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is losing weight ok - or does that mean it's over?


Barb0802

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Hi Everyone,

My dad has stage 4, NSLC, adenocarcinoma, it spread to his lymph nodes, but he only has a 8 millimeter tumor on his lung... Yep, 8mm causing all this...

Anyway, he's had one day of Chemo, they added Avastin and he's been on Tarceva since the first chemo treatment about 2 weeks ago. His lips are extremely chapped and his mouth is sore. He's not eating and has now lost another 10 lbs since the treatment. Does this mean the disease "has got him" and it's bad, or can it be that even though he's lost so much weight he still has a chance??

He's 65 and has never smoked...

Thanks for anything you can tell me,

Barb

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Yes- of course he has a chance. There are many ways to boost his appetite. Ask the oncologist about Megace. Try to get him to drink things like Boost, Instant Breakfast, whatever you can get in him with calories- and push the fluids so he doesn't dehydrate. My husband lost weight in the beginning also-- just try small snacks through out the day. There are many good ideas on here-- keep reading and searching.

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Thank you RY... we've tried boost and instant breakfast, he drinks them when we force him. My sister just ordered Isopure, it's a protein packed water sold on the internet and targeted for HIV and Cancer patients, and some other diseases.

He's just so depressed and his mouth hurts so much, that he just can't be bothered. He's crabby too! :)

he's got to know he needs to eat, I just can't understand why he doesn't try harder.

anyway, thanks so much for the part about his chances, I just thought this meant he's losing the fight and fast.... :(

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Also- If he is dehydrated it takes away his sense of thirst and need to eat. This may be why he doesn't try- he doesn't feel thirsty or hungry. You might want to try pushing fluids to improve his appetite.

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Almsot all cancer patients deal with weight loss issues. His weight loss does not mean "its over" or anything like that, but it is critical that he keep his weight up and be hydrated. I know with my dad, especially at first through his brain radiation and first chemo treatments, he was resistant to eating (Chemo makes changes taste buds and can make food seem repulsive).

We finally got him on a steroid called decadron and at about the same time, his appetite returned. He is now roughly back to his pre-diagnosis weight (175) and is getting pretty good at eating and drinking as much as possible. But it took a ton of effort on our (mom, sister and myself in addition ot dad) to get there.

The mouth sores aren't something we've dealt with but that's a pretty common side effect of some chemos and of tarceva. Interestingly, the skin rash that people get on Tarceva is assoicated with a better response to it, and as a never smoker your dad may be particularly well positioned for a strong response to Tarceva. He should know that.

Keep us posted.

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Barb,

I lost weight the first week. I had to eat more than normal during chemo. I treated myself like I was stoking a furnace. I ended up gaining weight. Unfortunately every one is not able to eat like I did. You can eat a little all day. Try the things he likes. I ate a lot of organic almond butter with a little jelly on an English muffin. Find those things that he likes. I would share with him that a lot of us lost weight at first. You do have to do something about it. I am here two years later and I have started chemo once again. I do have my almond butter handy. I will not loose weight.

Stay positive, :)

Ernie

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Hi Barb,

I'm Adrian's sister, Leslie...I'm really sorry to hear that you are going through this. As Adrian mentioned, this has been a real struggle for us with our dad as well...(also a non-smoker and all-around healthy guy, except for cancer)...

In addition to Ensure, we found that having him keep a log of what he was eating and when he was eating it also helped....somehow, seeing how little he was eating on paper seemed to help a little...we also numbered his bottles of water--so he knew exactly how much he was drinking each day.

I think it also helped to talk about expectations for eating during chemo...We had to clarify what we meant by "Do you want something to eat?"...We know that his appetite is gone and thus, his answer was always going to be "No." We had to explain that what we meant is "Is it physically possible for you to eat something at this time?" And if the answer is "yes"--then, we need him to eat...He needed to understand that his body's physical cues--the ones that he has always relied on for his survival--were no longer working...and so, whenever possible, he had to override the impulse not to eat...and eat.

We also kept the house stocked with ice-cream and other snacks. His willingness to eat particular foods changed on a daily basis---one day ice cream was okay and the next day it wasn't...so we had to keep the house stocked with a variety of things.

Keep us posted...I know how hard and frustrating this is...

Best,

Leslie

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"Leslie"]Hi Barb,

I'm Adrian's sister, Leslie...I'm really sorry to hear that you are going through this. As Adrian mentioned, this has been a real struggle for us with our dad as well...(also a non-smoker and all-around healthy guy, except for cancer)...

In addition to Ensure, we found that having him keep a log of what he was eating and when he was eating it also helped....somehow, seeing how little he was eating on paper seemed to help a little...we also numbered his bottles of water--so he knew exactly how much he was drinking each day.

I think it also helped to talk about expectations for eating during chemo...We had to clarify what we meant by "Do you want something to eat?"...We know that his appetite is gone and thus, his answer was always going to be "No." We had to explain that what we meant is "Is it physically possible for you to eat something at this time?" And if the answer is "yes"--then, we need him to eat...He needed to understand that his body's physical cues--the ones that he has always relied on for his survival--were no longer working...and so, whenever possible, he had to override the impulse not to eat...and eat.

We also kept the house stocked with ice-cream and other snacks. His willingness to eat particular foods changed on a daily basis---one day ice cream was okay and the next day it wasn't...so we had to keep the house stocked with a variety of things.

Keep us posted...I know how hard and frustrating this is...

