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38 and diagnosed with stage 4 esophageal cancer

1979bmg
Posts: 31
Joined: Sep 2017

I am a 38 year old male from Minnesota. Non smoker my entire life and pretty much a social drinker until recently. Since essentially Christmas of 2016, all I can say is I have just felt "off". Not really depressed, just unmotivated, undriven, and lethargic. It has happened a few times in the past 2 years that I woke up choking on stomach acid. 5 months ago I began to have some pretty noticeable pain swallowing food. 

In June, I went to the doctor because I was beginning to have severe acid reflux in addition to the swallowing problem. (Usually the 1st 3 to 4 bites of every meal need to be taken gingerly and slowly, and red meats and bread or a combination of those cause the most problems.) I told the doctor my symptoms in detail, The doctor barely looked at me, told me I had heartburn and threw a prescription for prilosic at me. The heartburn itself went away quickly, but the swallowing problem did not. and I have since switched to Zantac due to the long term side effects of PPIs)

 

Knowing the doctor was an idiot, I set up an appointment with a GI specialist at the Mayo clinic in Rochester in August. I detailed all my symptoms, and immediately they began with bloodwork, scans, biopsies, endoscopic ultrasounds...On day 1 I asked the original doc could this be esophageal cancer? "Highly unlikely, infinticimile numbers of people get it at your age. Usually people in their 50s, 60s, 70s who drink and/or smoke their whole lives develop it."

 

1 day later I find out that I have two abnormal tissue growths in my esophagus, 1 literally a mere inch or so above my stomach sphincter causing my esophagus to be 70% constricted. The other one in the mid of my esophagus, with a tiny amount of tissue connecting the two. Next day, suprise surprise, I find out that it is in fact adenocarcinoma. Next day, I found out it is in my lymph nodes, as far as my shoulders and abdomen, officially making it an early stage 4.

 

The good things I have going for me are that

1. My appetite is still normal as I write this. 

2. Although I don't feel 100%, I have a decent amount of energy, and am able to exercise, even vigorously, if I give myself enough recovery time.

3. It has still not spread to any major organs, I do have a tiny spot on my liver, so small that a biopsy or MRI would be pointless...they think that if it is cancerous, chemo would kill it very quickly.

4. I have a touch of youth left, and my blood work is as close to normal as a 38 year old moderate obese guy can be. No high blood pressure, no diabetes, no severe anemia, vitamin and mineral counts are very close to normal.

 

At this point I am doing a chemo coctail every two weeks with an experimental immune system booster. I just started round 2 today, and have a take home pump hooked to me until Friday. The goal is to shrink the 2 tumors enough and knock the cancer out of the lymph nodes to where we can at least do radiation. 

 

At this point, I am not even a candidate for surgery, though they haven't completely ruled it out. It is just too thick and too close to too many vital organs.

 

The surgery they want to do is to cut the top part of the stomach and bottom part of the esophagus out, match it up as best they can. Has anyone ever done this, survived, and had any quality of life or lived close to a normal life after it? They flat out told me even without complications, the first year after that surgery can be hell.

 

Looking back, I would guess that I have had this cancer at least 2 years, if not longer. There were just too many little hints of things being wrong that I wrote off as just "getting older"

 

1. Occasional metallic smelling stools for the last 2.5 years. 

2. I became a very slow eater without realizing it, and subconsciously I would eat slower and smaller portions.

3. Acid reflux problems that slowly got worse over two years but suddenly became severe earlier this summer.

4. Mild lethargy and a lack of motivation for well over 2 years.

5. Pain in mid to low esophagus after swallowing food that gradually got worse and worse. 

6. Dull, throbbing pain directly around and below the sternum. Sometimes it felt like light burning or poking (very different from heartburn, I tried to explain this to the first doctor). 

7. Sometimes with along with severe heartburn, pain and itching would radiate to the mid to upper back.

8. About 8 or so episodes in the past 2 years where I woke up choking on stomach acid. Anyone who has experienced this knows it can be 2 to 3 times more painful that simply vomiting. I sleep with my bed inclined now.

9. I get the hiccups now if I eat too fast, probably due to the bigger tumor pushing the esophagus in odd directions.

 

While I don't feel 100% like I mentioned, I surely do not feel ready to drop dead anytime real soon. The first chemo kicked my *** for about a day, but I was recovering from a cold to begin with. With #2 I am not feeling the greatest right now but I kind of know what to expect.

 

I know doctors love to throw numbers and stats at everyone and lump people into groups, but I am optimistic that I can fight and beat this. They wouldn't bother treating it if they didn't feel I at least had a fighting chance. The continuous pain around my sternum has all but disappeared, I managed to eat a steak tonight with very little complications. People who look at me do not even believe that I have cancer, I just don't look sick.

I think it is all about your own attitude, even your own spirituality. And the people who support you. Good luck and my thoughts and prayers are with anyone going through this or any type of cancer right now. I am curious to hear everyone's story and experiences. 

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Hello,

Hopefully you've saved your life by quickly realizing that the 1st doctor you went to wasn't any good at doctoring.  It happens too frequently that folks don't act quickly and the cancer spreads as a result of a doctor telling them to take some prilosec and don't worry about it.  Those stories are on this site. Getting to good doctors & hospitals, like the Mayo Clinic, is the most important thing that you can control.  Too many people just go to the hospital down the street because it's convenient.  You mention that you think attitude and support are important, and I agree with that, but I can't stress enough that good doctors are simply better than bad doctors.  By definition, 50% of all doctors and hospitals are below average.  It's critically important to go to the other half.  That is what you are doing, Mayo is a top of the line hospital.

