1. < Esophageal Cancer

Squamous cell EC recurrence: Got questions about chemoradiation

Posted by Lynn @cometsmom, Apr 15 4:46pm

Hello, this is my first real post here, although I did reply to someone else's and related parts of our story. I'll try to give you the cliff notes here in case you already read it. My 61 year old husband was dx initially in 2018 with stage 4 EC. Not a surgical candidate. He did 2.5 years of chemo and has been in remission since mid-2020. Fast forward to last month, he was found to have a recurrence on routine surveillance endoscopy. He's had all the tests, etc and today we found out that the cytology from the peritoneal washings they did are negative for malignant cells! This is being staged as 3. Radiation will be able to be given this go-round (didn't have it the first time). The simulation is tomorrow morning. First chemo will be 4/30. We are ready to go.

I'm scared all over again now that we're about to start. The chemo is going to be aggressive again, but after all he went through last time it was worth it. 4 years of remission! They gave him a prognosis of months to a year when he was initially dx. He blew that out of the water. I believe he will do it again.

It's important for me to share good news for a change over this past month. Thanks so much and prayers for healing ❤️

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

Lynn | @cometsmom | Apr 20 8:02am
In reply to @mrgvw "So... this recurrence was seen in his stomaphagus... in a portion of the original esophagus still..." + (show)
@mrgvw

So... this recurrence was seen in his stomaphagus... in a portion of the original esophagus still in use... above the anastomosis? Nothing seen in lymph nodes or organs? What type radiation will be used?

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He wasn't a candidate for surgery or radiation. This recurrence is in the distal esophagus at 36 cm. The latest CT, PET and laparoscopy didn't show any spread to lymph nodes or distant organs this time so the plan will include radiation with the chemo. I know it's external beam radiation but I don't know anything more about it. It's not proton though.

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2 replies
mrgvw | @mrgvw | Apr 20 8:44am
In reply to @cometsmom "He wasn't a candidate for surgery or radiation. This recurrence is in the distal esophagus at..." + (show)
@cometsmom

He wasn't a candidate for surgery or radiation. This recurrence is in the distal esophagus at 36 cm. The latest CT, PET and laparoscopy didn't show any spread to lymph nodes or distant organs this time so the plan will include radiation with the chemo. I know it's external beam radiation but I don't know anything more about it. It's not proton though.

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Interesting. Since recurrence is confined to esophagus... and no outside spread seen, I'm curious, if after these treatments, the tumor board recommends surgery.

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1 reply
Lynn | @cometsmom | Apr 20 10:02am
In reply to @mrgvw "Interesting. Since recurrence is confined to esophagus... and no outside spread seen, I'm curious, if after..." + (show)
@mrgvw

Interesting. Since recurrence is confined to esophagus... and no outside spread seen, I'm curious, if after these treatments, the tumor board recommends surgery.

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The thoracic surgeon we met with at the time of his initial diagnosis said he would be a poor surgical candidate because of his existing heart disease (heart attack at age 48, cardiomyopathy with a decreased ejection fraction, etc). After it was determined to be stage 4, surgery was no longer an option at that time. I don't know if now would be any different due to the cardiac concerns. His oncologist hasn't brought up surgery this time

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chip30 | @chip30 | Apr 21 10:09am
In reply to @cometsmom "He wasn't a candidate for surgery or radiation. This recurrence is in the distal esophagus at..." + (show)
@cometsmom

He wasn't a candidate for surgery or radiation. This recurrence is in the distal esophagus at 36 cm. The latest CT, PET and laparoscopy didn't show any spread to lymph nodes or distant organs this time so the plan will include radiation with the chemo. I know it's external beam radiation but I don't know anything more about it. It's not proton though.

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Are you anywhere near a proton therapy facility? The reason I ask is because I was lucky enough to be just a few miles from one in Knoxville, Tn. It was a wonderful treatment center with "wonderful" people. After doing MUCH research on my own(and not having been told about
this facility by the place that wanted to do PHOTON radiation) I found out that proton hits
the area of the tumor, does its job and stops there! From everything I learned and found out the other causes worse side effects and then exits the body which "could cause" damage to other healthy organs. If you have the option of proton treatment you should certainly look into it.
I wish you and your husband the very best and hope whatever treatment he has eradicates this "god awful" disease. Will keep you in my thoughts and prayers.

