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husband stage 4 Cant Eat

lilrusty's picture
lilrusty
Posts: 54
Joined: Sep 2011

My husband has had 2 chemo treatments for stage 4 he is having such a hard time eating. I thought after chemo this should shrink tumor. Other then pudding nothing is going down. Does the eating ever get better?

mishti
Posts: 24
Joined: Mar 2011

Hi,

Treatment does effect your eatiing. It does become a challenge. my dad was diagnosed with stage 4 and even hos couldn't eat. It gets better after the treatment is over. Is he undergoing radiation as well.

fredswilma's picture
fredswilma
Posts: 196
Joined: Mar 2011

Hi lilrusty
So sorry that you have found yourself here, it seems like everytime I come on this site there is another stg iv ec patient, so disheartening, my husband is also stg ivb so I do understand your frustrations.
Eating is the curse of EC sufferers, obviously the tumor restricts what can and can't go down, also with my husband there is alot of scarring of the eosphagus and the scarring does not allow the muscle to contract and push the food down add to that the Chemo which changes the taste and smell of food, so foods that would normally be eaten and enjoyed make them nauseas.
What I have found is my husband prefers to eat alone because he has to chew alot more and it takes alot longer to eat a meal and that frustrates him, I also feed him up on whey protein shakes filled with ice-cream and berries just to ensure he is getting the extra calories which he needs for the Chemo, also he eats alot more often with smaller meals.
Also next time you speak with his oncologist talk to him about a feeding tube, I know that sounds scary but he will need the extra nutrition, even if he doesn't use it so start, its kind of like an insurance policy.
There will be alot more people who will post to you soon and welcome you here and because we all live with this most become very knowlegable in fact nearly experts. Some of these have lost their loved ones yet still come back to help us, I for one would have been completely lost without their knowledge so I am pleased that you have found us, ask as many questions as you need we make a good sounding board.
Thinking of you
Ann

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Rusty,

Welcome to the group! Glad you found the boards, as they are an invaluable source of support and knowledge.

Sometimes chemo helps and shrinks the tumors and swallowing is easier soon after treatments start, other times not. It may mean it hasn't had time to work, or that the line of chemo is not affecting the tumor and shrinking it. This, on top of the taste changes of food, the lose of appetite, and the nausea. How is your husband doing otherwise with the chemo? Is he having side effects? Tell us more about his diagnosis and treatment plan. Also, where are you receiving cancer care?

Two is not a LOT, but I do know that we were told that it may open up my esophagus after a few treatments, but everyone responds completely differently to each chemo drug and 100 other factors.

The feeding tube Ann mentioned is a MUST and will save his life, if he is having trouble eating. Weight loss is the biggest problem he will face next to the cancer itself.

I will pray for you and your husband. May you find peace on this terrible journey and I hope we can all be here for you on your journey and help whenever we can.

Sherri or William will come along shortly and set you straight on stage IV and what to expect. Many others will offer you the truth as well.

God bless.
-Eric
Stage IVb Adenocarcinoma @ Distal Junction & Stomach with mets all over...
DX June, 2011. Given 6 months. NO chemo or radiation.

Laura23
Posts: 83
Joined: Jun 2011

Sorry that you are here but glad that you have found us. There is a wealth of information and support here.

I agree with Ann and Eric. Ask for a feeding tube - insist if you must. Make sure they give you a j-tube, which goes directly into the small intestine. The g-tube goes into the stomach and is not the best choice for EC patients. My husband had a j-tube placed before treatments and he used it to receive hydration from time to time. Some people never need it but have it for insurance purposes. Also, some people have problems with swelling of the esophagus, so much that they can not even drink water. In these cases, the j-tube is used for complete nutrition.

Laura
Wife to Luis, age 51
Dx 4/11/2011 T3N1M0, stage 3
MIE 8/30/2011

sammy123
Posts: 65
Joined: Apr 2011

you can but nestle carnation cans and they have 560 calories per can. no sugar and lactose free let me know if interested and I will tell you where to purchase. sorry no punctuations on ipad.

lilrusty's picture
lilrusty
Posts: 54
Joined: Sep 2011

Thanks to everyone for welcoming us into your lives. MY husbands treatment plan for stage 4 esophagus cancer is chemo only. No radiation or surgery in the near future. My husband was staged on his surgery date. He was suppose to have esophagus and top of stomach removed, but when they went in they seen spots of cancer on stomach wall. They did not do surgery but they did put in j-tube and port. Our thoracic surgeon was Dr. Omar Awais from UPMC Pittsburgh Pa. We are now at the Hillman Cancer Center. Oncologist is Dr.Michael Gibson. My husband feeds at night with the J-Tube but he tries so hard to eat regular food. It's very sad to watch. I was hoping that after a few treatments it would help with the eating. Guess I just want life to be the way it was, and its not. That has been the hardest thing for me as the caregiver. The chemo really puts my hubby down for the first few days. Slowly he gets some energy but rest often. He lost 35lbs but he did have quite a belly before this. I hope he keeps taking to the chemo like he's been. Thanks for all your input, any information helps. I'm lost so I'm glad to have this support

