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  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    #22
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    You are
    on the prayer list.
  • JuJuBeez
    JuJuBeez Member Posts: 332
    #23
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    laughs_a_lot said:

    You are
    on the prayer list.

    Ilona, So sorry to read
    Ilona, So sorry to read about this. I will be sending prayers and good wishes your way!

    Julie
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #24
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    I am so sorry to hear...what
    I am so sorry to hear...what you are going through. I will keep you in my thoughts...

    Denise
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #25
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    carkris said:

    so sorry about this, glad
    so sorry about this, glad they are very hopeful. glad someone here had some advice

    Thinking of you
    I wanted to say good luck today with your rads therapy. Post if you are feeling like it to let us know how it went.


    Sue :)
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #26
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    disneyfan2008 said:

    I am so sorry to hear...what
    I am so sorry to hear...what you are going through. I will keep you in my thoughts...

    Denise

    llona ...
    You are so strong, courageous, and brave. Prayers and positive thought for you, as
    you enter this new phase of battle.

    Gentle hugs === and positivity surrounding your life.

    Strength, Courage and HOPE for a Cure.

    Vicki Sam
  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
    #27
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    Ilona... so sorry to hear
    Ilona... so sorry to hear the news. Not an easy hurdle to jump, but you will do it. Glad to see other experienced Pink Warriors offer their advice on the matter. Stay Focused, stay Strong.

    Hugs,
    Ines
  • jnl
    jnl Member Posts: 3,869 Member
    #28
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    Muschi said:

    Hi Jennifer
    when you lost all your hair with the rads, did it come back again? I just got my hair back from chemo. I think this time I ware hats, it will be too hot for wigs.
    Thanks again for your help, Ilona
    PS. starting rad this monday for 3 weeks with steroids on the side, LOL

    I am praying for you llona
    I am praying for you llona and thinking of you today.


    Hugs, Leeza
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #29
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    MAJW said:

    I totally understand.....
    My last scans also showed 3 small spots on my brain....I was totally asymptomatic....no headaches, no dizziness, no vision changes nothing....so it was a total shock! My oncologist sent me immediately to my rads onc....He stressed these were very small and he and my med onc are 99.9% sure that the radiation would take "care" of them...I had 10 rads treatments....(my third go round of radiation since this nightmare started in '09) I'm also back on chemo...ugh... Not as easy as the first go round in '09.....

    Here's what I experienced during these treatments....first they do a simulation like with all radiation....it took about 25-30 minutes....they make a plastic mold of your head..Mine was lime green.....because your head can't move during treatments....this mold was used for every treatment....it is actually "bolted" to the table....it's not as bad as it sounds...although I was really anxious about it....after being lined up, the treatment last less than 5 minutes..
    I just told myself I could do anything for 5 minutes! Also brain rads causes almost overwhelming fatigue! Starts about treatment # 6-7.. Rest up before you start and as much as possible....I was totally wiped out! It's been 6 weeks since I finished and slowly but surely my energy is returning but now I'm coping with chemo fatigue....also due to the massive doses of steroids we have to take, no driving....because of the chance of seizures...I'm still not allowed until June...another tip....careful that you don't developed thrush in your mouth, again due to the steroids...I'm dealing with the third episode of this and it's miserable...alters the taste buds big time...have your rads onc prescribe Nystatin and start using it now!

    I hope this has helped....and I wish you the very best...please keep us posted, we care and understand..
    Hugs, Nancy

    double posted
    .
  • Angie2U
    Angie2U Member Posts: 2,991
    #30
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    MAJW said:

    I totally understand.....
    My last scans also showed 3 small spots on my brain....I was totally asymptomatic....no headaches, no dizziness, no vision changes nothing....so it was a total shock! My oncologist sent me immediately to my rads onc....He stressed these were very small and he and my med onc are 99.9% sure that the radiation would take "care" of them...I had 10 rads treatments....(my third go round of radiation since this nightmare started in '09) I'm also back on chemo...ugh... Not as easy as the first go round in '09.....

