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Why won't he eat?????

Bunky620
Posts: 6
Joined: Mar 2015

My husband was diagnosed the day after Christmas with NSCLC and completed his chemo 3 weeks ago and concurrent radiation 1 week ago. He seems way worse now than he did during treatment, and is sleeping over 22 hours a day. He will barely eat anything, and is probably only consuming about 500 calories a day. I've tried offering him so many things he likes, but he will only eat 2 bites and then will not eat any more. The less he eats, the weaker he becomes and the worse he feels which makes him want to eat even less. When I ask him why he won't eat, he just says he can't and to leave him alone. He says he isn't nauseous. His RBC, HGB, and HCT are now critically low and he is scheduled for a blood transfusion next week. I am so worried. His oncologist and radiation oncologist continue to suggest having him drink that Boost crap, but he doesn't like it and won't drink it, and he won't drink homemade smoothies or shakes either. He will eat "okay" at breakfast, but that is all. I asked his oncologist about an appetite stimulant, but he said my husband couldn't take that because it can cause blood clots and my husband has vascular issues. Does anyone have any suggestions??

cindycyn's picture
cindycyn
Posts: 5
Joined: Feb 2015

Are his scans clear of tumors?  If there are still visible cancer colonies they can cause loss of appetite. 

I can't get to the website for this company right now.  And they don't have their protein drinks on the site anyway.  I get these at Sprouts.  Vanilla is the best.  They contain whey protein and almond milk.  Boost is crap.  The first ingredient is corn syrup!  I drank them in the hospital and they made my long hair thick and shiny.  But it's not worth it to drink a highly processed chemical food.  I find when I drink these, they stimulate my appetite. 

https://www.facebook.com/CalifiaFarms

 

The blood transfusion should make him feel a lot better.  Why are they waiting so long?  If it was my MD, who is still involved even though I have an oncologist too, he would have me in the hospital with IV to feed me.  It almost got to that point. 

 

I felt worse after treatment ended too.  For a while.  I didn't have the radiation.  My scans were clear!  Will he eat yogurt?  Add organic hemp oil to anything he will get down.  And lots of raw garlic.  Probably the best thing to make him feel more like participaing in his recovery would be 1/2 tsp Turmeric in anything.  The flavor is mild and neutral.  It helps my feelings of well being like nothing else. 

 

I don't understand why his doctor(s) won't hospitalize him to feed him IV.  I would insist, perhaps even finding a new doctor.  Cancer patients starve.  No one here wants that to happen to your husband. 

 

I still struggle with eating too.  But getting better.  He might be able to drink some herbal teas that are a bit nutritous.  Are either of you nutrtionally knowledgeable at all?  Browse a site . .. iherb.com .  Just about anything they sell in the grocery section would be great.  Does he like nuts?  When I first came home I even drank at least one Sprite per day, usually two.  I rarely have them now.  But at least the sugar feeds the brain. 

 

I think he needs to go to a hospital. 

