Stage 4

Chadbetsy

 

 

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Does anyone have any advice for us?  My young husband was diagnosed with stage 3 EC in April.  He completed 6 weeks of chemo and rad, a several week wait, and then a new PET to tell us it has spread to the lung.  So the surgery was taken off the table.   He has now started aggressive chemo (I believe cisplatin, taxotere and a 5FU pump he wears for 5 days after each IV infusion.)  A nurse prac told him we were doing this just to prolong his life.  We can't accept that!  We have 4 young kids.  if you have any info you could share that would be helpful, please let me know.  Http://www.hamkickscancer.wordpress.com

LorettaMarshall

Betsy~This is a time 4 tears-I'm truly sorry to read your letter

 My dear Betsy:

 No sooner had I finished writing a letter to a dear sister who has just learned that her brother also has Stage IV EC cancer.&n

Deathorglory

Sorry to Hear

Hello Chadbetsy,

My situation was very siimilar to yours. I was fairly young (40 in 2008) when I was diagnosed with stage III EC.  I did chemo/radiation, then had surgery, then had some bonus chemo.  I had a complete response and tested clean for a couple of years.  Then I had a recurrence in my lung (stage IV when 44 in 2011) which brought horrible news from my oncologist, who didn't sugarcoat it.  She said that most people survive about 7-8 months from where I was, some a little longer, some a little less.  She also mentioned that "one or two folks have responded well to treatment and have gone on to live full lives."  That wasn't very much hope to hold onto, but I had nothing else so I planned to make it two or three.

I was initially upset that surgery wasn't an option.  I had a spare lung, so why not just remove one.  Turns out it's not that simple.  She was initially steering me into a clinical trial, but I tested HER2+, so the clinical trial was discarded for herceptin to accompany my chemo.  I was very fortunate in that herceptin had just been approved for use with metastatic EC a few months prior and that my oncologist was up to date with the cutting edge treatments.  Five years later and I still see folks on this board who are unfamiliar with it b/c their docs haven't brought it up with them, even in situations where it's applicable.  By the way, it may be applicable in your situation and I strongly suggest you ask your oncologist about it.

Some combination of my chemo (twelve rounds over twenty-four weeks) and the herceptin (weekly for five years) has left me "in remision" with a "complete response" (we don't use the word "cured" for stage IV according to my doctor) .  I'm still testing clean (it's five years in October) and living a fairly normal life.  Not quite as normal as it used to be, but there are prices to be paid to get what you want.  

Sorry that I don't have much practical help to offer except a story that may offer you some hope that miracles are possible.  It happened for me, why not you guys.

eclc

my two cents

Betsy (I'm assuming you're Betsy and your husband is Chad),

I am so sorry to hear about your situation.  I too was recently diagnosed with Stage IV esophageal (diagnosed last month).  Before I get into my story, let me just say that the advice given to you by Loretta and Ed is exactly right.  If you scan the other entries under esophageal cancer you'll see that they are regular contributors and are truly caring people who have a wealth of information to provide you that they gained (unfortunately) through experience.  I hope you'll take the time to research the options you have and know that we are all here to help you in any way we can.

One thing that I tell new patients is that YOU must be proactive and take charge of your life.  Doctors come in various degrees of knowledge, competency and bedside manners.  You and Chad must be comfortable with your oncologist...remember this...if Chad passes away your oncologist WILL have another patient, YOU will not have another Chad.  This should be your motivation to be the best advocate you can possibly be for him.  Loretta's suggestion that you get a second opinion is spot-on...I had FOUR!

I hope my story illustrates to you that there is always hope, it's important to stay on top of things, and getting other opinions is very important.

I was diagnosed with lung cancer when I was 34 years old...no typo...lung cancer.  I was told that there was nothing that could be done for me other than make me comfortable while I lived out my life. My wife and I had two young kids (11 year old son and 7 year old daughter at the time).   I lived with this prognosis for several weeks before one of the thoracic surgeons offered that he felt that he could get the tumor out but it would cost me my right lung.  I had my lung removed and volunteered for a high dose chemo/radiation protocol to make sure that the cancer was gone.  That was 19 years ago.  During the wait time,   I sought a second opinion at Bethesda Naval Hospital and finally a third opinion at Memorial Sloan Kettering.  Unfortunately, the treatment for my lung cancer has had its affect on me.  I've got congestive heart failure because the radiation clipped the right side of my heart and, now, stage IV esophageal cancer because the radiation essentially fried my mediastinum.

So let's talk my esophageal cancer diagnosis.  I was diagnosed with what would be stage II in July by Walter Reed Army Hospital (formerly Bethesda Naval Hospital...the place I got my second opinion for my lung cancer).  I then went to Johns Hopkins in Baltimore and was told that I needed a radical esophagectomy (long story and I'll spare the details but suffice to say it was far more than a standard esophagectomy).  I then went to Memorial Sloan Kettering in NYC which kind of went no where.  Finally, I went to MD Anderson in Houston for a fourth opinion. The doctor at MD Anderson reviewed my paperwork and asked me to postpone my surgery at Hopkins (which was alredy scheduled) to give him time to provide me with a full opinion.  He went on to say that he felt if I had the surgery that I would die on the table given my heart failure and compromised breathing from missing my lung.  He also wanted to test a few suspicious nodes that were identified in scans that Hopkins thought were insignificant.  I had MD Anderson perform the biopsies and one of the test came back with metastatic disease placing me at stage IV.  Had i survived the surger that Hopkins wanted to do, and survived, I would still have had cancer since they would not have removed all of the cancer...THAT would have absolutely sucked!  I should also add that I cannot have radiation as I've had my lifetime allotment with my lung cancer...the ONLY thing that I can have now is chemotherapy.  So on August 29th I had my first round of PALLIATIVE chemotherapy (FOLFOX).  i'll have another scan in 3 months and find out how much time they're giving me.

The nurse's comment to you that Chad is receiving chemo to prolong his life is a true statement.  But any medical treatment one receives is technically to prolong ones life.  Agree that her delivery lacked compassion, was rather crass and was ill-timed but if the treatment does extend Chad's life that is a good thing.  Now what we've got to figure out is how best to take the time he's being given to do something that kicks the crap out of the cancer.  The fact that he's young will certainly help.  Remember, I was 34 when I had lung cancer so I was able to have (and survive) a much more agressivve treatment plan. 

If you have ANY questions or need to bounce ideas off someone I hope that you'll remember us on this board...we've got a lot of first had experience and are all willing to help in any way we can. 

My best to you and Chad,

pat

 

goty2001

her2+ / herceptin

Betsy - I presume you'll have checked for husband being Her2+ - if not do so without delay.  I was diagnosed stage IV (EC+liver) 4.5 years ago - surgery out, basically given 10 months.  6 months aggressive chemo folowed by herceptin alone. All clear after 1 year, and just had final treatment last week. For what it's worth i went on major diet improvement - vegetable juices several times a day etc, cut out sugar, fat, meat etc. Took selenium & about 50XRDA vitamin C.  Hard to say how much it contributed but it felt like I was active in the battle, and the doctors don't have a better technical explanation so worth considering.

Georgia0701

Betsy - I am there with you -

Betsy - I am there with you - my huband and I have 3 children (youngest in elementary school) ...... my husband was just diagnosed with stage 4 on Nov 4th and we are likely where you are.   However, I am reading all I can and I encourage to do the same - I agree with above post that making significant changes in diet and helping the body naturally kill the cancer cells (which is what the bosy is supposed to do) would be worth pursuing....