44 and Undergoing EC Treatment

dlunderwuncg

I was diagnosed with adenocarcinoma of the lower esophagus approximately 9 months ago. As I have progressed in treatment, I now know that I was at stage 4. My treatment plan began with about 3 weeks of radiation on my back where tumors were pushing against my spine and in my arm but not directly on my esophagus. Following radiation I have now been on chemo every 2 weeks for the last eight months. I lost about 50 lbs and felt like I was close to death but after the first couple of chemo treatments and introduction of immunotherapy (opdivo) I have regained a lot of the lost weight and at face value I appear to be improving.

My latest scans show that the largest tumors in my back and pelvis are shrinking albeit much less than with earlier scans. My oncologist called the scans good but little detail beyond that. Small lung nodules were seen in the latest scan but doctor said just to continue to monitor given the rest of my body was stable.

A friend of mine found this site for me and after reading through others stories, it appears most others have had surgery and those that have gone through chemo, it has been much less than the eight months I am at with no indication that this will change.

I am grateful of the gains I have made but I do struggle with not knowing truly what lies ahead. In the first couple of months I truly thought I wouldn’t wake when I would go to sleep I felt so bad. I am learning to live with my chemo regimen, making necessary adjustments with personal affairs while working mostly full time. I struggle with my emotions despite my strong faith mostly feeling that I am too young to be dealing with this, worry about my wife and boys while having no indication of milestones I am looking to achieve. My quality of life is suffering due to my back pain which hopefully can be addressed by recent recommendation of a nerve and spine specialist of minimally invasive procedures.

I suppose it feels better just to vent my worries with those that are going through this terrible disease. I am fortunate that I have had only minimum complications with swallowing after reading others struggles. My scan only lists mild distal esophageal thickening as the source of the cancer.

I would appreciate any insights from those that are going through this after reading my story. I am genuinely relieved that this was sent to me as a resource and to know that others have been strong in battling this.

Deathorglory

Hello,

I can feel somewhat of what you're dealing with. I started out with stage III EC in 2008. I had a stage IV recurrence in a lung in 2011. I've gotten chemo (herceptin) weekly since 2011. Herceptin is super mild, though so side effects aren't a concern. I had another recurrence three years ago that was also stage IV in a lung. The 2nd and 3rd times were "terminal". I was given 7-8 months in 2011 and they wouldn't even talk prognosis the last time.

You're doing real chemo and the side effects of that can be pretty bad. I've done real chemo three times and had varying degrees of side effects. The first time I did chemo, the side effects were pretty easy to manage. The time I was on Folfox, it nearly killed me. I've also only done real chemo in 6 month increments, not like you. All I can really offer as advice is to focus on the positive things you have going on right now. Your scans show improvement. You're still able to work. You have a family to help you.

I wish you the best as you continue your fight,

Ed

dlunderwuncg

Thanks for the response Ed. Amazing to hear how you have continued your fight after this many years, definitely encouraging. I suppose the treatment is for each individual given you have been doing chemo weekly for this long and full chemo has been for shorter durations. I guess it is in my nature to have some milestone to struve for and this disease isn’t cooperating.

I try to remain positive but the reality at times of what I am going through overcomes me. I won’t give up fighting as I know that is what my family needs from me and hopeful I still have some good years left ahead. If we all bought into the statistics that are readily available it would be so easy to just give in. Have you had any surgeries and does the term mild distal esophageal thickening reflect your diagnosis also?

• David

Deathorglory

Hey David,

Yeah, paying attention to the statistics isn't a promising way to go. I've had two cancer surgeries. The 1st was in 2008, an esophajectomy where most of the esophagus was removed. Then they used my stomach to craft a new esophagus. I asked, "Then what are you going to do to make me a new stomach?" He said, "we're not going to do that." So that sucked. The second recurrence, three years ago, was treated with just surgery, no chemo or radiation. They removed half a lung b/c that was where it had spread to. That also sucked.

Mild distal esophageal thickening is something I'm unfamiliar with. I was relatively young my first time around, too. I was 40 the 1st time and 44 the second time. I know it sucks to be dealing with this at a young age, but I promise you that being young and strong is the best way to fight this fight. And believe me, I know how difficult it is to stay positive. When I was getting Folfox for the 1st case of terminal cancer, I remember crawling to the bathroom on my hands and knees just hoping to make it on time (I made it almost every time). I remember my family not letting me stand up on my own b/c I was liable to just fall down/collapse at any point. But if you don't focus on the positives, it's just way too easy to get lost in all of the negatives. You have to stay strong for your family.

Best Wishes,

Ed

dlunderwuncg

You’ve overcome a lot. Thanks for the encouragement as I could definitely use it. How are you feeling currently ? Is life just a new normal now living with cancer ?

Deathorglory

Yeah, I just have a routine for everything that I have to do. As far as how I feel, nothing is perfect, but it's all stable and manageable. Physically, I'm not able to do everything I'd like, but we've figured out workarounds.

dlunderwuncg

Went back and read all of my doctors notes since I was diagnosed. Apparently I am on Folfox with opdivo immunotherapy and have been for about 8 months now. I am now getting to the point of worry with the neuropathy and will likely ask the dr to stop my Oxaliplatin. Also I see that the doctors thinks that I have had radiation in my esophagus, which I haven’t, instead only in the tumors in my back and arm.