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2 replies
Lynn | @cometsmom | Apr 21 3:39pm
In reply to @chip30 "Are you anywhere near a proton therapy facility? The reason I ask is because I was..." + (show)
@chip30

Are you anywhere near a proton therapy facility? The reason I ask is because I was lucky enough to be just a few miles from one in Knoxville, Tn. It was a wonderful treatment center with "wonderful" people. After doing MUCH research on my own(and not having been told about
this facility by the place that wanted to do PHOTON radiation) I found out that proton hits
the area of the tumor, does its job and stops there! From everything I learned and found out the other causes worse side effects and then exits the body which "could cause" damage to other healthy organs. If you have the option of proton treatment you should certainly look into it.
I wish you and your husband the very best and hope whatever treatment he has eradicates this "god awful" disease. Will keep you in my thoughts and prayers.

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Thank you for the info. I looked into it and the closest facility is Mass General in Boston, only 1-1/2 hours from us. The downside is, I don't have enough PTO to cover the time away. I work for our local hospital and carry the health insurance. Even though I could use FMLA for the time off, once my PTO runs out, I wouldn't be getting a paycheck...ughhh tough pill to swallow. My employer would continue the health insurance even though I'd not be getting paid, but I would have to reimburse them upon my return.

Thanks for your reply. Prayers and best wishes to you for good health!

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Lynn | @cometsmom | Apr 21 3:51pm
In reply to @chip30 "Are you anywhere near a proton therapy facility? The reason I ask is because I was..." + (show)
@chip30

Are you anywhere near a proton therapy facility? The reason I ask is because I was lucky enough to be just a few miles from one in Knoxville, Tn. It was a wonderful treatment center with "wonderful" people. After doing MUCH research on my own(and not having been told about
this facility by the place that wanted to do PHOTON radiation) I found out that proton hits
the area of the tumor, does its job and stops there! From everything I learned and found out the other causes worse side effects and then exits the body which "could cause" damage to other healthy organs. If you have the option of proton treatment you should certainly look into it.
I wish you and your husband the very best and hope whatever treatment he has eradicates this "god awful" disease. Will keep you in my thoughts and prayers.

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Thanks for your message. Another gentleman also suggested proton therapy and I did look into it. The closest is at Mass General in Boston which is only 1-1/2 hours away, but while I'd get FMLA , I won't have enough PTO to cover the time away from work. I could take it unpaid, but then no money comes in...health insurance would be continued of course, but I believe I would have to reimburse my employer for my portion. Add in all the other expenses of being away for almost six weeks, it's just not doable. We are going to put our faith in the hands of our doctor and hope for the best!

I appreciate the thoughts and prayers. I hope you are doing well!

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Lynn | @cometsmom | Apr 26 11:32am
In reply to @cometsmom "My husband will be starting radiation therapy (28 days) along with cisplatin and 5-FU chemo on..." + (show)
@cometsmom

My husband will be starting radiation therapy (28 days) along with cisplatin and 5-FU chemo on 4/29. This is due to a recurrence of EC (stage 4 at initial diagnosis in 2018) after 4 years of remission. He did not have radiation the first time, but the doctors think this is the best chance we have for the cancer to go back into remission at this point, so we have agreed to proceed. This will be his fourth different chemo combination and we were told there are only so many available to try. Immunotherapy may be an option as well.Radiation is a mystery to me at this point. I feel like we have a good idea of what to expect with the chemo side effects, but adding in the radiation this time is such a concern to me, even though I agree it's probably for the best. He has had a heart attack in the past and has severe heart muscle damage and coronary artery disease. The tumor is in the distal esophagus, near the heart. I worry about further damage or other cardiac complications.What were the side effects you experienced? When did they begin in your treatment? Any suggestions? He had, among other problems, terrible mouth and throat sores the first time with just the chemo. I wonder if this will be a more difficult regimen for him to tolerate...are the side effects heightened by doing both chemo and radiation therapy together? Has anyone had heart complications during or following treatment?I've been reading everything I can find, talking to our providers, etc but I think hearing about real life experiences would help me to prepare for the start of his treatment.Thanks for sharing any words of wisdom.

