HER2/neu Positive ~ Newbie

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fight2survive
fight2survive Member Posts: 15
edited June 2012 in Breast Cancer #1
I'm a newbie here . . . here is a short intro and a list of dates/events to date

I'm 42 (soon to be 43) and mom to 2 and stepmom to 2 - all under the age of 12. Very active within our community, PTA and Girl Scout Volunteer and I enjoy working out. I have been diagnosed with HER2/neu Positive (ER/PgR negative).

May 7th - went in for annual check-up and lumps were found
May 9th - mammogram and ultrasound - confirmed lumps
May 11th - Biopsy
May 15th - phone call to confirm Breast Cancer
May 16th - got the details - HER2/neu positive -- Grade 3
May 18th - Breast MRI - confirmed only in Right Breast
May 24th - Met with Oncologist - to go over treatment plan
May 25th - PET CT - confirmed only in right breast...did show something on my liver, but he said he wasn't concerned with it
May 27th - Brain MRI - confirmed I have one and it is all clear from any tumors
May 29th - MUGA test - for Herceptin treatment -- heart is strong at this time
May 30th - Started my TCH Cocktail

My treatments are 1x every 3 weeks. My oncologist said I had the record for starting treatment, which was done so we can continue to go on a trip that we've planned for the first week in July. I have done really well with this first treatment . . . so that is good. So far I've not had any hair loss, but I understand that it will come, possibly in the coming week. We made it a family affair for wig shopping. We've kept the kids all informed of what is going on and told them what to expect. However, with them all being so young, I don't think they'll get the full impact until they start to see physical differences in me.

Well, that's my current story.

Are there more current threads with others who are HER2+? I've searched and can only find ones that were started 10 years ago with posts over a year ago.

Not sure how often I will post, I have tried to stay off the internet with this . . . as most articles aren't positive and well, I need to stay positive.

M

Comments

  • maa764
    maa764 Member Posts: 1
    #2
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    Hello,
    My diagnosis is
    Hello,
    My diagnosis is almost exactly same as yours. I am on the borderline for her2+ was a 2.1 but will be receiving herceptin (tch) and will begin on Tuesday. I am so happy to hear that you did well with your first treatment as I am really nervous.

    I had the biospy, lumpectomy, sentinal node biospy all within the last 3 weeks and last Monday had a port put in. The only other test I have had was a mri after the biospy.

    Will you have surgery after chemo?

    I am also scheduled to have radiation after chemo is finished. I am 47 and had stage 2a - the tumor was 2.5 at the biggest section, was contained to the breast only, no node involvement etc.

    Keep up the great attitude. That is what I am trying to do and reach out for support locally as well.
    Michelle
  • fight2survive
    fight2survive Member Posts: 15
    #3
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    maa764 said:

    Hello,
    My diagnosis is
    Hello,
    My diagnosis is almost exactly same as yours. I am on the borderline for her2+ was a 2.1 but will be receiving herceptin (tch) and will begin on Tuesday. I am so happy to hear that you did well with your first treatment as I am really nervous.

    I had the biospy, lumpectomy, sentinal node biospy all within the last 3 weeks and last Monday had a port put in. The only other test I have had was a mri after the biospy.

    Will you have surgery after chemo?

    I am also scheduled to have radiation after chemo is finished. I am 47 and had stage 2a - the tumor was 2.5 at the biggest section, was contained to the breast only, no node involvement etc.

    Keep up the great attitude. That is what I am trying to do and reach out for support locally as well.
    Michelle

    Same name, too!
    Hi Michelle ~

    Same name too!

    Yes, I will have surgery after chemo and then radiation. I will have to continue the Herceptin for a full year.

    I am a Stage 3C and a candidate for a mastectomy. We have sent off for the genetic testing, which will determine if they do a bilateral mastectomy. I'm very nervous about the surgery, but I'll cross that bridge when I get to it.

    I didn't realize until just this week how much cancer is in my father's side of my family --- seems to run rampant! UGH!!

    Thanks for posting! I've searched this board for HER2 positive threads and can't find anything current.

    Michelle
  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
    #4
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    Me too
    Sorry to hear about your diagnosis. You found a great board for support and insight.

    I am a mom to an 11 year old girl and I am married. I was diagnosed with ER, PR, and HER2 positive( Stage 1, Grade 3) across the board back in June 2009. It's been 3 years with NED this month and I am on Tamoxifen.

    I had six rounds of chemo( Taxotere, Carboplatin, Herceptin) and a year of Herceptin. I didn't have any problems with Herceptin. I was followed up by a cardiologist every quarter and had MUGAS. This was my experience, others may have a different story about their experience with Herceptin.

    I wish you the best as you continue forward with your recovery. Keep us posted on how you are doing and have a great time on your vacation!
  • Melaniedoingwell
    Melaniedoingwell Member Posts: 80
    #5
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    chemo info
    There is a website for Herceptin - the good thing about HER2/NEU positive is thee is a medication specifically for it!! IF you do a web search for herceptin you should be able to find the link and they will send you information about Herceptin. I was triple positive and had the TCH chemo. Atfirst I had Herceptin every week and when I finished the cocktail rounds (6)I was switched to Herceptin only every 3 weeks. Just changing to every 3 weeks from a weekly visit to the infusion room was like getting a little vacation! The Herceptin alone never gave me any real issues. I could "taste" medication in my system for a day or sometimes 2 after the H only infusions but that may not happen to you AND it was just "medicineish" so not a big deal.