I started out on this journey in 2008 at roughly your age, I was 40.  38 is way too young for this.  I was stage III and had really bad reflux for 20+ years.  Adenocarcinoma is usually a result of reflux.  Squamous cell carcinoma (the only type your first doctor seems to be aware of) can come from years of drinking and smoking.  I noticed food getting stuck in my throat.  I didn't know it, but that's called dysphagia and it"s a very common symptom of EC.  I had chemo/radiation, then surgery then a bonus course of chemo that was the same stuff as pre-surgery, but stronger.  I had a "complete response" and thought I was done with it.  A couple of years later (2011), I had a recurrence in a lung and was stage IV.  I was given 7-8 months (give or take).  I tested HER2+, so the clinical trial I was considering was replaced with Herceptin.  I had a very good response to the folfox/herceptin combo and was told again that I'd had a "complete response".  I've been testing clean (except for a recent nodule in a lung which is hopefully nothing) ever since.

You asked about the surgery.  It is in fact major big deal surgery.  I'd strongly recommend that you look at having it done laproscopically, instead of the open procedure.  It does take a while to adjust to the new way of life.  The two most obvious changes are that you cannot eat as much as before (not even close) and you'll need to sleep in an elevated position (perhaps even more than you're doing.  It took me a long time, but I've been living as close to a normal life as possible for years, now.  I eat and drink whatever I want in near whatever quantities as I want.  That's a big deal for EC folks.  

You mention that you're a little worse off after your second round of chemo.  The side effects are cumulative.  They will get progressively worse.  The side effects then slowly go away after you've stopped, but they don't just disappear right away.

1979bmg
Posts: 31
Joined: Sep 2017

I think I am one who simply had reflux his whole life but never developed actual heartburn symptoms until recently. Even as a little kid I remember burping/verping after any big meal, but I barely had a hint of heartburn until my mid 30s. Being a truck driver, I would sometimes drink up to 8 cups or more of coffee per day. The past 10 years I developed a love for spicy food as well, the hotter the better. I'm sure that didn't help anything.

cpassaro
Posts: 2
Joined: Sep 2017

My husband has esophageal cancer, and we live in Western Wisconsin, and he has been treating at Mayo as well.  I am curious to know who you are treating with, and whether you had a surgery consultation.  Are you having the chemo in Rochester?  My husband saw Dr. Harry Yoon for his Stage III adenocarcinoma, and then had Dr. Francis Nichols do his esophagectomy three years ago (traditional open Ivor Lewis).  Hopefully your chemo will shrink the tumors enough that surgery is a possibility.  If you have any specific questions about life after the surgery I can give you some insights. 

1979bmg
Posts: 31
Joined: Sep 2017

I am seeing Dr Amit Mahipal at this time. At this point I am not even a candidate for surgery, but they haven't ruled it out. I can't even do radiation at this point. I would have to do a full gastroesophagectomy (cut part of stomach and esophagus). 

cpassaro
Posts: 2
Joined: Sep 2017

I hope your chemo goes well, and they are able to do radiation.  You are in our thoughts and prayers. 

1979bmg
Posts: 31
Joined: Sep 2017

Just an update, I can say that a week after chemo #3 I feel much better overall, outside of the side effects of the chemotherapy itself. So far it is usually the day after I unhook my 46 hour pump that I feel the worst, usually I just sleep a lot and it it pretty much chicken soup and toast as far as food goes for about a day and a half.

I didn't even need my anti-nausea pills after my first treatment, after the 2nd one I took them for about 2 days and after the third treatment I took them for maybe 3 days. The side effects from each treatment have been progressively worse, but still nothing severe yet. The nausea this time seems to linger just a bit even a week later, it is a strange feeling to have nausea and be hungry at the same time. My appetite is back to normal except for the 2-3 days shortly after treatment, I can eat like a horse again. The swallowing problem is still there and noticeable, but significantly less. I used to be able to feel the food and pain as it passed both tumors, now I can only feel the larger one. 

 

The NP that I saw on the 4th said that my blood work literally looks amazing for someone with both cancer and chemo drugs in their system, other than slightly low iron and calcium all vitals are completely normal.

 

So far I am able to exercise and am pretty much back to normal 2 days after unhooking my pump. I have worked myself up to running over 3 miles every other day, and go to the gym every other day. 

 

I definitely do not feel 100%, the fatigue sometimes hits me when I least expect it, but I try to listen to my body and know my limits. 

 

I am hoping that this gives some hope to all stage IV's, and hopefully we are getting to the point where stage 4 is not an automatic death senfence for young and old alike.

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Hello,

It's good to hear that you're doing well with your treatment.  It hits different people in different ways, but I'd assume that your youth and physical fitness are factors working to your advantage. 

You mention that you've completed round #3 of chemo.  What chemo are you on and how many rounds are you scheduled for?  My stage IV go-around was 12 rounds of bi-weekly Folfox with weekly Herceptin.  It was brutal (especially at the end), but it was effective. 

I'm six years from my stage IV diagnosis this month.  Unfortunately, there aren't a ton of stage IV success stories out there (though there are a few).  Please continue posting/updating here, you are, in fact, giving hope to others.  If you look at the counter on your post, you can see that a whole lot more people read your posts than actually reply.  Each of those readers may well be someone you've positively impacted.

Best Wishes,

Ed

Funoutsyd's picture
Funoutsyd
Posts: 1
Joined: Oct 2017

Greetings,

I am now about to turn 56yo and I was diagnosed stage 4 grade 3 undefined esophageal adeno carcinoma in April of 2015.  I've learned to take a more wholistic approach to my own care, but I'm very interested in finding out what others are finding successful.  Just logged into the site today.

Dennis

 

DeeHour
Posts: 2
Joined: Oct 2017

HI Dennis,

My name is Deirdre and my father (60 Years Young) has just been diagnosed with Stage IV Esophageal Cancer on the 5th September. We are from Cork, Ireland and do not know of anyone else who is dealing with this type of cancer. My father started Chemo yesterday, Cisplatin & 5FU and HER2. I have had him on several supplements up until yesterday.

1) Beetroot, Apple, Carrot & tumeric Juice (all organic) daily - with Vitamin C powder & Wheatgrass powder added.

2) Cottage Cheese & Flaxseed - small quantity in the morning.

3) Salvestoral Platium - 3 times a day.

