Five Years Since Stage IV Diagnosis

Hello to both Ed and Paul:

 Let me say how happy it makes me to see Esophageal Cancer Survivors.  And it is so encouraging for those who are just starting out on this journey, and really cannot know what their travels will involve before it is all over.  So everyone that comes on here and let’s “newbies” know that there is “life after an Esophageal Cancer diagnosis” is helping lift someone’s hopes and spirits.

 And you’re right, where would we be without our spouses?  Back in 2002 when William (Billy) was first diagnosed, you may as well told me that I had Esophageal Cancer.  We are “ONE” in every way.  We’ve matured a lot since we first learned that a “hiccup” could actually be spelled “Esophageal Cancer Stage III” (T3N1M0).  I know how your wife feels as the caregiver, and I’m sure the two of you are closer together than ever before.  Cancer has a way of sorting out the trivial from the important things in life.  And we do really begin to cherish a new day as just that, because we don’t know how many we will have. 

 And Paul, we’ve been friends for a long time, and we’re so encouraged by your continued “cancer free” reports.  You are a support for those who are in the “thick of it right now” and is helpful in so many ways.  And ED, you’re supportive in a different kind of way because you first went through the initial diagnosis, had a time of complete success, only to find that later there would be a recurrence.  And in that Stage IV category, you have to be a role model and an inspiration. 

 As for me, I just started right off with Stage IV Peritoneal Carcinomatosis/Ovarian Cancer Stage IV back in November of 2012.  I am blessed to still be here, because I had a 6-month life expectancy.  My doctors and I are all surprised that I am still alive.    So my goal is to go as long as I can between periods of metastasis to yet other organs. With each successive CT or PET scan, the cancer has always advanced, but some more than at other times.

 My last PET/CT scan has shown significant advancement of the disease, and it has spread much further.  So I just began a third regimen of Carboplatin and Taxol this past Thursday, October 20^th.  Nope, I didn’t look forward to it because I’ve been there done that before!

  It is already making its ill effects known so I just hope it will result in something positive when I have my CT scan.  All the while, I know that chemotherapy has its limits and when the effects of it make one sicker than they would if they were not taking it, it’s time to quit!  So my prayer is that I will benefit by this regimen.  Even yet, it will only provide a temporary set-back for the cancer itself.  Those nodes seem to be working overtime.  For all who’ve suffered through and survived chemotherapy regimens, no need to explain all the side effects that can occur.  But the cancer, left to itself without treatment, will advance rapidly most often.

 Not too long ago I came across a saying worth remembering and taking it to heart.  “WORRY IS INTEREST PAID ON A DEBT THAT IS NOT YET DUE!”  And so when I find myself absorbed in thoughts of “what if”, the Lord tells me to “get back to where I am today” because only HE knows the answers to all the “what ifs” of our life!  So far I’ve not fallen into the self-pity-woe-is-me pit.  With His help I’m still living with and above the circumstances. 

 It is a battle to keep one’s mind in the present day and not attend your own funeral often when you know the big #4 is not going to stay dormant forever.  So not living in the land of denial, and not living in the future, when we only have “today” helps.  So if I had only one to thank, it would be the Lord because it is He who gifts the surgeons and their teams that practice down here on Planet Earth.  I also wonder why we refer to doctors as “practice?”  The last one we want is someone that is “practicing” on us! : )

 And so I, too, have many to thank, including our wonderful Dr. James D. Luketich at the University of Pittsburgh Medical Center for his pioneering Ivor Lewis Minimally Invasive Surgery.  My husband is now into his 14^th year of survival with no evidence of disease.  (NED).  Also, I have Dr. David Bartlett to thank as well at UPMC, because I went there for a 2^nd opinion.  He performed first exploratory surgery in December of 2012 and then Cytoreductive Surgery (commonly called debulking) on July 1, 2013. 

 And we can’t stress enough “newbies” having a second opinion and going where the “experienced surgeons” are rather than making “close to home” their first priority.  And in the case of both my husband and I, we have the same oncologist, Dr. Paul Conkling, a Duke graduate.  He works tirelessly and spends as much time as we need with us at each visit.  I just wish some new discoveries would come along that really are a breakthrough.  Even the majority of the immunotherapy drugs are still in the “wait-and-see stage”.  I wish more of the research companies would pool their efforts.  But alas, we have yet to find a cure for the common cold!

 Okay, just thought I couldn’t let your posts go by without commenting on them, and congratulating both of you and wish you all the best.

 Loretta

PET scan showed no other tumors other than the one small met in lung (1.2 cm).  treatment plan is 5 treatments with SBRT.  Sharing this info in case others are looking for info on distant recurrence.   

Thank you as your post has given me a little glimmer of hope for my husband who was just diagnosed Nov 4th with stage 4 esophageal cancer

eclc said:

Thank You

Ed,  I can't tell you how much I needed to read your post.  I'm Stage IV and I'm at the 9-11 months mark.  Normally when I post on this site I'm sharing my experiences and advice to someone who may be able to use it.  I'm in a particularly bad situation as I had lung cancer when I was 34 and underwent a right pnuemonectomy followed by radiation and chemo.  Now, 19 years later, the chemo caused Stage C chemo-induced cardiomyopathy and the radiation caused my esophageal cancer.  This means that I'm inoperable because of my two previous chest cavity surguries (and of course being Stage IV), and I'm ineligible for radiation because I had 50.4 Gy of radiation for my lung cancer treatment.  This leaves me with good ol' FOLFOX which is being administered for PALLIATIVE care...I hate that word!   I'm being treated at Johns Hopkins and have oversight from MD Anderson (who have been fantastic) but I now find myself gravitating towards Cancer Treatment Centers of America.  I've never been a fan of CTCA but I guess a drowning man will grab on to anything.  I really have to find someone who thinks outside of the box and isn't guided solely by the prevailing treatment regimen.  Enought babling for now...I just wanted to say that your post lifted my spirits and gives me an inkling of hope...and we all know that the thing that cancer does to us when presented with a 9-11 month life expectancy is steal all hope.