Best,

Leslie

Thanks so much Leslie. you make a lot of sense! He's already keeping a log of how his medications are making him feel etc. Don't know why we didn't think of a food log, guess because he'd have nothing to put in it... Just kidding...

The numbered bottles, great idea.. and the way to pose the "are you hungry" question is fantastic!! That's what he has to answer "can you eat something right now"... like you said he just says No, if we ask if he's hungry...

You've helped so much, thank you and Adrian!

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yeah as Leslie pointed out, "are you hungry?" is no longer particualrly relevant. the question is now "Can you eat?"

Dad has to realize that getting his weight up is vital to the success of his treatment in the long run.

The steroid route is worth exploring especially because it can generally boost energy levels, but it is NOT a "free lunch." For instnace, decadron decreases white blood cell count which is alos depleted by chemo treatments. When those fall too low, you get chemo postponed or start to have to take additional medicines to boost those levels.

Instead, you might first want to try Marinol (synthetic THC, active ingredient in pot) first. My dad hated feeling (lightly) stoned so he stopped taking it, but overall its probably a better long term appetite option than decadron if it works for him.

We believe that part of my dad's intial appetite/energy issues were in part related to his ativan prescription which many oncologist put patients on for nausea. It wrecked my dad and it was right around the time that we got him off the ativan that he got back on track.

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Hmm, I'm not sure what he's taking for possible nausea, but I'm going to check that out too, thanks for the tip about steroids, I didn't know that.

Pot? ha... I better not tell him that, maybe my mom can ask the Dr. about it.. just kidding. I'll mention it to my mom, don't know if it's an option in NJ though.

thanks so much for your help, I really appreciate it and will definitely use your advice..

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Barb,

I would like to add that my mom started on Tarceva a few weeks ago at 150 mg. Within 6 days she had dry chapped lips, soreness of mouth especially the end of her tongue-the doctor prescribed a prescription mouth wash you swish and swallow which helped this tremendously, she also broke out in a rash,even her eyes itched, had a cough, shortness of breath, diarrhea etc... It was all due to the Tarceva. they took her off of it for over two weeks and everything cleared except for a bit of the rash and she has been back on it at 75mg for about 5 days. We are hoping she can tolerate the new lower dose. Time will tell. The main thing I want you to know is that her last PET scan (end of June) showed NO cancer , so none of this is due to cancer. She is being given the drug for adjuvant treatment . It is due to Tarceva. The important thing is to get him to the contact the doctor right away and let him/her know what is going on. In the meantime, do be sure he keeps up fluid intake to avoid dehydration. My best to you. Let me know how things turn out.

Sue

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read this post re: Tarceva:

http://onctalk.com/bbPress/topic.php?id=539&replies=1

Dr. West will probably respond to it tonight, but it may give you some good ideas.

Just in case you don't know what onctalk is, Dr. West, a Seattle oncologist runs the site. It is an ever evolving lung cancer forum and a cancer "blog." He responds every night to most every lung cancer related question and is in my top top tier of "people who I admire and respect."

To give you a sense of how helpful he is, this is me from two weeks ago: http://onctalk.com/bbPress/topic.php?id=431&replies=11

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Hi Barb, sounds like your dad is on my same route, but I am 74 y/o, stage 4 right now.I had the Gemzar Carbo, 40 radiation treatments, Alimta and Tarceva. Started losing weight pretty rapidly after

Tarceva and it wasnt effective so took off after first run. I dont miss the diarhea, scaly skin and other side effects 8) When I started losing weight Doc put me on Marinol (to give me the munchies) trying to determine if it was my appetite,my eating habit or if the cancer was "stealing" my nourishment.

Must have been the cancer, Marinol didnt work. I have been really lucky as far as Medicare D taking care of all costs, BUT they denied Marinol. It was going to be $240.00 for 20tab but onc nurse told them of my history on Megace (no work) wt loss, etc and they approved it. So, dont know if it was pot or experimental med. :roll:

God Bless you on your journey. I entered Hospice a few weeks ago and am now in a whole new world. Took a ROAD TRIP!!! with a 23 y/o friend of mine last week (get a young friend so they can drive :) and you can sleep all the time). Planning a painting and sketching trip next week if she can get off work...that's prob with young folks, they gotta work. I think a lot of my fatigue is due to anemia (no more Procrit since in Hospice) so I really make an effort to eat, try and keep up my energy. Love to all from San Antonio

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Hi Barb,

My husband has been battling Small cell lung cancer

for about 2.5 years now. he went from 218 at diagnosis down to 155 in about 3 months. Alan has never gotten back to above 175

and at this time weighs 165. So as you can see loosing weight does not mean the end.

Alan has been in and out of treatment for these past

few years and everytime he undergoes treatment his

appittite suffers. It eventually comes back about a

month after treatment ends. I hope everything works

out for your Dad.

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thank you everyone! You've been so nice and made me feel so much better.

Debbie thanks for sharing your story, I wish you and your husband nothing but good news!!

Adrian, the articles were great! I forwarded them to my parents and sister. How do I check out OncTalk? Do you mean he addresses ALL the questions from this entire message board?

Barbara, you sound so happy and enjoying life, I wish my dad would do something other than sit around feeling sad... Or maybe it's the Pot doing it to you?? ha ha just kidding. Now, I thought a hospice is where you go when things are going badly, is that not the case anymore?

Thanks again everyone, what a great site!!!

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