After treatment

mbb3 · June 2010

My story began June 2009 when my husband was diagnosed. The tumor was in the lower esophagus and had spread to the lymph nodes. He had eight months of chemo (carboplatin and taxotere). He also had 7 weeks of radiation with a chemo pump (5FU). He took Zeloda for only two weeks as he had a severe skin reaction. In Feb. of this year, the PET scan showed he was cancer free. His oncologist had him take two more chemo treatments in March just to be sure. These last two treatments were worse than all the others. He ate very little and by May, he had no appetite at all. They ran several more tests which showed the ulcers (caused by the chemo/radiation) had healed. All the tests showed no cancer, yet he has felt worse for the last two months than he ever did before. He eats little to nothing, but does drink two to three Ensures each day. He is so weak and lightheaded all the time, staying in bed a good part of the day. He continues to lose weight, averaging about 5 lbs. a week. The dr. has him taking an IV bag of fluids/nutrients each week. He was never this sick in all those months of treatments.

We thought being cancer free meant slowly feeling better and stronger, but that has not been the case at all. My question to all of you: Has anyone experienced similar symptoms this severe after completing treatment and if so, do you have any advice for me?

Thank you for listening to my story. We would appreciate any help you can give us.
mbb3

Unknown · June 2010

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mbb3 · June 2010

After treatment
Thanks William for your response. My husband was 66 last June when he was diagnosed. Now to answer a few of your questions. Our oncologist was a professor at M.D. Anderson, Houston, Texas. She is the director of three cancer centers in the Houston area. She was highly recommended by several doctors. From the beginning, she said he would not need surgery. I have read that surgery is not a guarantee that cancer won't come back. He does not have trouble swallowing nor has he ever had a feeding tube. It's not that he can't eat, he just doesn't have an appetite and doesn't want to eat. He says he can't force it if he's not hungry. The reason for the IV's was for hydration. He just doesn't drink enough fluids either. He has lost so much weight that his stomach has shrunk and a few bites of food makes him feel full. This all really began when he had the stomach ulcers. But the last endoscopy showed they had healed.

So many people have the stomach problems during chemo rather than afterwards. That is why I wanted to know if others had had a similar reaction. We did have our office visit today and he was presribed medication to help increase the appetite. He will have his PET scan next week. We pray for a good report and that the medication works for him.

Thanks again, mbb3

K_ann1015 · June 2010

did they tell the STAGE of cancer?
Dear Mbb3,
Did they tell you the stage his cancer was?

Is your Dr now affiliated with MD Anderson?

I may have missed this---but has he or does he have a feeding tub just to help him stay hydrated and at least minimal nutrition?

Just slowly starving can cause they lethargy that he has---My dad was told he had to have 6 Ensures a day at one time just to maintain his weight so he could eventually have the surgery. (he is a small guy). That was the only way he could have MADE himself drink them--it was kind of torture---he just treated it "like medication" and scheduled himself one every 2 hours, but each would take a while to drink. So....it was really tedious. He did not get a j-tube until during surgery---they helped him survive.

Sorry for all of our questions---but it will help us share what we all have experienced if we know more.
Kim

mbb3 · June 2010

K_ann1015 said:
did they tell the STAGE of cancer?
Dear Mbb3,
Did they tell you the stage his cancer was?

Is your Dr now affiliated with MD Anderson?

I may have missed this---but has he or does he have a feeding tub just to help him stay hydrated and at least minimal nutrition?

Just slowly starving can cause they lethargy that he has---My dad was told he had to have 6 Ensures a day at one time just to maintain his weight so he could eventually have the surgery. (he is a small guy). That was the only way he could have MADE himself drink them--it was kind of torture---he just treated it "like medication" and scheduled himself one every 2 hours, but each would take a while to drink. So....it was really tedious. He did not get a j-tube until during surgery---they helped him survive.

Sorry for all of our questions---but it will help us share what we all have experienced if we know more.
Kim

Kim,
His cancer was stage
Kim,

His cancer was stage II. I agree that his weight loss and lightheadedness is due to him starving for food and fluids. I have him drinking 3 Ensures a day.(the 350 calorie ones) I will try to get him to drink more of them if I can. He weighed 256 when he was diagnosed last year. He now weighs 180. I didn't mention that he has been depressed for a few months now even though he was cancer free. I think that does contribute some to him not trying to eat a little every couple of hours as the drs. have recommended.

He has never been sick in our 45 yrs. of marriage. The last 13 months have really taken a toll on him. He is unemployed and worries constantly. He had several years yet before retiremnet was an option. I do believe he wants to give up sometimes.

Thanks for sharing your experience.
mbb3

nancyann3 · June 2010

mbb3 said:
Kim,
His cancer was stage
Kim,

His cancer was stage II. I agree that his weight loss and lightheadedness is due to him starving for food and fluids. I have him drinking 3 Ensures a day.(the 350 calorie ones) I will try to get him to drink more of them if I can. He weighed 256 when he was diagnosed last year. He now weighs 180. I didn't mention that he has been depressed for a few months now even though he was cancer free. I think that does contribute some to him not trying to eat a little every couple of hours as the drs. have recommended.

He has never been sick in our 45 yrs. of marriage. The last 13 months have really taken a toll on him. He is unemployed and worries constantly. He had several years yet before retiremnet was an option. I do believe he wants to give up sometimes.

Thanks for sharing your experience.
mbb3

Hi Kim
I have been reading your posts. I understand what your going though with the eating. My hubby didn't eat at first and lost a lot of weight. He started out at 220 and his lowest has been 146.

I to was told that my hubby needed 6 to 7 ensures a day to maintain. When they don't want to eat its hard to get them to take that much. What I did was add to the drinks my own mixture to make more calories, but the same volume of fluid.

Our doc likes this carnation instant breakfast for some reason. Your doc might prefer one of the others. I use the carnation and add a scoop of ice cream, cup of milk and a scoop of whey protien powder. This makes the drink around 500 calories each. At one time hubby was living on 5 of these a day and he was able to maintain his weight. It was hard for him starting out. He would tell me he couldn't hold that much, but I insisted and he found out he could hold that much. As he started eating again we decreased the shakes, but he still takes two a day just for the vitamins and calories.

My hubby was also put on the appetite med and steriods. I don't know how much they really helped because nothing will help if they don't let it.

I don't know what kind of appetite med your hubby was put on, mine was on the megastrol. I do want you to be aware that megastrol increases the chance of forming blood clots. Dehydration does to. I know this because my hubby got the clots and the docs took him off the med.

I tell you my story in hopes that something in it my help you and your husband.
I hope your husband improves and his appetite increases. It is very important he eats and drinks and stays active, or it can lead to other complications.

Nancy

Unknown · July 2010

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After treatment

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