2009 Herceptin group

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  • Estepp
    Estepp Member Posts: 6,416
    edited July 2009

    MMM5 ( sorry, do not know your name)... how are you feeling now? Ihope a little better.. (((HUGS)))

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  • mmm5
    mmm5 Member Posts: 1,470
    edited July 2009

    Estepp

    Better, so many wonderful responses it just makes me feel a little braver if only for a bit.

    I hate all this fear but you all sure make it easier!

    Thanks for checking on me

    Michelle!

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  • suemed8749
    suemed8749 Member Posts: 1,151
    edited July 2009

    (((((((Michelle))))))) - I read your other post - we're quite a pair - I'm too scared to call and get my PET/CT results and you're living in fear because of a cough. That's what this disease does to us - takes competent, reasonable women and makes us CRAZY!

    I know that your cough is just hanging on from your earlier respiratory problems, but I completely understand your fears. Have you been tested for Valley Fever? Years ago I had scarey spots on my lungs, and when they tested me for VF, the injection site instantly puffed up. I didn't even know I'd had it. Anyway, I'm sure it's something easily explained that will go away.

    Hi to everybody on the bus! I've been having a great summer - had a wonderful weekend with my husband and two of my kids - went to Disneyland (that's what my 22-yr-old wanted to do for her birthday on Friday) and then LaJolla. Tomorrow I'm going to visit my family in Illinois - good to get out of the 116 degree heat forecast for this weekend!

    Best, best wishes to everybody undergoing treatment. I have not seen a medical professional since June 2 and my next appointment is in August!!!!!

    Sue

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  • mmm5
    mmm5 Member Posts: 1,470
    edited July 2009

    Right back at you ((((SUE)))) I think of you so often, know your PET was fine you would have heard by now. But know why you don't call, I did the same in Feb just let it sit for a month (wow what a scaredy cat I am)

    So glad you had a great summer, be well and enjoy  your trip!

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  • mamakaren
    mamakaren Member Posts: 225
    edited July 2009

    I have a doc appt tomorrow and we are gonna talk about getting my ovaries taken out or just my uterus. I'm confussed and don't know what to to think! My OBGYN says that i'm to young still to have that done then again my onc says that it wouldn't be a bad idea to take out the ovaries and i'm only Her2 also. MMM5 do you live in Tucson?

    I thought that I was done but I guess not. I had already got used to the Hotflashes and moodswings but now this PERIOD crap is back and it's even worse! Just can't handle the anxiety just when I thought the anxiety couldn't get any worse it just creeps up!

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  • helena67
    helena67 Member Posts: 357
    edited July 2009

    Taking out your ovaries is a much smaller surgical procedure. You could consider leaving your uterus in place unless there is another reason to remove it. Because that is a much bigger surgery. But I don't understand why your onc would recommend removing your ovaries if you are ER/PR negative? You may want to double (triple!) check before you make any decisions. Make sure you get good information....

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  • mmm5
    mmm5 Member Posts: 1,470
    edited July 2009

    Karen

    I am in Scottsdale but get part of my treatment at University Med Center, in Tucson once a month

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  • mamakaren
    mamakaren Member Posts: 225
    edited July 2009

    Helena67 you have a good point. Alot of times we think that the docs know it all but sometimes they make mistakes. thanks for the advise.

    mmm5 call me when you are in tucson i would love to get together.

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  • joan11847
    joan11847 Member Posts: 13
    edited July 2009

    Hi everyone

    mmm5 - thank you for the info on the new thinking about treatments.  I spoke to my onc on Friday (2nd tx) and he said if all goes well with me, he would be ok with the 4 tx of TC and continue with the herceptin for the remainder of the year. (YEA) This was based on my diagnosis of stage 1, no nodes and ER/PR neg. which made my ocotype score low.

    cheers247 - I'm red faced again and the onc nurses said it is the herceptin in fair skinned ladies.

    MrsRockytop55 - thanks for the emend tip.  So far no nausea (second day after tx).  

    flower - why do you take steriods?  I get benadryl before herceptin.

    NanaA - I'm glad to here you only had the equivalent of 4 tx (taxol 12 tx).  My onc said that I might be able to do that too.  

    Thanks to all of you ladies who have made my treatments so much more bearable and the information to have when going into the onc has been very beneficial.  He wants to know which web site I' using (ha).  I have lost all my hair though and I've purchased a wig.  But people have said it looks good.  I never really thought it would be necessary to have a wig (just hats), but when you are redheaded with freckles, curly hair, and seasoned (old) it really does help to continue the same look.  So red wig for me.  Talk to you guys soon again.

    Joan 

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  • oldstudent
    oldstudent Member Posts: 61
    edited July 2009

    Hi, all. Haven't had my herceptin yet, starting with A/C first. I am fair skinned and get all red from the A/C! I thought it was sunburn! I'm staying indoors today because it is HOT HOT HOT.

    First A/C went really well. Talked to Genentech yesterday to sign up for their Herceptin support program. I got info at onco office.

