plateau?

LaCh
LaCh Member Posts: 557
in Anal Cancer #1

Anyone experience a plateau after an initial improvment of pain and fatigue immediately post treatment?  I'm still a lot better than I was during and right after treatment--quite a bit better--but the pain that I still have when going to the bathroom hasn't improved since last week and the level of fatigue is just off the charts.  So a lot of improvment by the end of last week (one weel post treatment) and not much to speak of since then.  Does this match anyone else's experience?

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    plateau

    To be honest, I really don't remember.  I don't doubt that this happens to some people--kind of the two steps forward, one step backward scenario. 

  • sephie
    sephie Member Posts: 650 Member
    #3
    yes

    this is how i was.... took a long long time ...some days good then some days got worse.... i would get soooo disappointed but just keep on trying...eat or drink lots of protein to help heal.... my energy level took a really long time also.......  sephie

  • Marynb
    Marynb Member Posts: 1,118
    #4
    LaCh
    Yes, improvement is not linear at all. Like Martha says, two steps forward, one back. It isn't lke recovery from a virus, where you wake up one morning and feel fine. Hang in there, you are heading in the right direction!
  • Lorikat
    Lorikat Member Posts: 681 Member
    #5
    16 months after tx ended and
    16 months after tx ended and went to the fatigue clinic while in Houston...
  • islandgirlculebra
    islandgirlculebra Member Posts: 155 Member
    #6
    Lorikat said:

    16 months after tx ended and
    16 months after tx ended and went to the fatigue clinic while in Houston...

    Healing

    Healing from the treatments was like nothing I've experienced before. I thought it would be a gradual improvement, just like other things we go through.... But it was not like that at all.  Even my burn pain was weird like that. Would get better for a while, then all the sudden it would be hurting again, with different areas of skin hurting at different times and at different levels of pain.  Everything does eventually improve, but it seems a bit like a roller coaster - up and down. Guess it must be the radiation - the gift that "keeps on giving".......

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    #7
    islandgirlculebra said:

    Healing

    Healing from the treatments was like nothing I've experienced before. I thought it would be a gradual improvement, just like other things we go through.... But it was not like that at all.  Even my burn pain was weird like that. Would get better for a while, then all the sudden it would be hurting again, with different areas of skin hurting at different times and at different levels of pain.  Everything does eventually improve, but it seems a bit like a roller coaster - up and down. Guess it must be the radiation - the gift that "keeps on giving".......

    Healing

    Radiation continues to work for nine months after tx stops.  My rad onc said I would feel better in 9 months and 9 months later I  felt a lot better.  Have never recovered from the fatigue, but I think my ataxia has a lot do do with the fatigue.  It's frustrating.  Eventually you will start having more good days than bad.

  • LaCh
    LaCh Member Posts: 557
    #8
    Phoebesnow said:

    Healing

    Radiation continues to work for nine months after tx stops.  My rad onc said I would feel better in 9 months and 9 months later I  felt a lot better.  Have never recovered from the fatigue, but I think my ataxia has a lot do do with the fatigue.  It's frustrating.  Eventually you will start having more good days than bad.

    thank you to all

    yes, this is what I was afraid of....  it ain't over and might not BE over any time soon. Or ever.  I am so deeply, profoundly, indescribably tired.....  and I find that as the day progresses, the visits to the bathroom become increasingly painful...

    Well, I gotta lay down...  I'm really tired.

     

  • Lorikat
    Lorikat Member Posts: 681 Member
    #9
    LaCh said:

    thank you to all

    yes, this is what I was afraid of....  it ain't over and might not BE over any time soon. Or ever.  I am so deeply, profoundly, indescribably tired.....  and I find that as the day progresses, the visits to the bathroom become increasingly painful...

    Well, I gotta lay down...  I'm really tired.

     

    LaCh ...  I have to say

    LaCh ...  I have to say fatigue is still my biggest hurdle.  I wonder if because of my age, 62, I am just slower to come back?  My awesome radiologist sent me to the fatigue clinic at MDA...  At least he acknowledges the fact the fatiguea is real.  THAT even helps! 3

    You are VERY early in your pst tx and will get much better.  

  • jcruz
    jcruz Member Posts: 379 Member
    #10
    I keep teliing myself this -

    I keep teliing myself this - it takes time.  When I was at the point you are in healing I would just have to collapse in bed several times a day.  Sometimes I just lay there listening to music and other times I just fell into deep sleep.  Even now a few months down the road there are days when I really need a nap.  it's good for me to be reminded by others here who are further along than I am that the fatigue and most unfortunately some of the bathroom issues might be with me for a fair amount of time in the future.

