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10 Weeks have past since Ivor-Lewis....now chemo again.

JanBred
Posts: 42
Joined: Jul 2012

I really do not know if I can handle the next regimen of treatment... Folfox and 5fu. One treatment every other week for 2 months. This was ordered by the top onco at Rochester/Mayo. I am so darn tired all of the time, have avoided all sweets, and eat 5-6 small meals per day. If I take one bite too much, I really pay for it..I have pain in my right lower rib area, which seems to be taking its time to heal. Anyone had this treatment regimen after IL surgery?? I had great results from chemo/rad before IL, and clean margins. At first my onco was not going to order any post op chemo, but changed her mind after consulting with her mentor at Mayo. Jan

DX 4-24-12
T2 N1 M0

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Jan,
YOu have been thru a lot. I had the 3 incision IL and had to have taxotere for my post op chemo. It was rough. I had a positive node found at surgery so my onc said to have post op chemo. Your regimen is more intensive than mine, I had the taxotere every 21 days and just twice. I did have the 5 fu as one of my preop chemos. I ate sweets though, I am a chocoholic after surgery but you will have dumping etc if you overeat. I still have it occasionally even 3 yrs but I eat normal amounts most of the time. The pain in your right side is normal, unfortunately, it takes a long time to heal. Don't be afraid to take pain meds for it. I used liquid oxycodone and just titrated down to smaller doses. Many of us that had the IL would say it took up to 7 months before we felt close to normal. So you can do this, many of us have, but just tell yourself, one step at a time, one day at a time. My email is hoperene@aol.com, if I can do anything more or answer anymore ?s. Not sure if I know anyone here who had the same post op regimen that you will be doing. My prayers will include you and hope you do well.
Donna70

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

could not get this to post then it posted it three times???
Donna70

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

sorry for repeat post.
Donna70

skyhawk
Posts: 19
Joined: Nov 2009

MD Anderson nor Sloan Ket recommends post op chemo. And they are the 2 top in the US when it comes to EC. But, you have to make the decision. Sloan has a great video on youtube that describes the treatments and in no way do they recommend it.

I was T3N1Mo and T0N1 after surgery 4 yrs ago and they said no post op chemo. I have had no problems so far and they did let me read a study that there was no survival benefit to post op chemo.If anything, it made pts weaker after surgery and 5 yr survival was down.

Again, you make the decision!!!!!!!!!!!!!!!!!!!!

paul61's picture
paul61
Posts: 1122
Joined: Apr 2010

After having Ivor Lewis surgery and struggling to get used to my new digestive system, the last thing in the world I wanted was chemotherapy. I had six rounds (18 weeks) of cisplatin, epirubicin, and 5 FU.

My recovery from surgery was similar to yours. I had very low energy, ate frequent small meals (although I was never hungry), and had pain and numbness on my right side for almost a year after my surgery.

But the good news is, I survived the chemo and year two was much better than year one. I learned to take things one day at a time and just focus on getting through that day. There were good days and bad days but over time things improved.

I know some oncologists will say there is no clinical proof that post operative chemotherapy alters the survival statistics, but many recommend it. Mine did and I wanted to be sure I gave myself every chance to eliminate cancer from my body.

It sounds daunting I know but you will get through it and be glad you did when you are done.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

NLMCEM
Posts: 52
Joined: Aug 2010

This is interesting to me as I wonder had my husband been given more treatments after surgery even though the scans showed clear, he may not have had the recurrence he has now?

We can't change that now but had we known what we know now, I would have wanted him to get it. After learning how the ct/scans pet/scans can not pick up the very tiniest cancer cell hiding, even my husband agrees that even though the chemo was rough, he could have his j-tube to help him with that and have the chemo after surgery.

My husband had the THE surgery as they also had to remove his gull bladder. They actually removed 44 nodes which is high compared to many I read. Now he is facing cancer nodes in his lungs, 2 on one side 3 on other. Question is is it the esophageal or lung cancer? So next trip is consult with surgeon to remove 1 lung node to biopsy to find out.

Chemo can be rough but if it is giving you an added weapon in this horrible battle I would go for it.

Praying you find peace and comfort,
EC Fighter Caregiver,
Carolyn

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

Nick came thorugh THE surgery like a champ. Going in he was T3N1M0, came out with clean margins and 2 clean CTs. and then.....

I lost my Nick to brain mets with a side of leptomengeal disease (cancer in the spinal fluid). The recurrence was aggressive and impossible to stall. 5 weeks from recurrence to passing.

I wish our Oncologist would have recommended post surgery chemo. One more sword in the FEC battle - couldn't hurt, right?

Terry
PROUD wife to Nick, age 49
lost EC battle, June 19, 2012

GerryS's picture
GerryS
Posts: 240
Joined: Aug 2010

Jan, I know you are weak and tired of treatments following such a tough surgery. I too had to do follow up chemo after IL surgery at Mayo. It is a rough period of time, but I would recommend doing the chemo to get all possible cancer cells. This is a very aggressive cancer and can be sneaky. I wish you well.

Gerry

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

I had positive lymph nodes after my IL, but post op chemo had to be stopped after a half round of 5 FU, because of complications. Fortunately I am now at five years and cured.
Even though I am ok and have done well without the chemo, my vote would be to take all you can physically take.
It has been rough on you I know, but you are on the healing side now, so whats a little longer?
Good luck-Praying it won't be too bad on you.
Sandra

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