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Help with Stage 4 EC new to this

MrsL
Posts: 6
Joined: Nov 2013

Hello,

 I have been able to read a little from these discussions in the attempt to find out more about esophageal cancer.  My father, age 66, was diagnosed this week with stage 4 EC with lymph node involvement (no organ involvement).

About 7 years ago he was diagnosed with Hodgkins lymphoma and beat it!  My mom gave me this information about exactly what he had… cutaneous T-cell lymphoma is like the umbrella over these two - mycosis fungoidis, seyzary syndrome.

 He is getting a biopsy of the lymph nodes this week to rule out lymphoma, but he  had blood work done at MD Anderson (October 2013) as well as a CT scan 6 months ago and nothing showed up for lymphoma.  But because of his history they want to rule it out. 

 I am writing to find out the good and bad experiences with stage 4 EC as well as your treatments and any alternatives medicines combined with the chemo.  He told my mom that since he beat the other cancer, he thinks he can beat this one, but we need to know the real picture facing stage 4 EC.   I’ve read that surgery is out and there has been no talk about surgery, just the chemo.

 He received treatment for the Hodgkins at MD Anderson in Houston at the time because they lived nearby.  They are now retired and living in Arkansas and have access to the medical centers in Little Rock along with my brother and large support system through their church and friends.

 Thanks for any of your stories…

ceb1's picture
ceb1
Posts: 7
Joined: Jun 2013

Hello,

My husband was diagnosed at age 48 with EC and he had lymph node involvement. I think they were calling it stage III, but could have been IIIb. He was also not a candidate for surgery due to the LN involvement. He has undergone radiation (33 rounds) combined with chemo (cisplatin/5FU). That lasted 3-4 months. His first scan after that treatment showed the tumor and lymph nodes were clean (probably due to the radiation since the LN were in the radiation field). Unfortunately, the next scan a few months later, showed mets to the pelvic cavity (stage IV). Since then he has been on 3 more different chemo regimens. We are now in his 3rd yr with this and I am sad to say he is not doing well. The pelvic mets have turned into tumors and have caused all kinds of problems in his GI system. It has also spread to his right femur. Because he was on the young side and strong, the doctors (we are at Ohio State University Medical Center) were very aggressive so I feel that bought us time. Really until this past June (so almost 2 yrs from his initial diagnosis) he was doing pretty well. He is now on his 4th chemo regimen which is experimental (based on genetics as we had a gene array done on his tumor). I am not sure how well it is working, but he wants to keep trying.

Everyone has a different experience, so take our story with that in mind. I think you need to make sure you have an up to date oncologist and get second opinions on his treatment plan if you are able. We worked with our oncologist to decide how aggressive to be and that was important for us to know that we had some say.

I wish you the best of luck as you navigate this disease.

first round chemo: 5FU, cisplatin (along with radiation)

second round chemo: FOLFIRI (5FU and irinotecan along with some things that may enhance these)

third round: paxlitaxel (taxol), Xeloda (oral 5FU), carboplatin (this was the aggressive treatment. It was rough on his blood counts but otherwise he tolerated it pretty well for about 8 months.Then it stopped working and the tumors grew).

forth round: mTOR inhibitor (everolimus)

 

 

MrsL
Posts: 6
Joined: Nov 2013

Thank you for your reply!  I spoke with my mother today and they do have an appointment for a second opinion, however it is two weeks from now.  They are starting chemo tomorrow morning though.     My husband's cousin put my mother in touch with someone who also has stage IV EC that lives in the same town so they were able to speak yesterday as well.  

 

I will continue reading posts from this site as I believe it to be very helpful.  I will also try to post updates on my dad.   Thanks and I wish the best for you and your husband!

 

dfd24
Posts: 79
Joined: Mar 2011

Hello, was your father tested for HER2 ? that is very important because if he is HER2+++ he should be 

getting herceptin.

all the best,

danièle

MrsL
Posts: 6
Joined: Nov 2013

I have passed on the information about HER2 to my mother.  I had read about it in other posts and thought she should ask about it.  Thanks for your reply!

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