I am Stage 1 but the Grade 3 continues to make me nervous

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  • Meece
    Meece Member Posts: 19,483
    edited January 2010

    They never told me any way to get rid of the bone pain.  It was excruciating for three to four days.  Nothing made it subside, not pain relievers, not hot baths, nothing.  I was actually in tears on my last two chemos begging them for an alternative.  I was told that I could skip it, but it was against their advice.  So I took it.  And I endured the pain.

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  • sheila888
    sheila888 Member Posts: 25,634
    edited January 2010

    Doctor or anyone else mentioned about Neulasta SE pain. For 3 days specially when I was in bed couldn't sleep. When I mentioned it to my oncologist that something was wrong, then he tells me I should taken some Advil. I love My DR but sometimes they forget to mention things.

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  • Meece
    Meece Member Posts: 19,483
    edited January 2010

    The only SE I was told about would be itching at injection site.  Yep, had that too!

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  • KAJDerby
    KAJDerby Member Posts: 310
    edited January 2010

    So glad for this section.  Reading all of this gives me hope.  I had lymph vessel involvement, high grade, and my Ki-67 protein was high.

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  • terrirites
    terrirites Member Posts: 16
    edited January 2010

    Hi Nicole,

     I have good news for you.  You are still very new to breast cancer.  I'm not that far ahead of you, but I can tell you one thing... when you are in the thick of it, it's all you think about.  After tx, you think constantly about recurrence... then slowly life starts to get back to normal and think about it less and less.  Of course when testing time comes up, or you get a funny symptom, the fear rolls back in.  I just know that BC was on my mind all the time in the beginning.  Now, it's an annoying little pest in my mind that pops in from time to time.  :-)  You will be amazed in a year how little you think of it.  Honestly.  Hope this helps.  :-)

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  • mmm5
    mmm5 Member Posts: 1,470
    edited January 2010

    Hi ladies

    Thanks for helping me out after 3 long days I found the bone scan to be negative ..I a relieved and mentally spent after all the anxiety.

    Terrirites- I am encourged to hear you say it gets better!! You are a bout a year ahead of Nicole and I and wonder if you worry less about aches and pains etc? Have you had to have any scans and how did you deal with that?

    Also you are one of the few triple positives I have seen and wondered what you do for hormone therapy..also were you high or low estrogen positive?

    Thanks for sharing your journey after 3 years.

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  • Meece
    Meece Member Posts: 19,483
    edited January 2010

    I do absolutely nothing for hormone therapy.  I have been cautioned to stay away from them.

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  • mmm5
    mmm5 Member Posts: 1,470
    edited January 2010

    thats what i meant by hormone therapy ..what you do to inhibit hormones if you are triple positive.

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  • Nicole112
    Nicole112 Member Posts: 327
    edited January 2010

    WOO HOO, so good to hear Mich that everything is negative!! How exciting! WE can move on, now... after I stop with the side effects from Zometa... my bones ACHE!!! I was up all last night... so day 1 is easy, day 2 is blah, day 3 is getting better... oohhh how grateful I am I only need to get these treatments once every 6 months.

    I have a bit of a downer, we lost another young mom to cancer Monday... :( She was such a great resource for me while I was going through everything, her website is www.veronicahansen.com.We have a very special angel among us, I am just so sad for the three boys and wonderful husband she leaves behind! (She fought colon cancer!)

    Veronica- Rest in peace my beautiful angel!

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  • bre
    bre Member Posts: 89
    edited January 2010

    Hi Nicole,  I have been in your shoes.  The grade 3 made me very nervous also along with the her2+++.   I was diagnosed at 49 so considered young and was sure I'd never see my youngest graduate, etc.  I will be 6 years out from diagnosis in 2 days and am doing very well.  No sign of recurrence, work full-time and do whatever I want.  I had a mastectomy, chemo, tamoxifen, arimidex, hysterectomy and ovaries out.  Onc says I will be on arimidex indefinitely.  Oh well, as long as it's working, I can put up with the side effects.  Still do onc visits every 6 months so he can watch me closely.  I have gotten used to that.  I just have blood work done every  6 months and only get other tests if there is a concern.  I sincerely hope that you will do as well as I have been doing.