    I can relate to the fear stuff--some of it is rational but it is the irrational ones that make me mad. I have asthma today--have had it my whole life--but what am I worried about? I'm worried that it is the A/C and not real asthma. I worry about mold. I worry about H1N1. I worry about my kids bringing home germs. Damn I hate this worrying!!!

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  • SusieMTN
    SusieMTN Member Posts: 795
    edited July 2009

    oldstudent  I am one of those that would turn on something that looked like a sunburn but not until the next day.  First my cancer boob would tun red then it would gradually move up my chest, arms and face. 

    I have only one more Herceptin treatment in Aug.  It is hard to imagine that it has been 1 year of Herceptin treatments.   Boy that makes me happy! Laughing  Geez what shall I do with the extra time!

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  • mamakaren
    mamakaren Member Posts: 225
    edited July 2009

    Oldstudent~ I'm a worry freak! I just wish that for one day I could stop worrying about all this. what is Herceptin support program about? Never heard of that before.

    susieMTN~ Lucky you girl! Congrats on the one more Herceptin. I have been having a rough time with Herceptin my EF keeps going down and they have to keep stopping the Herceptin. So basicly I have one more chance and if it goes down one more time I'm done with it. I can't take it anymore they say. I have only done about 25 treatments and need 52 or so.

    Hope everyone has a great night.

    Karen

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  • Estepp
    Estepp Member Posts: 6,416
    edited July 2009

    Hi ladies..

    I had treatment today... only 4 more to go for me! I am happy about that, but like you, fearful of that...

    At least while we are in treatment.. we feel a little safe huh? After treatment.. eeeeeekkkkkkkk... it will be scary.BUT........ we can do it girls!!!!!!!!!! YES WE CAN!

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  • mamakaren
    mamakaren Member Posts: 225
    edited July 2009

    Estepp~ Way to go! So glad your almost done. Yes we can do this! Thanks for the encouragement

    Got to get some blood work done today then tomorrow a doc appt. I can't take all the anxiety of all these doc appts. It's just regular visits but can't help to feel nervous. Yesterday I went to see my primary doc and she gave me some anxiety med I haven't even went to get them at the drug store. Don't know why! I guess I just feel scared even though I know that it will help me.

    Hope everyone has a blessed day!

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  • traceyz
    traceyz Member Posts: 745
    edited July 2009

    HEY LADIES,

    I HAVENT POSTED HERE IN QUITE SOME TIME BUT WANTED TO SAY HELLO. I FINISHED HERCEPTIN ON 6/8 WOOOOOO HOOOOOOO!! I AM HAPPY TO SAY THOSE HERCEPTIN HEADACHES ARE PRETTY MUCH GONE! YAY!

    ANYHOW, I DONT KNOW IF YOU LADIES KNEW THIS BUT WE ARE HAVING A TA TAS SISTERHOOD REUNION IN VEGAS 9/25-28TH AT THE MIRAGE. ITS GONNA BE A BLAST AND EVERYONE IS INVITED. WE DESERVE TO CELEBRATE OUR SISTERHOOD AND THE STRENGTH WE HAVE GAINED THROUGH THIS JOURNEY. ALL THE INFO IS AVAILABLE ON THE FIRST PAGE OF THE TA TAS SISTERHOOD REUNION IN VEGAS THREAD. THE DEADLINE IS AUGUST 10TH TO BOOK YOUR ROOM. ITS $162.40 TO BOOK AND THAT COVERS THE 1ST NIGHT TAX IS INCLUDED IN THAT FIGURE. THE 2ND NIGHT IS THE SAME AND THE LAST NIGHT AFTER TAXES IS $84. IF YOU HAVE MORE THAN 2 PEOPLE IN YOUR ROOM AT CHECK IN YOU WOULD PAY $30 MORE PER 3RD AND 4TH PERSON PER NIGHT.

    HOPE TO SEE YOU IN VEGAS!Cool

    TRACEY

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  • pmellon
    pmellon Member Posts: 38
    edited July 2009

    Hi Tracey - CONGRATS on finishing herceptin.  What a great feeling that must be!!!  I'm very interested in hearing about your herceptin headaches, as since I have finished weekly herceptin and moved to the herceptin every 3 weeks, I have had "headaches" - but it is more like a dull pain in 2 particular points on only one side of my head most of the time than a real headache.  Were your herceptin headaches like real headaches and were they constant or just so many days after treatments? 

    Have fun in Vegas!

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  • ccbaby
    ccbaby Member Posts: 985
    edited July 2009

    Hi girls. I am new to this thread, and a lot of you here know me from the TCH and the March Warriors thread. I had my first Herceptin only treatment last Monday and I am feeling pretty good. A little dizziness and minor heartburn. NOTHING like when I had chemo. So, 7 down and 10 to go!

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  • Estepp
    Estepp Member Posts: 6,416
    edited July 2009

    Welcome Christy...:)

    Did I ever tell you that you have almost the exact DX as I did....... WOW....actually... the exact same....

