New on board - Recent Surgery and Chemo

paul61

I am new to the group but very happy to find a place to exchange information with other survivors. I was diagnosed with Stage IIb Esophageal Cancer last October. I had an Ivor Lewis esophagetomy and gastric resection in December of last year. I started chemo with Cisplatin, Epirubicin, and 5 FU in February and have completed 4 rounds of the six rounds my oncologist prescribed.

The chemo is going as well as can be expected, my major problem has been diarrhea during the week that I receive all three chemo drugs. I get the Cisplatin and Epirubicin every 21 days and the 5 FU continuously via an infusion pump.

My challenges have been to eat enough to keep my weight steady and not get "dumping syndrome" from meals that are too large or too high in simple carbohydrates. I have tried supplement drinks like Boost and Nutrilite, etc but they tend to cause "dumping".

I am not sure if this will get better over time as I fully recover from the surgery and complete chemo. I hope so.

I am hoping someone has had similar experiences and has suggestions of coping techniques. I eat small meals and snacks six times a day and avoid sugar. That seems to help.

Yovana30

Hi Paul
Welcome a board.

This is the rigth place. I have no yet go thr chemo and surgery, but I know the someone in a short time will reply to you.

God Bless You,

Yovana

MOE58

I can help Paul my husband had the same surgery
Hi Paul,

My husband Jeff also had the IVOR LEWIS surgery last July 09, he did quite well came home in August. He had the same problem you did, and was scared to leave the house, BUT yes this does pass as time goes on, your NEW stomach is trying to cope with all the new organs, intestines, and etc. Stay away from the MILK this will cause your dumping syndrome also, and you said you stay away from sugar that is good, It took Jeff approx 6 months to get past that part of the problem. Did you have Chemo before Surgery? How old are you? Jeff was only 45, and had Chemo before surgery and no radiation after surgery.

I want to also suggest to stay away from peeling like potatoes, apples, any kind of skin on vegatable, strawberries, cause of the seeds, and tomatoe skin, this was given us advice by his specialist and once he did that he has done so much better, also don't eat meat, that is real tough, like steak, roast, ribs (pork) this will tend to get stuck in your new esophogaus and the only way to remove is to go to ER and have it removed by the specialist, trust me I know we have went twice.Also don't eat corn, and lots of fresh vegatables.


You also might notice some stricture, you might have to have it stretched over time he has had his stretched about 3 times.

He now eats sweets, and doesn't bother him to bad, so in due time you will be able to. Jeff was a person, that would eat a huge plate of food and more, but now that this surgery has been done he cuts his portions almost in half.

If you stay away from these things you will do much better. Also, if you just do everything the doctor tells you then things will get better, it will be a year in July and he has done so well in the past 3 months

If I can help on anything please do not hesitate to ask, I have walked it all.

You don't say if you have family or not to help please advise.

Hope this info helps you Paul just let me know ok?

Hugs
Lori/moe

Unknown

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K_ann1015

Hi Paul,
I haven't read all
Hi Paul,

I haven't read all the posts on this thread so this is probably already covered---but my dad was told to try to have some ensures to help keep up his weight post surgery---but it began to cause the dumping syndrome. I tried to get him just to have 1/2 can at a time, but he didn't want to. His Dr now said to try "Glucerna" as a supplement because it doesn't have as much sugar in it (used for people with Diabetes). Also, the small meals watching out for too much sugar or carbs helps. I have read that this gets better for most, but we'll have to wait & see for personal experience.... Also, it is interesting that my dad's doctors did not limit my dad on any foods--just gave some general guidelines. At first I didn't agree--thought he should have guidelines like other places give post esophagectomies. But, in retrospect, it has helped him. He eats almost anything he wants in small quantities and occasionally when something doesn't agree with him---he doesn't try it again. This is important for him because he has always been thin, (now he is very thin)---and I think it has helped him not loose more weight.
Good Luck!
Kim

Myrtle9

Hello Paul
I'm also new to the board. I wish I'd discovered this a long time ago! My prayers and best wishes to all who are here! My husband also had surgery done about 18 mo. ago at MUSC by Dr. Reed. He's never been dilated but she has him scoped yearly to see how things look. He also has his eating issues, better some days than others. He's become extremely lactose intolerant and is only able to drink lactose free milk and ice cream which he handles well. She told him to eat anything he wants and if it doesn't agree, try at a later date or eliminate that food and that he would know what works for him.

Bonnie

paul61

Myrtle9 said:

Hello Paul
I'm also new to the board. I wish I'd discovered this a long time ago! My prayers and best wishes to all who are here! My husband also had surgery done about 18 mo. ago at MUSC by Dr. Reed. He's never been dilated but she has him scoped yearly to see how things look. He also has his eating issues, better some days than others. He's become extremely lactose intolerant and is only able to drink lactose free milk and ice cream which he handles well. She told him to eat anything he wants and if it doesn't agree, try at a later date or eliminate that food and that he would know what works for him.

Bonnie

Hello Bonnie
Hello Bonnie,

It is nice to hear from someone who also had surgery at MUSC with Dr. Reed. I sounds like your husband was lucky and avoided Chemo after surgery. This is great if he did. I am also lactose intolerant (or at least drinking milk or eating ice cream seems to cause dumping). Do you live in South Carolina? I found another patient of Dr. Reed's named Jerry Anderson that lives in Columbia. He was nice enough to call me prior to my surgery and told me what to expect. Hope your husband is doing well.

Best Regards,

Paul Adams
AKA paul61

McCormick, South Carolina

Myrtle9

paul61 said:

Hello Bonnie
Hello Bonnie,

It is nice to hear from someone who also had surgery at MUSC with Dr. Reed. I sounds like your husband was lucky and avoided Chemo after surgery. This is great if he did. I am also lactose intolerant (or at least drinking milk or eating ice cream seems to cause dumping). Do you live in South Carolina? I found another patient of Dr. Reed's named Jerry Anderson that lives in Columbia. He was nice enough to call me prior to my surgery and told me what to expect. Hope your husband is doing well.

Best Regards,

Paul Adams
AKA paul61

McCormick, South Carolina

Hello Paul
No, unfortunately my husband needed postop chemo. He'd had 4 cycles of chemo prior to his surgery and the scans showed no node involvement. But the pathology report after surgery came back showing 2 out of 16 nodes involved. It was suggested by the tumor board there that he have postop radiation. His oncologist decided on 5 weeks of general radiation along with 5 FU on a pump. My husband tolerated it well except for some mouth sores. We no longer see Dr. Reed, instead see the oncologist every 3 months for blood work, CT scan and office visit. She continues to get the CT results and office notes though to keep watch over things. Hang in there...it's a rough road but the good days have outweighed the bad!

Take care,
Bonnie

Unknown

Myrtle9 said:

Hello Paul
I'm also new to the board. I wish I'd discovered this a long time ago! My prayers and best wishes to all who are here! My husband also had surgery done about 18 mo. ago at MUSC by Dr. Reed. He's never been dilated but she has him scoped yearly to see how things look. He also has his eating issues, better some days than others. He's become extremely lactose intolerant and is only able to drink lactose free milk and ice cream which he handles well. She told him to eat anything he wants and if it doesn't agree, try at a later date or eliminate that food and that he would know what works for him.

Bonnie

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