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ER-, PR-, Her2+ Roll call

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  • nevo84
    nevo84 Member Posts: 55
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    Dear Pecmakabo if I were you I would chose chemo and herceptin.Her2 cancer is an aggressive type and it's better to use everything that exist to fight it. I know chemo doesn't have a nice outlook but it's doable. You can also use survivorwoman's advise and try to contact with other oncologysts. You should know that you are not alone and you have us to share with. Big HUGs to you and wish you all the best.

  • marjie
    marjie Member Posts: 365
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    Pecmakabo - I would try to get another opinion but I agree with everyone: HER2+++ needs aggressive treatment.  If it was me I would take the chemo and rads - that way you know that you have done all you can to fight this cancer.  It's seems very odd that your two medical opinions are so completely opposite each other.
  • yaya42
    yaya42 Member Posts: 1
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    I am in this category- just diagnosed 4/2011;bilateral mx left side, port is in- ready to start chemo 6/2/11.  I've been asked to participate in a clinical trial- I've said yes- its TCH plus the possibility of getting treated with Lapatinib as well.  I am scared but determined to get this done, get this out of me.  The survivors on here are my hope and I thank you all for your support thru reading your postings- its uplifting, especially when I need it most.  I am not alone- I am not alone.

  • Lilah
    Lilah Member Posts: 2,631
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    Hugs Yaya - you most definitely are not alone.

  • Survivorwoman
    Survivorwoman Member Posts: 70
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    Yaya--you are not alone, we are here for you ! Smile

    By the way,  I am in a clinical trial too. I had chemo ( TC) and instead of Herceptin I am currently taking Tykerb (Lapatinib) for a year. Although, Herceptin and Tykerb are not the same, as they work differently on the HER2 cells, however, the the doctors I work with think that Tykerb will eventually replace Herceptin. So that women in the future will be able to take the tablets at home daily and won't have to get the injections every three weeks. Let me know which randomized group you get into. I am very interested. I have not taked to other women who were only taking Tykerb alone after TC.

  • suemed8749
    suemed8749 Member Posts: 210
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    Yaya - That's the beauty of bc.org - you are NOT alone! You can always come here where we "get it."

    The clinical trials for Her2 are so exciting. I read on another thread about a trial where they are using TC + Neratinib as a front-line treatment now. Survivorwoman - You are also in an exciting trial - I've read great things about Tykerb and never did understand why they kept it for metastatic disease.

    Wishing the very best to all of us - long-time survivors and those just entering tx.

    Sue

  • mikamomof3
    mikamomof3 Member Posts: 11
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    Pecmakabo - I also fall in line with the others on this site; you need more aggressive treatment.  I wish you good luck with everything!

    Yaya - welcome - I also was just diagnosed and start my first chemo tomorrow.  It is EC first for me.  This is a great spot to ask questions and get information.

  • shadow2356
    shadow2356 Member Posts: 93
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    I am also ER/PR-, Her2+. I was diagnosed 8/09. Had BMX, TCH and herceptin for a year.

    You may have trouble finding long term survivors because a lot of people stop coming to these boards after awhile. They move on and live life.

    I am so happy to be finished with treatment. Good luck to everyone starting out. It all looks a lot better from the finish line.

  • ReadingMama
    ReadingMama Member Posts: 338
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    Count me in too.  I finish Rads next week and then it will only be Herceptin treatments until late 2011.  So far have lost weight, not really sure due to what, about 8 lbs.  My MO said any weight lost during chemo would come back, but it hasn't yet.  Haven't changed diet yet as I am easily overwhelmed and couldn't even think about that until after finished chemo, surgery and Rads.

    Glad to see some long-term survivors out there.  Understand there are some herceptin sites out there, but was warned the posts and statistics are misleading since are before Herceptin so I have not sought out any.

  • leftfootforward
    leftfootforward Member Posts: 1,396
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    I finished chemo today.  I proudly wear my " I kicked chemo shirt". One small victory. Next week I move on to the first of many every 3 week herceptin treatments.  I am on to surgery on June 2nd and then on to radiation. I feels good to have completed the first of my major milestones.  I am thankful for Hercepin and how it is helping to save my life.  Thank you all for sharing and letting me know I am not the only one out there.

