clueless after first chemo

aysemari
aysemari Member Posts: 1,596 Member
edited March 2014 in Breast Cancer #1
Hello everyone,

I had my first chemo on friday and would you believe it, my doctor didn't tell me anything.
It worries me that he didn't think it was necessary. I was out today in a big crowd living it
up (no hand sanitizer in sight). I am feeling nauseous and have a buzzing headache but other
than that I felt fine.

He didn't tell me what to eat, what to avoid, vitamins or not. Should he be telling me this or
do I have to see a nutrition counselor? One big thing that got me was, someone who undergone
a chemo class was told to keep soy out of her diet, especially since she's HER2 positive, like me.
But I have no clue, my oncologist never mentioned it.

Any input for chemo green horn?

Thanks,
Ayse

Comments

  • New Flower
    New Flower Member Posts: 4,294 Member
    #2
    Hi
    Soy should be kept out of diet for ER+ estrogen positive cancers. Yes, if your insurance pay you can see a nutritionist. There is not special diets for Chemo, just you need to DRINK a lot, especially in the dry climate as yours. Ask your doctor or nurse questions do not assume .
    Good night
    New Flower
  • dyaneb123
    dyaneb123 Member Posts: 950
    #3
    Hmmm Ayse
    I had to attend a
    Hmmm Ayse
    I had to attend a Chemo class before my first treatment to cover all the basics. I think it's really negligent of your doctors if you didn't have some kind of orientation. At this point I would suggest that you go back and read all the posts talking about what to expect and what to do.... I think the posts helped me more than anything else anyway. There is a diet posted on the ACS page, but you just need to listen to your body during chemo and eat what you can stomach and what doesn't taste disgusting. For me it was mashed potatoes, milk, bread....white stuff that I normally never touch....but you may experience some diarea from the meds so be prepared!
  • pattimc
    pattimc Member Posts: 431
    #4
    dyaneb123 said:

    Hmmm Ayse
    I had to attend a
    Hmmm Ayse
    I had to attend a Chemo class before my first treatment to cover all the basics. I think it's really negligent of your doctors if you didn't have some kind of orientation. At this point I would suggest that you go back and read all the posts talking about what to expect and what to do.... I think the posts helped me more than anything else anyway. There is a diet posted on the ACS page, but you just need to listen to your body during chemo and eat what you can stomach and what doesn't taste disgusting. For me it was mashed potatoes, milk, bread....white stuff that I normally never touch....but you may experience some diarea from the meds so be prepared!

    Orientation
    I too had to attend an orientation session on both chemo and radiation and had to sign some forms (like, I wasn't pregnant, side effects, etc.) I would ask about that right away.
  • brenda247
    brenda247 Member Posts: 124
    #5
    not good
    your dr didnt tell you anything?? wow not good!! i guess they all are different but you are not suppose to be out around people after treatments.. but you know everyone is different and some never felt like i did. i was very nausau every treatment but the pills they gave me sure did help and they told me what to do and what to expect. i have the most wonderful onocolgy and they are more like my family than drs.. they stayed on top of everything when i didnt think i could. my counts got so messed up even though i was doing everything i should have but they always got me back on top. i owe me getting through this to myself but to them too!!
    just remember to take care of yourself and do ask for anything if you need it.. and im so glad that you are feeling as good as you are.. its a journey for sure but it better with some than others.. and the people here are awecome they helped me so much!!! love you all!!
  • xskeetshooter
    xskeetshooter Member Posts: 169
    #6
    ?
    why didnt you ask,and you can still ask them with a phone call
  • Taina
    Taina Member Posts: 166
    #7
    drink lots of water
    Hello, Ayse....
    I can't believe your oncologist din't tell you anything or nurses in his/her office....
    ***Drink lots of water...
    ***No vitamins while your on chemo and radiation treatments.....
    ***you can ask your doctor for nausea prescription...
    ***i got an allergic reaction from Taxotere so i took benadril.
    ***day after chemo got a shot of Neulesta to keep my blood count high.
    ***i ate and drink the following to keep my blood count up: lentils, beans, liver, grape juice 100% welch.
    ***lots of rest...
    ***stay away from sick people...
    ***CHECK WITH YOUR HEALTH INSURANCE, SOMETIMES YOU CAN SING UP WITH A NURSE MANAGER, THEY WILL F/UP WITH YOU AND YOU CAN CALL THEM ANY TIME YOU HAVE QUESTIONS....
    *** ck this web site http://www.cleaningforareason.org/
  • aysemari
    aysemari Member Posts: 1,596 Member
    #8
    The funny thing is...
    I did ask, I even mentioned I heard about the class. Everything I know I learned from here.
    And those were the questions I asked and he basically confirmed them for me. But I had
    no idea about soy and I read that some took vitamins while others didnt... Sometimes you
    don't even know the question you need to be asking.

    For example I thought I can't be in a crowd if my white blood cell count is low. And he
    never mentioned to me anything about fertility... issues. I know I ready it here yesterday
    about the periods. I am starting to loose faith in him.

    When I called today, I didn't even get a call back, he was busy so I left a message with
    the nurse.

    Ayse
  • pinkflutterby
    pinkflutterby Member Posts: 615 Member
    #9
    aysemari said:

    The funny thing is...
    I did ask, I even mentioned I heard about the class. Everything I know I learned from here.
    And those were the questions I asked and he basically confirmed them for me. But I had
    no idea about soy and I read that some took vitamins while others didnt... Sometimes you
    don't even know the question you need to be asking.

    For example I thought I can't be in a crowd if my white blood cell count is low. And he
    never mentioned to me anything about fertility... issues. I know I ready it here yesterday
    about the periods. I am starting to loose faith in him.

    When I called today, I didn't even get a call back, he was busy so I left a message with
    the nurse.

    Ayse

    I also had to attend chemo
    I also had to attend chemo teaching before my first chemo session, also included me signing all the warnings of chemo paperwork including fertility and periods. My center also offers a nutritionist, I have paperwork of suggested diets from her but have not meet with her personally.

    I am told nearly every week by my chemo nurse team to avoid large crowds. Over the summer they commented on my painted toe nails and when I told them I treat myself to pedicures, I was told not to do that anymore either :(

    Lastly, I have called my oncologist several times, she herself typically calls me back and at times her nurse does, and its ALWAYS on the same day. Their policy is they return all calls after 3pm.

    so sorry, I would be very upset too!!!

    Libby

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