How long does it take to feel well again?

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Sydneybased
Sydneybased Member Posts: 106
edited June 2014 in HER2+ (Positive) Breast Cancer

It would be good to hear experiences of how long it takes to feel really well again after chemo, radiation, herceptin etc.

I had lumpectomy, TCH, herceptin x 17, and radiation x 33 doses. Chemo finished in March 2011; radiation in April 2011; and herceptin in November 2011.The side effects that I'm still experiencing include:

sore breast - feels swollen - possibly fluid retention

sore ribs under radiated breast

arthritic pain in hips and lower back

weak upper back

general feeling of feeling different from before (despite exercise and a good diet).

In your experience, how long did it take you to feel back to normal or did you ever get there?

Will these aches and pains disappear over time? I was told by an oncologist recently that tamoxifen causes pains in hands and possibly shoulder, but not hips, back etc

Recent CT scan clear for spread.

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  • Sydneybased
    Sydneybased Member Posts: 106
    edited April 2012

    Oh, and I forgot to mention that recent blood tests showed very low white blood cell count and neutrophils - dismissed by breast surgeon as "probably just fighting an infection when blood taken" and nothing to worry about

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  • Kellennea
    Kellennea Member Posts: 8
    edited April 2012

    Wow - We were on almost the exact schedule. I was Dx 10.01.10, did a lumpectomy (clear margins) 0/3 nodes. 6 rounds of TCH (ended 3/11) 11 rounds of Herceptin (ended 11/11) and 33 rounds of radiation (ended 5/11)

    sore breast - feels swollen - possibly fluid retention - I also have this issue,although it was gotten better, my RO believes it is fluid retention, my next 6 month check up with her is in June so I am going to see what we could do about it.

    sore ribs under radiated breast - OMG! I though I had mets to my bones the pain was so intense - It has since gone away

    arthritic pain in hips and lower back - I cant even sit on the floor wth my legs crossed at the ankle and forget about the yoga that I used to take weekly. My hips were so bad that my MO gave me a referral for PT, I am happy to say that with regular stretching in the morning and evening, I can now open my hips *almost* fully. I also do 20 - 25 minutes per day on the eleptical.

    weak upper back - I did not experience this.

    I feel like I am almost back to me, physically.

    I hope you start feeling better soon as well :)

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  • Sydneybased
    Sydneybased Member Posts: 106
    edited April 2012

    Sounds ike the same schedule KellenneaSmile

    I think that exercise is probably the answer. I'm less aware of aches and pains if I get off my butt and shake my stuff.

    On the radiation after-effects, my breast surgeon told me the other day that some women bounce back after a few months, while others can take up to two years.

    Let's see how it goes.....

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  • Sydneybased
    Sydneybased Member Posts: 106
    edited April 2012

    Maybe I should say "really well again".

    Can anyone advise on whether a CT scan of chest/abdomen/pelvis picks up bone health issues too? Or is that a separate test?

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  • camillegal
    camillegal Member Posts: 16,882
    edited April 2012

    Well I can'realy say since eeryone is so different but I can say good Luck that it happens quicker than u think.

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  • Sydneybased
    Sydneybased Member Posts: 106
    edited April 2012
    That's sweet of youSmile
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  • marejo
    marejo Member Posts: 1,356
    edited April 2012

    I did not read the other posts.  Just saw this topic and thought I'd reply.  I remember when herceptin ended feeling just ok.  As the weeks and months rolled on, I felt fine....or so I thought.  About 1 year after herceptin had ended, I remember saying to my husband...."I didn't realize how tired and bad I felt....because I now feel good."  I'd say, 1 year it takes the body to get back to some kind of "normal!"  Although, I remember my oncology nurse saying to me once..."Mary Jo, this is your new normal now." 

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  • Sydneybased
    Sydneybased Member Posts: 106
    edited April 2012

    Interesting Marejo. Good to hear that you're feeling really well one year on from the end of herceptin.

    ...another six months and I'll never know it happened to me....well, that would be nice!

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  • djfrro
    djfrro Member Posts: 71
    edited April 2012

    WOW, I finished hercptin about 4 months ago.  Now I am thinking maybe I don't have bone mets.  I have so many aches and pains I have pretty much resigned myself to it but maybe not?  I never thought about the pain in my ribs being from the radiation, or the pain in my hip being a SE.  I just so want to be back to my old self.

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  • Sydneybased
    Sydneybased Member Posts: 106
    edited April 2012
    I finished herceptin in November. Perhaps the awareness of the aches and pains is because everything is getting back to normal, and these stick out more. I shift from thinking 'WTF let's get on with life' to being deeply concerned that something is going on. No woman's land..... a half way place between life as we want it and a life we can't bear thinking about. These are head issues.Embarassed
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  • shadow2356
    shadow2356 Member Posts: 393
    edited April 2012

    About 6 months after I finished herceptin I was feeling pretty good. By that time my bone pain was subsiding. I think it was a year after I finished it all where I started feeling energetic and like myself. It took me a long time. But when you realize they have been putting this poison in your body for over a year it makes sense that it should take awhile.

    Good luck!

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  • Sydneybased
    Sydneybased Member Posts: 106
    edited April 2012

    Interesting shadow2356. I await a return to 'normal'. I'd love to kick tamoxifen off the list of potential culprits (is it cupable for aches and pains...and a million other questions?), but haven't got the confidence right now.

    If anyone has some advice on going it alone without tamoxifen i.e. managing oestrogen in a natural way, I'd be really interested to hear. This concept of popping a pill to counter a health problem, and then another pill to counter the problems caused by the first pill is JUST SO WRONG.

    I wrote to Jane Plant to find out if she could give some advice on going it alone without tamoxifen (she's doing that) but just got a standard, stock answer "I'm not a medical doctor, so can't give you medical advice".I wish she'd write a book just on that aspect for all those people who would drop tamoxifen/AIs if there were a viable alternative.

    Oh dear, I've gone off message on my own thread. CALL THE MODS.....Wink

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  • Sassa
    Sassa Member Posts: 1,588
    edited May 2012

    I was diagnosed in November2006.  I had bilateral mastectomies, 4 AC and one year of herceptin.  I started to feel good in April, 2 months after the end of AC but only two months into the herceptin.

    I think it was because I had started exercising again (walking, biking, and water aerobics).  This was about the same time as the first reports on the benefit of exercise reducing recurrence rates were appearing and that gave me added impetus to my  exercising.

    Of course, 12 years later, I realize my feeling good in April of 2007 is nothing  compared to the way I feel now. I have increased my exercise to including yoga, core strength building and the aerobics.  I look (so I have been told) and feel as if at least 20 years younger than I am physically (now 61). 

    I often feel that I am in the situation of "Other than that, Mrs. Lincoln, how was the play?" when asked about my physical health by my doctors because my first response is "I feel great.  Oh yeah, I am a breast cancer patient, have high BP and cholesterol, GERD, and am on thyroid medication."

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