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Guest BETH

New member with questions

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Guest BETH

hi I have stageIV nscl cancer, my daughter,Laura, has been encouraging me to join your group. I read your posts but up until today have been frozen with fear and sadness etc. I was wondering if any of you had no appetite prior to your diagnosis, i have been sick a long time and lost alot of weight. I am not hungry at all and smells bother me alot. I was told on 4-3-03 that I have cancer but i have been in pain since Sept. The cancer has spread to my rib. Every thing i read talks about food and smells during chemo and i have only had 6 days of radiation, with chemo to begin on 5-19-03. i am worried I might be to weak to go through chemo but know I have no choice but to begin. Writing to you all is very hard but I pray it helps me as Laura thinks it will.

Thank you

Beth

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Dear Beth,

Welcome to our group. I wish you did not have to be here.

While my name is Ginny, my husband calls me the Food Nazi and it is in his charts just how obnoxious I am about him eating.

I kind of believe that the stronger you are the better you will be able to tolerate the treatments. And, to me anyway, food is the fuel that the body needs to be strong.

I am sure that eating (with tastes and smells being so bad) is very difficult. But maybe if you think of food as just another medicine that in the long run is going to help you, it will be easier.

My husband has an Ensure Plus (more calories than plain Ensure) with 3 scoops of ice cream every night. We do this in the blender. It is very cold and goes down very easily.

Again welcome and let us know if you have any questions or whatever.

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Hi Beth,

Sorry, you are having to deal with LC. My husband appetite is strange, to say the least. We just go with the flow. Before chemo he wouldn't touch chicken, now we eat it about 3 times a week. Two weeks ago he loved bananas, this week he loves grapefruit, tomatoes and cucumbers and he can barely look at a banana. I could go on and on. He also drank Ensure Plus and it helped his weight a lot, he got to a point where he couldn't even think about drinking it and we switched to instant breakfast. He isn't doing any of those now because he just can't seem to force them past his lips. I think they helped stabilize his weight a lot! If you can do it, they help. Anything you can do to sneak in calories is helpful. For instance, one of the nurses told Hugh to sprinkle powdered milk on his oatmeal in the morning - tasteless but it adds calories.

Good luck, lots of prayers!

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HI beth. welcome!! As far as appetite, NOW my dad doesn't have much of one. I never noticed before the diagnosis actually! My dad has a similar dx as you! Hang in there!!!! just stay positive as much as you can and you can get thru this!!!

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Hi, Beth! Welcome ot the message board and this little family here. Please say what you want and ask what you want. I am the Food Nazi in my household. I think every patient needs one because the patient cannot be relied on to eat what they need, especially going through radiation and chemo. So I suggest you get attached to a Food Nazi designate right away! Ha! Blessings. Don

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Dear Beth,

Welcome. Nutrition is so important during this ordeal. As background, i was sick from July 01 till March of 02 (when i was finally diagnosed) and during that time lost appox. 40 lbs. Then from March to July when i underwent chemo and radiation i lost another 20. Food was very tough for me, however, Ensure Plus kept me alive. I would become very weak and unable to stand (my knees would give out) if i didn't eat. Ensure helped with that considerably. You need to have the FOOD POLICE at your house (in my case my husband) to make sure you eat everyday. Right after chemo, I would be on Ensure until after about 3 or 4 days and then he would make me try solid food until i would agree to eat at least half of what he made me(on the positive side, he became a great cook). Ice cream, and tons of it. All things fattening are good - and that's a direct quote from my dr. Also, try to put on as much weight as you can before you start the chemo - it will make you that much stronger. Remember, we are all here for you.

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Hi Beth

Welcome to our loving group! :D

I am stage 4 also! before my chemo I also was loosing weight & couldn't eat!!! My family kept forcing things on me.

Ater my 2nd chemo My appetitecame back in a flourish!!! :shock: I can NOT STOP EATING!!!! I have gained all my weight back pluss!!! I am trying to watch my weight now but not having very good luck! LOL

Chemo didn't make me sick at all! Just tired & attackked my legs for 5 days after treatment.

Hang in there we are all rooting for you!!!!

(((((HUGS )))))

Estelle

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Guest BETH

Hello All,

Thank you so much for all your advice. It was great reading them just knowing i am not alone is a help.

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Guest CherryJ45

Beth, I am brand new to this site as well and I tell you, I look forward to coming to it every evening. Everyone here is so kind and understanding and as you know, no one knows what it's like in our shoes except us wearing them. You need to be able to vent and ask questions. Your daughter is right, it will be a good support system for you. I haven't yet begun any treatment as of yet, but please Beth, be strong, Laura is going to help you thru it ,as will all the wonderful people in here. I am so sorry that you have to be here...but my prayers are with you and you are in my thoughts. You can do this...believe it.

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BETH

my dad was sick for a few months before dx. He was never a strong eater to begin with and with chemo he stopped completly. What he takes now is a prescription called Megace (or megestrol -generic-) one teaspone a day and it is a WONDERFUL appetite enhancer. He eats like crazy and even on chemo days when he is feeling sick he still manages to eat something. He's been gaining weight ever since. He's been on it for 6 months and I highly recommend this. Hope this helps, and WELCOME to the board!

