Can we start a HER2 roll call?

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  • NanaA
    NanaA Member Posts: 293
    edited April 2009

    ladies - it is great to hear all your stories.  I am at the midway point of my taxol x 12. and herceptin every 3 weeks.  this tuesday will be #6,  I will be doing rads and continuing the herceptin for a year and then Femara.  It is good to hear all of you celebrating the end of your treatments.  My husband and I are talking about a cruise when most of this is over.  I may still be doing the herceptin then.  It will be nice to get away somewhere where you can think about other things.Right now treatments and getting thru them dominate almost everything.  I have continued to work part time.  Not much energy left for anything else.  Best wishes to all you Her2+ ladies.  Annette 

  • janie44
    janie44 Member Posts: 1,460
    edited April 2009

    Hey ladies,

    I recently had my 5th year cancerversary and am still NED ! Smile

    Hugs,  Janie

  • HensonChi
    HensonChi Member Posts: 357
    edited April 2009

    Congrats Janie!  That is awesome.

  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited April 2009

    I am IIa, estrogen +, HER2, diagnosed in March, had lumpectomy and port installed. Just had my first treatment last week. TCH x 6 and then H alone for the rest of a year.

    You ladies that have finished treatment - CONGRULATIONS. And to be NED is the best of all.

    One day I will be writing that same post here, as will the others of us still in treatment.

  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited April 2009

    I finished chemo in september, started Herceptin in December, will be one year next month that I was diagnosed.  Lots of aches and pains, but otherwise living life again :)

    Laura

  • anji111
    anji111 Member Posts: 65
    edited April 2009

    Hi everyone, anyone,

    I don't know if this is the right place for this.  I am ER+PR+ and Her-2+++.  I had a mastectomy on March 18th or 23rd (can't remember right now?).  I am getting really concerned and worried after reading here for a while.  So many of you have started treatments already and seemingly very fast after diagnosis.  I do not even see the Doctor at the Cancer centre until May 6th. 

    The reason I am so worried is because it's been 5 months since I first found the lump.  I had a biopsy in Feb, Mast in March, Chest x-ray, abdominal ultrasound, and bone scan this month (don't know the results yet).  From everything I have read this is quite an aggressive cancer so why am I having to wait so long for everything.  The last time I saw the BS he told me that they like to wait six weeks after surgery before starting treatment.  He also said that I would not be considered urgent?!?!!!  That comment has bothered me quite a bit.

     Another reason I am so concerned is my sister had cancer.  Not breast, they finally labelled it CUP.  She hadn't been well and had seen a lot of doctors.  She had an x-ray in April 2000 and a spot showed up on it.  They did nothing...  After she had been sick all summer, she finally had to see the doctor in Sept (only six months later) by which time the cancer was everywhere.  Ten months later she was gone.  I am not trying to scare anybody here.  But I am scared myself after seeing what my sister went through.

    I am going to call the dr on Monday and speak with the doctor's office assistant.  She is sooo nice!  She even offered to come to my appt with me if I couldn't find anyone.  Maybe she can explain it to me.

    My path report also said I have extensive lymphovascular invasion.  So that is scary too!  I feel like I've got something inside me, that's growing, and I want it gone - NOW.  It is almost at the 5 month mark and I'm starting to panic.

    I guess I haven't had 'nothing' done.  I did have the mastectomy and the doctor said he got everything.  Except, there was mention on the report something about 1-3 nodes.  One for sure that metasticized sp? 

    Has anyone else had to wait this long for treatment?  I try not to think about it but today I am really bothered by the waiting.  I am kind of jealous that you all have started or finished.  (Crazy I know).   Thanks for listening.  Anji

  • Sassa
    Sassa Member Posts: 1,588
    edited April 2009

    Anji,

     When I first saw my oncologist, she said chemo would start 6 weeks after my mastectomy to allow for healing.  However, when I saw her three weeks after my mastectomy, she said I had healed so quickly that she started me on chemo that same week.

    So the 6 week wait is not an unusual occurrence.

  • HensonChi
    HensonChi Member Posts: 357
    edited April 2009

    Anjii,

    My cancer in the lymph node was found first.  So my first surgery was in January.  They found the actual breast cancer in April...so my second surgery was May 22.  I did not start on chemo until July 2 of last year.  So I waited quite a long time to start.  My onc said that the best assurance for me was that even though it is agressive cancer she hoped the surgeon had gotten it all, and had clear margins!  So I had quite a long period of time to wait from January til July.  I hope my Onc was right! 

