ash Branna Tue, 23 Aug 2005 00:00:00 GMT Debra, The symtoms your Mom is having are also symtoms of the growing cancer itself. My husband is a new Stage IV patient and I'm learning all I can also. I don't know it all. My husband doesn't want to eat either, but I'm giving him the high-calorie, high-protein drink powder that body builders use to gain weight. So far he can tolerate it, like a milk shake, and his weight loss is slowing down. No gain yet, however. He drinks 3,000 calories a day of this and eats what he can. As for the nausea, do you have Kytril of phenergen suppositories? These have both worked for us. The urge to vomit does not entirely go away, but it lessens. Encourage your Mom to eat what she can; puddings, jello, canned fruit is softer, toast with p-nut butter, basically anything, try anything. I don't think you should blame all of her situation strictly on the radiation, but I don't know those details for you. It was certainly hard for my husband..Did you have radiation directly to the lung? What chemo did you have? Her stress can cause her more problems with respect to her healing. Give her as much anti-oxident supplements as you can. Life Extension Magazine has suggested doses for cancer. Watch funny movies with her; go into the garden, have meals with candles in the dining room, not in bed. Do whatever she agree to to change her mood of depression. I know it's hard; it's hard on all of us as caregivers. However, I find that the more positive both you and the patient are the better you seem to advance in this race. I hope this brings some calm to you, aly Sweet Pea Wed, 14 Sep 2005 00:00:00 GMT My husband was IV stage nsclc Aug 2003. He also had it in the adrenal gland. He was has received 5 or 6 kinds of chemo and was left very weak at times and had to have assistance to walk and sometimes was in wheel chair. We have been to Mayo Clinic in Jax, Fl, Moffitt in Tampa and now MD Anderson in Orlando. He is currently taking Alimta Chemo (a IV treatment of 15 minutes) and has done well. He is kinda tired some, but is able to play 18 holes of golf and has no pain now, whereas he did have chest pain. It was recommended he have radition on two different dates, but the radiation doctor didn't want to give to him. It was also recommended Altima and Tarceva. They told us the doctors can call the drug company that makes Tarceva and they will give it to you at a greatly reduce price or even free. It is a pill form. But his doctor has put him on the Alimta and he is doing well. Just wanted you to know that Tarceva can be obtained cheaper or even free if the doctor contacts the right place. May God bless your Mom in whatever you decided -- and, if not already doing so, establish a faith in God -- as they say a person with faith and prayers does better. Alforlady Thu, 29 Sep 2005 00:00:00 GMT My husband was IV stage nsclc Aug 2003. He also had it in the adrenal gland. He was has received 5 or 6 kinds of chemo and was left very weak at times and had to have assistance to walk and sometimes was in wheel chair. We have been to Mayo Clinic in Jax, Fl, Moffitt in Tampa and now MD Anderson in Orlando. He is currently taking Alimta Chemo (a IV treatment of 15 minutes) and has done well. He is kinda tired some, but is able to play 18 holes of golf and has no pain now, whereas he did have chest pain. It was recommended he have radition on two different dates, but the radiation doctor didn't want to give to him. It was also recommended Altima and Tarceva. They told us the doctors can call the drug company that makes Tarceva and they will give it to you at a greatly reduce price or even free. It is a pill form. But his doctor has put him on the Alimta and he is doing well. Just wanted you to know that Tarceva can be obtained cheaper or even free if the doctor contacts the right place. May God bless your Mom in whatever you decided -- and, if not already doing so, establish a faith in God -- as they say a person with faith and prayers does better. Alforlady Thu, 29 Sep 2005 00:00:00 GMT Check out the website supremehealthfoods.com I was given a newspaper article from them about a patient who was suffering like your mom and the extract really turned it around for him. It's worth a phone call or a read on the net. I don't have any personal use with it yet as my dad was just diagnosed. Good luck. Caboose Mon, 12 Dec 2005 00:00:00 GMT My husbands aunt was diagnosed with type 4 lung cancer it has spreaded in to her glands and lympnodes she has decided to go without out any treatments.. because she said theres to many side affects and dr has told her tratments will not help because its to far gone and its not treatable...  dr has given her 6 months so we will just pray that god takes over situation...does anyone know what can happen without any treatments? redneckwoman3867 Tue, 20 Nov 2007 00:00:00 GMT