After effects of chemo/radiotherapies

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Caerayda
Caerayda Member Posts: 3
edited June 2020 in Chemotherapy - Before, During, and After

I was diagnosed with TNBC in January 2019 and underwent a lumpectomy, 6 months of various (3 different types) chemotherapies and finally 3 weeks of radiotherapy which ended in November 2019. After treatment ended I expected to take a few months to recover however I am now 7 months down the line and I feel worse now than when I was having the treatment. I have peripheral neuropathy which leaves me experiencing numbness and pins and needles my hands, feet and toes, it's not as bad in my hands as it is in my feet. I am managing this with daily foot massages (curtesy of my lovely husband) however, I am really limited in my ability to mobilise or complete every day tasks. For example, if I attempt to prepare a meal (peel potatoes), by the time I've finished I have a strange feeling come over me, my feet get progressively worse through standing and go completely numb and sting, every bone in my body aches (it feels really deep within the bones) and I find myself sweating profusely. This results in me having to sit down and very often go to sleep before I can feel normal again. I only have to be active for 3-5 minutes to see these results. Once I sit down I feel as if I've just run a marathon not peeled some potatoes! As I said I feel worse now than I did when I was having the treatment and was wondering if there was anyone else experiencing these symptoms. I am getting really worried and I think becoming depressed because I am constantly in pain and extremely limited in maintaining my independence. Should I be worried something else is going on? I would really appreciate it if someone could tell me this is normal and it will get better as right now I feel so alone

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  • Trishyla
    Trishyla Member Posts: 1,005
    edited June 2020

    You're not alone. It took me almost a year after treatment ended to get even close to normal. I remember thinking: I'm sick and tired of feeling sick and tired. It's an ongoing process.

    One thing I would highly recommend is to have blood work done, specifically checking for red blood count and vitamin D level. It's very common for both to be very low after chemo.

    The other thing I would suggest is to exercise as much as you can. It's tough with the peripheral neuropathy, but even floor exercises, chair exercises and a stationary bike can make a huge difference.

    Good luck.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2020

    To add to Trish's suggestions, make an appointment to go see a neurologist. There are drugs for the pain - like gabapentin or Lyrica. Neuropathy can get better over a 2-3 year period - but my neurologist cautioned me that "better" doesn't mean back where I was before. It means better than 'now. Some people have found acupuncture helps - others not. Different docs recommend different B-supplements, but you can over do if you're not careful. There are several neuropathy threads on BCO.

    Personally, my hands are mostly better. I was grateful to be able to do up the zippers on my pants again. My feet still have issues, but fortunately for me, not really much pain - just numb like a block of ice. It interferes with my balance, but I have mostly adapted.

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  • Caerayda
    Caerayda Member Posts: 3
    edited June 2020

    Thanks Trishyla and Minus Two

    I think that's the thing, I want to be back to how I was yesterday but need to accept my new 'normal'! At least now I know to experience the symptoms I am experiencing is normal so that has put my mind at rest. I will definitely get my bloods checked as I also think the treatment has started the menopause so need to get that sorted as well

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  • mightlybird01
    mightlybird01 Member Posts: 217
    edited June 2020

    Caerayda, you don't say how old you are, and whether or not you have passed menopause. Those profuse sweats sound like hot flushes to me. When they come on, I feel really weird (slightly disoriented) then I break out in a sweat and 3 minutes later everything is over. The body's thermo-regulation is nor working the same way as it has before. Also, at least contributing to your numbness in hands could be low estrogen (as in menopause). I would recommend in addition to what others have said enroll in a gym and try some gentle yoga, and do lots of walking.

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  • Caerayda
    Caerayda Member Posts: 3
    edited June 2020

    Hi mightlybird01

    I'm 52 and have not gone through menopause and I do suspect the sweats could be related however, they can last for up to 30 minutes and above and the strange feeling I speak of, (nine times out of ten) doesn't clear until after I have slept for a few hours. Thanks for the advice in regards to the exercise, I am trying to build up my muscles by walking every day however, due to a back condition, my ability to do this is limited due to the pain I experience. I need to see my GP in relation to the pain medication I am taking but due to the covid pandemic, it's proving hard to get an appointment right now

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  • mightlybird01
    mightlybird01 Member Posts: 217
    edited June 2020

    Yes, this is a difficult situation with the back pain, but I do believe all your symptoms could easily be explained by beginning menopause and lack of exercise. You need to try and break out from that cycle. Maybe when you feel the hot flush coming try and take a cold shower and then do a 20 minute some exercise that you can tolerate (maybe lifting some weights while sitting). I would in addition to seeking pain medication see a physical therapist and maybe an exercise physiologist. They can give you good advice on how to safely exercise.

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