  • anji111
    anji111 Member Posts: 65
    edited April 2009
    Hi mmm5, I hope you have had some good news!  I just read your post again and realized I am not on Herceptin (yet).  So I have probably put my post in the wrong place Foot in mouth.  I do want to thank Sassa and Bot_Chi (hope your Onc was right too!) for responding though.  You made me feel a lot better.  I hope you are both doing well.  I just want to say that I got a call from the dr's office today and she told me that my tests were good.  What a relief!  I'm going to see my GP tomorrow for something to help me with my anxiety.  I am closer to the edge than I thought!  I was pacing around like a crazy woman yesterday, not able to concentrate on anything.  I hope one day to be able to post on here that I have been NED for years, and years and years........I wish the same for all of you!  Thanks, Anji Smile
  • MHF
    MHF Member Posts: 3
    edited April 2009

    Hi , I finished Herceptin 2 1/2 years ago. I also had ACT and radiation .    I was first put on Arimidex, but was in so much joint pain and unable to function that they switched me to Femara..significant reduction in pain , but lots of hot flashes and very thinning hair which I can deal with ...just got my hair real short and wear big earrings.  I would encourage to work with your doctor on an alternative to the Femara if still causing alot of pain , sometimes it is as simple as the binders they use in the medication that can set your body off

  • saleboat
    saleboat Member Posts: 71
    edited May 2009

    Hi!

     I just passed the four year mark since I was diagnosed.  I had 15 positive nodes and I'm still here!!!  I had triple positive, and did dose dense a/c followed by taxol and herceptin.  My best to all of you. 

  • DFW
    DFW Member Posts: 120
    edited May 2009

    I am her2+, had bilateral mast with reconstruction. Tumor was 3.6 cm with 8 positive nodes. I did 4 round of A/C 12 Taxol along with Herceptin. Herceptin continued weekly until I had 52 weeks of it. I have had no recurrences and August will be 5 years.

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

    saleboat and DFW: Thanks for such encouraging posts! 4 and 5 years out is great news.

    Anji - So glad to hear your tests are all clear. Best wishes to you as you begin treatment!

  • twinsmom0606
    twinsmom0606 Member Posts: 11
    edited May 2009

    I was diagnosed with ER+/PR+ Her2-neu + Stage 2 IDC 2+ nodes in February, 2007.  After doing dose dense ACT, 12 weeks of taxotere and 1 year of Herceptin, I feel terriffic with ned.

    Diane 

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

    Hi Everyone

    Just want to keep this post going, I went through 4 MRI's and no Cancer yeah!!! However I went off Arimidex and after 4 weeks off I all of a sudden had no back pain, poof it was gone. Now I have been on Femara for 5 weeks and poof it is back with a vengence. One thing I wanted to ask all of you on this thread is what are the triple positives doing for Hormone therapy? BOth my Onc's don't like Tamox for Her 2 and started me on AI's but now think I am coming out of chemo induced Menopause, Scares me as don't want the estrogen in my  body even for a day.

    I also wanted to pass on some good news, I met with my Onc on Weds and I asked him how many early stage Her 2 gals had recurred since 2004 when they started using Herceptin adjuvently and he said NOT ONE, and understand that this is the busiest ONC in Arizona.

    Of course he does not know what long term looks like but my other ONC in Tucson states that he expects these results to hold up for 5 years, 10 years and beyond.

    I will post more about this next week after my last Herceptin treatment. OH HAPPY DAY

  • HensonChi
    HensonChi Member Posts: 357
    edited May 2009

    I am on Femara...started in February.  I had a lot of back pain but it is now subsiding!

  • Gina_M
    Gina_M Member Posts: 294
    edited May 2009

    Hi All,

    I have 4 more Herceptin treatments, finishing up on July 20th.  I had a lumpectomy, TCH and radiation.  I am going for an ultrasound on Monday, as my affected breast is getting quite tender; I also have a repeat MRI in July.  (The MRI indicated only "expected" post-operative changes in the affected breast, but maybe a cyst in the "normal" breast that they want to follow up on.  The first MRI was done at the end of February.)  I HATE getting this nervous for tests and having dark thoughts about recurrence keeping me on edge.  Every little change in my body sends my mind off into scarey places!  Anyone else feeling like this?  Anyone notice any changes in the nipple of the breast that had a lumpectomy?  Mine seems flatter on that breast, so...of course, I worry! 

     It's good to hear from those of you a bit further out in time and to hear how well you're all doing.  I hope to be there myself in a year or two!  I was ER/PR negative, so after Herceptin, they'll be no more treatments.  My onc says that even though I don't seem to feel more tired on Herceptin, I may notice a real energy surge once I'm off.  Has that happened to those of you off?  Also - are your nails improving?

    Thanks,

    Gina

  • Sassa
    Sassa Member Posts: 1,588
    edited May 2009

    Gina,

    I definitely felt an energy surge.  I finished my herceptin in the middle of February 2008; by mid April I felt like I was the energizer bunny.

    It took about 6 months to a year for my nails (fingers and toes) to go back to normal  Remember, it will take about 3 months for the herceptin to clear your body and then any nails affected by the herceptin will have to grow out.

    My hair and nail growth rate  increased once the herceptin was out of my system.

  • mlkelly58
    mlkelly58 Member Posts: 24
    edited May 2009

    Next month will be my 2 year cancerversary.  I finished Herceptin last August.  My first post-treatment MRI was a few weeks ago and was negative!  Re: hormone therapy, I was pre-menopausal prior to starting chemo, and because they don't know if I am in chemo-pause or menopause, I am on Tamoxifen.  Waiting for blood test results to show I am definitively in menopause before they switch me.

