EC IV survivors

Claire,

You will find Stage 4 survivors here. Some of them follow special diet alternatives, and some alternative homeopathic treatments like cannabis or mushroom extract, or special teas; almost always as an addition to standard medical treatment; and in cooperation with their oncologist. I see your Dad is scheduled for Herceptin so I assume his tumor has been tested and has been found to be HER2 positive. There are a number of survivors here who have had good success with monoclonal antibody based treatments.

It looks like your Dad’s oncologist is following the standard NCCN protocol for esophageal cancer in an HER2 positive patient so it looks like he is in the right place.

Unfortunately there are no guarantees for those of us who are EC survivors. We learn to take each day as a gift, that there will be some good days and some not so good days. We learn to ignore statistics because all of us are different and respond to treatment in different ways.  

It looks like your Dad is fortunate to have the love and support of a loving daughter who wants to understand his journey and offer her best support.

You will find an excellent resource for EC staging and treatment here: http://www.nccn.org/patients/guidelines/esophageal/index.html

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Four Year Survivor

Hello Claire,

Sorry to hear of your dad's diagnosis.  Unfortunately, it is completely reasonable to feel terrified.  This is serious, scary stuff you guys are dealing with.  I was initially dignosed in 2008 with Stage III EC.  I received chemo, radiation, surgery and then more chemo.  I had a "complete response" and tested cancer free for a couple of years.  In late 2011, I was diagnosed with a recurrence that had metastasized to my left lung.  I was told that radiation and surgery were not options and that my life expectancy was about 7-8 months.  I was set up for chemo (folfox) and I was possibly going to go for a clinical trial as well.  It turned out that I tested HER2/NEU+ and herceptin was going to replace any clinical trial.  I got set up for 12 biweekly rounds of folfox and 24 weekly rounds of herceptin.  Turned out that I had a great response to the treatment.  After finishing that 24 week course, I tested cancer free.  Because using herceptin for GE Junction cancers was brand new at the time (it had just been FDA approved a couple of months before I started), my doctor wasn't sure what to do at that point.  We discussed options and decided to continue with the weekly herceptin.  I still get it every Tuesday and I'm still testing cancer free.  While there's no research to support a cause/effect relationship there, there's also no evidence to suggest there isn't one either.  So we have a don't fix what's not broken mindset about it.  In my case, I believe that herceptin has been a complete game changer.  Unfortunately, there's not 10,000 more of me that would allow some statistically significant research to be done.

With respect to alternative therapies, I'm not a big fan of them.  The success stories are at best anecdotal.  I just can't believe that my doctor wouldn't tell me if blueberries really cured cancer.  That said, my doctor mentioned that she saw a study that showed taking a daily aspirin improved outcomes and told me to try it because "it can't hurt anything."  So I've been doing that.  No idea if it's helped, but it hasn't hurt, so....

Wishing all the best to your family,

Ed

Cobbins said:

Thanks Ed

Thanks for responding Ed!

I did read something on aspirin, I must look into that more... I've read so much at this point I can't contain it all

So happy the herceptin worked so well for you, hopefully it will work as well for my dad, thank you for sharing your story

Claire

I was diagnosed stage 2B in 7/2010 followed by chemo, radiation and MIE.  In 8/2011 the cancer was back in distant nodes (stage 4).  The worst one of nine nodes was removed because it was on my aorta and the remaining 8 were left for follow up chemo (EOX).  I only made it through 2 of the 5 suggested treatments.  I had to stop because of an allergic reaction to the chemo and I had pretty much had enough.  Three years later I still have 8 suspicious nodes but there has been no real change since 2011.  The only change I made was after the recurrence is I started using cannabis.  I just take a few hits every afternoon before supper.  I don’t know if the cannabis has helped to keep the cancer from spreading but I know for sure it has helped with appetite, digestion, reflux and pain. Unfortunately once you are stage 4 the cancer cannot be cured but it can be treated and sometimes for years.

Good luck,

Joel