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briesgo17

My dad and I

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I have been lurking this website since July, 2008. My father was diagnosed with Stage IV adenocarcinoma with mets to his adrenals. He underwent carbo/taxol for six sessions and though his tumors shrunk on his lung there was little progression on his adrenals. On January 3, 2009 he commenced his first treatment with Alimta (675mg). On the 23rd of January, 2009 he started his second dosage. I have noticed that the Alimta has removed his hunger 100%. His overall health looks great and he maintains his weight between 145-150lbs since he was diagnosed. I don't know if Alimta is doing this or if it is his cancer. When he was on carbo/taxol he still enjoyed his meals and had no issue concerning hunger. I believe my father thought that a shorter infusion meant easier recovery but the exact opposite took place. I wonder if anyone out there can share thoughts on other possible treatment ideas or insight on how Alimta affects your hunger. My father is a 73 year old who often is found saying, "why doesn't anyone help me". I appreciate any help in these areas.

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Briesgo, first of all, I would like to welcome you to the board. I don't have any information on Alimta. My husband did not take that particular treatment. But I do know that several people on the board have. I'm sure they will be posting soon.

I've heard of many people with a lack of appetite. Things to try might be Boost, Ensure or Carnation Instant Breakfast. Or keep a variety of snack foods available at all times. Sometimes a dish of some sort of munchie just sitting next to a person will cause them to take a bite or two. Several snack-sized meals throughout the day might work better than the normal 3 meals a day we're used to eating. Just a few ideas for you to mull over, anyway.

I hope you and your father are able to find a workable solution to this issue.

Lynn

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Lynn,

I am sorry to read about your loss. I appreciate your response and find great comfort from all those who post on this website. I have learned so much and yet feel so naive. My concern deals with the idea that maybe another type of chemo may help my father better. I love the insight others have and await to hear how it can help my dad.

Once again, thank you for sharing.

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My husband had stage IV with mets to brain, spine, ribs and adrenal glands. His only treatment was Alimta/carbo and from the get go he had no appetite. I think his cancer was ravaging his body so rapidly that although the Alimta did reduce some tumors, in the end the cancer took him.....Four months from diagnosis til death at 62....and the picture of health before diagnosis or so we thought. He only had nausea once during his four treatments but I think he was an unusual case. He had pulmonary embolisms, developed steroid induced diabetes...you name it....

I do believe it is highly likely the Alimta is causing the appetite problems, unless his doctor believes the cancer is advancing.

Ensure was a Godsend.....He had about three per day...for the last two months and not much else....

We also made milkshakes and I put protein powder and heavy cream in them to increase the calories.....

Best wishes...I am so sorry you have to be here. I know how this horrible disease has affected our lives......don't give up hope.....and keep posting

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Hi and welcome to the forum. You will find much support and knowledge here.

I was on Alimta for about 7 months and I never had a problem with my appetite. I did, however, have a lot of fatigue from it.

Hoping your father feels better soon and is able to eat. Lots of snacks, or finger foods is a great idea. Also, remember to have him drinks lots and lots of water.

Please keep us posted on how he is doing.

Hugs - Patti B.

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Linda,

I am sorry to hear about your loss. I appreciate your response and your sharing of your experience with these drugs. Its hard to say whether it is the chemo or the cancer that takes his hunger away. The doctors want him to go two more treatments before we see how things look via ct scan. The waiting is the worse. Ensure with ice cream, maybe cinnamon add bananas. I disguise this drink in so many ways. I will try protein next.

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Patty,

I can't believe I am actually writing to you. Its as if I know you. Intimate strangers and all. I have lurked you for so long now I am well versed on you and your life. You always bring a smile to my face. Thank you for your response on my dad. The lack of appetite thing just started with alimta. Prior treatment never took his hunger away. I am going to sneak up some finger foods and lots of snacks. Water he rejects. I don't know why but he loves his Coke.

Once again thank you for all your great words :)

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Hi! I can't answer your question today, but in a week or so I might be able to.

