TRIPLE POSITIVE GROUP

That's a good question edwsmom - I'd like to hear that too. I'm on a different regimen (and smack in the middle of it) but certainly curious. From what I've read, not getting pCR is pretty common.

twiggyOR I had shingles and they gave me herceptin. Do tell them right away though when you check in. I know they put me in what I call the "time out" room (isolation so you don't get anyone else sick).

Hi edwsmom, I had the same chemo regimen and it looks like our cancers were at similar stages. It appeared that I had no lymph node involvement (was not tested before chemo) and I had clear margins but chemo did not eradicate my tumors. I had 2 tumors in the same breast - one about 6 cm and the other so small the mammogram did not pick it up. It was not found until I had an MRI. Neither was gone after chemo. The large had shrunk by more than half but the small one was not gone. My onc was pleased with the state of the large one, but, I said I was concerned because the smalltumor was still there and he said he could understand my concerns. Because of that the decision was made for me to have a consultation with a radiologist who felt I should have radiation. So I did that as well and of course a year of Herceptin. Now finished with all, I am taking Arimidex and constantly worried about cancer returning

First of all thank you for your knowledge & experience and supporting me through my "i don't wanna do chemo" crisis earlier this year! I made it through my first treatment with minimal side effects and flying colors.

I love reading all of your posts! I usually check in here daily, even when I'm keeping quiet learning from all of you triple positive warriors! You possess such a wealth of knowledge I am so deeply grateful for... it gives me hope that i can come here for new crisis moments and that you will have priceless words of wisdom to share with this here newbie.

Ladies!!! I HAVE AWESOME NEWS!!!

• the 1 inch tumor inside my right breast has essentially DISAPPEARED after only 1 treatment!!! my MO searched for it today by touch and couldn't find the tiny thing. a week ago at my last appointment the oncology nurse was excited and amazed but hearing from the doctor today that even he just as shocked/amazed has me in great spirits. He gave me a big hug and told me to keep doing whatever it is that i'm doing and that we can do an ultrasound at my next check up to see if any traces are left WOO HOO!!!

I think it's the holistic approach i am taking... for once in my life, letting others take care of me and allowing myself to receive all the LOVE surrounding me, doing my best to take these badass supplements everyday, powerful personal meditations & prayers from my circle of support (including you!), POSITIVE mental attitude, deeply listening to my intuition... and... the chemo combo doing it's job and listening to my request to release that which I don't need in my body so that i can continue to be strong during these treatments... all of this has KILLED the TUMOR (almost completely)!

I asked the MO what all this means. "Does it mean I can stop treatments early? if the tumor is gone does it mean all the other cancer cells are gone?"

He said that the fact that the tumor has almost completely disappeared means that my body is responding exceptionally well, but because all clinical trials are for 6 or 8 rounds of chemo, stopping early would not give me the benefit of research. If i stop early there are no statistics to shed light on recurrence rates etc... SO I'm gonna keep powering through!!!

just curious...Did any of you ladies stop treatment early?

XOXO
N

Great news, 33triple!

33 triple, I had similar results. After 1st treatment it was very hard to find the lump. After the 2nd treatment, it could not be felt at all. Of course I had positive lymph nodes - which also could not be felt after 2nd treatment. I figured the remaining treatment would be extra insurance to knock out any remaining cells that may try to mount another attack. Lol. Plus my bs said she has seen some tumors that can no longer be felt but kind of collapse on themselves but are still there. I did have a pcr and it sounds like you will too!

So happy to hear 33Triple and Birdie56!

Iago, I did notice our DX was very similar but I think our treatment was slightly different. I had docetaxol, carboplatin, Herceptin, and Perjeta. I had heard from the oncology nurses that they were having great success with this combination. I wondered if that was why onc seemed concerned about my small tumor still being there.

Hi everyone, I am checking in!! My journey has been interesting, not unlike each of you! I was DX 3 weeks prior to my 32nd birthday, June 19th 2014, with triple pos breast CA. ER/PR 100% My tumor was 1.7 cm. Lymph node negative, but I informed my surgeon and oncologist that I would not undergo radiation even if it was positive. My tumor was on my L side, and as a Nurse I had personally seen some issues with L side radiation. A VERY personal choice.

