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.

Mentor
Don Higgins, Volunteer Mentor | @dsh33782 | Apr 15 6:20pm

Lynn
Sorry to hear about the relapse, but glad your husband had 4 years in remission. When I could not swallow, they found large tumor in lower esophagus in 2022. I am 79 now and had 28 rounds of chemo and radiation which eliminated the the tumor, and the scans came back clear with lymph nodes back to normal. I have since had kidney surgery to remove small tumor and also thyroid surgery to remove right side tumor. But now my scans are clear and I'm feeling good. I hope your husband can take the radiation and chemo and have successful treatment. Please let us know know how it goes.
Don

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Lynn | @cometsmom | Apr 16 6:25am

Thank you Don, and best wishes to you!

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dannymac23 | @dannymac23 | Apr 16 12:37pm

Love your positive attitude, it goes a long way regardless of the final outcome! 🙏🙏🙏🙏

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Lynn | @cometsmom | Apr 17 10:30am

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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3 replies
chip30 | @chip30 | Apr 18 10:58am
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.

Jump to this post

I don't know where you live but if you can find a PROTON radiation treatment facility near you that would be my
advice at this point. The reason I say that is that I was treated every day for 6 weeks in Knoxville, Tn. where there was 1 of only 40 of these centers in the country. What it does is target the cancer where the tumor is and stops without passing through the body (as PHOTON radiation does) which means it does not harm other organs. The facility in Knoxville had patients coming from quite a ways away and they would rent a place for the week, be treated and return home for the weekend. It is more expensive but if you have decent insurance most of or all of it may be covered. They will also work with you on financing. It worked for me(I am now 76) and the two pet scans I have had were both clear. I wish you all the best as it is a very scary thing to deal with!

REPLY
1 reply
Lynn | @cometsmom | Apr 18 2:15pm
In reply to @chip30 "I don't know where you live but if you can find a PROTON radiation treatment facility..." + (show)
@chip30

I don't know where you live but if you can find a PROTON radiation treatment facility near you that would be my
advice at this point. The reason I say that is that I was treated every day for 6 weeks in Knoxville, Tn. where there was 1 of only 40 of these centers in the country. What it does is target the cancer where the tumor is and stops without passing through the body (as PHOTON radiation does) which means it does not harm other organs. The facility in Knoxville had patients coming from quite a ways away and they would rent a place for the week, be treated and return home for the weekend. It is more expensive but if you have decent insurance most of or all of it may be covered. They will also work with you on financing. It worked for me(I am now 76) and the two pet scans I have had were both clear. I wish you all the best as it is a very scary thing to deal with!

Jump to this post

Thank you for the suggestion Chip. We're in the northeast (Connecticut), only 1-1/2 hours from Mass General in Boston where they offer it. Unfortunately I don't have enough PTO left at work to be able to make that work. I'm glad you were able to get that treatment and to do well! Thanks again for your reply and suggestion. All the best to you

REPLY
chip30 | @chip30 | Apr 18 10:22pm
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.

Jump to this post

I'm sorry you can't get paid time off for a situation like this. I/We were fortunate that at the point is was discovered in me we were retired and my wife had wonderful insurance benefits for having been a public school teacher for many years in upstate New York (Rochester area). We were very fortunate in many ways. I can only
wish and hope for you that things work out. Stay strong and believe!

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 19 7:02pm

@cometsmom, how did the simulation appointment go? When will your husband start radiation and for how long? How are YOU doing?

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Lynn | @cometsmom | Apr 19 7:56pm

Hi Colleen, thanks for checking in. The treatment plan for radiation should be back by the middle of next week. We see the oncologist Friday and chemo will start Tuesday the 30th. I'm thinking maybe they'd start radiation on Monday the 29th but don't know for sure. The plan is for 28 days of radiation.

I'm okay. I had surgery in the middle of March and have been out on FMLA from my job, going back the 29th. I'm grateful to have been able to go to all the appts and to just be around in general for these past weeks. We found out about the recurrence just a couple days after finding out I needed surgery. It's been overwhelming, but we're getting through things as they come. I wish we could've gotten through at least one week of his treatment before I go back to work but it just didn't work out that way.

So grateful to have found this forum. Appreciate you reaching out.

REPLY
1 reply
mrgvw | @mrgvw | Apr 20 6:34am
In reply to @cometsmom "Hi Colleen, thanks for checking in. The treatment plan for radiation should be back by the..." + (show)
@cometsmom

Hi Colleen, thanks for checking in. The treatment plan for radiation should be back by the middle of next week. We see the oncologist Friday and chemo will start Tuesday the 30th. I'm thinking maybe they'd start radiation on Monday the 29th but don't know for sure. The plan is for 28 days of radiation.

I'm okay. I had surgery in the middle of March and have been out on FMLA from my job, going back the 29th. I'm grateful to have been able to go to all the appts and to just be around in general for these past weeks. We found out about the recurrence just a couple days after finding out I needed surgery. It's been overwhelming, but we're getting through things as they come. I wish we could've gotten through at least one week of his treatment before I go back to work but it just didn't work out that way.

So grateful to have found this forum. Appreciate you reaching out.

Jump to this post

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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