  • Joan-Marie
    Joan-Marie Member Posts: 1
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    I had my next to last treatment today of Herceptin. I can't wait until next month! I already have my port removal scheduled for next month!!!  Glad to hear there are lomg term survivors and hope that I am one of them. Good luck to all of you just beginning treatment. We are lucky to have Herceptin.

  • yinsan
    yinsan Member Posts: 2
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    Hi, happy to meet you all.  I just started Herceptin and Navelbine today, for Liver Mets.  I was prescribed Herceptin right after chemo/radio in June 2010, but opted out.  Am not regretting it, as i had the best of my life in the past 1 year. Got back to the treatment routine after Ultra sound last Sat, MRI on Tue, CT scan on Thu, spending hours in the hospitals, etc...

  • soccermom
    soccermom Member Posts: 55
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    Hello and congrats to all for being here and being proactive about your health! I am about 7 1/2 years out from DX. I just posted about my journey over on the Her-2 + thread. Hugs and love to all!

  • nevo84
    nevo84 Member Posts: 55
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    Dear soccermom

    You like other long time survivors are a big inspiration for all of us specially the new diagnosed ones. Thank you for coming to this boards and give courage to us. I hope you will celebrate your 50 th cancerversary. Big HUGS to you

  • Pecmakabo
    Pecmakabo Member Posts: 3
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    Thank you so much, dear friends - I started my chemo last week and will start with radiation in June.  I had to decide. The only problem is that in this hospital I will get everything but not Herceptin. The price of the medicine here seems to be my biggest obstacle. My treatment includes 16-17 injections of Herceptin and the total cost is around 36 thousand euros. I am entitled to it thanks to my insurance but the insurance hospital does not agree with doctors who claim that I need it. What I heard is that the health care system here cannot sustain such expenses so they give Herceptin only to those patients whose cancer has already spread. Unfortunately. Nevertheless, I have around 5 months to find a mechanism that will help me beat the system. I am sure I will come up with something. How much does one Herceptin injection cost in the States, does anyone know? To all of you my best wishes and hugs from Serbia!

  • sewingnut
    sewingnut Member Posts: 475
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    My facility bills out $7800 for the Herceptin and the insurance pays $2700.  This is for the weekly dose. I will be interested to see what the higher 3 week dose will run.

  • Lilah
    Lilah Member Posts: 2,631
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    Pecmakabo -- I am so sorry to hear that.  I hope you succeed in your fight to get Herceptin.  Yes it is very expensive here too... but insurance covers it for anyone with HER2+ (I believe).  I find it hard to believe that at Stage IIIa you're not sick enough.  That is just wrong!

  • marjie
    marjie Member Posts: 365
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    The pricing and "rules" on who gets what is so frustrating!!  They develop a break-thru drug that could help millions and then price it out of reach for many.

  • ma111
    ma111 Member Posts: 167
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    Pecmabo

    Chemo 1st with Taxotere/ Carboplatin and Herceptin, surgery than radiation. you have an agressive cancer, besides the er- pr- and HER2+, you have the cytokertin and a few other things. The chemo will shrink some things first and they will be better able to monitor if the chemo stops working. You have the kind that bilds a sesitance to chemo. Once you are in remission get yourselk into a trail for vaccine, while you are still on Herceptin. Your path report and age are very similar to mine.

  • soccermom
    soccermom Member Posts: 55
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    Nevo84- glad I could give you a boost - the first few years were very hard and scary, but one of my mottos is WE CAN DO THIS-- and when we feel like we can't, ya just gotta ride it out-- then fight like hell

    I think it's horrendous that one would have to fight to get Herceptin- or to get it covered by insurance- I had a different fight- that was to get access to it before it was out of clinical trials- fought that battle too-- Dr I did 2nd opinion in LA was connected to the trials and he KNEW it was working and helped me get it- and helped me get it covered by insurance- feel I owe my life to him but I never would have found him if I hadn't researched like crazy and turned over every stone --

  • mesham09
    mesham09 Member Posts: 1
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    my mom has stage 3 invasive lobular ca. ER/PR neg Her2 +. she just finished her 2nd chemo. When does one see some clinical imrpvement in teh tumor?  I am so worried!