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  • mamakaren
    mamakaren Member Posts: 225
    edited July 2009

    ccbaby- WELCOME! Are you doing chemo and Herceptin together? I have to take heartburn med all the time due to the severe heartburn. I had my herceptin today and doc appt so I was very nervous this happends everytime I have a doc appt. Anyways good luck and i'm sure you will be fine.

    Tracy- WOW it's so good to hear from you! Congrats on the Herceptin Graduation!!!! YAY You go girl with your bikini! Hope you have a great time in Vegas it's da shit there. Maybe I will show up there who knows. Take care and God Bless.

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  • ccbaby
    ccbaby Member Posts: 985
    edited July 2009

    Laura...The EXACT same dx?  And we are both hairstylists, weird, huh? You don't have your details posted here, so I didn't realize that ours were the same.

    Karen...yes, I finished chemo on July 6 and I did the Herceptin with it. I never had heartburn before chemo, but after my 2nd treatment, it started to get bad for the first 5 days or so. I took Prilosec which helped a lot. Now with the herceptin only, I only get it slightly and I don't take anything for it. I drink a little bit of baking soda in water and that helps some. It is miserable and I am sorry that you have it so severe.

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  • NanaA
    NanaA Member Posts: 293
    edited July 2009

    Does anyone have anymore info on the trials being done to see if 3 months of herceptin is as good as 12.  I have done 4 months but may have to stop for awhile and wondered if there were any results in yet on this study.  Annette

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  • SusieMTN
    SusieMTN Member Posts: 795
    edited July 2009

    mamakaren  Hope your EF stays good.  Do you take any supplements?  Just read this http://www.theannals.com/cgi/content/abstract/39/9/1522  I started taking Co Q 10 because I was concerned about the effects of all we go thru on our hearts.  Even tho it is "some minor benefits" minor is better than a punch in the eye with a sharp stick! Laughing  Just thought I would mention it.  My Oncologist said I should take Antioxidants when I was done with Chemo and Radiation.  So wanted to pass this on may or may not be for you.....

    traceyz Well Done!  on getting thru Herceptin, a year is a long time and you made it!

    All you girls still in various stages of treatment, Hang Tough YOU WILL GET THRU!  One day, one hour or one minute.

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  • flowerpower
    flowerpower Member Posts: 30
    edited August 2009

    Hello everyone! I would like to jump in & join this thread.  I started TCH on Feb. 4th & had my last tx on July 1st.  Yay!!! so glad to be done with chemo! Laughing It's sooooo nice to be done going to onc every week!  I just started Herceptin every 3 wks through April 2010.  Now just Herceptin & daily rad trips..... #4 done out of 38.......it will be awesome to some day have a full calender of only "FUN" stuff instead of Dr. visits!!!!!

    Have a great day ladies!

    Kristen

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  • RoxanneC
    RoxanneC Member Posts: 110
    edited August 2009

    Hi Ladies. I'm not in the 2009 class...but would like to jump in and say..I finished 1 year of Herceptin on October 10, 2007..and Here I am...A 3 year Survivor!! YAY!

    And since it's summer time..I made a big batch of Chi chi's for all of us on the bus! Enjoy!

    Hugs all around,

    Roxanne

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  • SusieMTN
    SusieMTN Member Posts: 795
    edited August 2009
    RoxanneC  Are the ChiChi's really cold, as in frosty cold?  Noticed your sig. line said 'switching to arimidex".  What were you on before and why did you switch.  Reason I am asking is I was on Arimidex 1 month and switched to Aromasin due to pain and stiffness, but now with the Aromisin the joint and muscle pain is unbearable!  So this is not a good thing! 
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  • SusieMTN
    SusieMTN Member Posts: 795
    edited August 2009
    Today is my last Herceptin Treatment, this completes my YEAR!  I have waited so long to get here, been thru Chemo, Surgery and Radiation.  Now wondering if I will worry about no longer being on treatment????  One thing I know I will do though, CELEBRATE each day!  Love it, all the good and all the not so good, IT'S LIFE!  So here is to CELEBRATING LIFE!!!!!!   Laughing
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  • Estepp
    Estepp Member Posts: 6,416
    edited August 2009

    Thank you Roxanne!

    Susie........... CONGRATS! Go live your life and forget cancer.. you kicked its butt... BAM!

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  • nixieschaos
    nixieschaos Member Posts: 130
    edited August 2009

    What is an Ejection Fraction?????????????????????????????????????????????????

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  • nixieschaos
    nixieschaos Member Posts: 130
    edited August 2009

    oh...Just searched it...GEEEEZ. They just tell me my heart is great and that's that! But what the heck. It's only my $%&&^' HEART! Why do I have to know this stuff Anyway. How frustrating.

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  • ccbaby
    ccbaby Member Posts: 985
    edited August 2009

    What does everyone here have for Pre-meds before your herceptin only treatment? My last treatment, I had benadryl and a pepcid drip. The benadryl makes me so sleepy and out of it. I am going to ask the onc when I go in tomorrow if they can lower the dose of benadryl  or just not have it at all. When I had chemo along with the herceptin, I was allergic to the taxotere, and that is why I had to have benadryl. A double dose too. But i feel that now I don't need it.

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