TRIPLE POSITIVE GROUP

Hello ladies - I am so confused!!

I just got a new twist in my final path report. I am triple positive ER 90% PR 90% Her2 + (2.0 ratio, the lowest value for positive) AND GRADE 1. Has anyone known of someone that is Her2 positive & Grade 1? And I also had a 1mm micromet in 1/5 sentinel nodes. The pathology of my 1.6cm IDC tumor doesn't fit together as it should, scientifically. I know each of us is different, but I have not seen anyone's who is Her2+ & Grade 1...they don't typically go together. My SO & MO are surprised!! And I am at MDA where they supposedly see everything.

HAs anyone see any other ladies with this combination?

I am starting 6 rounds of TCHP + Herceprin for rest of the yearon Aug 21.

HapB - of course. I think I may have answered this earlier & you might have missed it

My surgeon made sure I understood that a dbl MX would not give me a huge benefit over lumpectomy, but allowed me to make the decision. Her opinion is that the patient must be comfortable with the decision & the goal is to remove the unending worry/fear for the patient.

My decision was influenced by several things. We lost a neighbor to aggressive breast cancer a few years ago & I always said if I got it, they were gone; my age, I did not want to have that worry of recurrence or getting it in the other breast (I know there is still a chance); and although I am not, our family is primarily in the medical profession & in addition to their opinion, everyone we know that has had BC has gone the DMX due to the same desire to take away as much risk as possible. It truly is a personal decision.

All this being said, many have lumpectomy & stats show there is not a significant increase in benefit of DMX vs the huge surgery that it is. I could not have recovered from this surgery alone. At 3 wks out, I finally felt pretty good.

I think you would have needed chemo regardless of your surgery due to your triple positive status. If you live alone & have other medical issues, I'm sure your doctors looked at the big picture if they are insisting you have a lumpectomy.

Hugs & Prayers

Generally, Her2+ tumors are aggressive and higher grade, but remember that grade is a snapshot - they are looking at a small piece of a non-homogenous tumor. The area sampled may have been grade 1, but another part of the tumor may have a higher grade.

cowgirl - here it is - Herceptin dosing can be infused from a minimum of 30 minutes to a maximum of 90 minutes - this is according to the instructions from Genentech, the manufacturer.. Some have their loading dose of Herceptin infused over 90 minutes, then subsequent infusions faster because the oncology staff will say if it was tolerated well it can be done faster. I had all 6 Herceptin infusions that were accompanied by Taxotere and Carboplatin at 90 minute times, but my first H alone was given in 30 minutes. I had no bone/joint aching with the first 6, but that first 30 min infusion left me unable to maintain any sleeping position for more than 15 minutes due to leg/hip/back pain. It lasted about a week, and I was miserable. I asked to go back to 90 minute infusion times and had no further issues with the remaining 10 infusions. If you are experiencing more severe SE from Herceptin than the norm, I would advise that you ask to have your infusion slowed to 90 minutes. Receiving your Herceptin infusion later in the day may be helpful if you get push-back from staff when asking for a longer infusion time, as infusion rooms get a little quieter later in the day and you may be able to occupy a chair for a longer period.

moody - At the time of your diagnosis Perjeta was only FDA approved for neoadjuvent administration. Because you had surgery first, your MO may have felt Perjeta would not have been covered by insurance.

I had the same results as Kae, originally grade 2 but the downgraded to 1 after mastectomy due to only a few remaining single cells

is perjeta now approved as an adjuvantvtreatment?anybody know

I'm still getting Perjeta with Herceptin post surgery but I'm in a clinical trial so that is probably the exception.

HapB, I'm not quite sure if you meant your comment directed to me to be sarcastic in tone or not.

I do sympathize with all who experience bad side effects of BC treatments, as I experienced plenty of them from my chemo, surgeries, etc. At the same time, I believe it is important that we show both sides of the story, so those just starting their treatments know that it is not all doom and gloom, that not everybody experiences horrible side effects from every single one of their treatments.

BB

Kae, I just asked my MO and took notes.

Nerlynx is supposed to be available in September. It may be considered in 6 to 8 months time as an added therapy in my case. It's not off the table and it's not a given. To be determined.

