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Stamina and fatigue four months after treatment?

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I feel like I went through a year that has certainly taken it's toll. Chemo, radiation and then Herceptin. It has been four months since I did the last Herceptin but as I look back I felt like I dealt with each modality better with more energy last year when I was going through treatment. Before all this (and I am older) I was a tough gal , still working and running around doing what I needed to do. Four months out now I feel more fatigued, as if it all came crashing in now that everything is over. It is a chore to exercise or even want to do household chores. Sleep has been poor and worry has certainly set it about recurrance, etc. I am thinking of going to my primary care MD to see if radiation or ? has damaged my heart as sometimes BP is low in the morning with palpitations that seem to get better by the afternoon. Has anyone else experienced this anxiety or fatigue or ? now that the treatment journey is over?

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  • cyathea
    cyathea Member Posts: 330
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    Racheldog, you are not alone in feeling this way. My last Herceptin was in August and I didn’t feel better for at least four months. I had to push myself to start exercising in October and that has helped, but I started out slowly. I have worked my way up to doing 2 miles on an elliptical but it takes me a full hour to do the 2 miles, so I’m not doing anything that is high intensity yet.

    My sleep has improved a little as well, but the hot flashes still wake me up a few times a night.

    I have pain in my back and sometimes in my ribs, which is probably due to the radiation. When I was going to PT last year for my lymphedema and frozen shoulder, my therapist said that I should expect lingering side effects for many years. “The gift that keeps on giving…”

    I don’t have a problem with anxiety but the thought of progression is always in the back of my mind when I have pain.

    I’m not a doctor but my understanding is that Herceptin can cause heart issues. I had an echocardiogram every 3-4 months while I was getting the infusions. Although radiation caused issues with my friend’s heart, that was 30 years ago and she had lymphoma, not BC. I think ROs and the equipment are generally more targeted now.

    Hang in there! I hope you can get some help from one of your doctors to ease your mind about your heart and recurrence. ((Hugs))


  • WC3
    WC3 Member Posts: 658
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    Racheldog:

    My energy started to return about 8 months after chemotherapy but it took me over a year and a half to start feeling close to back to normal in terms of energy levels.

  • minustwo
    minustwo Member Posts: 13,116
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    Rachael - I hear you for the fatigue!!! Nap whenever you can.

    It's my understanding that heart damage from Herceptin usually resolves once you quit taking the drug. However heart damage from Adriamycin might not. Your specs don't say what chemo you had. I to had frequent echos, and my MO sent me to a cardiologist once I was a year out just to be sure.

  • rah2464
    rah2464 Member Posts: 1,192
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    Racheldog your profile indicates that your cancer was hormone receptor positive. Are you by chance on an AI or Tamoxifen? Some of the side effects you list (fatigue, sleep disturbances, lassitude) could be attributable to those medications as well if you are taking them. Glad you are being proactive and getting a thorough check.

  • mle42
    mle42 Member Posts: 124
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    Rachel, I found that my anxiety spiked when I was nearing the end of active treatment. It's like during the most intense parts of treatment, I didn't let myself really think about the emotional side of things, because I just needed to put my head down and show up every day. I didn't understand why I started having such a hard time mentally and emotionally towards the end of radiation. I started talking with a therapist who specializes in treating people with cancer, and was told that it is actually really common for people to start having MORE anxiety when treatment is over. I share this so that you know you aren't alone! And if you can, try to give yourself some extra support - whether that's talking things through with a therapist, a support group, or trusted friend. Absolutely a good idea to check in with your oncologist or your primary care dr about physical symptoms and have the discussion around how to monitor your heart. AND also realize that anxiety itself can cause heart palpitations and fatigue, and our mental health needs care, too.

  • racheldog
    racheldog Member Posts: 209
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    You all have been great to substantiate what I am feeling now that treatment is over. I had a cardiac echo every 3 months and the last echo I had was 66% before my last Herceptin infusion. I could have done one more after but at that point I felt it was good so I skipped it. It is good to hear that others have experienced this anxiety once all is over. I cannot believe myself because I was one of those spine of stainless steel women who was tough as nails and faced everything. I have started taking Magnesium and it seems to help with sleep and even the morning palpitations. Anxiety has got to contribute to that. I know that lack of sleep, and dehydration are bad and can increase anxiety and lower stamina. What a double edged sword.

