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EC Back in the Liver after 4 1/2 years

Apurva32
Posts: 14
Joined: Aug 2010

Hi All, 

I have been Cancer free for the past 4 1/2 years was doing extremely well and then as I was undergoing my 5 year CT scan, boom…Cancer is back in the liver. I have two lesions and I just underwent a needle biopsy to confirm the type etc. 

Has any one on this board dealt with a similar situation and/or know any better options.

I am 37, my initial diagnosis was Esophageal Cancer (Adenocarcenoma) at the junction when I was 32, was treated at MSKCC, had Chemo, Radiation and Esophagectomy. After the initial years life got much better, I was doing great and for the past two years been physically very active. I ran two half marathon's the past two years, and over all still don’t have any discomfort/complains, though I know things can go downhill very fast and very quick. 

I am currently doing extensive juicing and have been on raw and vegetrian diet since I have foind out. Any inputs, insights and experiences from folks here, who have experienced, some thing similar or who have family members or friends who had similar situation/diagnosis, would be greatly appreciated. I am open to alternative treatments, have been doing juicing and other such mainstream alternative options, since I know once it hits the Liver its very tricky and almost fatal.

Thanks

dfd24
Posts: 82
Joined: Mar 2011

hello,

Have you been tested for Her2? if you don't know it is important to find out as you can be treated  with Herceptin if you are positive. It is a good thing to be able to have Herceptin, it is targeted therapy.

My husband also had recurrence. the doctors forgot to test him for her2 . they did the test when I asked about it and in fact my husband is positive. My hsuband is getting herceptin and chemo and is feeling good.

 if you want to see my husband's medical history to the site smart patients and look up dfd24.  

wish you all the best. 

danièle

Apurva32
Posts: 14
Joined: Aug 2010

My Doctor's at MSKCC have ordered to test me for HER2 so they can do targeted therapy, they have also ordered for Liver Biopsy, the results of which I will be discusing with my Dr's on thursday. 

If you don't mind me asking, what exact therapy is your husdand undergoing?

 

dfd24
Posts: 82
Joined: Mar 2011

In my husband's case they forgot to test him for her2 at the time of recurrence in 2012 so he had six cycles of cisplatin 5 Fu . almost everything disappeared. he was then on maintenance xeloda and in march 2013 the ct scan showed progression. 

i then asked about her2 and they then tested him and he was positive. he was then given herceptin and folfox. my husband's oncologist wants to avoid permanent neuropathy so she stops  the oxaliplatin after six cycles and just gives LV5FU2 . but when the oxaliplatin stops the cancer progresses . ( oxaliplatin is in the folfox )

so now she is studying if she can give a different  drug in addition to the herceptin.

if you want a complete health profile of my husband's treatment you can go to smart patients ( another site like this one ) and look up daniele in the EC group.

in my husband's case they are treating the cancer as a chronic disease, which means it is not cured but your quality of life is maintained.

 I don't believe alternative medecine would be sufficient to control the disease.

You are at a very good center so you will get very good care and they'll have all the latest information.

Please let us know what they decide in terms of treatment and tell us how you're doing.

wish you all the best,

danièle

 

Deathorglory
Posts: 63
Joined: Jul 2013

Hello,

 

I was 2 1/2 years clean from my initial Stage III EC when I had a recurrence in my lung.  Unfortunately, that's just what EC does; it comes back if it didn't get you the first time.  Lung, liver I don't think there's a great difference in prognosis; it's not good.  I was HER2+, which is good and bad.  It means the cancer is quite agressive, but that Herceptin is a powerful counter treatment.  It had just been approved for gastric junction cancer a couple of months before my diagnosis.  I was dealing with folks at Thomas Jefferson and Johns Hopkins which meant they were up to the minute as far as treatments go.  That you are at MSK is excellent.  They'll be as current as possible also.  I was prescribed  24 weeks of Herceptin and 12 biweekly rounds of Folfox.  I was given no real hope by my docs, it turned out that that regimen was very successful for me.  They gave me 7-8 months, but I'm 2 /12 years on and still testing completely clean.  I think that around 15-20% of folks are HER2+, so it's not super rare.  I'm still doing weekly Herceptin (I had an appointment with my oncologist this afternoon and we again decided to continue on with Herceptin).  There's no data out there to guide us, so we're basically making it up as we go.  My belief is that the Herceptin made the folfox more effective and that the continued Herceptin is fending off another recurrence.  My doctor can't confirm that, but she acknowledges that there's nothing out there to say my thoughts are wrong.  

 

I'm not a big believer in alternative therapies, although I use a couple of them myself.  My doc saw something that said aspirin might be an aid, so I've been taking 325 mg every day for a couple of years.  I also have been loading up on citrus (vitamin C).  I can't say that either has actually done any good, but I'm testing clean, so I keep doing those things just in case.

 

Metastatic recurrences are particularly grim.  I've researched it and I've come to realize that I am a statistical outlier.  But I do also exist, so there's something to that as well.  I hope you are able to find a niche as an outlier as well.  

 

All  the best,

 

Ed

jaycc
Posts: 131
Joined: Jul 2012

Hi,

You can find other Stage 4 EC people on the survivor's list, giving you a sense of hope. As already mentioned the numbers may seem agains you, but don't let that stop you. Keep positive, stay strong.

Link to list of survivors, you can search on Stages

http://www.ecaware.org/ecsurvivor/survivors/

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