TRIPLE POSITIVE GROUP

I'm sorry Tresjoli, we all need a pity party sometimes. Treatment is hard. I've been on Arimidex 2 years. I've found that the aches and pains and even the hot flashes have greatly improved since I started. The first year was the worst. I'm older than you, so I had some aches and pains to begin with, so I'm not expecting to have none now. I hope things get better for you.

I just wanted to comment on the Perjeta. It seems a lot of ladys here has not been getting this drug and some that are getting 4 or more doses before surgery. I am getting treated in Sweden and here the "national" standard treatment for Her2+ patients are 3 doses of Perjeta before surgery and 12 doses of Hercaptin over a year. I understand the drugs are very expensive so perhaps the Swedish guidelines are a bit low. I moved here over 10 years ago and no longer have a US insurance so now I am "stuck" in Sweden..:) It is ok, I was born here but lived and worked in the US most my adult life and became a US citizen. I am 55 now. It seems different countries might give different treatments so I am very interested in reading signatures and treatment plans on this board to compare. Some countries do not offer Perjeta at all.

I just noticed I am developing a rash between my breast and on my back, but I would be damned if I can not take the treatment I am given so at the moment any side effects seems minor to the fact that the cancer needs to shrink.

kattis - you may also be able to receive Benadryl as a pre-med prior to infusion - it may help with the rash. Taxanes in particular cause rashes, I was given Benadryl prior to each of my six chemo infusions, but discontinued when I moved to Herceptin only. Also, while I met the criteria for Perjeta - tumor larger than 2cm and node positive - it was not available for use for early stage Her2+ breast cancer when I was treated, so I am one whose sig line might cause confusion.

Hi Kattis894:

The studies that led to the approval of pertuzumab (Perjeta) in the neoadjuvant setting included several different types of regimens. As a result, several different neoadjuvant regimens with three to six cycles of Perjeta are included in the current FDA label (March, 2016). The number of cycles of Perjeta appears to be linked to the other components of the regimen. One such regimen from the label is:

"Three preoperative cycles of FEC alone followed by 3 preoperative cycles of PERJETA in combination with docetaxel and trastuzumab as given in Study 3"

". . . Following surgery, patients should continue to receive trastuzumab to complete 1 year of treatment."

For the neoadjuvant component, our local NCCN guidelines for breast cancer (Version 2.2016) include examples of FEC-first regimens in which three cycles of FEC are followed by three cycles of Perjeta, plus trastuzumab and either docetaxel or paclitaxel, more generally summarized as:

• FEC followed by docetaxel + trastuzumab + pertuzumab

• FEC followed by paclitaxel + trastuzumab + pertuzumab

BarredOwl

I don't know Bird...the side effects aren't truly that bad...don't let my post scare you. It's well worth it and I'd never stop. I think I'm just tired. I had my port out in June and immediately started a new job at a new company. And once my port was out and it was "behind me" the exhaustion has set in, like I had run a marathon, and now it was over but gosh am I tired. Did that happen to anyone else here? I just feel worn out. My six month scan is next week and I had the dumb cyst thing going on...I don't know. I have to re-findmy pep in my step. My get up and go has got up and went lol..

Tres and Bird, I am also very tired. I ended rads on Aug 25, just had my (13th I think?) Herceptin infusion - I don't end until Feb. 2017. My diagnosis anniversary is coming up in a few weeks. Letrozole makes me hurt, I'm in PT for range of motion issues and shoulder pain, so the doc appointments are still going strong. This week it's a cholesterol baseline, a lymphedema check (that was this morning, all is good) , a DEXA scan and more PT for my shoulder. I work full time, I have two kids and am constantly juggling schedules. I never had any health trouble with anything until I was diagnosed. I think part of the exhaustion is that I don't sleep at night, and I am trying to go at a gazillion miles an hour like I did before. I remember last fall I had dark circles under my eyes, I blamed it on my body trying to fight the cancer. This summer they subsided, but I am getting that sickly look again.

So clearly, I am more than ok for complaining here. In a few weeks I am going on an overnight hike with some dear friends who make me laugh, I am looking forward to just being outside and away.

I have two questions regarding bone loss drugs, side effects, mets and AIs; I am 57 and was found to be osteopenic just before chemo began.

1) Is there anyone here who has taken AIs, was osteopenic at start, and has not taken bone loss drugs? I am particularly interested in learning about what alternatives I have to bone loss drugs. I worry, based on the rare side effects I got with Taxol and recently with an antibiotic, that I indeed may be one to experience the rare jaw and spontaneous fracture side effects of these bone loss drugs.

2) Does anyone know if the injectables work as well as the infused drugs for bone met prevention? Are all biophosphonates the same in this regard? What about the biologic Prolia, with respect to met prevention?

Zoziana,

I was borderline osteopenic when I began to take Aromasin in February 2015. I am taking Caltrate twice a day to stave off future bone loss. I will get another dexa scan to see whether or not that is working in February 2017. If not, MO and I may begin to talk about other measures.

6 month follow up MRI tomorrow. Fingers crossed. I hate Mri's. The knocking!,,

tres - fingers crossed for you

Has anyone experienced shortness of breath during the taxol treatment?

Kattis - yes; I was told it was because of low hemoglobin. And low hemoglobin is a typical side effect of taxol.

kattis - if you are experiencing shortness of breath during the treatment itself it may mean an allergy, and as musogirl suggests, it needs to brought to the attention of your oncologist and a possible switch made to Abraxane - it is also a taxane, but without the solvents that cause an allergic reaction. Some docs will try Taxotere first to see if you tolerate it better. Shortness of breath in the days/weeks after infusion is more likely to be decreased hemoglobin, but it usually takes a while for that to happen as your counts go down incrementally the longer you are receiving chemo.

Kattis - Herceptin caused my LVEF to go from 56 to 35 after only 4 infusions which caused huge shortness of breath and edema in my legs. Ask for an echo or MUGA just to be sure.

Tres if you're at DFCI they didn't post MRI results the times I've got them, they've always called first, and they'v all been negative. They seem to post after the call no matter what, so don't fret that it's a sign of bad news, because it's not