Bunky620
Posts: 6
Joined: Mar 2015

Thanks so much for responding, Cindy.  He hasn't had a new scan yet after completion of treatment.  When we went to his oncologist after all the chemo and radiation were done, the doctor wrote an order for a new PET scan and referred us to a thoracic surgeon.  He just said to go get a new PET in a week for restaging, but everything I had read said to wait 4 - 6 weeks following treatment.  When I asked him about that he just said that yes, we could wait 4 weeks.  It was kind of a wishy washy response when I wanted a definite course of action with supporting reasons.  I made the appointment 4 weeks out with the surgeon visit 3 days later. Although I seriously don't think my husband could deal well with surgery, we will go ahead with the consult.  He is so very weak and coughing up stuff all the time.  Last Friday his HGB was down to 7.9 and the doctor said he should get a blood transfusion.  My husband said he didn't really want to do that, so the doctor said he could get an Aranesp injection and then come back for a CBC on Monday and if there wasn't adequate improvement he would still need the transfusion on Tuesday.  My husband was there a couple hours getting IV fluids and they had him sign an acknowledgment form for the Aranesp that said he understood it could make the tumor grow faster and he might die sooner.  What???  Then the nurse came and said she had to get insurance company approval before she could give him the injection.  He finished the fluids, and I thought he would get the Aranesp, but the nurse said she didn't mean that day -- that it would take awhile for approval.  So I said he would just go get the transfusion then.  After going home and reading everything online about Aranesp, I am glad he didn't get it, and I also read it takes weeks to "work".  I wanted him to get the transfusion right away, but evidently he couldn't do it on the weekend unless he was an inpatient, and the hospital required him to come the day before for a type and cross.  We did that today, but by now he is even worse and could hardly walk.  It is like concrete blocks are strapped to his legs.  At the hospital they refused to take the blood from his port, but at least we got that done.  The appointment we have for the transfusion is at 8:00 a.m. tomorrow, and while we were at the hospital I went to the infusion center to ask if we could come later since it takes so long to try to get him up and out of the house.  Well, the nurse told me there was no appointment for him, even though I had the paper from the oncologist telling us when they had made the arrangements for, and we could not get the transfusion tomorrow.  I was beyond destressed at this point, and told them he might not last another day if he has to wait any longer.  They kept saying they had already scheduled someone else, but could see I was close to tears and called my onologist's office.  They put me on the phone and I was told he would not get the transfusion because we did not come back today for another CBC.  He just had one -- nothing has changed!!  He is weak and sick and isn't eating anything.  I explained again that we were only to get another CBC if he had the injection, and he did not.   I was so upset with all of these people, but trying to hold it all together for my husband.  After much arguing back and forth, they finally said he could come tomorrow.  I'm just praying that this will make a difference for him.

Yes, the ingredients for Boost are gross -- water, corn syrup, sugar,vegetable oil, and chemicals.  How is that good nutrition?  He used to eat yogurt, nuts, fruit, etc. while he was having his infusions.  This whole not eating thing is a recent development.  I just don't understand it.  He keeps saying forcefully that he can't eat.  I told him I would spoonfeed him and all he would have to do is open his mouth. He just continues to refuse.  I think marijuana would help, and although it's been legalized in my state the distribution is not in place yet.   I'm trying not to make it into a battle, but if he doesn't start eating more there is no way he'll stay alive. He doesn't talk about it, but I don't think he wants to die.  I did think about taking him to the ER, but he won't go and our hospital experiences (4 different ones now) have been incredibly awful.  We sat at one for 6 hours and another for 4 hours without ever seeing a doctor even though he had chest pains and was short of breath and is 69 years old.  If it comes down to it, I guess I will have to call 911. 

I'm going to consult with a new oncologist as soon as this transfusion crisis is behind us.  I'm looking at going to Johns Hopkins, which seems to have a good reputation.

cindycyn's picture
cindycyn
Posts: 5
Joined: Feb 2015

Don't hesitate to call 911.  Tell them which hospital you want.  Is there a Presbyterian hospital in your area?  I had an awful first hospital too.  What about an MD?  Does he have one.  My onocologist can't admit to the hospital, but my MD can.  The transfusion will make him feel a lot better.  There's no reason to rush into surgery.  They wanted me to get radiation as a precaution!  No thanks.  I am clear of visible cancer cells.  I am doing the medical mainstream to the point it is sensible.  But I have limits.  I had SCLC and it is rapid. 

 

There is a mushroom tonic.  It's expensive, but it has scientific research and it makes me feel stronger.  Turmeric.  Herbal tea . nothing too strong, something like Tulsi.  These are the things that work for me.  Obviously I can't give medical advice.  But he really needs hospital care from what I'm reading.  And I'm glad the injection didn't work out either.  I don't know what that is, but I know adjunctive drugs and stuff, and some are worse than chemo.  If you can get John Hopkins ASAP that would be great.  You may need to call your insruance company as well.  You have that right.  It's your policy. 

