Looking for others' experiences with Esophageal Cancer treatments

Lori
I had radiation and chemo treatment for esophageal cancer tumor. After 28 days for chemo and radiation the tumor was gone and CT scans have remained clear of esophageal cansor and no remaining lymph node activity.
However the CT scans have shown that there is a growing mass on left kidney so I am having biopsy on 8/14.

Why no surgery once they had this sumbitch on the run? Were you stage 2 or 3? Did your oncologist or tumor board not suggest the esophagectomy? Curious.

Lori
The doc said surgery was possible, but she recommended not doing surgery based on age 78 and overall health. As it turned out the radiation and chemo worked well. The tumor shrunk 40% after first 3 treatments. The surgery to remove section of your esophagus is major surgery. I'm curious if your doc explained difference between surgery and radiation/chemo treatment and health factors?

Lori

I am a 4 yr+ stage 4 ESCC survivor. Everyone's course of disease is different. In my case, I underwent successive rounds of focused high intensity radio therapy followed by an initial 6 rounds of FOLFOX. I had a good initial clinical response with near total ablation of my esophageal lesions and medialstinal nodes. Due to my age and existing comorbidities, I was told by the onco-thoracic surgeons I that I was not acceptable candidate for surgery and that I should resume chemotherapy when my diseased progessed.

And so I did. After 5 rounds, PET and CT-MIPs scans reveal progesion of my disease with mets to both kidneys, my left shoulder blade, and left humerous. I resumed FOLFOX therapy with the addition of Keytruda. Unfortunately, after three doses of Keytruda, it triggered an adverse reaction by reactivating my pre-existing MS. This led to an immediate discontiuation of therapy and a two month stay in the hospital and a rehabilitation facility. Fortunately, my scans before discharge demonstrated that I had a very good clinical response with greater than 80% shrinkage of the existing lesions.

After being discharged to palliative home care, I was advised to take a break from chemotherapy to allow me to recover from my debilitated state. During my stays in the hospital and rehab, I had developed severe radiotherapy induced esophageal strictures and was rendered unable to ingest solid foods. Despite having a G-tube placed, I lost considerable body weight and muscle. After a 3 month hiatus, I resumed chemo using a reduced intensity regimen of folinic acid and 5 FU. Repeat scans after 5 rounds showed modest progression of my disease so I resumed full intensity chemo with FOLFOX. After 5 rounds of FOLFOX, I was switched to FOLFIRI as the oxyplatin exacerbated my pre-existing MS related neuoropathy and my mobility.

My last last 3 CT-MIPs scan showed a complete clinical response with resolution of all renal and bone mets as well as all mediastinal and retro-peritoneal and abdominal nodes. As I am tolerating my current FOLFIRI regimen, our plan is to continue this therapy indefinitely. I still have my G-tube in place but have recently undergone a series of pneumatic dilations by my onco-thoracic surgeon whowas able to dilate my lower esophageal opening to approximately 18 mm. The results of the dilations, while transient, are nothing short of remarkable. I had endured over two years of being totally non-po during which, I was unable to swallow my own oral and nasal secretions. Now I am able to consume softer foods i wish as well as certain sea foods and ground meats dishes with little issues provided I eat smaller portions, take small bites, chew them well, and chase each bite with small sips of liquids to help with dilution and lubrication and prevent the occurrence impactions. When impactions occasionally occur, usually with breads or crackers,/ I find that the carbonic acid content obtained by consumption of a few ounces of Coke or another carbonated cola will help emulsify the impacted food bolus after 10 -30 minute and clear the obstruction. If not cleared within 12 hrs a trip to the ER may be required.

Thus, if surgery is not a viable option perhaps a G-tube are esophageal dilation are. I would encourage you to discuss these options with your care team. In the mean time, it's critical that you maintain a positive mental attitude and become a fierce advocate for access to the best available therapeutic avaialable therapies for your disease.

I wish you well in your journey with our fellow traveller.

Love your story... although I suppose both you and I would prefer not to have EC whatsoever. At stage 3, I was able to make it to surgery at age 61, since I had no other serious comorbidities. But your great responses to your treatments put you where you are... hanging tough, still alive, and hopefully with some good QoLife.

