ER-, PR-, Her2+ Roll call
Comments
-
I'm still here...on my 14th month of Herceptin and Perjeta. I wish that in 2012 it had been recommended to use herceptin for tiny tumors....of course perjeta wasn't on the market. I ended up with recurrence to lungs and had big chemo(taxotere) for 7!tx with the h&p. ......stage 4. Haven't been in the hospital since diagnosis. Chest now "stable" don't think I will ever meet NED
0 -
mygrandma - I don't really follow a special diet, just try to limit sugars and eat lots of fruits and vegetables. The less processed the better which I think holds true for everyone, not just cancer patients. When I was in treatment, especially during chemo it was difficult to eat properly at all.
0 -
Sophie. I have er-/pr- her 2 positive.
0 -
Beatmon - glad to see you posting and amazing that you haven't had to be in the hospital. Thanks for checking in. Hope the H&P continues working for a long time.
0 -
my wife hit 5 years NED today, it seems like it was forever ago when she got her diagnosis, went through surgery, etc. For those of you facing this challenge please know that there is lots of hope ahead. Wishing all positive outcomes!!
0 -
Thank you imatthew, best wishes to you and your wife!
0 -
Hi girls..Beatmon, did you receive Herceptin or chemotherapy after the first diagnosis?
0 -
just been diagnosed and starting chemo next week, checking in am ER-, PR-, Her2 +
0 -
Sorry about your dx but I will look forward to getting to know you. Keep posting.
0 -
a repost from this past sept for the newbies;
Hi ladies: don't think I posted yet this year;
It's been 10.5 years since I was dxed with a" nasty * ss tumor" (so said my surgeon ),Stage IIIC , miserable prognosticators, tons of nodes,and no clear surgical margins after my last surgery, blah , blah blah...That was then.
Gradually, I have taken back my life, and
I have remained well and give thanks every day. Remember, there is alot of hope for us er/pr neg, her2 pos ladies with the new targeted treatments available.
Surely, the road we have been routed to is not easily negotiated but despite some bumps along the way we do manage to get through to the other side. I can tell you that my days of being consumed by BC are long gone and replaced by joy of the wonderous life I have.
I wish you all a gentle journey!
0 -
Also in this group now! Stage 4 in September 15. Original dx was triple+ stage llB. Lung, R breast, ext. lymph node, and 75%+ liver involvement. Started Kadcyla 9/29/15 and having a very hard time with it. Not sure if I will continue with it yet.
Moni
0 -
moni731, stick with it. Herceptin can work wonders. Hang in there!
0 -
Dear all
After a long time I came back to this community to say that my mom is doing great and she passed her 5 year mark in November. Keep your hope and faith. She is doing her daily life spending time with her grand-daughter and us as well. going to gym and we all forgot that we experienced that hard and awful days. I'll pray for every one of you.
0 -
Sorry I didn't see the question from Pinkytr, and the answer was no. Had a CT this week. Still stable but NED still evades me, that naughty boy
0 -
Beatmon just wondering why you chose not to have treatment
0 -
Hydranne- I am currently on Kadcyla, however my response has been less than spectacular (TM's and liver enzymes holding barely) and it has caused me a lot of SE's. I am allergic to Herceptin and had to stop last go around. For the infusion I have to have repeated benadryl and steroids throughout the 8 hour infusion! Too top that off, I only get 1/3 rd of the usual dose, so I get this every Monday. Even with this I have a reaction on Tuesdays of a fever to 102.5, shaking chills, pain to my liver and a killer headache. I guess I am alone with that, as the nurses tell me they have never had anyone react this way. Kinda beginning to doubt all this.
Many people have excellent response and tolerance of Kadcyla though and almost no SE's, so maybe that would be a possibility. My MO has broached the subject of other drug possibilities, as I did not tolerate other chemos, I think she is loathe to change just yet. Guess we will see what the scans show at the end of the month.
Wishing you the best, Moni.
