EC recurrence in the nodes ..Experiences please ?

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EC recurrence in the nodes ..Experiences please ?

by akb1972 on Sun Feb 10, 2019 11:41 AM

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We just got the devasting news of a recurrence in regional lymph nodes (thankfully, all organs are clear) - my 47 yr old hubby and father of 3 children between 9 and 21 years of age.   This has occured nearly 4 years following seemingly successful treatment (neoadjuvent chemo + radiation + esophagectomy) for (initially diagnosed) locally advanced T3N0 EC with clean surgical margins and negative nodes.  I would appreciate any and all experiences - both positive and negative - with treatment regimens for EC recurrence that is seen in regional lymph nodes with no other organ involvement other than microscopically positive adenocarcinoma cells (moderately differentiated)  in the esophagus.   I understand that most EC recurrences occur in years 1 and 2 following esophagecomy, and the survival for later stage recurrences such as ours imply maybe a slower growing cancer, or something to that effect.  But I really need to know more from all of you.   Also, if anyone has an APC gene mutation and participated in any gene therapy trials up in Boston or wherever, please be in touch as well. thank you ! 

RE: EC recurrence in the nodes ..Experiences please ?

by RickG1000 on Wed Feb 27, 2019 07:11 PM

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Not sure if i can help.

I was diagnosed with poorly differentiated adenocarcinoma EC in May of 2018. Stage IV. HER2+. Small 10mm tumor in the lower esophagus, and it had metasticized to a lot of lymph nodes in the chest region. I was never told how many, but i'm guessing between 50 to 100. No organ involvement. My CEA test, which measures the proteins the cancer emits, got as high as 3,200 in late May, if that helps gives an extent. I was never given an actual prognosis, but imagine if the treatments didn't work, it would be less than six months.

Surgery or radiation were not given as options. I went on a chemo regiment of FOLFOX plus Herceptin, every two weeks. Surprisinginly, it not only worked but worked very well. I also was able to work, do jiu jitsu, kayak, pretty much missed nothing in terms of living, as the chemo didn't affect me that bad. By the eight treatment in early September, my CEA was down to below two and a PET scan showed no evidence of disease (NED). The doctors then put me on just Herceptin, every three weeks.

Unfortunately, i got some night sweats in mid November, and i asked for a PET scan and a CEA test was done in early December. CEA came by at 26, and the PET scan showed one lymph node with around a 8-9mm tumor or growth.

My original doctor wanted to put me on the second line of treatment, Taxotere. He felt the first line failed and radiation was not an option. I disagreed. I felt the Folfox never stopped working, we just stopped using it. We argued (politely of course). I switched doctors. He said "Sure, we can try Folfox AND said radiation could be an option after the treatments end. Sold. CEA was up to about 250 to 300 by the time we started.

It's been almost three months now. I have six treatments in me, Folfox again with a 20% reduced dose.  Don't have the results of the latest FOLFOX attempt, but my CEA after five treatments was down to 73. It's working so far. A PET scan done two weeks ago showed no new disease, and the one lymph node was reduced in half.

God only knows what the future holds, but at the present pace, it sure looks like i will once again (maybe by mid April) get to a point where the PET scan shows no evidence of disease (NED). My new doctor is considering radiation therapy on the one spot too. Which i hope he does, as even a clean PET scan really means nothing with this disease. The PET scan only picks up tumors above about 3-4mm. So a clean scan is kind of meaningless at times, one can still have say a 0.5mm tumor there, and it will immediately start growing again.

I'm about 9.5 months into this. Still alive when odds said i shouldn't have been. I'm close to a second NED remission again. I have to think what is now 14 and soon to be 16 treatements of FOLFOX can really put it to the cancer in my lymph nodes. Maybe this time, my remission can be much longer than three months.

RE: EC recurrence in the nodes ..Experiences please ?

by akb1972 on Wed Feb 27, 2019 07:34 PM

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Thank you for taking the time to share. Your response to Folfox is incredibly encouraging. Is this a drug that’s safe to be on for longer term NED maintenance ? My husband’s recurrence is in a different area beyond thecesophageal wall much higher up (than original GEJ), so the team is talking chemo and re-radiation, since it’s outside the field originally radiated. We don’t yet know which chemo drug(s) the team will be using this time around.

RE: EC recurrence in the nodes ..Experiences please ?

by RickG1000 on Wed Feb 27, 2019 07:51 PM

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I'm currently at the Hillman Center in Pittsburgh (my new doctor), and have gotten second opinions in Philadelphia from the MD Anderson Clinic, as well as the University of Pennsylvania cancer clinic in late Nov of '18.

All three places seem to mostly agree on chemo treatments plans out there. In that there seems to be around 3 to maybe 4 lines of defense/treatments, that can be used in my situation. I would think my situation isn't that unique? Guessing this is what others see too?

The overall impression i got, is that each chemo treatment done will hopefully get a response (maybe 40% of the time?), and then work initially, until the cancer builds up plasticity/resistance, upon which a person then has to move to the next treatment, hoping it works. Obviously, if you can actually get the treatment to get the cancer to NED....that helps. You get remission and then a break. How long? God only knows. Maybe a few months, i've read stories on here where it's lasted for years.

From my situation, FOLFOX was the first line.

To answer your question.... I don't think FOLFOX is ok for long term NED maintenance. It's to harsh. I think due to the one component, Oxaliplatin, which is a platinum based chemo drug, which is the main driver of neurapathy. This seems to the main reason people are pulled off of it. Loss of feelings in the hands and feet. Myself? I have a bit of already. I typically have a little tingling/squishy/numbing in both. But it's not that bad, no loss of use of anything. It's dealable so far.

the above said....there is one guy on this board who claimed to be using a modified version of the above treatment, and he said he has done like three years of maintenance. Basically using Herceptin, plus Folfox...less the Oxilaplatin. He's in i think his fifth year now, after being diagnosed as stage 4.

From my own experience, i think radiation is vital on the area after the chemo treatments are done. Chemo rarely if every 'kills' the cancer, it typically leaves cells behind as people just can't stay on the chemo drugs long enough.

If it's only back in one area, relatively small and that area responds to chemo (Folfox, Taxotere, etc..)...that should be enough to hopefully get it to NED, and then radiation can put it away again for a while.

RE: EC recurrence in the nodes ..Experiences please ?

by bmg1979 on Sun Mar 03, 2019 08:57 PM

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You are correct, Oxaliplatin and anything ending in platin is harsh, but tends to be effective when it does work. So you want to take it as long as you can handle it. After 8 treatments I thought I was going to be a warrior at this, 11-13 were brutal before they stopped it. I am pretty sure I was having a reaction to it as well. 

Besides neuropathy, it tends to send your white cells and platelets into the sewer (my platelets were as low as 82 at one point). This is why so early people need blood transfusions. 

RE: EC recurrence in the nodes ..Experiences please ?

by rgansley on Mon Apr 15, 2019 01:39 PM

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HI,

I was diagnosed with EC in 2014 and first had chemo/radiation treatment and then an esophajectomy (not fun).  I had a recurrence with nodules appearing in both lungs about 1 year later.  It was then that my tumor was tested for HER2 and I was HER2+.  I went through FOLFOX with Herceptin for 6 months, and have now been just taking Herceptin for almost 3 years with no new growth.  The nodules in the lungs did get smaller with the FolFox/Herceptin treatment.  And, there has been no new growth since.

I do have a scan in a couple of days.  And mentally it is still anxiety/fear inducing even though I've had a good track record.  I feel pretty good, and my physical strength has slowly been getting better over the past 4 years despite a buch of weight loss.

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