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Update---Got my Treatment Plan

Deathorglory's picture
Deathorglory
Posts: 309
Joined: Jul 2013

Hello,

I've gotten my treatment plan after surgery.  All tests are showing that the surgery removed all of the cancer from my lung, so real chemo won't be prescribed.  My doctor wanted to put me on a couple of HER2 drugs to ward off another recurrence.  Herceptin, which i received for a very long time and a new HER2 drug.  Turned out the new drug is only approved for breast cancer (just like herceptin was a while ago) and it won't be paid for by insurance.  So, I'm back to herceptin every week.  It's been a bit of a roller coaster ride, but it looks like we've beaten back stage IV EC a second time.  

Best Wishes,

Ed

paul61's picture
paul61
Posts: 1346
Joined: Apr 2010

That is great news Ed!!!

I know the surgery was no fun and waiting for the treatment plan took WAY to long! I am glad they feel the surgery has removed the recurrence and you are certainly familiar with Herceptin. I wonder if you could get cost assistance for the second drug from the company that makes it or if your oncologist has some idea about where it is in the approval process for EC?

In any case I am so glad to hear that things are looking up again.

Best Regards,

Paul

 

Mulan1960
Posts: 28
Joined: Mar 2018

It's a long time since I've posted Ed but you were very helpful to me when my husband was diagnosed as stage 4.  I've been catching up with what's been happening to you and I'm so pleased that it looks like you've beaten stage 4 for a second time. 

Best wishes

Cath

kbdarnall
Posts: 29
Joined: Dec 2017

We really appreciate your posts. You inspire many people, I'm sure. Learning about EC requires lots of reading. Treatment choices are complicated. It's a very scary disease. Fortunately, my husband is also HER2 positive. Glad to know Herceptin treatment is helping you. I didn't know 2 Herceptin drugs could be used at the same time. Please write more when you get a chance. Thanks again. 

Deathorglory's picture
Deathorglory
Posts: 309
Joined: Jul 2013

Hello,

Well, last time I had a recurrence, it was stage IV.  I did real chemo for six months and it was gone.  Then I did weekly herceptin for another seven years.  This time, it was stage IV again, in a lung.  I had surgery which apparently got all of it.  So now I'm back doing the herceptin every week again.  Hopefully, it's another 7+ years before anything comes up again.  Sorry it's a boring story, but that's what I have.  I'll take boring all day long.  exciting & action packed isn't near as enjoyable.

Ed

gshaffer01
Posts: 2
Joined: May 2019

Were you NED after the first time and was it stage 4 the first time? My boyfriend is just now going through this the first time and I am a nervous wreck. 

Deathorglory's picture
Deathorglory
Posts: 309
Joined: Jul 2013

Hello,

My first time around with EC, I was stage 3.  It was 2008, and I was 40 like your boyfriend.  I did the full trimodal treatment plus a bonus course of chemo.  That is chemo/radiation followed by an esophagectomy.  Then another six months of bonus chemo that was much stronger than the chemo I got with radiation.  I was told I had a "complete response" and that there was no evidence of cancer anywhere.  I thought I was just going to go live my life, but in 2011 I had a recurrence in a lung (stage 4).  Surgery & radiation weren't options, so it was just chemo.  I was given a particularly grim prognosis (7-8 months) and was put on folfox.  I was going to join a clinical trial, but I tested HER2 positive, so herceptin replaced the trial.  The folfox & herceptin did their job really well, and I had another "complete response".  I continued on the herceptin every week until I had another recurrence in my lung this past year (stage 4, again).  For that one, it was just surgery.  They removed a goodly chunk of my lung this February, but we're confident that they got it all.  I am currently NED again and getting herceptin every week.

I'm doing pretty well.  I eat & drink whatever I want in whatever quantities I want.  I'm able to do most things physically, although I'm still not 100% from the lung surgery, yet.  It sucks that you find yourself here.  But I'd be optimistic about your boyfriend.  He's young & strong.  That's a HUGE advantage in dealing with this disease.  You don't mention what stage he is, so I'll just hope it's an early stage and that there will be a higher chance for successful treatment.  One thing I would encourage you to do as you guys go through this together, is to make sure you are taking care of yourself.  If you're a train wreck, you can't help him.  And he's going to need help.  Make sure that you are eating well & sleeping.  Make sure you have some activities going on that will give you a respite from dealing with this.  

Best Wishes,

Ed

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