0 -
Hydranne - My understanding is that Kadcyla is the second-line defense for HER2. There is also something called Tykerb that is already approved for use, and something called Margetuximab that is in clinical trials and looks promising (http://www.macrogenics.com/products-margetuximab.html).
0 -
I am starting new med next week, Kadcyla. According to my recent bone scan, it showed 2 areas of progression in my rib and spine. I was surprised as my tumor marker went from 164 to 25. My first scan which showed bone mets was 9-16-15. I was on T-H-P. My 2nd scan was 11-30-15. Not sure of SE and what to expect.
Thanks, Wanda
0 -
Wanda, I finished my 17 cycles with kadcyla ( T-DM1) two weeks ago.
I follow a discussion thread here. Who's on Kadcyla/TDM1? (in forum Stage IV and Metastatic Breast Cancer ONLY)
Maggie
0 -
- Moni731 Why not start Perjeta a huminized monoclonal antibody? This works like herceptin?? Ask about it... Might be the ticket
0 -
Still in shock over it all!!! The results are in from my stereotactic biopsy, and I fall into this ER-/PR-/HER2+ category. My head is spinning!
My oncologist recommends a right-breast mastectomy because of the vast distribution of bad cells, and an MRI and _another_ stereotactic biopsy on the left. But I'm nearly 100% convinced that because something (anything!) was found on the left as well, and because ER-/PR-/HER2+ is so aggressive, that I should just forget about all that testing and focus on a double mastectomy.
I have received a few professional opinions already, and I can read all the science behind either choice, but I'd love to hear the opinions of those who are actually sitting in the same boat with me...
Did anyone else have "less involvement" in one breast over the other? What would you do? What did you do?
0 -
06elise
I was diagnosed with IDC and HER2+ ER/pr - grade 3 cancer. Prior to surgery they only found cancer in my left breast but I chose abi-lateral mastectomy because even though it didn't change my survival rate it did change my chances of reoccurrence rate. I had to have chemo and Herceptin.
They did not find cancer in my right breast tissue but I am glad I had a BMX. My Mom had cancer first in her left and two years later in her right and I didn't want to undergo that.
I first tried implants with immediate expanders at surgery but had multiple life threatening infections with those and even after getting the implants was in a lot of pain. So two years later I had DIEP and am so glad I did it. It was a bigger surgery to recover from (sort of) given I had to have expanders done a total of four times, it really for me was a better recovery.
I had to not use the first breast surgeon I met with because she didn't feel I should take off my healthy right breast. My oncologist agreed with my decision to be surgically aggressive so I found another breast surgeon who also agreed with that approach.
Sending you love and prayers and know that with the new treatments for HER2 our prognosis is much improved.
Take care,
Julie
0 -
06elise - I had a firm diagnosis in one breast & dense tissue in the other. I had a BMX and - no surprise - turned out both breasts had cancerous tissue. I'm very glad I had both taken off at the same time. I wouldn't want to have worried everyday moving forward or gone through surgery all over again.
0 -
06elise I think it is important to biopsy the other breast because if you look at my stats I had two different kinds of cancer- one in each breast. I did opt to have a BMX and they did do pathology on both sides but if any Her2+ tumor is bigger than 2 cm or possibility of being node positive exists...Well then it would change your treatment plan to neoadjunctive and you would be eligible for Perjeta ( at least in the USA you would) I think it is worth getting information. I would want a MRI to check my nodes before surgery. I am glad mine were negative but I regret not demanding that for verification. My tumor was too small for Perjeta so in the end it didn't matter for me but.......
Also my other side was ER+ PR+ HER2- and had a GENE + I ended up also having an oophrectomy and BMX plus aromotase inhibitors. Crazy world.
0 -
Thank you so much for sharing your own stories!