4) Smothies with - Almond butter, Almond Milk, Banana, 2 x TBS Chia Seeds, 1 x TBS Sunflower Seeds, Coconut Oil, Vegan Protein Powder, Milk Thistle & Essiac Capsules x 2.

5) Lemon, Baking Soda, Echinchea Water

6) Looking to start him on Curcumin Capsules from Life Expansion soon

However the hospital he is attending right now are very anti any alternative treatments and have told him to stop all of the above. I would be really interested in knowing you story and what you did and did not over the past 2 1/2 years.

Great to hear about survivors doing so well. <Content removed by CSN support staff>

Best Regards,

Dee 

lovemyman
Posts: 2
Joined: Nov 2017

This is my first attempt in connecting to someone similar to our situation.  My man is 53 yrs old, diagnosed with Stage IV Esophageal Adenocarcenoma exactly a year ago.  Went through a milder chemo/radiation to shrink the tumor (handled that one better than expected); esophajectomy 3 months after diagnosis, and now on FOLFOX and more radiation.  This round is proving to be much more challenging in that his anatomy is different than the last treatment, and the current treatment seems far more "severe" for lack of a better word.  We've become somewhat of chemists for nutrition and he juggles nutrition and hydration days due to a non-functioning stomach.  Much mucus keeps him up due to frequent spitting.  He's a strong guy with a great attitude and makes it easier for me that way.  Any insight you may have would possibly be helpful to us . . . I feel that looking at your post is somewhat of a crystal ball . . . thanks in advance and congratulations on your successful journey thus far!

 

kaward
Posts: 2
Joined: Jan 2018

What type of holistic approaches have you taken a nd does your doctor approve them?

1979bmg
Posts: 31
Joined: Sep 2017

Right before treatment number 5 yesterday, I got some pretty uplifting news.

 

Both PET AND CT Scans indicate that the cancer has not spread or grown anywhere else, and both tumors and all previously infected lymph nodes have become 30 to as much as 50 percent less infected. Some of the distal ones are hardly lighting up at all with contrast dye.

 

I was told I will probably never be a candidate for surgery, due to how far it has previously spread. I wasn't too crazy about 2 feet of my guts being ripped out anyway. Radiation is now becoming more of a possibility in the near future.

 

Blood work remains normal except for slightly low iron and platelets, the telltale signs of a cancer patient doing chemo.

 

I am in almost no pain at all, and have very little if any pain when eating. Two months ago I could feel two distinct areas of pain as food pushed down my esophagus, and it was becoming hard to deal with at times. My appetite is almost completely back to normal.

 

Chemo itself sucks but it is my cross to bear if I want to get better. The cold weather really has brought out the side effects of oxiliplatin. He has slightly lowered my dose twice due to the neuropathy that it causes.

 

I did chemo #5 yesterday and have my 46 hour Fanny pack hooked up as I write this. 

 

Please do not misread this and assume that I am on the way to a miracle cure. Even if I manage to completely eradicate all the cancer I may have to do a less frequent form of chemo or immunotherapy for the rest of my life. 

But even a 20 percent reduction is amazing after only 4 treatments.

 

I have no one greater to thank but the Lord Himself, and all the people who have been praying for me. The doctors and nurses at the Mayo clinic who do an amazing job, and have let me take part in the special study drug.

 

I hope this gives a great deal of hope and comfort to all who have been recently diagnosed as well as those still fighting it, and especially those who have lost loved ones. Cancer is still an evil deadly beast but things are different than they were 20 years ago. My uncle went to the Mayo clinic 25 ago with an abdomen full of cancer, all he was told was basically "seek alternative medicine and pray for a miracle, theres nothing we can do for you." 25 years later and by the grace of God , after conly 2 months and 4 chemo treatments I have put a big dent in one of the worst stage 4 cancers you can possibly get, and I am pretty much still living a normal life.

griffinmike
Posts: 5
Joined: Jan 2017

I declined the esophajectomy because of the negative posts I have read about the poor quality of life post op and a surgeon at Duke Medical that does about 100 of these surgeries a year and attends conferences to speak about the High risk for these surgeries being the  #1 risky surgery in this country.  I went to MD Anderson in Houston and had a very minor surgerical procedure (EMR) where the EC tumor was removed and I am currently desease free. MD Anderson has been ranked as the #1 cancer care center in the nation.

1979bmg
Posts: 31
Joined: Sep 2017

By the grace of God, I continue to show remarkable response to treatment.

After 8 rounds of chemo, I completed my 2nd round of CT scans and PET Scans just before New year's. 

All Scans show no new hypermetabolic activity. For now the disease is contained, slowly shrinking and not spreading.

 

In August I had upwards of 6 infected lymph nodes, the worst of which was one of my right paratrachael lymph node. It was literally almost the size of a golf ball 4 months ago, the SUV max went from off the charts in August to 12.6 in early November to 8.6 last week.

 

My distal esophageal tumor had a max SUV of 10.4 in August, down to 3.6 in early November, down to 3.2 last week. There is not much they can tell me about the small, upper secondary tumor, or if it still even exists.

 

The small spot on my liver, whatever it was, seems to have disappeared.

 

I am still told I will more than likely never be a candidate for surgery, but they haven't shut the door completely.

 

After my ninth round of chemo, my energy still remains decent and I am able to go to the gym and do long distance running in alternating days.

 

I no longer get the hiccups when I eat and am actually able to eat at a decent pace with no pain. I am no longer getting the night sweats that I used to have for 5 years or more. I have not had an episode of waking up choking on stomach acid since I started treatment. My appetite is great.

 

The only real problems I am having from the chemo are the increased neuropathy in the extreme cold weather up here (due to oxaliplatin). Also, my platelet counts continue to drop, well under 100 now and if they get too much lower we will have to pause or significantly reduce treatment for a while.