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

Lilrusty,
I know it's weird to be welcomed to a place none of us wants to be, but if you have to deal with EC, then this is a very good place.
My husband was also diagnosed with Stage IV this summer. Hopefully, the chemo will start to shrink your husband's tumor. Meanwhile, you might try giving him Greek yogurt. It'll go down like pudding but has about 15 grams of protein in it which is very important. Also, if he isn't feeling well, have him see the oncologist to see if he needs an IV for hydration. (I don't know about J tubes, so not sure if this is not an issue with them.) Apparently, it is very easy to get dehydrated while on chemo, even with drinking 8-10 glasses of non-caffeine liquids a day. And we were told that once a person on chemo gets a little dehydrated, it's impossible to get caught up by just drinking. My husband has had to go in twice for IV fluids, even tho he was really faithful about drinking. And each time after 1 or 2 liters of IV fluid, he felt SO much better.
Angie

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Angie,
The GREEK Yogurt is a godsend! I get the DANNON Brand of OKIOS Greek.
Every flavor with or without real fruit on the bottom, and theirs have 24% of you total daily protein in ONE 5 oz tiny container. I eat two to three a day, and it does go down like a thick liquid, too. Great suggestion! Thanks for sharing it I hadn't though of it.

-Eric

mrsbotch
Posts: 377
Joined: Oct 2010

Hi
I am so sorry at where you are and I know how lost you are now.This being a caregiver to an EC patient is the hardest job you will ever have. I did it for 2 years with my beloved husband Vince. He went from stage 2 to stage 4 and had a terrible time eating also. The weight loss alone is enough to drag you dowwn. I am glad your hubby has a feeding tube.

Thank God you are at UPMC and with Dr. Gibson.
It was too late for Vince in his struugle to go there but from what I understand he is one of the best in the country so you are at the right place.If anyone can help your hubby it would be him. Take any suggestions he may give you and go with them.
This is a tough battle, I will not sugar coat it, but we are all here for you anytime so please vent with us. You will need to. Unfortunately life will never be the same again, no matter what the outcome is. This cancer seems to be the worst as it affects a process our body does daily. EATING.

If you want to e-mail privately on the site please feel free to do so. I will be here for you.

Love

Barbara

You are not alone in this battle. We all GET IT.

megmacmd
Posts: 94
Joined: Jun 2011

Ioriginally was diagnosed march 2011 stage 3 butwith pelvic mets and perihilar mets its really a stage 4a unoperable which is fine with me I dont want to go through that and still have the same outcome I am a doctor and watched my father die of bladder cancer and my mom and sister die of bresat cancer in the last 4 years. I have undergone 12 rounds of flofox and currenty there is no activity in my esopagus and the pet scan show my nodes have shrunk I know ther is no cure just quiesent periods who knows how long it will last.I wonder if anyone else has had the same senerio I want to get my last child through college he is in his third year and whether its worth planning for retirement Im 57 I dont know how this thing progress' I suspect fairly rapidly when you stop responding, Chemo is begining to take a toll I have numb toes and fingers and am very fatigued and am having some trouble remembering things so I have to be very meticulous with all my work and plans rechecking them severall times I am still able to work but mostly I work and go home and rest how long I can keeep this up is an unknown itts been7 months of every 2-3 week chemo and so far I can eat but have no appetite and get heartburn from everything except yogurt and oatmeal and bannans and applesause.Ive lost 45 lbs which I needed to offf all my hypertension med and diabrtic meds too.Everyone says I look great but I am slowly fading and wondering how long someone can keep up this flofox regime which seems to be I know its not a cure but anyone with stories similar how long until it reoccurs? This is such an unpredicable disease How does it eventually progress from here anyone have any experience Imnot afraid of the truth and would lo9ve to here real live people tellme there experience. I do not want to do anything radical I firmly stand by my quality of life vs quantity I would rather have lesss time and be able to functionthey say Imnot a candidate for surgery which is fine by me as I have no caretaker my husband of 30 years died of a brain anuersym 3 years ago and all the children are on thier own except the youngest still in colllege I think I can make it through the nest 2 years for him and my option is to go to live with my eldest daughter if things get bad but have no idea when that might happen I am currently still working and taking care of the house but its getting harder and harder Enough whining I am lucky to have had theses 7 months relatively healthy summer at the beach and some kayaking when Im up for it Mostly I want to knowof any one who has just done flofox indefinately and where it lead them in the end sincerely Meg McINTYRE

lilrusty's picture
lilrusty
Posts: 54
Joined: Sep 2011

Dear Meg Im sorry for all the pain you've had in your life. Your post made me wonder how many other members stage 4 doing the 5-fu, Oxaliplatin and Leucovorin are doing or how they did while on it. My husband has his treatment every two weeks. Two hours at Hillman Center the 46 hours at home with pump. After the next 2 treatments he will have a pet scan done. What worries me with the pet scan is the cancer in his stomach wall was never detected until he went in for surgery. How will they see it now? Our dr never offered a cure but said we could contro it. Is that true? I hate the unknown, I like to be prepared and with this cancer it seems so far your not.

