Need Help Finding Her2 positive, hormone receptor neg survivors

Options
ALK
ALK Member Posts: 46
edited June 2014 in HER2+ (Positive) Breast Cancer

I've been diagnosed as being Her2 positive and receptor negative.  I'm doing the treatment T/C/H.  Two of my lymph nodes had cancer cells found.  The tumor was a 3.1 and diagnosed at Stage 2B.  I'm looking for survivors out there and needing advise about radiation.  At this point, they are not sure of the benefits from the studies.  Please give me any advise that you have.  I'm nervous about the receptor being negative.

· Share on FacebookShare on Twitter
«1

Comments

  • Mantra
    Mantra Member Posts: 968
    edited November 2011

    I'm not in the same situation but my sister is. She is ER +/ PR -/ HER2 Positive.  She had a mastectomy and is stage three (16 positive lymph nodes). She had 8 chemo treatments (every two weeks), and is on Herceptin. The radiation oncologist said she absolutely has to have 25 radiation treatments.  She starts those in two weeks. She will also be on a drug but I'm blanking on the name. I think it starts with an A.

    · Share on FacebookShare on Twitter
  • ALK
    ALK Member Posts: 46
    edited November 2011

    Was she HER2 positive with negative receptor?  I'm doing Herceptin every week.  My counts are really low right now.  I just completed by 5th out of 6 of the T/C/H treatments.  After that I will meet with radiologist. 

    · Share on FacebookShare on Twitter
  • Mantra
    Mantra Member Posts: 968
    edited November 2011

    Yes, she is HER2 positive. She is ER positive but PR negative. She had weekly Nuelasta (sp??) shots to hlep keep her white blood cell count up.  Her red blood cell count was dropping but she was able to bring it back up with a change of diet (liver, and some other foods she normally wouldn't touch with a  ten foot pole). 

    She too was on weekly herceptin but now that chemo is finished she is on a 3 week herceptin dose. We didn't realize it at the time but the weekly dose is 1/3 of a regular dose. So now that she is on a 3 week schedule, she gets the full herceptin dose. She's also on beta blockers because the herceptin makes her heart race. But she's had several echo cardiograms and MUGA scans and thankfully she has had no damage to her heart.

    · Share on FacebookShare on Twitter
  • ALK
    ALK Member Posts: 46
    edited November 2011

    Thanks for the information.  My WBC is low this week.  However, my platelets were low a couple of weeks ago.  I have been trying to eat more red meat.  The doctors don't think it makes a difference, but it is worth a try.

     I'm thankful that your sister has no damage to her heart.  She sounds like she is on about the same protocol as I am on.

     I've also read that is you have low counts, you should stay away from fresh fruit, vegies, etc.  Not sure how much truth is to that.

    Thanks again. 

    · Share on FacebookShare on Twitter
  • lkc
    lkc Member Posts: 1,203
    edited November 2011

    Hi ALK, I am hormone receptor neg and her2 pos. I  am " out" over  6yrs and well!

    Radiation is a must do with your pathology , tumor size and lymph node involvement.

    PLEASE Discuss with your DR!

    · Share on FacebookShare on Twitter
  • lkc
    lkc Member Posts: 1,203
    edited November 2011

    I forgot to add, with low White counts, you should not eat any raw food ( including ) veggies, salad, etc as they are apt to have higher amts of bacteria , and when you WBCs are low you are at risk foir infections. Once your  WBCs come back up you can  resume uncooked foods.

    · Share on FacebookShare on Twitter
  • ALK
    ALK Member Posts: 46
    edited November 2011

    You just made my day:)  I have been so concerned about being receptor negative.  Thank you for giving me hope.  I plan on discussing radiation with my doctor.  That is the next step after the treatments are completed December 16 (before Herceptin every 3 weeks).

    Thank you, thank you, thank you! 

    · Share on FacebookShare on Twitter
  • ALK
    ALK Member Posts: 46
    edited November 2011

    Thanks for the advise.  I can't wait until I can eat regular food again.  However, I'm willing to keep it off my menu until I'm better.  Any other diet advise?

    · Share on FacebookShare on Twitter
  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited November 2011

    I'm three years out, Her+, and I had a complete response to chemo, but still did the radiation :)

    · Share on FacebookShare on Twitter
  • ALK
    ALK Member Posts: 46
    edited November 2011

    Where did you have radiation done?  I have heard chest wall, under right arm where nodes were, and neck.

    Were you receptor negative as well?  Thanks for the information:) 

    · Share on FacebookShare on Twitter
  • Slainte
    Slainte Member Posts: 152
    edited November 2011

    I just had my last herceptin today. Had FEC-D protocol from oct 2011 until jan 2012. My tumor was Er/pr neg, her2+ and was 2.1 cm. I had one LN affected. I had mastectomy and no radiation, though a study that came out after my treatments evaluated radiation in cases of 1-3 LN and mastectomy and showed some benefits.



    Christine

    · Share on FacebookShare on Twitter
  • ALK
    ALK Member Posts: 46
    edited November 2011

    Congratulations on your last herceptin treatment.  I'm looking forward to that day (next August).  Thank you for the information as well.  

    · Share on FacebookShare on Twitter
  • lago
    lago Member Posts: 17,186
    edited November 2011

    ALK from what I have read if you pass 3-5 year mark and you are hormone receptor negative your chances of recurrence goes way down… and I mean lower than those of us that are hormone receptor positive.

    Weird thing about this disease is there is a good and bad side to everything. Try to focus on the good side and don't worry about the bad unless it actually happens. My theory: I don't worry about getting into a car accident every day but I do put on my seat belt for protection just in case. I look at treatment as good preventative medicine for recurrence (as long as you aren't over medicating).

