blindsided

LT
LT Member Posts: 31
edited March 2014 in Breast Cancer #1
Was diagnosed as DCIS with no lymph node involvement in early August. Had bi-lateral mast.with DIEP free flap reconstruction. Going good until the pathology came back. Stage I, good news, but hormone negative and HER2 positive. Evidently if the HER2 count is 2 or higher, chemo is next. Mine is 7.2.

Last summer Bobby and I went to Alaska and saw a lumberjack show. Anybody seen one of those on TV - where the two guys are standing on logs in the water, trying to keep their balance while the log is rolling? Well, I think that's a perfect analogy for us - just trying to keep our balance while cancer is trying its best to knock us off the log. This path report was like throwing oil on the log, making is almost impossible to stay on. I have the PET scan on Wed. and find myself scared silly just thinking of the results. Every time I have a test, the results throw another kink into the plans. We're both about kinked out.

My chemo cocktail consists of Taxotere, carboplatin and herceptin with a Neulasta chaser every 3 weeks for 6 doses then herceptin alone for the following 7 months. My oncologist said I'd need to stay home the first week every time, but should be able to teach the 2nd and 3rd weeks. I get the port in Friday and start on Monday. Has anyone here had this cocktail? And what about the HER2 number? That's trying really hard to freak me out - especially in those middle of the night wake up calls when sleep seems to have left the building.

I usually just stay in the shadows and read this website but don't post very much - this time I need some help - I just don't have the mental energy to go back and try to find answers in all the older posts. Thanks for "listening". LT

Comments

  • seof
    seof Member Posts: 819 Member
    #2
    sorry
    I have not had that combination of drugs. When you have the energy, you can look on chemocare.com for the effects of each individual one. Sorry you are having to go through all of this.

    Take care, seof
  • Marcia527
    Marcia527 Member Posts: 2,729
    #3
    I did not have that combo
    I did not have that combo either. I just wanted to say that I know how disappointed you are to have to do the chemo. I had 4 cycles of A/C chemo before surgery and thought all I'd need after is radiation until after the surgery and I was told I'd need 4 more cycles this time of Taxotere. I was not happy. I finally decided to just get through it. Hang in there and someday you will be looking back on this and know you did everything you could. Hugs.
  • pitt
    pitt Member Posts: 387
    #4
    Chemo Chicks
    LT, we have a group called the Chemo Chicks and we post what our regimen is and how we are handling it. I believe your cocktail is very similar VickySam, our Queen. I'll start another thread so that you can introduce yourself there. Otherwise, your post might get missed. Hang in there. You can do this. I know it is an awful shock but you will get through it. Hugs, Pitt
  • Sher43009
    Sher43009 Member Posts: 602 Member
    #5
    Blindsided
    Hi LT

    You've got some really good news--you're stage 1, hormone neg. and not in your lymph nodes. I'm IDC, stage 1, hormone pos. and HER2 pos. # 5.4, not in lymph nodes. I had a lumpectomy in June and had AC+T for my chemo then started the herceptin on 11/4. HER2 is a growth protein we're born with that attaches itself to cancer and makes it grow bigger and faster. Herceptin is the wonder drug that disables the HER2 so even if there are cellular cancer in us after all the chemo the HER2 can't attach itself so the cancer may stay dormant.

    I don't know about your chemo, but the herceptin was not bad. I just got tired the day of treatment but was back at work the next day. Good news because I have it every 3 weeks for a year. I start radiation on 11/23 for 7 weeks.

    I wish you luck on Wed. and let us know how you make out.
    Sher
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #6
    LT .. Similiar story .. do you have continuous chemo ...
    I do for 18 weeks, started on 9/8 ... first cycle: TCH/Herceptin/Hercept .. weeks 1 thru 3 ?

    This cocktail is NASTY, no time for our bodies to recover or rest.

    Please .. Please give me a few days as I am sick like a dog .. TCH taken Cycle #4 last Tuesday 11/10 .. I am not on top of the world right now, but I am here for you .. Please give a day to recover from my Herceptin chemo tomorrow, 11/17.

    Private message me, yell or scream if you do not hear back from me in a few days.


    Thank you,

    VickiSam
  • Kat11
    Kat11 Member Posts: 1,931 Member
    #7
    Sher43009 said:

    Blindsided
    Hi LT

    You've got some really good news--you're stage 1, hormone neg. and not in your lymph nodes. I'm IDC, stage 1, hormone pos. and HER2 pos. # 5.4, not in lymph nodes. I had a lumpectomy in June and had AC+T for my chemo then started the herceptin on 11/4. HER2 is a growth protein we're born with that attaches itself to cancer and makes it grow bigger and faster. Herceptin is the wonder drug that disables the HER2 so even if there are cellular cancer in us after all the chemo the HER2 can't attach itself so the cancer may stay dormant.

    I don't know about your chemo, but the herceptin was not bad. I just got tired the day of treatment but was back at work the next day. Good news because I have it every 3 weeks for a year. I start radiation on 11/23 for 7 weeks.