No matter what the left breast shows, I am about to start neoadjuvant chemo with Perjeta because of the ER-/PR-/HER2+ "scattered throughout" my entire right breast. They scheduled my original biopsy because of something they referred to as a 13mm "cluster" on my right breast; but that just turned out to be an area of intense concentration. The entire breast is apparently involved to some extent. Lucky me.
julieho Oh, your mother's experience!! :-( I think the possibility of recurrence is what is driving my decision more than anything. Even though I have no known familial history of breast cancer, I could imagine having huge amounts of anxiety every time I went in for a follow-on mammogram! ...for the rest of my life!
MinusTwo I'm so glad you were able to have them both removed!! Best wishes for a clean bill of health in the years to come!
exercise_guru It never even occurred to me that there could be different forms of cancer in each breast! I'm going in for my pre-chemo instruction on Friday; think I'll ask about that possibility (especially how/whether it might affect my treatments) at that time. Thank you for your reply!!
0 -
Your welcome I wanted to sign onto this thread so it was a good way for me to say hello to everyone( Waving)
Will you end up having Chemo before or after surgery? Will you end up having a double mastectomy?
My left side (HER2+) was found first. They thought the other side was DCIS but ended up being IDC (ER+PR+) in surgery so that led to me having post Chemo Tamoxifen or Arimidex. My nodes were negative so no radiation.The TCHP Chemo is a good Chemo. I had TCH. It was tough but I got through. Happy to cheer you on too!
0 -
(wave) Hello to you, too!
I will be starting chemo first. Next week, I think. But my schedule right now is limited to the Dramatic Haircut tomorrow, an MRI, and the port installation (with sentinal lymph node extraction) surgery on Friday.
Maybe they'll schedule my first dose for the beginning of next week...? And then maybe they'll schedule my BMX, after they see how I'm doing on these chemo drugs...?
My doctors are recommending AC-THP over TCHP as an "aggressive" treatment for an "aggressive" cancer. I hate that word now. I've heard it from every doctor and nurse who has described my status. *sigh*
How/when did they schedule your BMX? Had you completed all of your chemo before surgery?
Oh, and did anyone else notice that it's World Cancer Day this Thursday?
http://www.cancer.org/cancer/news/features/world-cancer-day-2016-we-can-i-can
0 -
Hello 06elise, I just thought I would chime in on the AC-THP. I have a friend who just got done with that very same chemo AC-T (without HP) and she is triple negative. Out of all the research I have done for even my own treatment I haven't seen AC used for Her2+ recently. Maybe your docs are really on top of it? One thing though you should know is that Herceptin is hard on the heart and can cause worse heart damage on AC than with Taxol. Taxol pairs better with Herceptin. I had Taxol, Carboplatin and Herceptin and had a complete response. I have noticed others do Taxotere, Carboplatin, Herceptin and Perjeta. I wish they would have added Perjeta to my cocktail to cover all bases. Another thing I wish I had done was setting up all the appts with the surgical teams at the very beginning of my chemo treatment. Time goes fast during chemo so get a jump on it and make sure you like your surgeons. If you don't you have time to get different ones. Good luck and message me anytime!!! -Jillian
0 -
Once my chemo was over I let my BS know and they scheduled me for the pre-op appointment. You need to be through with chemo before surgery because chemo slows down your body being able to heal itself. For instance, in early December I hurt myself. The wound got infected and here it is in early February and the wound still hasn't healed. Along with a wound from my biopsy in early September.
0 -
Skittlegirl thank you for letting me know how your timeline laid out! I was hoping that was something to be scheduled later. My head is swimming, and I don't even have a port in my chest yet.
jks123 Jillian, thank you for chiming in! :-) Something you said confused me, though:
From all the literature I've seen, the "H" in AC-THP is Herceptin and the "P" is Perjeta; both are antibodies specifically targeting the HER2 component of my diagnosis. So I'm not sure why a triple-negative patient would even consider the regimen...??
- Adriamycin (also known as doxorubicin)
- Cytoxan (also known as cyclophosphamide)
- Taxol (also known as paclitaxel)
- Herceptin
- Perjeta
0