    Chemo sucks - there's the bad news. You CAN and will get through this - there's the good news!

    Good luck!
  • Kat11
    Kat11 Member Posts: 1,931 Member
    #6
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    Melaniedoingwell said:

    chemo info
    There is a website for Herceptin - the good thing about HER2/NEU positive is thee is a medication specifically for it!! IF you do a web search for herceptin you should be able to find the link and they will send you information about Herceptin. I was triple positive and had the TCH chemo. Atfirst I had Herceptin every week and when I finished the cocktail rounds (6)I was switched to Herceptin only every 3 weeks. Just changing to every 3 weeks from a weekly visit to the infusion room was like getting a little vacation! The Herceptin alone never gave me any real issues. I could "taste" medication in my system for a day or sometimes 2 after the H only infusions but that may not happen to you AND it was just "medicineish" so not a big deal.

    Chemo sucks - there's the bad news. You CAN and will get through this - there's the good news!

    Good luck!

    Hi M
    Welcome, I am her 2 pos . June 3 2009 I had a Lumpectomy. I did 4 rounds of CT 12 rounds of Taxol with herceptin. Herceptin is givin for 1 year. Had no side affects from herceptin. 35 rad treatments. Currently on Tamoxifen.All treatments were doable.
    Did better with hats and scarfs then wigs. Wig is soooo hot, but I did have one. Good web site for hats & Scarfs is www.headcovers.com Also I got alot of hats just at Target, but the headcovers really covers your head. Men's T shirt, tank top style is what I wore under my clothes durning Rads.Can't were anything that rubs and T shirt works out fine. I guess you could were a ladies to I just found that the Mens was cut larger. Good luck, Your with the best of the best here. Hugs
    Kathy
  • Monicalynn
    Monicalynn Member Posts: 61
    #7
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    similar for me
    Hi,
    I am also her2 +, est/prog negative. I had a masectomy late Janurary, healed up and then started treatment in March. I'm going to be getting my fourth round of taxotere, carboplatin and herceptin on June 21rst then will follow that with 13 rounds of herceptin. I am excited for my hair to start growing back. I have been lucky with no nausea. I do get extremely fatigued about 4-5 days after infusion with headaches (but tylenol takes care of that) followed by a couple days of diahrea.

    I have a son who just turned 8 and a daughter who will 7 in August. They are both involved with scouting activities and now in summer sports. I have also kept them updated as to when I cut my hair and then they were home when we clippered it off. They understand that the medicine makes me tired some days and that my hair will grow back once i'm done.

    Make sure to drink lots of water the day before, day of infusion and a few days after. I found the more water I drink the less headaches I get.

    Monica
  • debi.18
    debi.18 Member Posts: 850 Member
    #8
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    Monicalynn said:

    similar for me
    Hi,
    I am also her2 +, est/prog negative. I had a masectomy late Janurary, healed up and then started treatment in March. I'm going to be getting my fourth round of taxotere, carboplatin and herceptin on June 21rst then will follow that with 13 rounds of herceptin. I am excited for my hair to start growing back. I have been lucky with no nausea. I do get extremely fatigued about 4-5 days after infusion with headaches (but tylenol takes care of that) followed by a couple days of diahrea.

    I have a son who just turned 8 and a daughter who will 7 in August. They are both involved with scouting activities and now in summer sports. I have also kept them updated as to when I cut my hair and then they were home when we clippered it off. They understand that the medicine makes me tired some days and that my hair will grow back once i'm done.

    Make sure to drink lots of water the day before, day of infusion and a few days after. I found the more water I drink the less headaches I get.

    Monica

    Me too
    I'm 47, also HER2, ER & PR positive. Had a lumpectomy in July. 2nd surgery to remove additional nodes (2 of 13 positive). Did 12 rounds of Taxol and 35 rads. I'm still on Herceptin - only have 8 left. I have the Herceptin weekly. Tried after the taxol was finished to do it every three weeks but I had side effects - my legs and feet became extremely swollen. Guess 3 doses at at time was just too much for my body.

    I can't say any of this is fun, but it is doable. I managed to work every day during chemo except the day of treatment. Even though I wouldn't wish this experience on anyone, I've met some wonderful friends that I wouldn't have otherwise met.

    Hugs, Debi
  • camul
    camul Member Posts: 2,537
    #9
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    I was borderline her2+. Was
    I was borderline her2+. Was treated for 10 months as Her2- but tumors were still growing. Started with weekly Herceptin in November and no se from that. Muga Scan to start showed a healthy heart and no trouble in 7 1/2 months.

    Usually hair loss starts about day 14 or so. As much as I liked my hair, no hair was also kind of liberating especially in the summer! I am on my 4th chemo different chemo cocktail, and lost it about the same with each one, except when changed to Navelbine, I am now growing hair while on chemo!

    If you do read up on all of this on the inet, remember that it is based on statistics which do not take into account other factors such as: medical history, lifestyle and diet, or other life threatening illnesses that people may have. So just don't take everything to heart. If it gets you down, write down questions and ask your doctors!

    Best of luck to you!

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