    I wish you luck on Wed. and let us know how you make out.
    Sher

    Herceptin is not bad, just a
    Herceptin is not bad, just a long treatment. I have IDC am her2 pos ER pos PR pos had lumpectomy last june. I did 4 rounds of AC and currently doing taxol and herceptin with 6 weeks of rads to follow and continue herceptin for 52 weeks. I wish you the best.
  • mizcaldwell
    mizcaldwell Member Posts: 143
    #8
    I put this part in another
    I put this part in another post - but thought I'd put it here so you'd see it. We are on the same regimen - taxotere, carboplatin and herceptin. I had invasive ductile carcinoma - mucinous form (1% of breast cancer). It was supposed to be clean, clear margins, no lymph node involvement - but my HERS2 is positive almost as high as it goes - and my Oncotype score was 74 - so that's what landed me in chemo land! I have had one infusion. I had the body aches, nausea (no vomiting - thank goodness!). I have also developed a sinus infection. I had some migraine symptoms (flashing lights, head ache) and worst of all alternating diarrhea then constipation! It has been interesting figuring out what my system can handle. I'm starting to get some mouth sores - but not too bad yet - and my taste buds are whacked. I had my infusion on a Friday - and my worst day was the following Wednesday - but things have been getting better. They are having me go in once a week for herceptin for this first cycle - then starting the day after Thanksgiving (at 7:00 a.m.!!!) - I'll get the next round of the three drugs, and do that for the following four treatments. I am also having a port placed on 11/23.

    My oncologist said that most of his patients who get their treatment on Friday are OK to work on Monday. I planned the Monday off. For the first treatment, I worked Tuesday, was home on Wednesday (the worst day for me) and worked Thrs./Fri. Today (Monday) I went in, but ended up going to the dr. because of the sinus infection. . .

    About the HERS2 score - I think it depends on which test gave the number. There is a histological test, a FISH test, and then the Oncotype DX has a HERS2 component. My type of cancer wouldn't allow the FISH test to work - but the Oncotype HERS2 score is anything over 11.5. . . I don't know about how the others are scored. . .mine was >13.5. What I've been told is that the higher your number, the more HERS2 protein is expressed by your tumor and the more of that protein, the faster the tumor grows. So the herceptin fills in the HERS2 receptors on the cancer cells so they don't get what feeds them and the cancer cells can't grow as fast. Kind of like the tamoxifan with the estrogen receptors. . .

    Sorry this is so long. Hope it helps! Good luck with your treatments! We'll have to compare notes!
  • LT
    LT Member Posts: 31
    #9
    mizcaldwell said:

    I put this part in another
    I put this part in another post - but thought I'd put it here so you'd see it. We are on the same regimen - taxotere, carboplatin and herceptin. I had invasive ductile carcinoma - mucinous form (1% of breast cancer). It was supposed to be clean, clear margins, no lymph node involvement - but my HERS2 is positive almost as high as it goes - and my Oncotype score was 74 - so that's what landed me in chemo land! I have had one infusion. I had the body aches, nausea (no vomiting - thank goodness!). I have also developed a sinus infection. I had some migraine symptoms (flashing lights, head ache) and worst of all alternating diarrhea then constipation! It has been interesting figuring out what my system can handle. I'm starting to get some mouth sores - but not too bad yet - and my taste buds are whacked. I had my infusion on a Friday - and my worst day was the following Wednesday - but things have been getting better. They are having me go in once a week for herceptin for this first cycle - then starting the day after Thanksgiving (at 7:00 a.m.!!!) - I'll get the next round of the three drugs, and do that for the following four treatments. I am also having a port placed on 11/23.

    My oncologist said that most of his patients who get their treatment on Friday are OK to work on Monday. I planned the Monday off. For the first treatment, I worked Tuesday, was home on Wednesday (the worst day for me) and worked Thrs./Fri. Today (Monday) I went in, but ended up going to the dr. because of the sinus infection. . .

    About the HERS2 score - I think it depends on which test gave the number. There is a histological test, a FISH test, and then the Oncotype DX has a HERS2 component. My type of cancer wouldn't allow the FISH test to work - but the Oncotype HERS2 score is anything over 11.5. . . I don't know about how the others are scored. . .mine was >13.5. What I've been told is that the higher your number, the more HERS2 protein is expressed by your tumor and the more of that protein, the faster the tumor grows. So the herceptin fills in the HERS2 receptors on the cancer cells so they don't get what feeds them and the cancer cells can't grow as fast. Kind of like the tamoxifan with the estrogen receptors. . .

    Sorry this is so long. Hope it helps! Good luck with your treatments! We'll have to compare notes!

    Thanks for the imput, ladies in pink
    I teach 4th grade and my onc told me the first week of every treatment I would probably be too wasted to work, but maybe I'll be lucky and be able to do it a couple of days. I'm going to ask where my HER2 number came from - thanks.
    Another question: I'm almost 6 weeks out of bi-lateral
    with recon. and was sleeping pretty good the last week or so without pain meds or anything and pretty good emotionally too. Then ZAP since this weekend I cry at the drop of a hat and don't sleep more than an hour maybe two at a time. I know our bodies heal during deep uninterrupted sleep. Ambien hasn't even helped. Any suggestions or is this just part of the deal?

Discussion Boards