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

    I am going to bump this again and ask if there are any early stage Her2 gals that got a year of Herceptin and have had recurrances? Both my Onc's say none that they have and really wondered if any of you have heard of anybody. It seems if the BC (her2) is caught early enough extremly low chance of recurrance>

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited June 2009

    Hi, I recognize some folks here, nice to see you all! I'm doing fine, enjoying a spectacular week of sunshine and cool breezes and salmon and Alaskan Amber....!

    AlaskaAngel

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

    Alaska Angel

    Always so good when you drop by to say hi, you shoud write your "memoirs" for us since you are a perfect example of good results even without Herceptin. I really think you have the right idea with the healthy lifestyle. Keep in  touch with us newbies.

    And,.....any other tips you can share with us would be much appreciated..

    Michelle

  • reader218
    reader218 Member Posts: 19
    edited June 2009

    Still NED.  Diagnosed in '06, completed 1 year weekly Herceptin in '07.  On Arimidex for 2 1/2 years now. 

    I have episodes of pain but it never stays in the same place long.  A few days or a few weeks but  just when I think "I better see the Dr. about this"; it's gone.

  • pinkmama
    pinkmama Member Posts: 47
    edited June 2009

    Hello

    I am triple +  I start my chemo tomorrow,   Taxotere carboplatin and Herceptin is what is in store for me.

     Just want to take part in the roll call.

    Jamie

  • Gina_M
    Gina_M Member Posts: 294
    edited June 2009

    Hi all,

    After my Herceptin treatment this Friday (the 12th), I'll only have 2 more.  My tumour was ER/PR negative, so that will be it for treatment for me.  My onc. keeps trying to warn me that I may feel more nervous or "abandonned" once treatment is over, but honestly, I think (and hope) I'll feel more relief than anything else!  I'm looking forward to seeing an energy surge, nails getting stronger and aches and pains disappearing.  So a couple of questions for those of you who have been down this road:

    1. Were you more anxious and feeling abandonned once treatment was over?

    2. When and what changes did you experience once Herceptin was finished?

    3. My hair is coming in very curly and thicker (normally VERY straight and fine).  If you have had changes to hair growth, what were they and how long did they last (or were they permanent)?

    4. How and at what frequency are you being followed up?

    5. Who is following you (oncologist, family doc, etc.)?

    I look forward to your responses and wish all of you well on our shared journey!!

    Thanks

    Gina

  • oldstudent
    oldstudent Member Posts: 61
    edited June 2009

    Hi, Gina. I was diagnosed May 18 with invasive ductal carcinoma, lymph nodes clear, ER/PR negative HER2+++. Stage ! but don't know the grade. I'm still at the poking and prodding stage--awaiting bilateral MRI and maybe bone scan since I've got pain in right hip and haven't had ANY chemo yet. Had lumpectomy and prob. will start chemo around end of June. Expecting "TCH" taxotere, cytoxin and herceptin plus radiation, but since I'm a "newbie" I don't know much in terms of detail. I'm grateful it was caught fairly early, obviously scared, but starting out with PMA (positive mental attitude). Thanks to all of you who continue to post after finishing treatment to let us newbies know there is light at the end of the tunnel. My prayers and wishes go out to all those engaged in this struggle. Deb

  • Chelee
    Chelee Member Posts: 513
    edited June 2009

    You can read my signature for DX.  I've had a bi-lat mastectomy and ooph.  I was treated with 6 cycles of TCH & completed my yr of herceptin and so far I'm still NED.  (Knock on wood)  So counting from my surgery date I'm 3 yrs and 5 months out.

     Chele

  • Brenda_R
    Brenda_R Member Posts: 509
    edited June 2009

    I'm 2 and 1/2 years out. One year out from the end of Herceptin.

    1. Were you more anxious and feeling abandonned once treatment was over?

    Yes

    2. When and what changes did you experience once Herceptin was finished?

     I also had lots of hip pain during H and it has pretty much gone away.

    3. My hair is coming in very curly and thicker (normally VERY straight and fine).  If you have had changes to hair growth, what were they and how long did they last (or were they permanent)?

    My hair grew slower. It grew fast during H.

    4. How and at what frequency are you being followed up?

     At first 3 months, every 6 months, so far.

    5. Who is following you (oncologist, family doc, etc.)?

    Onc

  • Gina_M
    Gina_M Member Posts: 294
    edited June 2009

    Hey Deb,

    How are things going?  Have you started chemo yet?

    Gina_M

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

    Hi Gina

    I was not as anxious when I finished Herceptin, I got the port out the next day and said SAYONARA to Dr's office for the last 6 weeks. I still get very anxious, just had a nasty cold and was scared for so many reasons (maybe lung mets, maybe no immune system, maybe maybe whatever) I stuck it out for 2 weeks and it is almost gone in 3rd week.

    My Onc still follows me every 3 months, and I have noticed more energy coming back after Herceptin. Lots of scary questions in my mind still but I try to breathe and let go and have faith that I am where I need to be in this moment.

    Exercise works wonders!!!! (seriously I have been trying to go twice a day and it has helped clear up sleep problems, AI induced pain and just general frame of mind) It is now my addiction.

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