Callaloo's picture
Callaloo
Posts: 147
Joined: Nov 2010

I went through what your husband did last summer, started chemo and radiation in April, last chemo was in July. I never had a feeding tube, just managed to take a little liquid nourishment when I could in the form of Ensure. Even that was hard to get down. It is the chemo for the most part that affects the ability to eat . Later on the radiation made swallowing painful, and pain meds were very helpful there. But by the end of July, I was eatig everything again.

I think a feeding tube was never suggested because I was not a surgical candidate and keeping up my weight was not a priority. I never questioned it. But it all worked out. By November of last year I had gained back every pound I lost over the summer.

I will get better. This is the worst of it.

Lu

lilrusty's picture
lilrusty
Posts: 54
Joined: Sep 2011

HI Callaloo thanks for the post. My husband wasnt offered radiation just chemo. Are you still taking the chemo treatments? The feeding tube has been a life saver. Without it my husband would never have been able to keep any weight on. What was your chemo plan and how many have you had? Has your cancer gone into remission? I hope so. Hope Im not asking to many question. I know it will get better but getting there is seems so painful.

lilrusty's picture
lilrusty
Posts: 54
Joined: Sep 2011

HI Callaloo thanks for the post. My husband wasnt offered radiation just chemo. Are you still taking the chemo treatments? The feeding tube has been a life saver. Without it my husband would never have been able to keep any weight on. What was your chemo plan and how many have you had? Has your cancer gone into remission? I hope so. Hope Im not asking to many question. I know it will get better but getting there is seems so painful.

lilrusty's picture
lilrusty
Posts: 54
Joined: Sep 2011

HI Callaloo thanks for the post. My husband wasnt offered radiation just chemo. Are you still taking the chemo treatments? The feeding tube has been a life saver. Without it my husband would never have been able to keep any weight on. What was your chemo plan and how many have you had? Has your cancer gone into remission? I hope so. Hope Im not asking to many question. I know it will get better but getting there is seems so painful.

lilrusty's picture
lilrusty
Posts: 54
Joined: Sep 2011

HI Callaloo thanks for the post. My husband wasnt offered radiation just chemo. Are you still taking the chemo treatments? The feeding tube has been a life saver. Without it my husband would never have been able to keep any weight on. What was your chemo plan and how many have you had? Has your cancer gone into remission? I hope so. Hope Im not asking to many question. I know it will get better but getting there is seems so painful.

lilrusty's picture
lilrusty
Posts: 54
Joined: Sep 2011

HI Callaloo thanks for the post. My husband wasnt offered radiation just chemo. Are you still taking the chemo treatments? The feeding tube has been a life saver. Without it my husband would never have been able to keep any weight on. What was your chemo plan and how many have you had? Has your cancer gone into remission? I hope so. Hope Im not asking to many question. I know it will get better but getting there is so painful.

lilrusty's picture
lilrusty
Posts: 54
Joined: Sep 2011

HI Callaloo thanks for the post. My husband wasnt offered radiation just chemo. Are you still taking the chemo treatments? The feeding tube has been a life saver. Without it my husband would never have been able to keep any weight on. What was your chemo plan and how many have you had? Has your cancer gone into remission? I hope so. Hope Im not asking to many question. I know it will get better but getting there is so painful.

lilrusty's picture
lilrusty
Posts: 54
Joined: Sep 2011

HI Callaloo thanks for the post. My husband wasnt offered radiation just chemo. Are you still taking the chemo treatments? The feeding tube has been a life saver. Without it my husband would never have been able to keep any weight on. What was your chemo plan and how many have you had? Has your cancer gone into remission? I hope so. Hope Im not asking to many question. I know it will get better but getting there is seems so painful.

lilrusty's picture
lilrusty
Posts: 54
Joined: Sep 2011

HI Callaloo thanks for the post. My husband wasnt offered radiation just chemo. Are you still taking the chemo treatments? The feeding tube has been a life saver. Without it my husband would never have been able to keep any weight on. What was your chemo plan and how many have you had? Has your cancer gone into remission? I hope so. Hope Im not asking to many question. I know it will get better but getting there is so painful.

