TRIPLE POSITIVE GROUP

Fleur, sorry you have to be here but this is the best place for information, support, inspiration and new friends who understand what you're going through!

I have been participating in a clinical trial (details below) since September 2016. I get Herceptin and Perjeta every 3 weeks and take a daily aromatase inhibitor (Letrazole). I did not do chemo. I had a mastectomy (only because I had 2 tumors) and pathology results were terrific: clear margins, clear lymph nodes and only a few single cancer cells in the tissue. My side effects from HP were minimal but the AI causes me a few minor issues (runny nose, dry skin, brittle hair, fatigue and tailbone pain). I changed my diet significantly after diagnosis and my MO said that may have contributed to how quickly and fully I responded to the HP. I have 2 treatments left and despite the side effects I feel great and very grateful for the opportunity to participate in this clinical trial.

I wish you the very best and pray you respond well to whatever treatment you choose. Feel free to private message me if you have questions.

Take care, hugs


NEOADjuvant Aromatase Inhibitor and Pertuzumab/Trastuzumab for Women With Breast Cancer (NEOADAPT)

https://www.clinicaltrials.gov/ct2/show/NCT02689921?term=Cancer+treatment+centers&cond=Breast+Cancer&cntry1=NA:US&draw=1&rank=2

Hello everyone, I am new to this site and recently diagnosed with triple positive breast cancer. I have found all of the info given on this forum to be very useful, there doesn't seem to be much info out there that I could find for triple + cancer. I have just been tested ( yesterday) for the genetic gene mutation as they think I have a risk of having a Brca1 / brca2 or other gene mutation. My results are in 3 weeks and my surgery is dependant on the results. If I am positive then I'm looking at a bilateral with reconstruction and oophorectomy. If not then a lumpectomy. My tumor is about 1.5 cm and grade 3 and is up against / growing into the pectoral muscle. My surgeon suggested chemo first to try to shrink the tumor so they can get it away from the muscle and therefore get clear margins. My case it being discussed later this week at the tumor board. I hope they start treatment soon, as the constant waiting for results and knowing this thing is in there doing what it wants scares me, I need to start the fighting back.

From what I have read about, most gene mutations are in triple negative or Her2 / new negative cancers. I haven't come across a triple positive person who had Brca1 or Brca2 as yet. If there is someone out there with this combo I would love to hear from you.

Take care and lots of hugs to everyone

Icedgem I'm so sorry for the circumstances that have brought you here, but you're in the right place. I tested positive for the brca2 gene mutation and am her2 positive. I got the genetic testing because I was adopted at birth and did not have any family medical information. I haven't heard before that this was a rare combination.

I was just diagnosed last month and I started chemo last Wednesday (9 days ago) I am going to talk to my MO tomorrow but I feel like I should know more about my lymph nodes. Isn't it important to know if it's spread to the nodes? I'm having 6 rounds of chemo before surgery. I had a breast MRI that showed two abnormal looking nodes but when I was sent for an ultrasound biopsy, the radiologist couldn't find any nodes to biopsy. I guess I should be relieved by that, but I'm not. Is this normal procedure fro triple positive people? to not know about nodes until the surgery after chemo?

Thanks, ladies.

But isn't it odd that this would be treatment related if it's been 15 Herceptin treatments? Doesn't that seem late in the day to start getting side effects?

As for being sent to my GP, what I'm being told in general at this point is that there is a 'standard of care' in terms of when they order tests and not. So if you have a general complaint, you should see your GP. I find it annoying. But I'm in tomorrow having an echocardiogram. I'm going to go to the cancer centre and talk to the nurses about it more. I've dropped a notch in my belt in one week's time. Did you have any nausea, Elaine? For me, the main symptoms are feeling an upset stomach, 'almost' diarrhea, lots of gas and generally feeling off. My energy is the same - no fatigue.

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Hi everyone. I have a dilemma and am looking for your opinion.

Most of you know I have been having problems with my wound since having a lumpectomy followed by further surgery to clear the margin and then starting weekly taxol. I had 2 cycles, wound opened, had a break of 4 weeks until wound healed, had another 3 cycles of taxol, wound broke down again and am on another break waiting for it to heal.