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  • Nicole112
    Nicole112 Member Posts: 327
    edited January 2010

    Terrirites and bre-

    Thank you for your posts, it encourages those of us who are out of the majority of treatments but not so much time behind our belts! I look forward to a wonderful 2010!

    For 2010, I have an overwhelming desire to give back to others in our community going through treatments, etc... in my spare time... perhaps making meals, arranging errands, etc... having two young ones myself  I know how valuable those little extras people did for me along the way meant so much to my family and I am all about paying it forward!

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  • mmm5
    mmm5 Member Posts: 1,470
    edited January 2010

    Nicole

    What part of the country are you in??

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  • sheila888
    sheila888 Member Posts: 25,634
    edited January 2010

    Nicole...Im really sorry about your friend.

    Sheila

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  • KAJDerby
    KAJDerby Member Posts: 310
    edited January 2010

    Bre - thank you so much for your reply!  It was really a blessing to me!  I have similar numbers to you and I am 49!

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  • Meece
    Meece Member Posts: 19,483
    edited January 2010

    Nicole, I am sorry to hear about your friend.  How is your friend Beth?  You know, since I joined BC.org, my prayers have become longer and longer. 

    Sheila, is there a specific risk to being triple positive as there is being TN?

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  • sheila888
    sheila888 Member Posts: 25,634
    edited January 2010

    Meece...All I know is TP you get Herceptin And Hormonal Therapy.

    TN you dont need any of those.

    As a risk factor I really dont know.

    Sheila

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  • frosty1
    frosty1 Member Posts: 420
    edited January 2010

    I can't say enough about how much I appreciate everyone who has done this already posting their experiences.  After getting an initial DX of DCIS, Grade 3, Stage 0, 6cm and 1.5cm, after my mastectomy on Monday, my path report says Stage 2 (one at 1.5 and one at 2), 0/2 nodes negative, and ER+/PR+/HER+, I am confused, angry, hurt.  Hearing your reports will help me when I meet with the onc on the 27th.  I liked the old DX better!

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  • mmm5
    mmm5 Member Posts: 1,470
    edited January 2010

    Frosty you have almost exact dx as I, and I also had initial dx of just DCIS. I was very upset to find that it changed, but you will find that this dx is very hopeful as well. You will go through a lot with chemo and a year of Herceptin all things that made me so upset in the beginning but now we are finding that a triple positive dx is a very promising dx. You will make t through all of this. Make sure to get a copy of your path report. We will help you the whole way.

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  • Nicole112
    Nicole112 Member Posts: 327
    edited January 2010

    Hi ladies,

    Frosty- Sorry to hear you are starting this rollercoaster ride and confused! It is so OVERWHELMING at the beginning, so many new terms, so many questions, so many fears. I have learned more about my BC from woman on these boards than I had through my onc... perhaps he shared the info with me at the beginning but I wasn't processing all of it, all I remember was the day he told me this is "aggressive" and you will need "chemo"... everything else was foreign language.

    After the initial shock, I recall going into "survival mode" and doing EVERYTHING the onc told me to do... I remember my chemo started in July and that it would end in Oct followed by RADS and I remember thinking HALLOWEEN would never come as this was the closest holiday to the treatments being over.. then, as they say, "This time too shall pass" and the chaos involved with it! Treatments were manageable and LIFE does go on.

    What many woman at my stage of this rollercoaster are doing is "maintenance" to prevent reccurrence and the majority of us are doing well :) Other than over analyzing every ACHE AND PAIN like you never have and your mind can run away with "thoughts" and you will forever be a different person... most of it for the better as in taking time to smell the roses, not sweating the small stuff, etc... you become in tuned with your own mortality, too! So I have rambled a bit, once again, but just thought I would share!

    AS far as staging, risk, I think no matter what stage we are diagnosed, our human nature tends to fret on the "percentage of unlikely recurrence" instead of the fact that most stages end with great PROGNOSIS and MANY, MANY, more years of life!

    Meece and Sheila- I have been so devastated by our local friend who has lost her battle with colon cancer, it is just so overwhelming. She was diagnosed 4 yrs ago at stage 4, we all new she had a hard fight, it never makes it easier when someone passes. I will be going to her service next weekend, she leaves behind three little boys and the most supportive husband a girl could as for!

