husband stage 4 Cant Eat

lilrusty

Callaloo said:

I'm also stage IV
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

Callaloo
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

Callaloo said:

I'm also stage IV
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

Callaloo
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

Callaloo said:

I'm also stage IV
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

Callaloo
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

lilrusty said:

Callaloo
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.

computer went crazy
sorry for the repeated post the computer went crazy

chemosmoker

megmacmd said:

appetite and eating
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

Chemo and Folfox/Lines of Chemo...
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

chemosmoker said:

Chemo and Folfox/Lines of Chemo...
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

agreed good question lilrusty
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

Tina Blondek

Welcome
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

Callaloo

jax568 said:

agreed good question lilrusty
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

there is no standard chemo regimen for EC
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.

megmacmd

Callaloo said:

I'm also stage IV
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

stageIV
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