Fibromyalgia and radiation

Posted by sue417 @sue417, Jun 16, 2024

Hi
I had surgery in December 2023 and February 2024 for breast cancer.I had 20 radiation treatments.I Finished radiation april second . I am experiencing extreme fatigue . I felt like I was coming around a bend.Having more energy but the more I do the more fatigue i'm getting very frustrated. Wondered, if anyone else on here has had that experience. Also going thru grief. Just lost 1 of my closet friends to Stage 4 ovarian cancer she four for 2yrs

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I had TNBC diagnosed in May 2024. I am 54 years old. I have undifferentiated connective tissue disease and fibromyalgia. I had 6 rounds of chemo (was unable to do the last 2 doses of Taxol due to nerve pain and passing out). I then had 12 of 20 doses of radiation. On the 12th dose of radiation I experienced severe fatigue and burning under my left arm and behind my left lung. The radiology oncology PA advised me to go to the ER in case I had a pulmonary embolism. So I did. There was nothing wrong internally. My husband said I looked grey and very sick. I was in bed for 2 weeks after this with pain behind my lung that comes and goes, 1 month from treatment and I'm still fatigued. There was no compassion or offer of medication for pain aside from 4% lidocaine. I don't feel there is enough understanding from radiology how their treatments affect people with autoimmune diseases and fibromyalgia. Needless to say, I chose to stop treatment and they wanted me to do at least 3 more when I couldn't even make it to their office. I was shocked, confused, and disappointed.

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@ygregg

I had TNBC diagnosed in May 2024. I am 54 years old. I have undifferentiated connective tissue disease and fibromyalgia. I had 6 rounds of chemo (was unable to do the last 2 doses of Taxol due to nerve pain and passing out). I then had 12 of 20 doses of radiation. On the 12th dose of radiation I experienced severe fatigue and burning under my left arm and behind my left lung. The radiology oncology PA advised me to go to the ER in case I had a pulmonary embolism. So I did. There was nothing wrong internally. My husband said I looked grey and very sick. I was in bed for 2 weeks after this with pain behind my lung that comes and goes, 1 month from treatment and I'm still fatigued. There was no compassion or offer of medication for pain aside from 4% lidocaine. I don't feel there is enough understanding from radiology how their treatments affect people with autoimmune diseases and fibromyalgia. Needless to say, I chose to stop treatment and they wanted me to do at least 3 more when I couldn't even make it to their office. I was shocked, confused, and disappointed.

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Hi
I am very sorry that you had this kind of experience. It's like they overkill everything. I don't know what
TNBC is. I hope that if possible you would find a different DR. The lack of care you had is very disappointing 😞.

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TNBC = Triple Negative Breast Cancer. According to Google "Triple-negative breast cancer (TNBC) is an aggressive type of breast cancer that lacks estrogen and progesterone receptors, and doesn't overproduce the HER2 protein, making it resistant to certain hormone and HER2-targeted therapies." I hope Google is wrong about TNBC being aggressive. I agree with Sue417 that you need a different doctor.

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@sue417

Hi
I am very sorry that you had this kind of experience. It's like they overkill everything. I don't know what
TNBC is. I hope that if possible you would find a different DR. The lack of care you had is very disappointing 😞.

Jump to this post

Thank you, Sue. It is short for Triple Negative Breast Cancer, and it has been a long 6 months. I've finally finished all treatments. I have changed doctors and they've been incredibly supportive and much more thorough. From here on out, care will be MUCH better.

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@peggydobbs

TNBC = Triple Negative Breast Cancer. According to Google "Triple-negative breast cancer (TNBC) is an aggressive type of breast cancer that lacks estrogen and progesterone receptors, and doesn't overproduce the HER2 protein, making it resistant to certain hormone and HER2-targeted therapies." I hope Google is wrong about TNBC being aggressive. I agree with Sue417 that you need a different doctor.

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@peggydobbs Hi Peggy,
Unfortunately Google is accurate, it is an aggressive form of breast cancer. By the grace of God, it was caught early and my 5-yr prognosis is good. I have changed doctors and future care should be MUCH better!!

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@sue417 I notice that your initial post is last year, almost 9 months ago. Is your fatigue from radiation getting better?

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@myoga

@sue417 I notice that your initial post is last year, almost 9 months ago. Is your fatigue from radiation getting better?

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Hi @myoga
I can say going into my 11 month it has improved from what it was. In no way is my energy like it was prior to radiation. I have to pace what I am doing in a day. If I do to much the next day is a right off. I am now on a medication trazadone 25mg it's an SARi it's definitely helping. It for sleep, anxiety and depression. I have been on it 4 days and notice a good difference . Saturday I increase it to 50mg if I need to. I have never had depression or anxiety like I have had since been taken off hormones.
Or sleep issues. It took my doctor trying five different medications to get one that I could tolerate. Thank god for this one no side effects at all and you can take it long term.

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@sue417

Hi @myoga
I can say going into my 11 month it has improved from what it was. In no way is my energy like it was prior to radiation. I have to pace what I am doing in a day. If I do to much the next day is a right off. I am now on a medication trazadone 25mg it's an SARi it's definitely helping. It for sleep, anxiety and depression. I have been on it 4 days and notice a good difference . Saturday I increase it to 50mg if I need to. I have never had depression or anxiety like I have had since been taken off hormones.
Or sleep issues. It took my doctor trying five different medications to get one that I could tolerate. Thank god for this one no side effects at all and you can take it long term.

Jump to this post

I’m glad you find the med that works for you. Feeling tired all the time is major cause of depression. My aunt also suffered from tiredness after radiation. Her doctor prescribed med for anemia, ran bone test but nothing showed up. She’s ok now. I think it took her a long time to recover, probably 2 years. But then again, she’s not an active person, so she didn’t feel depressed. For an active person like you, being tired to the point that it prevents you from doing things you enjoy will certainly affect your mental health. Now know it would affect me. Glad you’re doing better. Hugs.

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