lilrusty's picture
lilrusty
Posts: 54
Joined: Sep 2011

HI Callaloo thanks for the post. My husband wasnt offered radiation just chemo. Are you still taking the chemo treatments? The feeding tube has been a life saver. Without it my husband would never have been able to keep any weight on. What was your chemo plan and how many have you had? Has your cancer gone into remission? I hope so. Hope Im not asking to many question. I know it will get better but getting there is so painful.

lilrusty's picture
lilrusty
Posts: 54
Joined: Sep 2011

HI Callaloo thanks for the post. My husband wasnt offered radiation just chemo. Are you still taking the chemo treatments? The feeding tube has been a life saver. Without it my husband would never have been able to keep any weight on. What was your chemo plan and how many have you had? Has your cancer gone into remission? I hope so. Hope Im not asking to many question. I know it will get better but getting there is so painful.

lilrusty's picture
lilrusty
Posts: 54
Joined: Sep 2011

sorry for the repeated post the computer went crazy

megmacmd
Posts: 94
Joined: Jun 2011

Itooam stage IV not a surgical candidate but Ive done 13 rounds of flofox and had a negativeesopageal biopsy on my esophagus and my pet scan showedimprovement to nodesin pelvic and perihialrregion. I am not sure what this means they talk about a chemo holiday but that I will probably always be on chemoat some time. How do you live not knowing what will happen. Thechemo gives me no appetitebut oatmeal and yougurt are great I can eat just dont feel like it I also have developed peripheral neuropathy of my toes and fingersso they stopped the oxiplatinum but Im still able to work Im a Pediatric Hospitalist in the neonatal intensive care unit love my job Hangin ther Any words of wisdom how long this can stay in remission? Meg

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Meg,
Hate to use the word, but welcome.

My understanding is that you can stay on FOLFOX, or any chemo regimen for that mater, until your cancer becomes immune to it. Just like bugs adapting to the bug spray, the cancer will mutate and become immune to the chemo. That's why they have several "lines" of chemo for cancer. First line may be FOLFOX, or any other combo of them, and then you can switch them around to control side effect, effectiveness, and immunity. When you get to the last line and there are no more, I was told that you stop and at that point enjoy the quality of life, not the quantity. Some people have taken the chemo pills for years I have read. It just depends on how well and long the cancer responds to any of them, and how you tolerate the effects. It's a balance between killing the cancer, and not killing the cancer patient. A very delicate balance.

I chose to do NO chemo at all. I was not offered radiation as the cancer has spread to places where radiation is not possible, and would not help. I have never been a candidate for surgery as I started at stage IV. I chose quality over quantity. I am very happy with my choice. I was diagnosed in June of this year. Only God knows how long any of us have. I am still doing quite well and eating like mad.

I wish you all the best and may God bless you and keep you strong on your journey with us.

PS- NO ONE can ask too many questions here!!

-Eric

jax568
Posts: 58
Joined: Aug 2011

I am know wondering too what other stage IV patients are receiving as chemo, other medications and the dosage of chemo. I have been wondering if certain people receive different dosages of the same chemo. Need to start a new thread on this question.

Jackie
husband stage IV

Callaloo's picture
Callaloo
Posts: 147
Joined: Nov 2010

My treatment plan is described in my profile. I wish everyone would use that. Anyway, I had 4 courses of Cisplatin (3 weeeks apart) along with 5FU in a fanny pack for 5 days every 3 weks. I had 28 sessions of radiation at the same time. This was April through June of 2010 (seems like another lifetime ago).

I guess treatment was considered a success because my primary tumor disappeared, as well as all the malignant lymph nodes that showed up in the scans. I was NED (no evidence of disease) as of the end of last summer. My life actually went back to normal for 8 months, and I took two vacations and went back to work full time.

But as you know, stage IV is not curable, so the nodes that successfully hid out during chemo, started growing and spreading again. So I am back on an oral form of chemo (Xeloda). I just take 6 pills a day, along with my pain meds and mood meds, and have just gone on with my life. It seems to have done the trick for now --- no new lesions or any evidence of diseaes. Doctors now say I could go on for years like this.... or not.

But life is good.

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hi Lilrusty and welcome to you and your husband. I was a caregiver for my dad. He passed from EC in March 2010 after it went to his liver. Two chemo treatments is not a lot. My dad received 6 weeks of chemo and radiation before his tumor shrunk. He too was stage IV. The tumor did shrink, but there was also a lot of scar tissue caused from radiation. Because of this, he had to get his esophagus stretched, and also had to have a stent put in. After these procedures he was able to eat much better. The other option your husband may have is to have a feeding tube put in. Hope this helps. Keep in touch.
Tina in Va

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