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Ed's wife

Trying to find our way forward

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Hi all! My hubby was DX w/non small cell adenosarcoma 3 1/2 mths ago. He has finished 3 rounds of chemo & even though no nausea is struggling to maintain weight due to alot of gas pain when he eats. Feeling esp frustrated right now. He also has a lot of pain from the tumors & accompanying pleural fluid so medicated 24/7 & not feeling well enough to get out & walk esp since we live up north & winter set in early. Have joined the forum to learn what has worked for others. We lost our only child, our adult son last yr to a drunk driver and only have each other at this point. we're determined to maintain positivity & hope/pray for a good outcome but some days can be esp challenging. Just reading what others are going through helps esp the success stories. We live where there is great availability of local healthy food which is a blessing. Looking forward to learning from others & the support from others going though a similar journey! Blessings!

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Hello and welcome. Sorry that you need us but glad you found us. Have his doctors given any suggestions for the gas pain? Maintaining his weight is very important to getting through chemo. Milkshakes are a great way to put on some weight and they're easy on the stomach. Mashed potatoes were a go-to around here.Has your husband had any other treatment or is chemo his first line? 

There are lots of long term survivors here and they'll chime in with their experience and advice. As we enter cold and flu season, my suggestion is to avoid kids and large crowds. With your outdoor walking options limited, keep this in mind if he wants to go to a mall or someplace similar to walk. His immune system will be weak for a few months.

I'm sorry about your son. I can't begin to imagine the depths of your loss.

 

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Hello Ed's  wife.  Glad you found us.  This is a rough journey.  I started with chemo and daily radiation.  

I also had an overactive thyroid gland that also was making me loose weight.  That had to be wiped out.

As Susan said they did encourage me to eat lots of calories,  Shakes, puddings, ice cream etc Things easy to get down. 

Also I took anti nausea meds before chemo.   I truly hope that Ed responds well to his treatment . I don't know what stage he is 

but I was Stage 3 B .  It took about 6 months or treatment but it worked for me and I am still here to talk to you.

Keep us posted.

 

Donna G

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Thank you Susan & Donna! I'm glad to be here. It's been soooo stressful & I'm at a loss as to what to do to help him. Ed's usually not a picky eater but so many things taste funny now. He likes the Boost Plus that he first had in the hospital but if you read the ingred it's not fit for human consumption. Ingred. start w/water, high fructose corn syrup & then sugar. My understanding is that sugar is the worst thing as it feeds the cancer.  They say milk is bad but he doesn't like the coconut/almond milk. Ed is Stage 4. He is not a candidate for immunotherapy due to a heart transplant abt 15 yrs ago. The heart is still doing great in spite of all this. Donna, I did just make a smoothie w/milk & strawberries w/choc organic protein powder & it seemed to go better for him. I'm at a loss as to what to make for him. He was liking tapioca & egg custard but now has no desire for it. He has lost soooooo much weight & doesn't feel up to any activity. We live in a small town & he isn't really around people so catching something is not of major concern. I've read so much abt how important diet & exercise are so this is esp frustrating. He's done great w/not having nausea which is a blessing. But does get the belly pain. Wondering what foods would work best. Guess it's diff for everyone. I really appreciate this group being here.

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Hi Ed's wife, my suggestion is to offer him whatever he can eat that tastes OK to him, even if it seems "not fit for human consumption".  I do think that a well-balanced diet is a good thing, but right now it seems like the priority should be to get calories in and avoid any more weight loss.

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Ed's Wife,

Dietary sugar doesn't feed cancer anymore than it feeds other cells. I agree with Bridget. If he's losing weight while in treatment, he needs calories. During one of my 3 chemo treatments, everything tasted metallic and horrible. When I stopped eating and started losing weight, my wife, a dietitian, gave me some mint flavoring on a spoon. When I told her I could taste the mint, she made chocolate mint ice cream with crushed Oreo mint filling cookies and that was breakfast, lunch and dinner.  It reversed the weight loss.

Stay the course.

Tom 

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Thank you all! I got some ensure from our local pharmacy today & it set well w/him so I ordered some ensure Plus online 7 it will be here tomorrow. we live in a small town so limited local options but grateful for the amt of things we do have. I also got him some vanilla ice cream yesterday 7 that seemed to sit well too. This is 1 wk since 3rd chemo 7 he's in awful pain & seems confused. We were told this would be worst then the first 2. They are 3 wks apart. He's due to go for a CT scan soon. Hoping for something positive in it. Waiting for his nurse to call back. Has anyone else experienced something similar w/3rd chemo? This is so hard. Thanks!

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On 11/23/2019 at 10:42 AM, Ed's wife said:

Hi all! My hubby was DX w/non small cell adenosarcoma 3 1/2 mths ago. He has finished 3 rounds of chemo & even though no nausea is struggling to maintain weight due to alot of gas pain when he eats. Feeling esp frustrated right now. He also has a lot of pain from the tumors & accompanying pleural fluid so medicated 24/7 & not feeling well enough to get out & walk esp since we live up north & winter set in early. Have joined the forum to learn what has worked for others. We lost our only child, our adult son last yr to a drunk driver and only have each other at this point. we're determined to maintain positivity & hope/pray for a good outcome but some days can be esp challenging. Just reading what others are going through helps esp the success stories. We live where there is great availability of local healthy food which is a blessing. Looking forward to learning from others & the support from others going though a similar journey! Blessings!

Hey there my friends. I have not been here for awhile but decided to log on tonight and happy to meet you. First of all you are not alone here. We are not alone here. I am so glad you found this site cause it was so comforting to me. I had a tumor in the middle lobe of my right lung and needed a lobectomy. The support love and advice from here was so comforting. I had my operation in February 28 2019. Need to walk after but here is was cold in Nova Scotia. I went to Walmart and superstore and walked around. It helped. Sorry for the loss of your son. A few mths ago my cousin and friend was hit head on for no reason by another driver. Hard to except. My deepest condolences. Things do get more bearable. More tolerable. The memories in time will bring more smiles and sweet memories than tears. Those memories are something to hold on to. I have spots on other lung lobes so I am aware I may be fighting for some time. But now I am doing o.k. . Your going to find love and strength here which helps so much. I am sending you love hope and friendship. Tomorrow is a brand spanking new day. Brand new. 

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Hi Ed's Wife.  To find foods that would be easy on the stomach, you can try Ina, a personal intelligent nutritionist.  You can text questions and get responses 24/7 and it is a free service.  Here is information: https://lungevity.org/for-patients-caregivers/support-services/meet-ina-your-personal-intelligent-nutrition-assistant

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