But let me get something straight... when you talk of the Coca-Cola use... that is to clear an obstruction in your actual esophagus? Over a 30 minute period for example? So this is not a G or J tube clog you're talking about? Holy cow, that must be some major unpleasant experience!! I used Coke once to unclog my J tube.

Because I've been there myself... but not to the extent you have. As my first line treatments were starting, I too could not swallow even a tiny sip of water, was 100% relying on my J tube to live. But this was only for 2 to 3 weeks as my CROSS protocol treatments opened up my throat enough to allow me to resume eating and drinking some. But yeah... some nasty miserable times back over 3 years ago. I sure feel for ya! I'm now just past 3 years post-op... so hanging in there.

Keep it up! The EC journeys can sure suck a tad! The post-op part of the journey is a tad nasty as well... but doable. Just very sloooow.

Be well.

Gary

Hi Don , I spoke to you a while back about my dad because he had a esophageal cancer. Sadly, my dad passed away on July 24. He had stage four and it went into his bones spine lymph, Noyd’s and pelvis. I wish I could’ve helped him but he bled internally and because of those stents it migrated three different times with three different stents down to his stomach so if anybody thinks about getting a stent, I wouldn’t suggest it

Condolences on the passing of your father

Gary

To say that my disease has been challenging is a profound understatement. Thus far, when I've experienced food bolus induced impactions and obstruction of my esophagus, I've been able to successfully resove them with the use of cola. Again, these are small bolus impactions. The length of time it may take to soften and resolve varies dependent upon the size and composition of the impacted bolus. The larger the bolus of food ingested will produce more problematic impactions that may not respond to the cola treatment. However, if one takes smal bites of well diced foods, chews them thoroughly and takes a sip of liquid and swallows, assuming they have a dilation of at least 10 mm, the food bolus should pass freely. If you feel that it's stuck, stop eating and drink a bit of liquid and wait to see if it passses. You may the resume eating. People should avoid most breads, crackers, bisquits and lage pieces of meat. Soft foods like pasta, eggs or some breakfast cereals with milk are great starters. You can work your way up the menu fom there.
At times when become impacted with a food bolus I've generally gotten relief within 10 minutes. The longest it's taken is about 60 minutes. I attribute that to a foolish attempt to enjoy a bit of grilled pork tenderloin.

My G-tube is used both for feedings and drugs/supplement administration. I've posted on tips for dealing with problematic G-tube clogs. Essentially, the first approach is to infuse a bit of warm or room temp water or saline with a cath tip syringe and do a gentle push-pull agitation. This generally will work on med/supplement clogs if there aren't a lot of excipients or binders in the slurry that was infused. If the clog is not cleared with this approach, remove the fluid above the clog and infuse the cola. At times it may help to gently roll, compress and milk the tube over the site of the obstruction to enhance its dissolution. If that doesn't work, then you try a variety of flexible probes/snakes to physically dislodge the clog. Patience is required as this can be a tedious and at times lengthy process.

If you haven't been able to clear the blockage either in your esophagus or G- tube in >2-3 hrs, I would suggest that you go to an ER for further evaluation and assistance. The tube may need to be replaced and the impactions may need to be cleared via endoscopic procedures.

Dave

To you folks coping with EC and the great volunteers, I want to express my appeciation to all who post their experiences and wishes for a return to good health. I cared for my 86 year old wife for the year following her diagnosis before she passed. 12 weeks of chemo and radiation, shrank the tumor, but the cancer spread to the liver, kidneys, and lungs.
While it wasn't Mayo Clinc, the Comprehensive Cancer Center here in Vegas worked valiantly to save her. Healthy all her life, she had no indication until she was unable to swallow. I tell all who will listen to get regular checkups, especially if you're using acid reflux medicine.

Hey zzoner. Just thinking about you and hoping you continue to improve each day. Any idea how long they want you in hospital? Everyone is different, of course, but I was in for two full weeks. Hang in there and when you are up to it let me know how you are doing.