 

My advice would be to find a way to calm yourself.  In my case I just have a certainty that whatever happens will be the 'right' thing.  Don't let the doctors or nurses run over you.  Just stay calm.  Get something into him or call 911.  I know what that weak state feels like.  We have to recover from the chemo and with radiation too, it can take years to recover, according to a friend who had both.  Just getting over chemo and the bone drug they gave me takes a huge toll.  I don't know why they are just blowing you off.  Again the question of MD.  Mine is the one who insisted I stay in the hospital until they found cancer that he suspected, and he is the one I am trusting with my after care.  Oncology doesn't have anything to offer except chemo/radiation/surgery.  Patients are not required to take any treatments they don't want. 

 

Just keep writing here as you can.  I hope the other group is giving you some support.  This place is a ghost town.  I just feel for you and your husband.  I know how much I have suffered, and it doesn't come close to what yall are going through. 

 

It might be hard, but I would also talk to him about his recovery.  What he wants to do.  He has to be commited to winning, even when it feels like he has already lost.  Whatever he decides is an honorable decision.  It's his life.  The transfusion will give him a better chance.  I said it, don't hesitate to dial 911.  When he sleeps like that, he might be unresponsive and you don't even know it.  That's a medical emergency. 

Since this is a site sponsored by who it is, I am hesitant to expect much from it.  I hope something I've written will help him make the choices you want.  I'm planning to go to a HS reunion in September 2016.  My oncologist has different expectations, from his statistics.  I know it can be done, because it has been. 

 

 

cindycyn's picture
cindycyn
Posts: 5
Joined: Feb 2015

You know. at this point it doesn't matter if he WOULD drink Boost.  It's not a long term solution, but anything  . gatorade?  milk?  I even drank chocolate milk for a long time.  Still do if I need it.  I know what it feels like when he 'can't eat'.  But he should be able to drink something just to get some life support in him.  Before you call 911 :) 

cindycyn's picture
cindycyn
Posts: 5
Joined: Feb 2015

I have to go to sleep.  That's the biggest problem I have now, and it is historical.  Lack of sleep is deadly.  But I've got to finish this.  Yours was the first and only post I saw today.  I've been celebrating with facebook friends all weekend about how well I've been doing, and how hard I am working to be well.  And then I read your cry for help.  It just hit me hard.  I have to do something, if I can.

 

I need sleep too badly to get into everything.  I want to just pass along a couple of medications.  Will he let you play them while he sleeps?  They don't need to be very loud.  Our subconscious is always awake. 

 

Use what you can and discard the rest. 

 

http://youtu.be/NMldMnEfxX8

 

http://youtu.be/6dcaCc3bIA8

dennycee
Posts: 836
Joined: Mar 2011

The most important thing is getting calories in him.   Seriously, if he'll eat ice cream and cookies three times a day then offer it 4 times.  Concurrent treatment is very difficult on the body and the effects are cumulative.  The dehydration will affect his appetite as well so hoping you've seen some improvement in the last few days.   It took a couple of months for my tastebuds to return to normal.  when he has put on a few pounds then start working on a balanced diet.  

Is it possible that a neighboring state has medical marijuana dispensaries, if yes, call and see if they will recognize an out of state license.  Has he tried Megace or Marinol- both are appetite stimulants.  

marypamela1's picture
marypamela1
Posts: 3
Joined: Apr 2015

I am so, so sorry for what you are having to go through. As far as hid appetite I only wish I had something positive to offer. I was dx with CA in 10-2014 and had chemo and rad x 2 sessions but my appetite only went downhill in the past month. I KNOW it is hard for him to eat, and the Ensure/Boost is ___. I live alone and by time I take care of animals after work, I am hard pressed to have energy to eat.
I truly hope you get a good response at the next consultation.

cindycyn's picture
cindycyn
Posts: 5
Joined: Feb 2015

Do you know if he has a desire to recover?  That is primary requirement.  Are they giving him too much medication, making him sleep all the time? 

 

Back off and don't nag him.  That's stress and we don't need it.  You've got to be sneaky, a bit.  And supportive without taking away his freedom.

 

If he will talk to you, and it were me, I would find out if he plans to beat this thing.  That's a CHOICE I had to make.

eihtak
Posts: 1422
Joined: Oct 2011

Hi, let me say I am so sorry for the situation both your husband and yourself are in.  I was just browsing this site as I usually post on the anal cancer forum but have connections here as well.