    Just feel like ...what the heck? Why now when treatment is over? I am still fighting going on hormone therapy only because until I feel like I have more stamina and get up and go I sure do not want the insomnia and other side effects that go with those. The MO is not happy with that but that is a decision right now. Mental health providers who specialize in cancer are hard to find, especially now with the pandemic. I am in a BC support Zoom group and have a good friend to chat with. Even started a weekly meditation class! Trying to practice that on my own. It sure puts my dogs to sleep. I , too, am trying hard to use some of the exercise equipment I have but sure seems like baby steps to use these again. Like all of you I want to feel like myself again. Appreciate hearing qualification that others are going through this "survivorship" ever so slowly.

  • monarchandthemilkweed
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    As you can see from my stats, it hasn't even been a year since diagnosis for me let alone a year since I fished chemo or surgery. But I feel the fatigue too. I go to my bed every night around 830. It used to be 10 or 10:30 I don't fall asleep that early (some nights I do) but I just need to be in bed. I want to be who I was before cancer but I'm not sure that will ever happen. I get frustrated that I'm not there but I have to remind myself of all the things I am doing. I am back at work. I'm back to doing all of the cooking and cleaning. My husband does a lot of the errands and driving kids around that I used to do I've started working out again. If going to be at 8 pm (when my 7 year old does!) then that's ok. I feel bad for my husband. But I think he understands. I get up around 7 am. So what works for me is 10-11 hours of rest (not sleep) a night. I probably sleep 8 hours and right now my sleep is decent. That’s not always the case. I too worry a little about recurrence. Every twinge worries me. But I try to not let the worry pick up any momentum.

  • parakeetsrule
    parakeetsrule Member Posts: 605
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    Don't avoid hormone therapy just because of what you've heard about side effects. They are very good at reducing the risk that your cancer will return, and most women do fine on them with none or manageable side effects. The people who do fine aren't in here complaining about side effects. :)

    You can always stop taking them if you do have unpleasant side effects. But you can't go back in time and stop a recurrence from happening if you skip them.

  • racheldog
    racheldog Member Posts: 209
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    Monarchandt…--Oh my do not feel guilty about in bed at 8-830 pm. That is exactly what I have decided I need to do. My new plan. Never ever before BC did I go to bed before 10-1030 but I feel as you do. I can usually fall asleep easilty but often wake up at least once and feel like the "rest" in bed is what is needed. I went to have errands and taxes done today and was sure tired by 6:30 pm. Was never like this in my former pre-BC life. I am single so what needs to be done in my house is by me. Seems like some days a brain fog is also there and I used to be the great multitasker running around like a whiz getting things done. Boy has life slowed down. I would like to believe that by the end of this new year maybe I will return to feeling like my old self. Maybe this all takes time?

    ParakeetsRule, I am hearing you. I am seeing my MO next week and a new surgeon (my wonderful surgeon moved) just to be followed by her. I am going to discuss trying the AI every other day with her blessing just to ease into it. I have read that others have done that. I did start a DIM supplement, which I know there is little data on.

  • ruthbru
    ruthbru Member Posts: 47,038
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    Somewhere I read that however long you were in 'active treatment', it will take that long again to feel 100%. From personal experience, I'd say to double that time. I think crashing when things are over is pretty normal. During treatment a person is in 'fight mode', and when it's done, it takes awhile to process the experience mentally as well as to recover physically. Give yourself some time, but make sure to get some exercise rather you feel like it or not; it's important for many reasons (including being the best non-medical thing you can do to reduce your risk of recurrence). It took me two years to really feel like myself again.

  • threetree
    threetree Member Posts: 1,366
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    Ditto what Ruthbru just said. I was finished with active treatment around the end of 2019 and it was only last fall that I started to feel more normal again; and even that comes with some qualifications. It takes a lot of time and I don't expect to ever feel like "my old self" again at this point, just "much better". Walking every day for 40-60 minutes has helped tremendously.