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Happy Friday to everyone. My husband's treatment plan has been finalized for his recurrent ESCC. He's going to have radiation Monday through Friday and chemo once a week for six weeks with immunotherapy possibly afterwards. The combo is carboplatin and taxol. When he was initially dx in 2018 he had 2.5 years of chemo including having to wear the pump for 2 days (a different combination). No pump this time!

I'm worried about the radiation (he didn't have it the first time), and also have no clue about the immunotherapy. I'm hoping he'll be able to tolerate this better than the first go round where he had 3 changes to the regimen. He's in great spirits, six weeks is so much better because there's a light at the end of the tunnel!

Has anyone been on this regimen? How did you do?

Hope you are all doing well. Prayers for everyone Thanks for being here.
Lynn

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3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 26 2:08pm
In reply to @cometsmom "Happy Friday to everyone. My husband's treatment plan has been finalized for his recurrent ESCC. He's..." + (show)
@cometsmom

Happy Friday to everyone. My husband's treatment plan has been finalized for his recurrent ESCC. He's going to have radiation Monday through Friday and chemo once a week for six weeks with immunotherapy possibly afterwards. The combo is carboplatin and taxol. When he was initially dx in 2018 he had 2.5 years of chemo including having to wear the pump for 2 days (a different combination). No pump this time!

I'm worried about the radiation (he didn't have it the first time), and also have no clue about the immunotherapy. I'm hoping he'll be able to tolerate this better than the first go round where he had 3 changes to the regimen. He's in great spirits, six weeks is so much better because there's a light at the end of the tunnel!

Has anyone been on this regimen? How did you do?

Hope you are all doing well. Prayers for everyone Thanks for being here.
Lynn

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Hi @cometsmom, Lynn. I noticed that you had a couple of discussions going outlining the treatment plan and finalizing of the plan. I merged the discussions together to stay connected with members like @dsh33782 @chip30 @mrgvw @dannymac23 who are following your journey.

I see you've got questions (and concerns) about chemoradiation (especially radiation) and immunotherapy. I'm tagging additional members to join this discussion like @grac3honolulu @zzonner @dorenemonchil @henrysilverio12 @bb17 @pat888 @sjw6358 @pj03, who have experience with chemoradiation or immunotherapy or both.

Lynn, when does he start with chemo and radiation?

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 26 2:10pm
In reply to @cometsmom "Happy Friday to everyone. My husband's treatment plan has been finalized for his recurrent ESCC. He's..." + (show)
@cometsmom

Happy Friday to everyone. My husband's treatment plan has been finalized for his recurrent ESCC. He's going to have radiation Monday through Friday and chemo once a week for six weeks with immunotherapy possibly afterwards. The combo is carboplatin and taxol. When he was initially dx in 2018 he had 2.5 years of chemo including having to wear the pump for 2 days (a different combination). No pump this time!

I'm worried about the radiation (he didn't have it the first time), and also have no clue about the immunotherapy. I'm hoping he'll be able to tolerate this better than the first go round where he had 3 changes to the regimen. He's in great spirits, six weeks is so much better because there's a light at the end of the tunnel!

Has anyone been on this regimen? How did you do?

Hope you are all doing well. Prayers for everyone Thanks for being here.
Lynn

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I also meant to offer the tips shared in these related discussions:
- Radiation, not a candidate for surgery: What to expect?
https://connect.mayoclinic.org/discussion/just-advised-that-my-79-year-old-dad-has-esophageal-cancer-a/

- My treatment journey with chemo and radiation
https://connect.mayoclinic.org/discussion/2nd-round-chemo-and-radiation/

- A turn for the better: feeling better after radiation and chemo
https://connect.mayoclinic.org/discussion/a-turn-for-the-better/

You can find others using the group's search function https://connect.mayoclinic.org/group/esophageal-cancer/?search=radiation#discussion-listview

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1 reply
henrysilverio12 | @henrysilverio12 | Apr 26 2:33pm

That is fantastic news. From stage 4 to stage 3 is amazing. At Mayo when they emphasized cure, not just treatment I did not believe them. But it was true. I just had a scope last week and all is still good 4 years later. My treatments and surgery happened in 2020. The steroid they put in the chemo affected me more than the chemo. It wound me up and I would walk for miles after each treatment. Waiting is the hardest part. Being proactive is mandatory as far as Im concerned. At least you are fighting back. We will pray for you and healing for your husband in MT.

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