    Here's what I experienced during these treatments....first they do a simulation like with all radiation....it took about 25-30 minutes....they make a plastic mold of your head..Mine was lime green.....because your head can't move during treatments....this mold was used for every treatment....it is actually "bolted" to the table....it's not as bad as it sounds...although I was really anxious about it....after being lined up, the treatment last less than 5 minutes..
    I just told myself I could do anything for 5 minutes! Also brain rads causes almost overwhelming fatigue! Starts about treatment # 6-7.. Rest up before you start and as much as possible....I was totally wiped out! It's been 6 weeks since I finished and slowly but surely my energy is returning but now I'm coping with chemo fatigue....also due to the massive doses of steroids we have to take, no driving....because of the chance of seizures...I'm still not allowed until June...another tip....careful that you don't developed thrush in your mouth, again due to the steroids...I'm dealing with the third episode of this and it's miserable...alters the taste buds big time...have your rads onc prescribe Nystatin and start using it now!

    I hope this has helped....and I wish you the very best...please keep us posted, we care and understand..
    Hugs, Nancy

    Hoping your rads treatment
    Hoping your rads treatment went well for you today.


    Thinking of you,


    Angie
  • Angie2U
    Angie2U Member Posts: 2,991
    #31
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    Bella Luna said:

    Ilona... so sorry to hear
    Ilona... so sorry to hear the news. Not an easy hurdle to jump, but you will do it. Glad to see other experienced Pink Warriors offer their advice on the matter. Stay Focused, stay Strong.

    Hugs,
    Ines

    How did today go for
    How did today go for you?


    Hugs, Angie
  • Muschi
    Muschi Member Posts: 85 Member
    #32
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    Angie2U said:

    How did today go for
    How did today go for you?


    Hugs, Angie

    Thank's for asking Angie
    It is 2:16AM and I can't sleep. Had my first rad treatment today and it was ok. They told me I will lose my hair again (lost them with chemo the first time) temp. but that is the least I am worried about,haha. Only 14 more treatments to go,LOL. How long I wonder I have to stay on the steroids, the side effects are pretty scary? I will ask the dr. tomorrow!
    huggs Ilona
  • eihtak
    eihtak Member Posts: 1,473 Member
    #33
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    Muschi said:

    Thank's for asking Angie
    It is 2:16AM and I can't sleep. Had my first rad treatment today and it was ok. They told me I will lose my hair again (lost them with chemo the first time) temp. but that is the least I am worried about,haha. Only 14 more treatments to go,LOL. How long I wonder I have to stay on the steroids, the side effects are pretty scary? I will ask the dr. tomorrow!
    huggs Ilona

    Awake also...
    I tend to be awake in the middle of the night too. Its funny tho, I go to sleep around 10:30 or 11:00 and sleep great for a few hours, wake up for a couple, and than back to sleep. I feel ok in the am. like I had a good night so go figure???? Sorry about all you are going through, steroids can play tricks on some people, and usually have a few days of not feeling well when you stop taking them too. Hopefully your body will adjust and this will start to go smoothly for you. As always,all in my prayers.
  • MAJW
    MAJW Member Posts: 2,510 Member
    #34
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    eihtak said:

    Awake also...
    I tend to be awake in the middle of the night too. Its funny tho, I go to sleep around 10:30 or 11:00 and sleep great for a few hours, wake up for a couple, and than back to sleep. I feel ok in the am. like I had a good night so go figure???? Sorry about all you are going through, steroids can play tricks on some people, and usually have a few days of not feeling well when you stop taking them too. Hopefully your body will adjust and this will start to go smoothly for you. As always,all in my prayers.

    STEROIDS...
    Hope you're handling the rads treatments okay....as for the steroids, you won't be able to "just stop" them....you have to be weaned off of them slowly....to just stop them can cause all kinds of problems, including seizures, according to my oncologist...I hate steroids!

