permanent side effects from chemo - anyone else?

ohilly
ohilly Member Posts: 441
edited March 2014 in Breast Cancer #1
I am still struggling emotionally to deal with the side effect chemo gave me: my female pattern baldness which would not have showed up until I was an old lady, yet was exposed or accelerated by the chemo. I am trying to take the right steps: I found a beautiful human hair wig and lightened my hair and styled it differently. I am still trying to decide if I should wear the wig now or wait until (if?) things get worse. I have another appt. with my dermatologist and will ask more about the prognosis. I am also seeing a therapist and psychiatrist to deal with my anxiety. I'm glad I finally got an answer as to why my hair was not growing back in as much as everyone's else, but I do feel sad.

My question to the group is: does anyone else have any permanent side effects from chemo, and how did you deal with your feelings about this? When I was going thru chemo, I just sailed thru it with very few side effects (or so I thought at the time). Now it is hitting me just how powerful chemo is and what it does to you. Don't get me wrong: knowing everything I know now, I would still choose to do the same because surviving is my first priority. I am just sad.

If there is anyone else who experienced permanent or long-term side effects from chemo, please write back. Then I won't feel so alone (of course, I don't wish this on anyone)

Ohilly

Comments

  • RE
    RE Member Posts: 4,591 Member
    #2
    Permanent Damage
    Hello Ohilly,

    You certainly are not alone in this. As a direct result of chemo, surgery and radiation I have lymphedema in my left arm that is both painful and at times can be life threatening. I wear a pressure sleeve on that arm and a hand gauntlet daily to ease the swelling and pain. I take meds daily (which made me very tired) to also ease the pain and if I choose to go on a trip I carry antibiotics with me because this arm and hand can easily become seriously infected and antibiotics must be administer immediately to avoid hospitalization. My arm is very weak as is my hand. I also have nerve damage in both that can stop me in my tracks when they decide to light up. Please do not get me wrong I am not complaining just telling you what has happened to me because you have asked. In retrospect I would do it all again knowing the damage that would result.

    My best to you,

    RE
  • ohilly
    ohilly Member Posts: 441
    #3
    RE said:

    Permanent Damage
    Hello Ohilly,

    You certainly are not alone in this. As a direct result of chemo, surgery and radiation I have lymphedema in my left arm that is both painful and at times can be life threatening. I wear a pressure sleeve on that arm and a hand gauntlet daily to ease the swelling and pain. I take meds daily (which made me very tired) to also ease the pain and if I choose to go on a trip I carry antibiotics with me because this arm and hand can easily become seriously infected and antibiotics must be administer immediately to avoid hospitalization. My arm is very weak as is my hand. I also have nerve damage in both that can stop me in my tracks when they decide to light up. Please do not get me wrong I am not complaining just telling you what has happened to me because you have asked. In retrospect I would do it all again knowing the damage that would result.

    My best to you,

    RE

    how to deal
    Re, you are inspiration to me. You are always positive and encouraging, yet have been through so much. Here I am complaining about my silly hair and you have to deal with life-threatening lymphedema. It does kind of put it in perspective for me.

    Another question: so how do you deal with your lymphedema emotionally? Doesn't it get to you, even though you (like me) would do it all over again if you had to?

    Thanks for responding. I will be okay. I'm just struggling to adjust to my 'news.'

    Ohilly
  • RE
    RE Member Posts: 4,591 Member
    #4
    ohilly said:

    how to deal
    Re, you are inspiration to me. You are always positive and encouraging, yet have been through so much. Here I am complaining about my silly hair and you have to deal with life-threatening lymphedema. It does kind of put it in perspective for me.

    Another question: so how do you deal with your lymphedema emotionally? Doesn't it get to you, even though you (like me) would do it all over again if you had to?

    Thanks for responding. I will be okay. I'm just struggling to adjust to my 'news.'

    Ohilly

    Perspective
    Ohilly, first thank you for your kinds words I am happy to help you in any small way that I can. I only found out I had lymphedema because I did get a life threatening staph infection and had to be treated immediately. I was disappointed of course but generally okay with it. The hardest thing for me has been wearing the arm band and all the funny looks. I just had to decide it was okay and when someone stares I smile and give them the opportunity to ask me whats up with the arm. I usually tell them I have had cancer three times and this is a very small price to pay to still be above ground and it truly is. You are dealing with an adjustment Ohilly, it is just going to take a bit of time. Do your best to look at the bright side, you are still here and I am so glad that you are!