I was scheduled for 6 rounds of TCH, which I began September 15th 2014, and I would then finish up Herceptin post chemo. That did not work out as planned. After 2 blood transfusions, and unabated nausea despite everything they gave me, I quit at 4 rounds. That was a tough decision, but not one I regret at all. At the 6 month mark I quit Herceptin. I became tachycardic, lethargic, and the pain was just too much. I decided that IF I recurred, I would be more upset that I kept going despite poor quality of life that chemo gave me. My Oncologist, affiliated with a private practice, never took my concerns seriously. That is another story altogether..

Immediately after chemo I began the SOFT protocol. My Oncologist would not consider Tamoxifen due to my family history of endometrial cancer. Aromasin and Trelstar. My depression and Bi Polar Disorder that was successfully treated and stable for 15 years launched into a downward spiral after 4 months on that combination. I was "informed" that these drugs would not have this effect, I needed to increase my meds. I developed trigger finger, and then fell over after I first woke up because my legs locked up.

I discontinued seeing him and did 4-5 months of research to find a physician that could meet my needs, even if I chose to forgo specific treatments.

I found an amazing woman who spent an hour with me just listening and understanding what I desired and needed, This was 19 months post first chemotherapy. She totally "got it", she also confirmed my belief that ovarian suppression drugs and aromasin can cause pain and worsening of depression. She also understood that I was willing to risk the endometrial cancer to use Tamoxifen, which is a drug that has been used by women for decades. Good track record with fewer side effects.

Through blood tests at 19 months post first chemo, I discovered that my estrogen levels are in the post menopausal range, less than 5.

I saw an Oncologic gynecologist who will be ultrasounding my uterus on frequent intervals, once a year, and will immediately just remove my uterus if the lining begins to thicken.

I am now a 20 month survivor, and very happy with my switch and quality of life.

Actually, Iago, I am not "young" except at heart! I was 65 when diagnosed. For some reason my triple positive tumor though responding did not have the response that was hoped for or that is often seen in others. Hence, the decision to throw everything at this cancer. Your 5 year healthy history gives me hope! Glad to see stories like yours

SpecialK - I did have an echo prior to starting Herceptin. My EF was estimated to be about 60, the second echo (after 11 weeks) was showing an EF of about 45 which is what is prompting the MUGA scan and stopping any further infusions at this time. I started this whole journey in great health, as much as I was aware of the potential damage to my heart I am still in shock. I still have rads to face as well.

Cyndi

Hi,

yes- my ejection fraction dropped from 65 to 53% on herceptin after 8 treatments. I was a wreck. We did not hold off on treatments though, I got two more and then had my next echo after 6 weeks. Amazingly my EJ is now above 60 again. Not sure if I had a false reading there in the middle or what happened. However, as much as I hate herceptin, I'm glad I can keep getting it, and I'm glad my heart seems to be doing better now.

So anyway, apparently most people who have mild heart failure on herceptin will reverse eventually, sometimes after the herceptin is held, or after cardiac meds ( or both). That's reassuring to some extent although a scary proposition in my opinion!

Hi ladies, at the age of 28 I have been was DX with IDC Stage 3, 6 Cm tumor area, Er+, Pr+, Her2+. My treatment plan includes chemo, double mastectomy, radiation, and 1 total year of herceptin. I had a port placed a couple of weeks ago, egg retrievals last week, and yesterday I started my first round of taxotere, carboplatin, herceptin, and perjeta (TCHP) although I received the medication as H, P, T, C.

Has anyone else with triple positive breast cancer taken this specific regimen? I just joined a thread with a group of ladies who are starting chemo this week as well, but I wanted to see if anyone had any specific advice/information on their experience with TCHP.

I do plan on working as much as possible during treatment so any advice on how to minimize symptoms would be greatly appreciated! How many days after chemo did you miss work? How long after your first treatment did you start to lose your hair?

Thank you!

@Fightergirl, thanks so much! I'm going to check the thread out!

faith - here is a thread on neiadjuvent TCHP and anotherfrom 2014/2015 of all TCHP posts:

https://community.breastcancer.org/forum/80/topics...

https://community.breastcancer.org/forum/69/topics...