TRIPLE POSITIVE GROUP

Keep in mind that, as a triple positive, by the time you get to the end of Herceptin you have also had surgery - often more than one, some of us have had radiation, and are taking anti-hormonal therapy, so figuring out what caused what side effect can be a bit of a mystery.

I have been on Herceptin for almost a year. I had it weekly for 12 weeks with my Taxol, then had it every three weeks since then. Of course I was on it during my radiation. Honestly, I don't think I had many, if any, side effects from the Herceptin. In fact, I do volunteer work at my cancer center on Wednesdays, and every three weeks that falls the day after my Herceptin treatment. I have not had any problems. I am sad that many of you have had problems while on Herceptin.

I think my anastrozole has been giving me unpleasant side effects rather than the Herceptin. I have a treatment tomorrow, then one in a few weeks after which I will get to ring the bell!

M

Yes, I did read about flu like symptoms but didn't realize that it was experienced by that many!!

I've definitely been symptomatic on it, but nothing that was too intense. I will read this - thanks...

Now, Zometa was a real b**** for me - I felt Awful on the second day. I've only had one infusion of that

For me Herceptin was like a walk in the park. I think it was the easiest part of my treatments.

Tresjoli2,

yes, i will let you know about zoladex. it is now submitted to my insurance.hopefully they will authorize it at once.

I had a month of just herceptin before I started AI's. I too found herceptin easier than either the taxol or the AI's although SE are getting better. I switched to Teva after my first 90 days and have done better. Thanks to all who suggested it.

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.

is perjeta now approved as an adjuvantvtreatment?anybody know

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.