4 yrs ago I was treated for stage3b anal cancer with chemo and radiation, a year later breast cancer, and a recent thoracotomy to remove a recurrance in my lung with current chemo!

You mentioned that your husband finished radiation just one week ago. Keep in mind that radiation continues to take a toll on the body for weeks after treatment. Try to think of taking something out of the microwave and letting it sit for a few minutes....it will continue to cook as well as to have an effect on tissue in a large field surrounding the targeted area.

That being said, as mentioned, if he does not get fluid or nutrition soon, you may need to decide if it is necessary to call 911 as a means to get him hospitalized. While I am not a fan of "Boost" ingredients, short term, it did "boost" my condition during treatment/recovery and at least stimulate my appetite for more nutritional choices.  How would he respond to something frozen like a home-made popsicle?  You could use real fruit or smoothie ingredients, or even just juice if he'd take it. The coolness felt good to me and even when feeling queezy I didn't feel as though I was eating, so went down well.

Please keep us posted as I will have you and him in my thoughts and hoping you find the answers you seek.

katheryn

Bunky620
Posts: 6
Joined: Mar 2015

Thanks Cindy and Katheryn for caring enough to respond and give me some good suggestions to try.  You have really been through a lot, Katheryn and I'm guessing Cindy has as well.  It's such a horrible disease and the treatments are barbaric -- poisoning and burning.  I read somewhere that in the future people might look at the current cancer treatments in the same way as we now  look at the "bloodletting" that was done in the past to "cure" ailments.   If tomorrow's blood transfusion doesn't bring about any improvement, I will be getting my husband into the hospital one way or another. I will have to get up in about 6 hours to get ready to go, so looks like another sleepless night.  Frown

Annabelle41415's picture
Annabelle41415
Posts: 6124
Joined: Feb 2009

Sorry responding so late to your post, but my brother is going through the same thing without eating and now has a feeding tube.  I'm hoping that your husband can get past this and move towards healing.  Try Ensure if he doesn't like boost.  I'm from the colorectal board and during my treatment one of those was better tasting than the other but can't remember which one.  Hope that he continues to get extra help to get him on the road to recovery.  My thoughts are with you both.

Kim

Jean-Luc's picture
Jean-Luc
Posts: 137
Joined: Jan 2015

Hello,

so sorry your husband has trouble eating. :(

I know how it is, as I could not eat much, if any, for too long. That was after 3 entire weeks of constipation so severe that I could not defecate at all.

I lost 30+ pounds in a month and a half, or so.

I have lung cancer, stage 4, incurable (so far) - at 45 years old- and between the pleural effusion (extra liquid around the lung) and the cancerous mass growing on my ribs (inside of back), there was too much pressure and not enough space to eat. The cancerous spot in my left lung may or may not have made things harder.

Like your husband, I would eat two or three bites and then could not eat any more (even drinking water did that too, it was hard to drink and painful).
This lasted for weeks! But eventually things improved.

Once the radiation and chemo (carboplatin and taxol) were under way, it seems that they helped, and the anti inflamation meds.
Marinol seemed to help, too, both against the nausea and to help my appetite.

I also got bone strenghtener IVs, one per month, and that helped me both to have more energy and to help with my ribs which have cancer down into the bone.
Now I can eat almost normally, my weight has stopped dropping, and actually may be on the rise, slowly, I don't spend all day in bed like I used to, and I can do more things, including cooking. :)

I too refused to eat the dreadful boost, and eat real food instead.
The dietician suggested Liquid Hope as an organic, real food substitute to Boost or Ensure, and I really like it.
It tastes like a good veggie soup with turmeric. This also helps, it has 400+ calories in one pouch. Not cheap though, like 7 or 8 bucks a pouch, but worth it.

It is made locally in Ohio, so you may or may not find it available where you live.
Here's the manufacturer's website:
http://functionalformularies.com/liquid-meals/

Either copy and paste this address in your address bar, or try looking for Liquid Hope and you will find it.