    Let us know how you're doing...we care
    Hugs, Nancy
  • Muschi
    Muschi Member Posts: 85 Member
    #35
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    MAJW said:

    STEROIDS...
    Hope you're handling the rads treatments okay....as for the steroids, you won't be able to "just stop" them....you have to be weaned off of them slowly....to just stop them can cause all kinds of problems, including seizures, according to my oncologist...I hate steroids!

    Let us know how you're doing...we care
    Hugs, Nancy

    Thanks Nancy
    Did you also have weight gain while you were on? What about when you were finished with steroids,did you feel ok again? This is so new to me and scary!!!!!
    Hugs back to you,
    Ilona
  • Alexis F
    Alexis F Member Posts: 3,598
    #36
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    Muschi said:

    Thank's for asking Angie
    It is 2:16AM and I can't sleep. Had my first rad treatment today and it was ok. They told me I will lose my hair again (lost them with chemo the first time) temp. but that is the least I am worried about,haha. Only 14 more treatments to go,LOL. How long I wonder I have to stay on the steroids, the side effects are pretty scary? I will ask the dr. tomorrow!
    huggs Ilona

    So sorry you can't sleep
    So sorry you can't sleep llona. I was never on chemo, so, I can't even begin to understand what you must be going through. My prayers and positive thoughts to you!


    Hugs, Lex
  • eihtak
    eihtak Member Posts: 1,473 Member
    #37
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    Muschi said:

    Thanks Nancy
    Did you also have weight gain while you were on? What about when you were finished with steroids,did you feel ok again? This is so new to me and scary!!!!!
    Hugs back to you,
    Ilona

    Weight gain
    My husband was on steroids for his cancer treatment and did gain about 10lbs ( tho he needed to ). It is true you will probably be advised to ween off them when done, at least thats what he was told to do. Within a week or so of being off them he felt much better, he started loosing the weight he had gained also but in his case has tried to put it back on....must be nice huh? The only other issues he experienced was trouble sleeping, he could never sleep night or day for more than an hour or two at a time so always seemed in a bit of a fog. You are in my thoughts and prayers...better days ahead!
  • MAJW
    MAJW Member Posts: 2,510 Member
    #38
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    Alexis F said:

    So sorry you can't sleep
    So sorry you can't sleep llona. I was never on chemo, so, I can't even begin to understand what you must be going through. My prayers and positive thoughts to you!


    Hugs, Lex

    llona
    No I didn't gain weight...I really need to.....sleep was a problem....as I stated before, brain rads for me caused overwhelming fatigue...nothing like my previous rads or even chemo fatigue....slowly my energy is returning but dealing with chemo again....plus I lost my hair again from the rads...

    Keep us posted,
    Hugs, Nancy
  • Megan M
    Megan M Member Posts: 3,000
    #39
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    MAJW said:

    llona
    No I didn't gain weight...I really need to.....sleep was a problem....as I stated before, brain rads for me caused overwhelming fatigue...nothing like my previous rads or even chemo fatigue....slowly my energy is returning but dealing with chemo again....plus I lost my hair again from the rads...

    Keep us posted,
    Hugs, Nancy

    Thinking of both of you
    Thinking of both of you Nancy and llona and praying for you two!


    Hugs, Megan
  • Pam5
    Pam5 Member Posts: 232
    #40
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    Megan M said:

    Thinking of both of you
    Thinking of both of you Nancy and llona and praying for you two!


    Hugs, Megan

    Sorry
    So sorry you have to do this again. I'll keep you in my prayers, llona.

    Hugs
    Pam
  • Ballerina
    Ballerina Member Posts: 152
    #41
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    I'm am very sorry you have to go through this
    I am very sorry you have to go through this. I pray you have success with your treatments and that you feel less fearful with the prayers of your pink sisters.


    Ballerina

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