 

The was a note in my scans about "restaging", not sure if they "downgrade" a diagnosis or lower the stage # as things shrink and die off...Original diagnosis was T3, N2 in August.

paul61's picture
paul61
Posts: 1349
Joined: Apr 2010

It is wonderful to read your good news. A great way to start the New Year. Even if they say you may never be a surgical candidate, you are making great progress on first line treatments and if those don’t continue to work well, there is always second line immunotherapy approaches as well.

I had some issues with peripheral neuropathy in my feet after 6 rounds of cisplatin but it did gradually get better with time. It did take well over a year after I completed by chemotherapy to improve but it did gradually dissipate.

Wishing you continued good news from your scans!!

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
Eight Year Survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

 

 

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Hello,

I'm glad you're getting good reports.  I hope they continue and get even better.  

Oxaliplatin is not a fun ride.  I got six months of folfox (oxaliplatin is one of the drugs in the cocktail) from November to May, so straight through cold weather season.  The cold sensitivity went away fairly quickly when the chemo stopped, but some of the tingling/numbness is permanent for me.  Oh well, still worth it to be alive.  

Best wishes for a positive & healthy (as much as possible) New Year,

Ed

lovemyman
Posts: 2
Joined: Nov 2017

Wishing you all the best and thank you in advance for sharing your stories as I watch my Man tackle this monster.  Stage IV Esophageal Adinocarcinoma post esophagectomy, second round FOLFOX/Radiation.  Very interested in knowing how to manage eating and hydration without a functioning stomach, and dealing with radiation side effects such as ulcerated "everything".  We've been pretty proactive and smart about nutrition and treatment.  But now, mucus is setting in and it's difficult to sleep when needing to spit every few minutes, and at a 40 degree angle I might add.  He has all the "concoctions" to minimize all the side effects.  Very difficult ride . . . . feel free to chime in, I'll be checking in.

 

CancerEclipse's picture
CancerEclipse
Posts: 15
Joined: Jan 2018

Dear BMG,

I've fought with ec for 3 years, but not stage 4 level. Sorry yours was so advanced when they found it. I started my treatments with chemo-radiation then switched to naturopathic means for a couple years. Actually this regenerated my esophagus somewhat, kept my immune system strong (chemo really knocks that down) -- haven't had a cold for 3 years, and contained the cancer in the tumor area. If interested in how I dealt with this through the medical, natural, and spiritual, let me know.  cancereclipse@gmail.com

1979bmg
Posts: 31
Joined: Sep 2017

After 12 rounds of chemo, and my 3rd setsof CT/PET Scans, I have more great news!

As far as they can tell, The only area of cancer remaining is in one of my right paratrachael lymph nodes. It has decreased in size by over half since the beginning of this year, and the SUV Max from Contrast dye uptake has dropped massively from 8.6 to 3.9. If the response continues at this rate I may be looking at a complete response (remission, N.E.D.) by mid summer!

 

The doctors now think I really do not "need" surgery if we see a complete response. 

My 13th round of chemo after the scans was just plain brutal...but the worst is already wearing off after just 2 days. Everything seems to hit me so hard and so fast, I get severely nauseated while still at the clinic during infusion...havnt puked from any of this yet but I fear those days may be numbered. Low, fluctuating fever of about 99 to just over 101 for about 36 hours after infusion. Ugly, Red Crusty eyes for maybe 36 hours...Flu like joint and muscle aches...The worst of it still goes away within 48 hours.

 

All I have really done diet wise is massively cut back on the junk food and fast food. I do drink a lot of herbal teas, and have a few homemade smoothies a few times per week. 

 

I am taking a coctail of oxaliplatin, luecovorin, eloxi, emend, flurouracil, and immunotherapy study drug atezolizumab. I think the study drug was designed to destroy solid tumors...some sort of PDL-1 blocker? I'm not sure about all the scientific mumvo jumbo...

 

I am not completely out of the woods, but praising God that the light at the end of the tunnel is getting brighter.

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Hello 1979bmg,

That is amazing news.  I'm very glad for you.  Hope to hear back from you that you've been upgraded to "complete response".

Stay well,

Ed

1979bmg
Posts: 31
Joined: Sep 2017

Another amazing set of blood work and scans!

 

For the first time since August, every single aspect of my blood work and urine test was completely normal. Even my platelets have skyrocketed up to 152 from 94 just under 2 weeks ago. They have been as low as 86 prior to treatment. My liver enzymes that were slightly elevated continue to slowly decrease.

 

My Oxaliplatin was removed at the beginning of March due to worsening fevers the 2 days following treatment and increased neuropathy. They want everyone in my condition to do at least 8 consecutive rounds of it, I managed 13. It was not noted as Oxaliplatin failure, but might as well be in my book. Nasty, nasty stuff. And I hope they don't try giving it to me again. So I soldier on with Atezolizumab, Folfox, Leucovorin, Aloxi and Emend. With Oxaliplatin omitted, the current and last 3 treatments have been a picnic compared to what I was dealing with. The fatigue is still pretty pronounced for 2 days, but no more fever (and no more need to tax my already overworked liver with Tylonol to control it), no more severe body aches and chills, nausea not nearly as bad. Appetite is almost normal, even the 2 days after treatment.

 

I did have walking pneumonia after my April 4th treatment, I think I have mostly shook it off and praying that I don't relapse. I was already sick starting treatment on April 4th, but figured it was just a cold and I had dealt with that before on chemo. It ended up turning into a sinus infection and chest congestion that wouldn't go away. The X-rays didn't show any obvious inflammation but sometimes that is common in early pneumonia with chemo patients. I had the typical wheezing and chest rattling, so I was put in some pretty heavy antibiotics.

 

Now for the scans: Just like last time, the only cancer they can detect is in one of my right paratrachael lymph nodes. The SUV max has decreased from 3.9 to 3.3. compare that to the end of August when it was off the charts and still 12.6 in early November. And like every previous scan from November onward, the visual size appears to have decreased by almost half. They are not even positive that there is any cancer remaining there, it is possible that it is just remaining inflammation.

 

They did notice some irregular and possibly inflamed nodules in my lungs, hopefully they are just remaining inflammation from pneumonia...the doc is pretty sure that is what they are.