  • ma111
    ma111 Member Posts: 167
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    Mine showed after the 2nd round of TCH.

  • nevo84
    nevo84 Member Posts: 55
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    Dear Mesham

    Did your mother have mastectomy or she has neoadjuvant chemo?

  • Slainte
    Slainte Member Posts: 55
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    I have my 9th herceptin today. Herceptin and I have a love - hate relationship due to the severe joint pain I get lol. This is the first time I have dreaded going, last time I was quite sick for a week or so.



    Christine

  • marjie
    marjie Member Posts: 365
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    Good Luck today Christine!!  You sound just like me....I never know what to expect with Herceptin, last time I didn't get any worse with the joint pain but I had teeth pain!!  Just keep reminding yourself....this is the drug that is saving our life.

  • Slainte
    Slainte Member Posts: 55
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    Well, all done #9. We will see how the side effects go this time. Who know maybe this time it will be different...... A girl's gotta dream doesn't she :)



    Christine

  • nevo84
    nevo84 Member Posts: 55
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    I just have a question. Before all this happen my mother always has waist pain and spinal problem. Now the pain come back and it's like a muscle spasm because when we message it the pain gets better. She says the pain is the same way she experienced it before but I'm so worried because as I know in HER-2 positive group the high risk of recurrence is first 2 years. Does anyone have the same experience? Please let me know or it can be from Herceptin?

  • juviben
    juviben Member Posts: 6
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    I'm here.  Was diagnosed 4/11/11.  Just had my lumpectomy on 5/16.  Waiting to hear from the oncologist and radiologist about treatments.  My surgeon said with the HER2 + diagnosis, chemo for at least a year is probable.  I'm scared to death.  Can anyone give me any information and/or encouragement?

  • nevo84
    nevo84 Member Posts: 55
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    Dear Juviben

    I don't know what your doctor meant by saying 1 year. My mom was stage IIIa and she needed 8 sessions of chemo which was doable according to her. 4 rounds of AC and 4 rounds of taxol added Herceptin which will continue till 1year. As you are stage I, I think she/he meant Herceptin for 1 year. Don't be scared at first it was a really big shock to all of us specially my mom but she got over it and I can say she is doing really fine. Be hopeful and count on us we can hear you whenever you want 

  • Lilah
    Lilah Member Posts: 2,631
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    Juviben -- Herceptin is usually given every 3 weeks for a year.  While not technically "chemo" as we usually think of it, that is probably what your doctor meant.  Ask the doctor to clarify.  I had chemo as follows to treat Her2+ BC: AC x 4 dose dense once every two weeks (so 8 weeks of those drugs) then Taxol x 4 dose dense every two weeks (so another 8 weeks of THAT drug) -- additionally, on the day I started Taxol I also started one year of Herceptin every three weeks.  The Herceptin, for me, had very mild side effects (a crusty nose and some creaky joints) all of which went away when I was done.  The AC made my hair fall out but steroids and antinausea drugs (which are given now as a matter of course with chemo) kept me from being nauseous.  The taxol gave me a slight case of neuropathy -- some pain in my feet -- which was most unbearable right at the end and then was completely gone about 8 weeks after I finished the Taxol.  I too was very very scared but really it is all doable.  For me the worst was losing my hair but I got to wear a nice wig and now it has all grown back... so be strong!  The great thing is that all of this stuff should kill your cancer for good.  That's what I focused on and it helped me get through.

    Nevo -- if your mom has pain anywhere that doesn't go away after a few weeks she should definitely and always tell her doctor.  The doctor is the best person to figure out whether it is normal or whether it is something that needs to be explored/tested further.  There is no need to wonder when you have the expertise of your doctor to call upon.