    As for Beth, she is doing well, her surgery went well and there is real hope. Her tumor shrunk and she is in good spirits, she has not shared her final path report so I am hoping for the best.

    Ladies- Have a wonderful weekend! Sorry for the long post, I guess I had a few things to say:)

    Oh, and to Meece, I know it is hard with the TN diagnosis and feeling like "what more can I do" but you are still in the "early stage club" so I am confident you have thrown everything and the kitchen sink at the beast and you are in your "maintenance" mode by doing your checkups.

    Cheers!

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  • Meece
    Meece Member Posts: 19,483
    edited January 2010

    Nicole, thank you for the encouragement.  I am so sorry for the loss of your friend.  It is so hard to see the effects of this monster on families, in particular, young families.  Glad to hear positive things for Beth. 

    Have a great weekend!  we are heading out to the Central Coast for some wine tasting here in a few minutes.  Wish you were here!

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  • Nicole112
    Nicole112 Member Posts: 327
    edited January 2010

    Sounds like a perfect day, Meece! We are going to open houses, we decided, we are going to put the house on the market and go shopping for a new one! So exciting and overwhelming, but all very good news!

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  • frosty1
    frosty1 Member Posts: 420
    edited January 2010

    Thanks for all the encouraging words.  It is hard not having all the results and knowing what is next.  I am the kind of person that just wants to know and get started ... I hate the waiting. 

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  • kerkle
    kerkle Member Posts: 147
    edited January 2010

    I am so happy to be reading this site - I had DCIS with microinvasion and I have been so worried based on my Grade 3 status. I figured it only takes one nasty, aggressive cell to get got out. I had a double mastectomy and radiation but no chemo. I am having a hysterectomy in april (I chose this) but my Dr. is insisting on an Estrogen patch as she feels the benefits outweigh the risks, especially since i am only 38. She said a monitered low dose, is better than my current situation. I do not want to take Tamoxifen. What is Lupron? 

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  • Nicole112
    Nicole112 Member Posts: 327
    edited January 2010

    Kerkle,

    Lupron is a drug which "throws you into menopause". I am 37 so the dr's give me a lupron shot every three months to suppress estrogen.

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  • roso88
    roso88 Member Posts: 31
    edited January 2010

    hi ladies.  i'm new to the forum.

    can't tell you how anxious i get about Grade 3 too...my onc didn't help by recommending i get everything but the kitchen sink.

    i'm having my port implanted on Feb 1st and will start chemo on Feb 5th:

    AC (4x dose dense) followed by Taxol (6x), then Radiation (6.5 wks), Herceptin (1 yr) & Tamoxifen (5 yrs straight)

    hoping to get into Dana Farber for a 2nd opinion when my margins are clear.

    sending out positive energy to you all.

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  • mmm5
    mmm5 Member Posts: 1,470
    edited January 2010

    ROSO

    please get a 2nd opinion and ask about TCH which many of us did here. It is much easier on your heart and equally effective, statistically.

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  • roso88
    roso88 Member Posts: 31
    edited January 2010

    hi mmm5. thanks for the tip!

    am i correct in that i should avoid Adriamycin?  is it mainly because of risk of heart damage?  my onc told me that chances of heart damage were slim - only 5%.  please let me know if you have any info showing a bigger risk.  i will most certianly get a 2nd opinion.

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  • sheila888
    sheila888 Member Posts: 25,634
    edited January 2010

    roso....I had 4x A/C. Did you have the muga test yet?

    I had the same treatment except I got 4x Taxol and #1 Herceptin treatment started with #1 Taxol together.

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  • Meece
    Meece Member Posts: 19,483
    edited January 2010

    Nicole your avatar is adorable!  it the picture recent?

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  • Nicole112
    Nicole112 Member Posts: 327
    edited January 2010

    Thanks Meece- It's the last picture I took with my baby before I lost my hair. I had already had my first treatment and it was my kiss from her before my girlfriend shaved the rest off before I los it.

    Did you have a nice time wine tasting today?

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