I was diagnosed with IIIb adenocarcinoma 28 months ago and have been on one treatment or another that entire time, except the past 7 days after I discontinued Tarceva. I had major eating problems on Taxol/Carbo/Avastin, minor problems on Avastin alone, and moderate problems on Tarceva. Not so much because of poor appetite, but due to painful swallowing the first few months of treatment, a continuously sensitive stomach which wouldn't accept a "normal" amount of food, plus a lot of heartburn on Tarceva the past 16 months which required me to cut way back on some favorite foods. But this weekend, for the first time since I started treatment, my taste seems essentially normal, and my stomach feels great, even after making up for lost time on the yummy tomatoes I had to cut out last year. I believe the cancer itself has caused me to need more calories to maintain weight, but that the eating difficulties have been caused mainly by the treatments.

So with this new and very welcome baseline, and the fact that I'm starting Alimta tomorrow (today your time), it will be interesting to see what changes occur. I'll certainly post my experiences with thiis new phase. Aloha,

Ned

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Ned,

You are always so helpful. Thank you for your insight. My dad has trouble explaining what it is he feels. He just shouts, "NO" when he seems me coming with something or other to eat. I appreciate everything you can tell me about how it feels to try to eat something you actually like on these types of chemo. I hate torturing my dad with some foods. If you don't mind me asking. How much did you weigh when you started the first chemo and how much do you weigh currently. Its amazing how little my dad eats and still maintains himself between 145-150lbs. Heres hoping that Alimta is a smooth transition for you and that it allows you to enjoy your favorite foods. I love your name!

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briesgo, I've not been on Alimta but a couple of observations....I wouldn't worry too much if your father is maintaining his weight. Keep doing whatever you are doing. Some of us have the opposite problem and gain weight on chemo and beyond. Also, it seems to me in reading over a year that the oncologists have a series of chemo or chemo combinations that they use as a standard depending on the individual's particular manifestion of lung cancer. To my knowledge they seldom, if ever, stop a chemo regime unless the side-effects are not tolerable. I think there is good reason for this. They wait until disease progresses on a chemo so they can keep as many as they can in reserve for future progression. Let me check with one of our experts in research, am I correct Ned?

Judy in Key West

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Judy,

Forgive my ignorance. Since November, 2008 are you on any type of chemo or maintenance drug? I am happy to see that you have no evidence of disease but also ask what your follow up care consists of.

Its true I know. It really wouldn't make much sense to pull my dad off this treatment without letting it try to do its job. Its just that he refuses to eat and my re-inventions are fading. Last night I bought a juicer. I read someone mention that they maintained their wait with various types of juices and that it was more tolerable than solids. My dad doesn't even know this but I am preparing him an exotic one for breakfast :).

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Just another thought but could this all be from depresion??? You know, when we are depressed we really sometimes don't have any interest in food. Maybe you should check with his doctor on that one. Also, I believe there are meds which help increase appetites (I was one of those who actually gained weight while on chemo).

Who goes with him to the doctor appointments?? This should definitely be mentioned to him/her.

Once again, keep us posted.

Hugs - Patti B.

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Patti:

I never considered depression. But come to think of it. I believe my dad had high hopes with Alimta. The shorter infusion convinced him that it would be easier and it wasn't. His experience with carbo/taxol was a breeze so he thought it would get easier. I go with my dad to every medical appointment. I will contact his onc today and see about anti depressants. Thank you for the lead.

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briesgo, Your dad is really lucky to have you. You take good care of him. I'll wager a bet he doesn't lose weight on your watch!

I elected to go off Avastin maintenance after my Nov 4, 2008, infustion. I had already had no visible evidence of disease since April 2008. Now I'm on "watch." I go for CT scans and blood work every three months. This will be my first, next week, since I've been off treatment.

Judy in Key West

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Judy,

I am so happy for you! What a great feeling it must have been and still is to have fought the battle and come out clean. I hope things stay this way for you forever! Thank you for your nice comments. I wish I could say the same about my weight, but who is suppose to eat the foods he rejects :(.

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Hello Briesgo and welcome

I am late in welcoming you but I am so glad you have joined us!