 

I am finally at a point where chemotherapy and radiation combined is at least a possibility. The downside is I would have to leave the immunitherapy trial, and there is no getting back into it once you leave. But what I am currently doing continues to work, and a complete response is still looking more and more likely at this point. I'm not sure if you believe in miracles, but statistically I should be dead or dying by now. 

God must want me on this Earth a little longer for some reason.

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Hello,

It's awesome to hear that you have even more great news.  Oxaliplatin is a rough ride, but it seems like you got a full course of it before stopping, so hopefully you got the full benefit.  I know what you mean about, "statistically I should be dead or dying by now."  I was scheduled to die in roughly June 2012.  I'm now six years past my projected life expectancy and I am still testing clean (just had my latest CT scan Wednesday & will get back results Tuesday---planning on more good results). 

You said that you aren't exited about doing treatments for the rest of your life or even another year.  I've been getting herceptin weekly since 2011.  The first six months was alongside folfox and the last six years has been just by itself.  Currently, the plan is to continue on with it indefinitely.  Going for weekly treatment for years and years is its own special sort of draining.  Because I'm still receiving treatment, I also have monthly oncologist appointments, monthly bloodwork and regular echocardiograms.  It is definitely taxing, especially since I could stop at any time and just say, "I've had a complete response, I don't need to keep doing all this crap."  However, I keep going because I was supposed to die in 2012, but something worked exremely well for me.  We think it is the herceptin, so we continue on with it.  Last thing I want to do is walk away and find out that the herceptin was the only thing holding off another recurrence.  Given that you know full well that you should be dead or dying by now, continuing on with treatment is a small price to pay.  It sucks (believe me, I know), but the alternative sucks a lot worse.

May you have many more years of great news,

Ed

paul61's picture
paul61
Posts: 1349
Joined: Apr 2010

I am so glad to read that all of your tests are headed in a positive direction. I know it has been a difficult journey, and I am sure there were times when you wondered if it was all really worth it or not. I have to say if I were in your position, and making the progress you are in the trial program, it would be a difficult decision to go back to traditional chemotherapy and radiation. As an eight year survivor, I do believe in miracles. We see them every day if we just look around with the right perspective. It appears you still have more work to do here on earth. May there be many more good test results.

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
Eight Year Survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

 

1979bmg
Posts: 31
Joined: Sep 2017

Paul61, are you still doing any sort of treatment?

paul61's picture
paul61
Posts: 1349
Joined: Apr 2010

1979bmg,

After year seven I am no longer in contact with my oncologist. I just have an annual endoscopy with biopsies at the anastamosis and the standard blood work you would receive with a typical annual physical.

Paul

 

1979bmg
Posts: 31
Joined: Sep 2017

What brought on the decision to stop treatment? Did you do the esophagectomy surgery?

paul61's picture
paul61
Posts: 1349
Joined: Apr 2010

I had an esophagectomy in 2009. Unfortunately my surgical pathology indicated that I had active cancer in a lymph node so I had five months of chemotherapy after surgery. Since then I have had clean scans and endoscopies. One day at a time :)

Paul

1979bmg
Posts: 31
Joined: Sep 2017

The chemo-radiation at this point would only be considered if the current treatment starts to fail. But for now the current treatment continues to work amazingly well.

I guess I am not too excited about the prospect of doing this for the rest of my life or even another year...especially if I do end up with a complete response. I guess I should be thankful that I have responded this well so far.

1979bmg
Posts: 31
Joined: Sep 2017

...who is unable to have surgery as a stage 4, and has survived long-term? As in more than 5 or 7 years? I know the long term survival rate is terrible generally speaking, I am just wondering...Lots to thnk about.

paul61's picture
paul61
Posts: 1349
Joined: Apr 2010

The longest-term stage 4 survivor, without surgery, I am aware of is Jane Pickett. I believe Jane is now over 20 years as a survivor. Of course, that is very unusual; but it proves it is possible. Jane was diagnosed with EC at a young age. If you go to the esophageal cancer section of the “Smart Patients” web site you will find several long term stage 4 survivors that post there regularly. https://www.smartpatients.com/communities

 Paul

1979bmg
Posts: 31
Joined: Sep 2017

Paul61, I did finally post in the Esophageal Cancer community on the link you listed. There a a few stage 4 short and long term survivors that have already replied. Thank you so much for posting the link. 

My username is "nolymphnodes". They don't allow numbers with usernames, and it was the most brilliant thing I could cone up with quickly on my phone.

 

I think you have to create a username and join a community to read the messages on that webpage.

WillBBlessed's picture
WillBBlessed
Posts: 2
Joined: Apr 2018

Hi 1979bmg,

I'm also 38 yrs old and was diagnosed with Stage 4 EC back in Sept 2017. The news came as a shock at the time but now that I think about the possible causes (acid reflux) I can see how it's possible. At the time I was diagnosed, it was also found in the liver. In Sept 17 I started on the Oxilaplatin, 5FU & HER2 regimen but during my 3rd treatment I had an anaphylactic reaction so we had to stop. While the doctor figured out which chemo combo would be suggested I had an upper endoscopy & scans done. The endoscopy showed that the tumor in my esophagus (actually in the GI junction) disappeared but the scans showed the liver had no response. Prior to these news the doctors didn't even want to operate on my liver. Getting those results in Nov opened up the door for liver resection, which was done on Dec 13 (my birthday!). After recovering from surgery the doctors had already figured out they wanted to do Cisplatin, 5FU + HER2, so we started and the side effects of Cisplat vs Oxilaplatin were twice as bad (especially with fatigue & nausea). I went through 4 rounds of that regimen and had new scans + upper endoscopy done 1.5 weeks ago. The results weren't what we were expecting. The GI doc found that the tumor in the esophagus was back and is now bigger than it was when I was diagnosed, which means the new chemo treatments weren't very effective. The good news is that it has yet to spread. The oncologist is now recommending radiation + oral 5FU for 5 weeks - I have appointment with radiologist this week. The goal is to reduce the size of the tumor and talk about surgery (removal of part of esophagus + part, if not all, of the stomach). The doctor also said that a lot of patients go into remission from radiation. Before I start radiation treatment, my wife and I are planning to visit MD Anderson in Houston, TX next week. I want them to review my case and make sure they are in agreemtn with how we're moving fwd. 