Thank you VERY MUCH for your post.

pat

I am new to this site, but I encourage you to look at natural medicine that will help your own body fight the cancer in addition to the standard medical treatment.  I am also a nurse and my husband now has stage 4 EC, but I am telling you that what I have been giving him to help his own body fight this battle has been working, including bringing up his white count, platelets and stabilizing HGB in the middle of intense chemo and radiation.  I know CTCA uses this approach as part of the entire 'healing' process so please start looking into it - considerations such as juice plus and organic tumeric and even frankencinse oil ......  Please read up and don't give up - my husband is not quite on board with my thoughts at this time, but I am telling you that I have seen it work ... I wish you the very best and will be praying for you (even if you do not believe in prayer!)

Hello everyone. My name is Michelle....my dad was diagnosed back in Sept 2015 with Stage 4 EC. Surgery not an option. He went thru one round of chemo...taxotear, his cancer went into remission for a few months then returned. He did another round of chemo. Diff type. Oxyplatin? Something like that. That didnt do anything. He stopped all chemo in Dec...just before Christmas. His last scan in Nov showed some spreading...hes not had any chemo in like 2 months. That scan he had was recent...just about a week ago...some larger spots but not rapid spreading...He has had some spreading to his liver, stomach and lungs. Hes getting ready to begin his 3rd chemo treatment. Tomorrow. Cyramza. Fingers crossed. Im worried becuase he has recently had bronchitis....and that has wore him down a bit. He was on 2 different types of antibiotic and a sterriod. He is finally coming around a little bit from that but he was having trouble breathing when he walks. This isnt normal for him. I had to light a fire up his drs butt to get my dad seen again, and his oxygen is fine, they found when he walked a few steps his heart rate would sky rocket. They called his heart dr and he upped his meds, but, my concern is the Cyramza can raise the blood pressure. And hes already having issues getting it to stablize. And, lately hes been extremely tired and sounds like hes drugged when i talk to him. More than normal. Im not sure what thats from...We are getting him some cannabis oil to try. Ive been reading up on it as much as I can...we are willing to try anything to even get another year of a decent quality of life from him...but obviously praying for more. Reading all the stories on here, my head is swimming. My dad is in his early 70's , and he has lived a hard life. Hes currently addicted to Norcos because of back surgery. Hoping the cannabis will help him get off some of that as Im aware that all of the crap hes had to pump in his body has to be taking a toll on his immune system. I wanted to discuss some immune boosting therapies with his oncologist but...his oncologist said there isnt any scientific evidence that anything like that will work. We got a second opinion from an oncologist at the University of Michigan. She stated that the chemo his oncologist was planning to use would be a good plan. So....thats what were going to do...but...I need help trying to figure out a way to help build up my dads immune system. To help him handle that crap chemo better. My dad is old skool...he does whatever his drs tell him....Im the one who asks the tough questions and seeks 2nd opinions . Im the one who got him into U of M. My dad listens to me ...and wants to look into the things I find out, but...hes also feeling very over whelmed and confused . He can only take so much at one time. I try to take things slow with him. Hence...the cannabis oil. Hes getting to the point where hes willing to try anything. But we have no experience with it and Im concerned about interactions with his heart meds and norcos. If anyone has any advice, Im all ears. Thank you !!

It sounds like your Dad has had a couple of the standard chemotherapy protocols for esophageal cancer. I am a bit surprised they did not do more than one round of the Taxotere if it was having a positive impact on his cancer. I assume they have tested your Dad’s tumor biopsies for HER2 overexpression although if he has cardiac issues Herceptin may not be an option.

I would be slightly hesitant to go into an additional round of chemotherapy with an active respiratory infection. I would certainly make sure you or he mentions it to his chemotherapy nurse prior to his infusion.

I am sure if you discuss cannabis oil with his oncologist you will get the usual “no medical evidence that it is effective” answer. On the other hand it sounds like your Dad may be in a place where quality of life is becoming a more important issue than quantity of life. I have no personal knowledge of cannabis oil effectiveness, but several folks have posted here that it is helpful in managing pain, anxiety, nausea, and appetite. As far as supporting your Dad’s immune system, getting adequate nutrition and hydration are always a challenge with cancer treatment. I have found that making smoothies with various fruits and vegetables augmented with protein powder is a good way to help maintain calorie levels when eating becomes difficult.

Your Dad is fortunate to have you as an advocate. Sometimes the combination of multiple drugs to treat individual issues can, in combination, cause some of the lethargy and confusion your Dad is experiencing. Hopefully you have an internist that is aware of all the medications your Dad is taking and is evaluating them for possible interactions.

Wishing you and your Dad the best possible outcomes.

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
Six Year Survivor

Just found out this week that my beloved dad has stage 3 esophageal adenocarcinoma - awaiting PET/CAT scans to see where/how far it's spread. We see the specialist this Friday. Can't tell you what a huge relief it is to see survivors in here, despite being an utter realist and fully aware of the viciousness of this cancer, I have to admit I wept with joy at your stories. Dad is prepared for a fight (I am so very grateful for the Aussie health system!!), but it's going to be a big one - it's so comforting to know there's others out there who've come out victorious. Thank you all for sharing xxx