I don't have a lot of advice to offer and I agree with Patti that depression COULD be playing a role with your Dad. One thing you can do is ask the doctor about an appetite stimulant such as Megace. My step dad was on that for a bit and it did help some.

Please keep posting and let us know how things are going

Warmly

Christine

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Christine:

Thank you for your welcoming. I have since placed a call to Kaiser in hopes to get help with his depression. I do believe that its the culprit. Thank you for sharing and I am sorry for your loss. I will keep posting.

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I appreciate everything you can tell me about how it feels to try to eat something you actually like on these types of chemo.

Here's an older post of mine, before the heartburn ramped up from the Tarceva, that might have some of what you're looking for:

http://lungevity.org/l_community/viewto ... 878#316878

How much did you weigh when you started the first chemo and how much do you weigh currently?

My ideal weight is 175 according to our family physician, and for many years I'd been above that, around 190 or so at the highest point. With some effort I got it down to 180-182, where it stabilized for a few years, and my efforts to get it lower were unsuccessful. Then in 2005 my continued efforts started to pay off (or so I thought — I told myself that my "set-point" had changed) and I had decreased to my 175 goal about the time I developed the nagging cough that led to my LC diagnosis. By the time I saw my oncologist I was down to about 170, and when asked the standard question about recent weight loss I said yes, but that I'd been exercising and having more success watching my food intake, so the loss was intentional (duh). Up to that point I hadn't really known about or thought about the correlation between cancer, calorie intake, and weight, but I learned in a hurry. I dipped to around 160 at one point, but during the roughest chemo months I was able to stay close to 170 thanks to Boost, Carnation Instant Breakfast mix, Ensure, and the various lower-priced clones. For a while during that period I had to drink three of the 350-calorie bottles/cans every day along with eating everything else I could get down in order to maintain that 170. Currently I'm on a much more normal diet and averaging 172 to 175, so my onc and family doc, looking at it from opposite directions, are both happy.

Aloha,

Ned

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Bries,

I think when they reject the food because they just can't eat, it makes us feel so helpless, like we are failing them. Go easy on your Dad. Try to supplement the Ensures or just get down what he can eat. I do regret pestering my husband so much about his caloric intake...he lost 50 pounds in two months and was only 165 to begin with...He wanted to eat, but could not. It sounds like your Dad's weight is much more stable. I also found, that if I held back, in his own time he might ask for an Ensure.

God Bless you both!!

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I wish I could say the same about my weight, but who is suppose to eat the foods he rejects .

Keep that sense of humor, it's esstential to make it through this journey with some degree of sanity.

Glad Ned and others have come in and described your dad's not eating in language that helps you see it from his point of view. His turning down food feels totally different now, doesn't it.

Judy in Key West

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Linda:

You are so kind. Bless your heart. I do feel bad for bothering my dad. Your right, I should just let him come around and join him when he can. He used to weigh about 185-190 lbs and last summer he lost 30-35lbs in two-three months. He would brag about how its necessary to cut back on your goodies without ever knowing it was the cancer. He weighed 156lbs when he started carbo/taxol (8/17/8) and has maintained his weight 145-150lbs since. I am sure it is hard to see our loved ones battle but we can only insist on trying every avenue.

Once again, thank you for sharing.

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HI,

Sorry I'm coming in here late, but wonderful replies and advice already. I usually look for updates in General or the Update forums.

i can share my experience with my dad when his appetite deminished and then later the pain from radiation.

Someone posted before me about how we take it personally if our loved one doesn't eat- I mean we put our hearts and alot of effort into it...but it isn't about us. Once I realized that I went for the grazing approach.

I stopped asking him if he was hungry or what he wanted or felt like eatting and simply placed easy to eat finger foods in front of him periodically thoughout the day. All those little nibbles add up.

There are GREAT people with alot of experience and encouragment. We are here for you.

Keep us posted and I will keep your dad in my prayers.

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Katie,

You are my hero. This website is amazing. As I had written earlier, I have been a lurker for the last six months and have learned so much here. I thank you for your in put. One other thing. Is there a way to translate the comments into Spanish with one swoop? It would really help to share these nice insightful comments with my dad. Thank you and I sure will keep everyone updated.

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