The journey has been one heck of a ride. I'm blessed to have a very supportive family. My wife is a cancer survivor and continues to be "clean" (her last chemo treatment was in Nov 2016). She has been such a rock and having gone through it herself (AND being a nurse), she knows how I feel. 

I'm also a believer and have leaned on my faith a lot but my struggle continues to be a mental one. Knowing that I have EC is always on my mind and it is so hard to shake it off. The depression is brutal and its starting to impact my home/work life a little (I have two daughters and I'm able to hide it pretty well from them). You seem to have such a positive attitude and I admire you for that but, how do you do it? I know that in the end I am going to be okay because I have that promise from God, but still I have these mental struggles.

Thanks,
Will

 

1979bmg
Posts: 31
Joined: Sep 2017

How do I do it?

Well, sometimes I am not the best at it myself. (Keeping a positive attitude that is). I guess 90% percent of my strength (mentally and physically) comes from my faith and trust in God, if my earthly journey is cut short, my future is still set up in the afterlife. I don't think this is ever easy for anyone, I have my bad days where I am depressed and disheartened that there will probably never be a definite cure in my lifetime even if I am a long term survivor. We all have our own cross to bear in a different way.

 

I don't have kids, just a fiance that stood by me through the worst of it, even when I get depressed and despondent and feel like giving up on myself. I can't imagine what you are going through looking into the eyes of your wife and children. I wouldn't wish that on anyone. I am sorry that your treatments are going so rough. I have been very fortunate so far in that regard.

 I also have a small spot on my liver, they keep calling it a " tiny indeterminate lesion" and can't indentify what it really is. They thought it was possibly cancer at first, but keep claiming it is too small to biopsy. It remains completely unchanged since August, it is possibly a benign cyst. My kidneys and liver are both functioning normal for the time being. 

I guess one thing I can say is the cancer has brought me closer to God and forced me to reexamine my whole life.

 

I will tell you this, prior to my cancer diagnosis, I lived a very meaningless life. I wasn't really a terrible person, but my whole existence and drive for life was self centered and very carnal. I let a few bad experiences in my past cause me to be jaded and negative, and was basically I walking dead man long before the cancer diagnosis. The cancer diagnosis forced me to acknowledge what is truly important in life. 

 

Even when I was first diagnosed, I didn't really feel like I was ready to die or that I was going to die soon. I was somewhat of an anomaly, although I was stage 4 I didn't really feel that terribly sick, and my blood work was completely normal, except for the the things that they really dig deep for like cancer antigens, which were off the charts in my case.

 

I guess what I am trying to get at is while you have time, make sure your life still makes a difference. How do you want your friends and family to remember you? Someone brought this up to be a few months ago,  I think it was deathorglory: although not everyone replies to these posts you can see that most of them end up with thousands of views eventually. Maybe you can give a ray of hope for someone who is struggling and ready to give up, by posting steps from your journey. I feel whether you are sick with cancer or not, you will get some inner peace by knowing your life has made a difference and helped someone else. This website and the people who post on it have helped me a lot, and I pray that I have the strength to stay positive if and when I have an office visit with some not so good results.

 Stay strong brother, and keep fighting.

 

 

 

WillBBlessed's picture
WillBBlessed
Posts: 2
Joined: Apr 2018

Thank you for sharing and the encouraging words. Like you, I didn't feel terribly bad when I got my diagnosis so it came like a total shock (like most ppl). I was actually feeling great that week prior b/c I had just completed a "Boot Camp" where I had lost 20 lbs and felt the best I had felt in years. Then the news came. I completely passed out at the Dr's office when I heard stage 4. I've had my ups and my downs but recently it seems like it's been mostly downs. Liuke you, I have become a lot more involved with my faith and I pray so much every day asking God for healing, peace and strength. I believe that God is willing and more than able to provide these things but He also needs to see effort and obidience from us, this is what I'm working on. I strongly feel that my purpose in life is to help others so if my journey can bring light and strength to someone else I'll be more than happy to share ... and I will by starting a new thread/post on here with my journey. 

Thank you again and you too stay strong, have faith and keep pushing forward!

P.S. What is having faith? It's believing before you can see the results. 

1979bmg
Posts: 31
Joined: Sep 2017

I have the results of my most recent scans back on the 12th, Both CT and PET continue to show a complete metabolic response, no new evidence of metastatic disease. The right upper paratrachael lymph node, the last known area of cancer and inflammation, shows a max SUV of 2.1 compared to above 3 in April. 

The short term plan is to continue the present treatment indefinitely, based on the fact that my body tolerates it reasonably well.

 

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Hello,

Step by step you just keep moving in the right direction.  I hope it keeps up for you.

Best Wishes,

Ed

1979bmg
Posts: 31
Joined: Sep 2017

The results of my CT and PET scan earlier this week show a possible recurrance at the site of the original tumor just above the GE junction.

 

The SUV on PET scans shows an increase up to 3.6, from 3.2 in June and 2.8 in April. It is also possible that this is inflammation or "physiologic activity", whatever that means.

 

CT didn't show anything other than slightly enlarged spleen, everything else looked fine. One odd thing was my urine specific gravity was a bit high...they told me liver and kidney function is fine as far as they can tell...

I did my test immediately after CT scan, maybe that contrast die can increase specific gravity?

 

On the plus side, some uptake that was there in the upper stomach (gastric fundus) has decreased to 4.3 from 5.0. The upper right paratrachael lymph node, the last known sight of severe cancer infection, looks to have completely resolved with stable central calcification.

 

I am a little miffed about them telling me a had a complete response, when it looks to me like that might not have been the case. The waiting game begins once again till late October/ early november unless things change.