Good luck!

I sure hope your husband gets a lot better, can eat, sleeps less and has a better life!

Jean-Luc :)

 

123daylight
Posts: 3
Joined: Mar 2015

My husband likes peanutbutter so I made those boost shakes w bnanana and peanut butter...seems likle he like drinks that were cool to his throat so add some chopped ice...also, we had sacks of chocolate candy....I know the sugar is not the best but he would eat it and it was soft to his throat to swollow...

It's really hard to suggest real food other than oatmeal and mashed potatoes and scrambled eggs...anything soft seemed to work...but again...I was forcing him to almost continually eat when he was awake and trying a variety of everything.

Nothing seemed to last too long that he would like...once and swhile he would eat some chicken noodle, but the shakes were the main things to keep his weight up. Ensure was the best for him. I was told by our doctor that if his weight dropped down by 10% they would have to put a port in him for a feeding tube and we wanted to make sure that didn't happen.

Sandwich meats were also easy to swallow with no bread... Also he got tired of water so he would choose to only drink a variety of sweet teas....(I hated all the sugar but at least he would drink anything with a little bit of taste to it.) Good luck to you.

BAK
Posts: 1
Joined: Mar 2015

It sounds like there may be psychological issues in his desire to not eat separate from any physical issues, many people can lose the fight in them and can aquire a giveup mentality. besides the medical treatment, sometimes the emotional support is just as important, a defeated mind has already lost half the battle. The fact he tells you to leave him alone is something to be concerned about. Anyone who is facing a serious illness does truly not want to be alone, but anger and despair take it's toll on a persons mental state, Having a counseler come to the house may be a good option besides the other medical care so that you may be able to get some more insight on what is going on in your husbands mind. Anyone who wants to survive will eat regardless of whether they desire the food or not and the fact that he's not nauseous brings the question, why won't he eat and only looking at the physical reasons, you may be leaving out a critical aspect which could be the emotional reasons. 

 

jlilolme
Posts: 1
Joined: Apr 2017

if your loved one will not eat after treatment get the product called liquid hope, make him eat it like pea soup (it tastes pretty good) or use with a g-tube. the ingredients will help him get stronger than if he is on boost, and once stronger he will have a better apetite

NeeNee62
Posts: 1
Joined: May 2018

My father is doing the same thing. Last chemo treatment was early March. He was in hospital and now Home under hospice care. He says he wants to get better, but absolutely refuses to eat or drink. Occasional part of Boosts, couple sips of milkshake, couple bites of applesauce, one grape!  (This is several days, not all in one). He is down from his original 235 lbs. to 140 lbs.  I’d like to know if anyone knows of an appetite stimulant that works?  Under hospice, hospitalization and feeding tube not an option. 

 

Anything you know of that has worked, I would love to hear.

 

thanks

ClaCla
Posts: 137
Joined: Jul 2017

NeeNee62, you are responding to a very old post.  You are likely to get better response if you start a brand new discussion about this subject.  Also, post in Inspire.com, as there are so many knowledgeable people to help you there.  I have already forgotten which foods were more tolerable after chemo and radiation, but I do recall that I could eat potatoes and have heard other people say the same.  There's some chemical in them that makes them tolerable after treatment has ended.  Since your father's condition has progressed to the point that he is in hospice, what foods he can tolerate might be very different than my experience anyway.  I am surprised to hear that a feeding tube is not an option in hospice, as it would seem that would make him more comfortable.  God bless.

kaybear28
Posts: 1
Joined: Apr 2019

Shakes... get some ice cream, and real fruit and high protein powder. My grandmother just passed on the 7th of this month from nsclc. She was in the final stage and I was her home hospice caretaker, she drank quite a bit of the homemade shakes. Talk to the doctors about CBD which can help with appetite but need to check as it may interfere with some medications. Also check into Rick Simpson oil. It has been known to help with a lot of the symptoms and help keep comfortable.  I pray for you and your family and hope that you all beat this. I know how hard it is AND how bad it hurts. I'm still in shock. Try different recipes for shakes and also add veggies !

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