    Hang in there

  • jcruz
    jcruz Member Posts: 379 Member
    #11
    Lorikat said:

    LaCh ...  I have to say

    LaCh ...  I have to say fatigue is still my biggest hurdle.  I wonder if because of my age, 62, I am just slower to come back?  My awesome radiologist sent me to the fatigue clinic at MDA...  At least he acknowledges the fact the fatiguea is real.  THAT even helps! 3

    You are VERY early in your pst tx and will get much better.  

    a fatigue clinic? wow

    Amazing to see the incredible range of services at MDA and other big cancer centers.  I'm not exactly out in the boonies and I do believe I've gotten good care from the doctors in my area (I didn't have much choice since I've got HMO insurance and limited personal resources) but I wonder sometimes if anything would be different if I'd been treated at one of the big guns.

  • LaCh
    LaCh Member Posts: 557
    #12
    jcruz said:

    I keep teliing myself this -

    I keep teliing myself this - it takes time.  When I was at the point you are in healing I would just have to collapse in bed several times a day.  Sometimes I just lay there listening to music and other times I just fell into deep sleep.  Even now a few months down the road there are days when I really need a nap.  it's good for me to be reminded by others here who are further along than I am that the fatigue and most unfortunately some of the bathroom issues might be with me for a fair amount of time in the future.

    Hang in there

    jcruz

    Yes! Collapse in bed, yes, that's where I am in this process.  And then, from nowhere, later on in the day, I feel like I have more energy. It's so unpredictable, seemingly without rhyme of reason. I'm prepared for the possibility (probability??) that the pain and fatigue issues won't be resolved any time soon, but, of course, like everyone else, hope that I will be.  Don't we all want to be "that exception"?  Thanks  for the info. It's both good and not so good to know that other people have experienced what I'm experiencing.  I don't want it to be so for me, but I suppose that there's some comfort in following a known trajectory. Thanks. 

  • LaCh
    LaCh Member Posts: 557
    #13
    Lorikat said:

    LaCh ...  I have to say

    LaCh ...  I have to say fatigue is still my biggest hurdle.  I wonder if because of my age, 62, I am just slower to come back?  My awesome radiologist sent me to the fatigue clinic at MDA...  At least he acknowledges the fact the fatiguea is real.  THAT even helps! 3

    You are VERY early in your pst tx and will get much better.  

    Lorikat

    Who knows what factors contribute to a slower or faster recovery. I'm only 3 years younger than you and I sure hope that I can get past the fatigue issues, but as I mentioned in my response to jcruz, often, from nowhere, comes a revival of energy.  As soon as the remaining external burn issues are completely resolved and walking isn't an issue (they're mostly resolved now, but not entirely) I plan to start doing some gentle walking on a treadmill for starters.  Sometimes lethargy breeds more lethargy and it occurs to me that that might be a contributing factor in my fatigue.  It's hard to know, really, if it is or it isn't but I was just outside with my dog, and the sun is out and the air is mild and I felt a lot like my old self. It was great.

  • islandgirlculebra
    islandgirlculebra Member Posts: 155 Member
    #14
    LaCh said:

    jcruz

    Yes! Collapse in bed, yes, that's where I am in this process.  And then, from nowhere, later on in the day, I feel like I have more energy. It's so unpredictable, seemingly without rhyme of reason. I'm prepared for the possibility (probability??) that the pain and fatigue issues won't be resolved any time soon, but, of course, like everyone else, hope that I will be.  Don't we all want to be "that exception"?  Thanks  for the info. It's both good and not so good to know that other people have experienced what I'm experiencing.  I don't want it to be so for me, but I suppose that there's some comfort in following a known trajectory. Thanks. 

    Positive Thought....

    The good thing about the timing of your treatments is that by the time the weather starts getting nice you will be feeling pretty good I have a feeling.........

  • LaCh
    LaCh Member Posts: 557
    #15
    islandgirlculebra said:

    Positive Thought....

    The good thing about the timing of your treatments is that by the time the weather starts getting nice you will be feeling pretty good I have a feeling.........

    islandgirlculebra

    You know, that's true....  I realized that at the outset of my treatments.  It was really good timing...  I'm really looking forward to the Spring. We had a taste of what's just around the corner in NYC today (despite more snow on the way later this week).  I really want to be able to spend long days in Central Park with my dog this Spring, like we always do.  So yeah, it was great timing that I had the treatments in the dead of winter and will probably, hopefully be ready to take advantage of the Spring. I'm really looking forward to it.

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