 

It is a little disheartening to show nothing but progress and have a possible setback now, but I am still sitting way better now compared to a year ago.

 

 Plan for now is to continue with current treatment as long as I am able.

 

I am also trying to completely give up coffee and soda pop, no coffee since Wednesday morning, the only caffeine I have had was some Earl Grey tea yesterday...haven't had any bad withdrawal symptoms so far, and I actually seemed to sleep better the last few nights.

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Hello,

You've been moving forward with such good news for quite a while.  Now it looks like you're running into some bumps in the road.  Unfortunately, that's the way it works a lot of times.  Even the most positive success stories run into some difficulties.  Hopefully, it is just inflammation from an infection or something benign like that.  I just had a big scare myself where I had new, rapidly growing nodules show up in a lung.  They lit up on the PET/CT and I went to get them biopsied.  At the biopsy, they were no longer there and it was concluded that it was just freakish timing between a lung infection and my tests.  We were still scared to death and were thinking there was a good chance I'd be dead by Christmas.  Hopefully, your stuff turns out like mine did.  

I've had two "complete responses".  "Complete response" and "no evidence of disease" don't necessarily mean cured.  They mean that the doctors can't see any cancer.  There still might be some hiding somewhere.  My first complete response was my first time around when I was stage 3 and roughly your age.  I thought I was in the clear, but still had a recurrence a couple of years later.  The second time it had metastasized to a lung and I was stage 4.  My treatment was pretty rough, but I had another complete response.  That was 2011 and I'm still testing clean.  But I'm always wary/nervous about it coming back again.  I hope your story works out like mine.  

Why are you giving up coffee & soda?  Doctor's recommendation?  I'm sure it will help with sleep, but there's a LOT of people who can't even begin to function in the world without their coffee.  I hope it works however you're hoping it does.

Best Wishes,

Ed

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

Dear Fellow Stage IV Cancer friend,

Thanks for your update.  You’ve been on my prayer list for a long time now.  It’s comforting to know that many people that we’ve never met pray for us to have “peace of mind” as we battle our cancers.  The number that you, Ed and I, as well as many others, are concerned with is a big IV !  So for us, although “curative surgery” is not an option, we seek to have the longest period of time of progression free survival (PFS) before something else “pops up” to rob us of our peace of mind.  Mind you I am 40 years your senior at age 79, but our concerns are the same relative to Stage IV cancer. 

Primarily I answer this forum as the wife of William who is now in his 16th year of “remission” since his diagnosis of Adenocarcinoma at the Gastroesophageal junction, Stage III (T3N1M0).  However, I now write as a Stage IV survivor in my own right also as of November 2012.  For instance, I just went for a CT scan yesterday.  Next week I will know if the “sharp stinging sensation beneath my shoulder blades indicates further accumulation of cancerous fluid in the lining of my Lung, or if the cancer has penetrated the Lung itself.  You know our organs are certainly “knit closely together.”  Having now been through 4 different series of chemotherapy of Carboplatin/Paclitaxel (Taxol) as well as Cytoreductive surgery, and targeted radiation, my options are certainly diminishing.  Yet my desire is to concentrate on the quality of life I still enjoy. 

Survival with some quality of life, albeit somewhat diminished, is the name of the game, is it not?  Naturally we hope for the best quality of life along the way.  Sometimes it is possible to “feel a lot better” than the scan results indicate.  At other times we are surprised by what the scans show.  Sometimes the results are mixed.  There are both positive and negative results in the same report.  So what are we to do?  You are like me in that you are doing the best you can do considering the stage of your cancer. 

May I make a few “light-hearted comments?”

Your statement, “On the plus side, some uptake that was there in the upper stomach (gastric fundus) has decreased to 4.3 from 5.0. The upper right paratrachael lymph node, the last known sight of severe cancer infection, looks to have completely resolved with stable central calcification.” is good news.

I’m glad that you can see both the “good” and the “not-so-good” and still be upbeat and thankful that you’ve had made some progress along this “palliative pathway.”  And as for “the waiting game” till the next scans, I find it best not to try to think that far ahead.  No doubt, that is your battle as well.  This cancer does try to steal your peace of mind.  And without a positive outlook, even when we have faced the facts of our cancer, the ever-present temptation is to let the future prospects steal our joy in the moment. 

You sound like a positive person that is able to take the good with the bad.  And when you can do that, you can live in the moment and enjoy simple things in life that we have always enjoyed.  Sometimes I call myself, “Dr. Marshall” because I have a knack for telling others what to do, even when they haven’t asked.  And so, let me put on my “Dr. Marshall” hat for a moment, and comment on your last paragraph in which you say, “…am also trying to completely give up coffee and soda pop, no coffee since Wednesday morning…”

May I ask if your oncologist suggested that your quality of life would increase if you “gave up” the simple pleasure of smelling the aroma of coffee brewing, and then consuming a good tasting cup of that hot coffee?  That goes for foregoing the simple pleasure of an ever-refreshing taste of ice-cold soda pop too. 

Unless and until the caffeine gives me the urge to jump off the roof from “over stimulation”, I will NOT forfeit these simple things in life.  (Now if we were talking alcohol consumption that would be a different story!)  But as long as I still have the ability to "smell and taste”, I will forever enjoy an ice-cold soda pop.  The smell of coffee is great but I simply never cultivated a taste for coffee.  I’ve tried it, but I have to put so much sugar and milk in it, I’m thinking it’s more like “hot chocolate”.  And by the way, I like hot chocolate chocked full of miniature marshmallows.  Those are simple things in life that I will not “give up” until I find that chocolate, coffee and soda pop are the culprits that caused me to have Stage IV cancer.  My favorite soda is “Diet Coke” with caffeine. 

