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Has anyone else had ME/CFS and short term photon beam therapy ?

Posted by a24 @a24, Jul 20 11:01am

I have ME/CFS and it flared up again a year and a half ago. Was diagnosed in May of 2026 with Stage 1, invasive ductal carcinoma, grade 2 tumor. Lumpectmy successful, clean margins, clean lymph nodes. I finally had 4 good days of not being completely exhausted, and then today had my first radiation treatment. Within 2 hours I hit a wall and a severe crash. Almost worse than what I have been dealing with for the past year and a half. I am seriously considering not continuing with this treatment as I have read it can cause irreversible mitochondrial damage leading to worsening ME/CFS effects. Has anyone else gone through this? Weighing benefits vs risk.

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kilowat | @kilowat | Jul 22 6:37am

I had proton in 2012 at MD Anderson, cancer came back in 2019 taking hormone shot now, I have bladder issues now up every 2 hours, Overactive Bladder

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Colleen Young, Connect Director | @colleenyoung | Aug 1 11:27am

@a24, I added your question to the Breast Cancer support group to connect with others who have had radiation for invasive ductal cancer and who live with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I'm tagging fellow members like @rbarber100 @brightside21 who have ME/CFS and have had treatments for breast cancer.

@a24, I assume you have since completed your radiation treatment. How are you managing?

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a24 | @a24 | Aug 1 1:49pm
In reply to @colleenyoung "@a24, I added your question to the Breast Cancer support group to connect with others who..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@a24, I added your question to the Breast Cancer support group to connect with others who have had radiation for invasive ductal cancer and who live with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I'm tagging fellow members like @rbarber100 @brightside21 who have ME/CFS and have had treatments for breast cancer.

@a24, I assume you have since completed your radiation treatment. How are you managing?

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@colleenyoung Radiologist oncologist agreed to a 5-day radiation course stretched over two weeks time to help manage the fatigue. It is actually "Photon" radiation (I didn't realize this until after I had made the initial post). Not sure if I can change the wording in my original question or not. I had my fifth and final dose yesterday, 7/31 and am quite fatigued. Rest helps, but still no endurance to do much.

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Colleen Young, Connect Director | @colleenyoung | 1 day ago
In reply to @a24 "@colleenyoung Radiologist oncologist agreed to a 5-day radiation course stretched over two weeks time to help..." + (show)
Profile picture for a24 @a24

@colleenyoung Radiologist oncologist agreed to a 5-day radiation course stretched over two weeks time to help manage the fatigue. It is actually "Photon" radiation (I didn't realize this until after I had made the initial post). Not sure if I can change the wording in my original question or not. I had my fifth and final dose yesterday, 7/31 and am quite fatigued. Rest helps, but still no endurance to do much.

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@a24, I corrected the radiation type in your original post. I hope that things continue to improve since your final dose.

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