    · Share on FacebookShare on Twitter
  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited November 2011

    I was ER/PR neg,  only HER+.  I had radiation under my arms and chest wall, not sure about neck.  Because at surgery time I was node negative, they really couldnt tell me if radiation would benefit, but I was 38, and decided to do everything I can - no regrets :)

    · Share on FacebookShare on Twitter
  • ALK
    ALK Member Posts: 46
    edited November 2011

    Thanks for the insight.  I hope the radiologist has a clear vision to what he/she thinks needs to be done.  My oncologist is wonderful and I trust her whole-heartedly.  She is very up on the latest treatments and trials.  Thanks again.

    · Share on FacebookShare on Twitter
  • ALK
    ALK Member Posts: 46
    edited November 2011

    I just need to find a way to stay positive right now.  I'm trying, but the fatigue wall has hit really hard this treatment.

     Thanks for the information. 

    · Share on FacebookShare on Twitter
  • lkc
    lkc Member Posts: 1,203
    edited November 2011

    Hi again ALK,

    Fatigue is very normal and part of the whole chemo experience! Ride it out. Gradually once done with Chemo and Rads you will start feeling better, The fatigue does resolve! Perhaps knowing that  this  will not last  forever will help you. Anyway,  no  fatigue from Herceptin!

    · Share on FacebookShare on Twitter
  • KitCat1
    KitCat1 Member Posts: 53
    edited November 2011

    Hi ALK,

     I was also er- pr- Her 2 pos. with one lymph node involved. Definately radiation ... it is added bonus and the latest study did prove it to be extremely beneficial. I had chest wall, under arm, whole area. I finished my last Hercepton in May 2011 and am doing well. You will too! I also did TCH. Try not worry and focus on the positive!

    · Share on FacebookShare on Twitter
  • ALK
    ALK Member Posts: 46
    edited November 2011

    Thanks ikc and KitCat1.  I tell myself that this one will be the worse because it is the second to the last hard treatment.  December 2 will be my last hard treatment and I'll know that my first step of HCT is complete.  Thanks for being there for me.

    · Share on FacebookShare on Twitter
  • RebzAmy
    RebzAmy Member Posts: 322
    edited November 2011

    Hi ALK

    Another HER2+ Er- PR- here. Diagnosed in June 2007. 6 lots of chemo, year of herceptin, radiation to 3 areas but not under arm pit where I had a few positive lymph nodes. Had good response to chemo and had mastectomy 3 weeks after last chemo where only a tiny amount of cancer was found. Finished my last herceptin in November 2008 as had a few delays along the way. I heard somewhere that the rads were a very important part of the treatment.

    · Share on FacebookShare on Twitter
  • ALK
    ALK Member Posts: 46
    edited November 2011

    I have had a mastectomy and lymph node removal already.  What do you mean when you write HER2 +++?  I'm not familiar with the three pluses.  

    · Share on FacebookShare on Twitter
  • RebzAmy
    RebzAmy Member Posts: 322
    edited November 2011

    just that being HER2+ some people are strongly HER2 positive and others are more weakly HER2+ mine was strongly HER2+

    · Share on FacebookShare on Twitter
  • maryannecb
    maryannecb Member Posts: 1,453
    edited November 2011

    I had rads. Still Ned.



    I had difficulty with my lung from the rads and the skin is continuing to change years later.

    But....I am well. So no regrets.

    · Share on FacebookShare on Twitter
  • ALK
    ALK Member Posts: 46
    edited November 2011

    Still Ned.  I don't know what that means.  I have my last hard treatment Friday.  Then I will meet with radiologist.  Today I was diagnosed with shingles.  I'm ready to be done with this step.  Thanks for your input.  

    · Share on FacebookShare on Twitter
  • suemed8749
    suemed8749 Member Posts: 1,151
    edited November 2011

    Hi ALK - I was dx with ER-/PR- Her2+ IDC in January of 2008. No positive nodes, so no radiation, but 2.2 cm and .7 cm tumors and extensive DCIS led to a mastectomy. 6 rounds of TCH, then Herceptin every 3 weeks for the rest of the year. I also was in the Neratinib trial for a year. And almost 4 years after dx, I'm doing well. Wishing all the best to you.

    · Share on FacebookShare on Twitter
  • ALK
    ALK Member Posts: 46
    edited December 2011

    Thanks for posting.  I was supposed to get my last "hard" treatment last Friday, but platelet count was too low.  I'm a little down, but seeing your post again gives me hope.  Thanks.

    · Share on FacebookShare on Twitter
  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited December 2011

    NED means No Evidence of Disease. I hope to be NED alongs side all of you!!!

    · Share on FacebookShare on Twitter
  • ALK
    ALK Member Posts: 46
    edited December 2011

    Thanks for the information.  I hope to be NED as well.  I have RAD next (after the last hard treatment) and herceptin until next August.

     We need to continue to keep in touch.  I found my lump end of May and diagnosed beginning of June.  Good luck. 

    · Share on FacebookShare on Twitter
  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited December 2011

    Alk, I start Rad planning Friday, and am on Herceptin til next August. Are you on the December 2011 Rads thread? Come join us.

    · Share on FacebookShare on Twitter
  • ALK
    ALK Member Posts: 46
    edited December 2011

    Thanks for the invite.  I will definitely check it out.  I'm hoping my counts are up so I can still take Rad in December.  Thanks again!

    · Share on FacebookShare on Twitter

Categories