Incidentally, I stopped worrying about being “fat” and counted my last calorie the day I was diagnosed with Peritoneal Carcinomatosis and 3 weeks later after a SECOND opinion, Ovarian Cancer, Stage IV.  The “fat-worry factor” plummeted quickly and was replaced by something far more serious like coping with Stage IV cancer! And all that fretting that we women do about gaining too much weight fell by the wayside.  Inadvertently and unintentionally, I've dropped 30# since my diagnosis back in 2012, but it's nice not to look in the mirror and say, "Uugghh I need to lose weight."  Instead I look in the mirror, and even with no hair, I'm satisfied with the way I look because I'm still here and am still enjoying the simple things in life.  

And so since, I don’t charge anything for my advice, you don’t have to take it, but I say, “Find a peaceful spot, perhaps in your own backyard, listen to the birds serenade you with song, meditate on the things you still have like a “good mind” and faithful friends while you enjoy a good cup of “Joe” or sip on an ice-cold soda pop.  Just this very morning, I watched a hummingbird fly from flower to flower, as well as sip some sweet water from my hummingbird feeder.  That was a simple pleasure.  And speaking of birds, if God sees every sparrow that falls, and I believe that He does, He surely cares even more for us.  Yes, “living one day at a time is easier said than done when we wake up each morning with cancer and go to bed with cancer.  But my calendar says this is August 12th and I know not what September will bring, or even later on today, for that matter.  So soak in every enjoyable moment you can.  Try not to let November worries jump in ahead of August and September of 2018. 

Do something good for someone else, and don’t forget to treat yourself by doing things that you enjoy like “simply” consuming coffee and soda pop!  I’ve already had one Coke this morning.  Kiss

God bless you my friend.

Love Loretta

1979bmg
Posts: 31
Joined: Sep 2017

With me, it is just the fact that I can't stop with just one cup...I will usually drink the whole pot that I make through the course of the day, and it will leave my stomach with this dull burning feeling for hours and hours if I have much more than a cup.

 

I have found I don't really have any of the withdrawal symptoms...even after a week of quitting... other than being a little more sluggish and tired...especially during exercise.

 

I will probably have an occasional cup or soda pop, but I do not want to be the 8, 9, 10+ cup per day person that I was when all of this started.

 

Soda pop...well, I am one of the few cancer patients that can't seem to lose weight. I am hoping it isn't a thyroid issue, because I am actually trying. I don't really enjoy soda pop or anything overly sugary like I did when I was younger, plus between soda pop, GERD, coffee and chemotherapy it has all wreaked havoc on my teeth the past 5 years. Up until 2014 I never had any dental work done, now it seems like it is constant.

1979bmg
Posts: 31
Joined: Sep 2017

Well...this outage and all those posts being erased sure sucks.

 

My November scans showed the PET SUV uptake decreased at the GE junction to 3.1, meaning it likely was inflammation...no other evidence of metastatic disease.

 

January scans show no suspicious esophageal uptake, and mild diffused increased PET SUV uptake in the stomach which is likely inflammation.

 

A few deep lung nodules that were suspicious at initial diagnosis are unchanged since then, and and mildly enlarged spleen continues, 13.4 cm which isnt that bad.

 

Everything else is "stable...negative...unremarkable...no new evidence of metastatic disease."

gshaffer01
Posts: 2
Joined: May 2019

My boyfriend is 40 years old and was just diagnosed. I am hoping because he is fit and strong he can fight this. This is absolutely a terrible thing to have. I hope that you have more good news, your stories are giving me hope in a time that I desperately need it. 

1979bmg
Posts: 31
Joined: Sep 2017

All scans for the last 6 months still show no "measurable" evidence of metastatic disease.

Fatigue has slowly become worse overall since January 2019 and especially since August 2018.

 

Overall, I have been EXTREMELY fortunate with having minimal side effects and virtually no complications. No surgery, no dilations, no strictures, no effusions, no ascites.  

 

The last few treatments of Oxaliplatin gave me high fevers and sent my platelets and White cell counts into the sewer, but not to the point that I needed Nulasta or any blood transfusion. This was Jnauary/February 2018, and this is really the worst that has happened so far.

 

Mildly enlarged spleeen since August 2018  and a few lung nodules that haven't changed since diagnosis are the only real things that show up abnormal on any scans.

 

The right paratracheal node in the neck , which was golf ball sized with a cancerous mass at diagnosis (34mm x 23 mm) 23 months ago, now measures between 5mm and 7mm and has remained stable since October 2018, with stable mild soft tissue thickening.

 

As of July 16th, I have eliminated the 5fu chemotherapy from treatment regimen and now continue with Immunotherapy alone.

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Hello,

Congratulations on even more good news.  Stage IV survivors aren't particularly common, but they exist.  It's awesome that you continue to share your story of success to help folks who are finding themselves in a similar situation.  A ray of hope can go a long way when they are blindsided with a diagnosis that they really don't understand and are fearful of.  I hope everything continues to go well for you on your journey, but as you know, there are the occasional bumpy stretches.  You've weathered them, though.  So congratulations and continued good health to you.

Best Wishes,

Ed

bluetick
Posts: 2
Joined: Dec 2017

can be whipped!!

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Hello bluetick,

I'm glad that you have had a good response to your treatment, but you are a dangerous thing to other EC patients.  You are recommending not doing prescribed chemo.  You are advocating for not doing recommended surgery.  I'm seriously glad that it seems to have temporarily worked out for you, but you are the very definition of an anecdotal case.  The science & real statistics advocate for doing everything the exact opposite of the way you are recommending.  Please do not try to do active damage to others who are finding themselves suffering from EC.  You may well think you are helping, but you are a menace to people who are looking for how to deal with EC.

midlandgigi
Posts: 9
Joined: Aug 2018

I personally know someone who had the attitude of Bluetick and he lived only a few months.  Every patient is different and each body reacts differently to the disease and to treatment.  As a Stage 4 survivor, I feel strongly that it would be foolish of me to ignore Oncologists/Surgeons who have dealt with this disease for many years.   I have been through some extreme treatments with extreme side effects but for now I am free of active cancer.    I am blessed to have Faith that keeps me fighting, Drs. who are skilled and compassionte and family and friends who  support me in every way.  

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