    RE
  • tami90650
    tami90650 Member Posts: 82
    #5
    ohilly said:

    how to deal
    Re, you are inspiration to me. You are always positive and encouraging, yet have been through so much. Here I am complaining about my silly hair and you have to deal with life-threatening lymphedema. It does kind of put it in perspective for me.

    Another question: so how do you deal with your lymphedema emotionally? Doesn't it get to you, even though you (like me) would do it all over again if you had to?

    Thanks for responding. I will be okay. I'm just struggling to adjust to my 'news.'

    Ohilly

    after affects
    Wow, you chilly and re are both two incredibly strong women. I was very fortunate to not have any lasting side affects as of yet. I do feel a bit tramatized by the whole situation I went through, but not daily. I hear someone's cancer masessatized to their bones or lungs or the other breast and all of a sudden I feel symptoms on myself. Then instead of taking my insane **** to the drs, no, I bury myself in my mind. Its sick and I wish that I had a way to stop my head from running. I did just get a 100 percent ok from the dr last week so I have a mind break for a while. At least until i feel a new ailment
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #6
    I really felt the tx added
    I really felt the tx added 20yrs to my body and mind. I hope to take off these years in time.
    I don't really know what is lingering from chem as I've had problems with the anti-estrogen's as well for the past 2 years. I would have to say fatigue is a big one and the neuropathy in my feet which I handle with a small dose of neurontin continues as well. My memory and comprehension have suffered ( I need all I can get:) and it's been 2 yrs since my last chemo tx. It's all a loss of the old you, whether it's hair problems, neuropathy, lymphedema or any number of things. There's a process and sadness is part of it. So is anger and fear. But I think in the end there is acceptance and then we try and make the best of it. I'm a slow learner so I'm still ticked that I don't have the same energy, vitality and passion I once had but the fortunate ones learn quickly and before they know it they are making the best of it and are much happier for it.

    Can't wait to see your pictures :)
    love
    jan
  • rjjj
    rjjj Member Posts: 1,822 Member
    #7
    ohilly said:

    how to deal
    Re, you are inspiration to me. You are always positive and encouraging, yet have been through so much. Here I am complaining about my silly hair and you have to deal with life-threatening lymphedema. It does kind of put it in perspective for me.

    Another question: so how do you deal with your lymphedema emotionally? Doesn't it get to you, even though you (like me) would do it all over again if you had to?

    Thanks for responding. I will be okay. I'm just struggling to adjust to my 'news.'

    Ohilly

    Ohiily
    It is sad, and emotional to lose a part of ourselves. I know how much your hair growing back meant to you. It sounds like you are beginning to accept your situation and move on positively..with a new beautiful wig. Sometimes though when your about to give up..something good happens to bring you more hope. Maybe your hair will still grow. I would like to see a pic of your new colored style. I bet its cute as heck.

    Re, is an inspiration to you and me both. I also have lymphodemia..a garment and a machine that pressurizes fluid back where its supposed to be. I don't always need it but most of the time i do and its about 2 hours out of my day. I make the best out of it by using this time to be with all of you sweet sisters, and i love to do that!

    Wishing you all the best! God Bless,
    Jackie
  • survivor51
    survivor51 Member Posts: 276
    #8
    It is good to not only write about fears/concerns/angers but to reach out to the sisters does help so much. It really didn't "hit" me until several months after I think more of when I didn't have to go to the doctors as often. All of a sudden my comfort zone changed and even though I "felt" normal, I was not emotionally where I was....am comfortable. Somes/most days are much better but I do have "my days". I think the hardest for me is the lack of sexual desire and not knowing how to "connect" to my new body with my husband of 31 years. We are trying to be patient and work together but the dots just aren't connecting. I do find that I feel anger some times, rage, but then it seems everything is OK. It truly is a roller coaster ride. I try not to focus on the what ifs...why ifs....etc. Most of the time it is OK but it is quite different now. I begin my new treatment on Thursday and feeling a bit nervous but I know ....and this too will pass. Take care, Angela
  • mmontero38
    mmontero38 Member Posts: 1,510
    #9
    Ohilly, as you well know,
    Ohilly, as you well know, I'm struggling with the weight gain because of chemo and the tamoxifen. Very discouraging when you deprive yourself and not ONE ounce comes off. But, the worse is the thyroid problem. So many things were affected because of my thyroid. All in all it's been a trip I wouldn't wish on my worst enemy, but I am so grateful to be alive. I just have to learn to accept myself for what I am right now until I'm off all these meds. I guess I'm looking for peace, just like you. Hugs, Lili

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