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Guest DaveG

Beth:

I am an 18 month survivor of Stage I, NSCLC, Adenocarcinoma. Following 2 surgeries in 11 months (Oct 2001 and Sept 2002), I was feeling very blessed to be a Stage I, especially when reading all the stories of those with Stage IV NSCLC.

On April 18, after going through 2 weeks of repeats CT Scans and a PET Scan on April 16 and a biopsy of lymph nodes in my neck, also on April 16, I was informed that the Lung Cancer had returned. I now have systemic Lung Cancer mets to my lymphatic system. I have been restaged to Stage IV.

On Monay, May 5, I start 18 weeks of 6 cycles of Carbolatin/Taxil (once every 3 weeks) and a Phase II Clinical Trial of ABT-510.

Being restaged has been a shock to me. As Co-Director of Lung cancer Survivors for Change, I believed my position was that of giving support, but now my rols has reversed, as I am one who comes here now looking for much needed support. The 300 + people in this group are 300 of the most wonderful people in the world. We have one common bond - Lung Cancer, and we share that bond quite well, especially with those, as yourself, who are new here and new to Lung Cancer. We share our personal experiences as well as our own family with each other. We are one BIG family, who grant each other much love, support, and more importantly, HOPE. Without Hope, we do not survive and, as our name, Lung Cancer Survivors for Change, implies, we are about surviving.

Please, pull up your keyboard, join us, and tell us more about you. As you have already found, we respond and do so with much love, support and HOPE.

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Beth, when Lucie was having trouble eating, we used liquids like Ensure, Boost, GatorAid, CrystalLite, flavored yogurt, flavored apple sauce, pudding. We still use some of those from time to time. It is so important to get enough nutriation and liquids. Blessings. Don

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Beth,

Now I know that you are Laura's Mom. You go to the same onc. as my husband, Dr. Roger Cohen. We have been going to FCCC since the beginning of November - so ask me any questions you may have.

We have dealt with both FCCC and U of P and have found Fox Chase to be an equal medically but far superior attitudinally.

Good luck on this journey.

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Megace (or megestrol -generic-) was like a miracle drug for my father-in-law. He immediately got his appetite back and actually eats more now than before his diagnosis.

Ask your doctor about this ....

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Beth, When I lost my appetite everyone told me to eat, eat, eat. My husband bought all kinds of drinks (i.e., Ensure) but I didn't listen to any of them. I turned into a bratty lil 2-year-old! After I had surgery, I virtually ate nothing!! Why didn't I lose all the weight I gained after stopping smoking? Now I feel like a blimp. Hey, I probably am a blimp. I have spent most of my previous years looking like an anorexic! At 5' 6.5"and barely over 100 lbs, I can verify that it IS possible to be too thin, and I have the pictures to prove it. My point is (do I even have one?) is what you weigh, the most important thing in this fight? I don't really know for everyone else, but it was not a factor for me. I think your appetite will come back when you need it to.

Good luck to you, Beth. Remember the power of positive thinking can change your world! JudyB

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I strongly recommend megestrol. The pharmacist sold us simple generic form of megestrol acetate, which is a suspension formula similar in appearance to Mylanta. It comes with a small plastic cup, which holds the recommended daily adult dose of 800 mg.

One cautionary note: when the pharmacist rang up the cost he asked for $93. I have Blue Cross-Blue Shield, and I remarked that I didn't realize it was such an expensive medicine, judging by the co-pay. He agreed, and said he was lucky to have the generic in stock. He told me the brand-name megestrol runs about $1,000 for a month's supply. I suspect that insurance plans have better prescription medicine benefits and wouldn't require such a large co-pay. But it can be pricey.

I agree that a good appetite is essential to health. It drove me to distraction to see my wife waste away to nothing, despite the repeated entreaties of family and friends to eat something, anything. She would tell me that she felt hungry, but that just the thought of eating anything made her nauseous. She's a slight woman to begin with, and lost 20 percent of her body weight. It wasn't the cancer that was making her lose so much weight. It was a combination of several weeks of being confined to a hospital bed and opiate agnostics, particularly Vicodin. and Oxycontin.

My wife now wears a 75mg. Fentanyl patch and takes a Dilaudid pill about every twelve hours. But the Megestrol has given her a healthy appetite. I also make sure that she takes Senecot S regularly every day.

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Dear Beth,

I don't have too much to add as far as food goes. When I was on chemo, I tried to keep it simple--soft boiled eggs, plain toast, a little cheese--nothing fancy and nothing too far out. We were living with my sister during a course my chemo treatments and since she is an artist (or a little controlling) she never understood the concept of "plain food." Hamburgers with soy sauce and eggs with asparagus just don't cut it when you are not feeling well. I never said much to her because I was grateful for her generous spirit. I look back on it now and chuckle.

My advice to you would be: try to eat because you do need good nutrition to help your body heal from all the different types of treatments. Your doctor may be able to refer you to a nutritionist.

By the way Beth, when I was first diagnosed, I wanted to crawl into a hole and never come out. I had such feelings of fear, sadness and grief. My loving husband, family and friends have slowly pulled me out of the hole, but I must admit I retreat there sometimes. It will be 22 months on May 27 since I was diagnosed and things seem more normal now. I'm on a good anti-depressant which has helped me a great deal. If you are not taking one, ask your doctor about one. I don't know how anybody could get through this with an anti-depressant.

Welcome to the board. You'll find many loving friends here.

Ada

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