I met today with my oncologist and now have a decision to make over weekend. I have 2 choices:

i) Stop Taxol and go straight to AI and 4 weeks of radium (also getting herceptin every 3 weeks for a year)

ii) Give Taxol one more try (have had 5 cycles of 12 so 7 cycles left) but have a very high risk of wound breaking down again which would push my other treatments out until wound heals again. There is also a high risk of infection as I did have one the first time wound opened and oncologist is afraid next time it could be worse, even life threatening.

I am so afraid of stopping chemo but that is what my head and heart are both telling me to do. I really wish the oncologist had made the decision for me but unfortunately she hasn't so it's down to me.

Any advice is greatly appreciated. I am also posting this in the weekly taxolgroup forum.

Thank you everyone ☺️☺️

posey - try adding a probiotic, it helped me during Herceptin only

emily - the problem with neoadjuvent chemo is that your staging can be a bit murky if your nodal status is undetermined prior to starting. Even if you were node positive the treatment would likely be unchanged. If at the time of surgery your sentinel node looks like cancer had been present your oncologist would most likely opt for radiation. I like to advise having a SNB done at the time of port placement if at all possible so that nodal status is more clear prior to chemo, if imaging has not revealed known cancer in the axilla

Emily,

I had a fine needle biopsy of a suspicious node, but that was only possible because the ultrasound technician could find it. Your nodal status won't change your chemo plan, but it could affect how many nodes are removed during surgery. Generally speaking, the more nodes removed, the higher your chances of lymphadema. Maybe you could have an MRI-guided biopsy of the suspicious nodes (Special K -- is that possible)?

Yes, doing chemo first does make staging more difficult, especially if chemo wipes everything out!

emily_mh, I pondered this very question many times. If my node status is murky then I don't know if I will need radiation. My disease was multi-focal - dcis and IDC. So, once an MRI confirmed the second field of cancer, then a lumpectomy was off the table and a mastectomy was required. At that point with neoadjuvant chemo planned, there was no reason to order a node biopsy. I waited until surgery after 6 rounds of TCHP to find out my node status. It bothered me very much not to have a complete staging initially. Everyone's situation is different; however, going months without a complete node picture is normal.

lita, the waiting is so stressful - I pray you receive good news very soon. Hang in there

icedgem- sorry you have to be here but this a great place for information and support. I agree with T-Sue, the waiting and anxiety in the beginning was the worst part of my cancer experience. Once I met with my oncologist and decided on my treatment plan, my survival skills kicked into high gear. Do your research, don't be afraid to ask lots of questions and have faith you will get through this. We're here for you.

Take care

Thank you everyone for the support, I'm so glad I found you.

deni1661 - I totally agree with you, as soon as the oncologists decide on my treatment plan, I will be a lot happier and can focus on fighting back

I am meeting with my MO tomorrow, so hopefully I might get an indication of what is going to happen. The tumor board meeting is tomorrow also, so it's a big day - I hope. I'm expecting to be told something.

Tough cookie - thank you for coming forward, I was led to believe it was a fairly rare combo, but i am on information overload right now after that genetic test.

Will keep you posted - Thanks again and take care

Thank you all for answering my question about lymph node biopsy and staging. I guess I'll just have to wait until surgery to find out.

Also, today I found out I have an infection around my port. Has anyone had this problem and did antibiotics clear it up in time for next round? I wonder if I can just change to IV in arm

Hey everyone, had a bit of a setback this week, my labs came back very low with my platelets on Wednesday at 45,000 and then by Friday they dropped to 27,000 and they sent me for a platelet transfusion.  At those numbers, I have an increased risk of bleeding without injury.  I REALLY did not want the infusion but the oncology nurse and MO felt it was necessary in order to keep me safe.  Of all the things in the world I didn't want, was this.  I wanted to wait till Monday to check again (before transfusion) but they seemed very concerned about me waiting that long.  I was told that they would adjust my chemo on Wednesday but I have to have labs again Monday before even proceeding.  As much as I hate chemo, I don't want this to set me back!!

Melanie

Moody Blues,

In the short run, it's no fun to prolong treatment. In the long run, this infusion will be but a blip. Take it easy and listen to your doctors. ((Hugs))