On the Perjeta, so far there has been no study that demonstrates that a year of perjeta is better than the 6 cycles of perjeta given with TCHP neoadjuvant treatment in early breast cancer with tumour greater than 2 cm and/or node positive status. Apparently, larger tumours, node status and other factors (I.e. response to date) will impact who gets what or who should get what. Cost will be a factor though once a treatment is FDA approved, it should not be. More to be determined.

lita - I was diagnosed at 54, and ran Predict 2.0 for that age, 10 years younger, and 10 years older. There I show almost no difference between stats at 44 and 54. When I changed the age to 64, the initial number alive without adjuvent treatment drops, but the benefit added by treatment remains pretty steady, so I would guess it has to do with age related lifespan and potential co-morbidities.

HapB - I think your MO might be referencing the Aphinity trial -

"At an early follow-up of 3 years, 93.2% of women who received trastuzumab alone had not developed invasive disease, compared with 94.1% of those who received pertuzumab and trastuzumab—a difference of 1%."

Thank you everyone for your comments and thoughts, I appreciate it.  Sometimes you can't see the tree's for the woods.  

SpecialK  thank you for the link, it was VERY informative.  Thank you also for pointing out that when I was dx'd, Perjeta was only approved for neoadjuvent administration.

My numbers were good today and I received chemo today, everything went well.  MO adjusted dosage to a tad bit lower for the Taxotere and Carboplatin but, kept my Herceptin at the same doseage.  My echo came back fine as well-no changes with the heart.

I had Perjeta on my mind for several days and had researched but, I was confused by the wording in many articles.  Unfortunately for me, I sat by a triple positive TODAY who now has a reoccurrence 3 years out, mets to the hip.  She told me her story and my mind was like a ping pong ball bouncing around, I wanted to scream out "shut up, I can't hear this" but I wanted to listen and be compassionate as she was hurting, venting and scared.  I am such an ass and coward for feeling that way.  She had a lumpectomy, node negative, approx. 2 cm, IDC, TCH and radiation three years ago.  Now she is TCHP regimen.  I opted for Unilateral MX.  Another reason for wanting clearer info on Perjeta.             No guarantees in this, I have to remain positive and keep my chin up!!!!  

Once again, thank you everyone for chiming in and giving me your thoughts on this!

~Melanie

Hi. On the subject of Nerlynx or neratinib, the theory is that the molecules of this drug are small and accordingly or therefore can or could pass the blood brain barrier. Herceptin does not pass the blood brain barrier ("BBB") though it could through a different delivery method. Despite the side effects, the notion of tackling the BBB is very interesting to me for reasons with which we may unfortunately be familiar.

MoodyBlues, similar to your experience, I have had a neighbor during an infusion who was dealing with a recurrence. This is very frightening when you are fighting for your life and in the midst of treatment, knowing these are the woman who are bravely participating in critical drug trials. Your feelings are valid and understandable. I personally have taken a draconian approach with family and friends and asked specifically to be kept out of the loop on sad or bad news when possible. It's difficult to stay positive and not be overwhelmed with fear. I hear you.

Dear Members,

We are jumping in to say that these past few comments, in particular, are very important with respect to self-care. Hearing others' stories whether they are in your real time life or here on the boards at a time when you are feeling vulnerable can be stressful. Please remember and try not to compare your situation with others as everyone responds to cancer and its treatment differently. Thanks to all of you for offering these helpful tips. The Mods

Thank you Moderators, I totally agree.  There are times that I am totally fine and can listen and encourage etc.  I guess after a very hard chemo #3, platelet infusions and having to skip chemo #4 for one week I was in a very vulnerable state.  I am usually a glass half full girl looking for the silver lining but, in this instance I was not.  I am grateful that I have a great doctors and two support groups who help each of us walk through the spots like these.  Also very grateful that God has got my back in the weee hours of the morning to talk to.

Yes, we are all so different and I cannot compare my walk with cancer to someone else, I sure wish that I had handled the situation differently, I feel like I left her down by not giving her a pep talk.  Once again Moderators, thank you for chiming in and offering your support!