TRIPLE POSITIVE GROUP

Well, I'm married with 2 kids.My daughter will be turning 13 the end of the month (I'm terrified!) and my son just turned 8 on the 11th.My husband and I have been together since we were 19 and will be celebrating our 10th wedding anniversary with a vow renewal this September.

Last year I was playing on a roller derby team and having the time of my life until I felt a hardness (I wouldn't even really call it a lump) on my right breast. I thought it was hormones since I was getting my period, so I waited and it still didn't go away. I went to the doctor who tried to pass it off (You're only 32 and no family history!) but because there was obviously something in my breast she sent me for a mammogram. I really thought it was nothing. Noone in my family has had breast cancer, I never met anyone with breast cancer,I was totally clueless. When I got the mammogram I could see the nasty thing in my breast, it looked like something from a science fiction movie. They kept wanting to take more pictures and then they wanted an ultrasound. Once they did the ultrasound they had doctor/radiologist/whoever look it over and she came into the room and took my hand. I saw her lip was quivering and I knew before the words even came out of her mouth. She told me that normally she would never tell someone this, because I still needed a biopsy to confirm, but in her professional opinion what I had was cancer and to get ahold of my doctor and make them set me up with a surgeon ASAP. I don't really remember leaving the office that day, I kind of remember a nurse half carrying me out the door.

Anyway, they tried to send me to the same surgeon that removed my gallbladder earlier that year (his speacialty! not bc!) for a general consult (not a biopsy) a month later. My sister is a nurse and she was having none of that.She got ahold of someone who specialized in bc and they squeezed me in a week later. Even he tried to tell me no worries that it was probably just an injury from derby, that I was young and with no family history it was unlikely to be cancer and he wanted to do his own ultrasound. Once he did that his face changed and he did a biopsy right away. I got the call when I was at work on July 10th telling me I had cancer. I am stage 3 and I had more than 5 tumors in me, the main one being over 6 cm at the time of my mastectomy.

Since then it's been a rollercoaster of emotion, pain, sickness, etc, just like everyone else. AC was the absolute worse for me, I thought I was going to die. Taxol was ok except for the terrible leg pain. Radiation sucked. I'm still on herceptin and so far my heart is coping with it, I get cardiac ultrasounds every 3 months. I just started tamoxifen which is gross. No more roller derby for me, so I'm still trying to figure out what to do with my self. I use humor and sarcasm to get through my feelings, sometimes it works and sometimes it doesn't lol.

Could anyone tell me why some of us are treated with Adriamycin and some aren't even though we have about the exact diagnosis? I understand the adriamycin combined with herceptin is a little more hard on the heart. Is it just each doctor's preference?

Oh Beth u'r so young to me that horrendous, but it sounds like u weathered thru the eye of the storm now for the rest. U must have so many feelings about this, but please be patient so many do well when things settle down. But to have small kids has to have been so ruff on u and still is going thru all this. I'm so sorry. There will be more help on how to handle all of this and many more ladies tohelp--I just don't know that much--other wise I would- My theories are all based on my findings--certainly not official--but eeryone is very caring here too, so I'm sure that will help. 

Liz, adriamycin is hard on the heart muscle (as opposed to vessels or valves) but only in some people.  It can cause permanent heart damage in a small percentage of women.  I opted out of it when my MO originally proposed it because my maternal grandmother died of heart failure, which is a disease of the heart muscle.  They don't give adriamycin and herceptin at the same time because both can be hard on the heart muscle. 

Also, someone on here said that the adriamycin protocol is more common in certain US geographic regions.

My MO then proposed taxotere and carboplatin with herceptin, which seems to be very common.  I had one round of that and ended up in the hospital for a week.  I was a sick puppy.  So he moved me to weekly taxol with herceptin which I tolerated and finished the 12-week regimine.  I don't think that is a real common approach, but I was getting radiation and hormone blockade, so I think he felt ok with it.  Lago has mentioned that the weekly treatment with Taxol isn't common because the oncologists aren't making as much money on me as the 3 week patients.  I do see that being there every week, I used up a lot more resources than most bi- or tri-weekly patients.

There are some on this board who have done the 4 weeks of FEC and then 12 weekly taxols.  I think that approach is more common in later stage cancers?

Hey everybody, where is Lee A?

Hello all

I don't post on here too often, but read a lot :-)

Down here in Australia it is common for women who are +++ to get FEC and then either three weekly Taxotere or weekly Taxol.  Taxotere or Taxol seems to vary a bit from state to state.  It's not as common to get AC here.  I think the FEC-T combination is also pretty common in the UK

I also had a pretty severe reaction to the Taxotere, but ended up only doing two of the three cycles and then stopped - I think it would have killed me if I'd gone on :-)  My onc was fairly happy for me to stop - he said I'd get more protection from the Herceptin.  Here in Australia you can only get Herceptin if you do chemo - and as it's completely paid for by our government, pretty much everyone does the chemo too.

Trish

Welcome Beth, and Angie,not sure if I said that to you before! LOL. Cami, does your med center have a website for patients? If so, sometimes you can go to your history, or past appts and there is a list of meds given, even chemo and doses. Thats how I kept track. They just changed my site up a bit, now I have to learn it over again, but.I see the info is still there. Liz. There are a lot of reasons as to what the chemo is that they give. Some.of it seems to depend where they trained. Kind of random! LOL. They had to adjust my tch because I ended up in the hospital (hello Pbrain) LOL

TO ALL ON THIS BOARD, MUCH LOVE!

Moon I do have a website for the hospital, bur I admit I tried it once and It didn't work for me--beside all my work was done at another hospital anyway. So....

Ashla that's so cute, cuz as u know I always say I'm not good for medical but I'm good for relaxing and stress-freeing my mind--some people call it lazy OK, but I call it mental freedom--that's what has helped me more than anything and I do things on my own, LOL

BethCon it eventually does get better. I think it was about 2.5 years from diagnosis that I stopped feeling like a cancer patient granted by that point you'll probably resent being on Tamoxifen. I know I want off the Anastrozole (I call estrogen sucking drug or ESD). I hate these doctors that dismiss women because they are so young and have no history. No history only means you are at higher risk. It doesn't mean you are low risk. I too had no history. My lump was never felt either although I did have a dense area. I think those of us with dense tissue, it's not unusually not to feel the lump no matter how large it is. Mine was 6.5cm with the non invasive part.

LizA17 Adriamycin has been around a long time and is a bit more effective.The Taxanes are newer. Both are valid treatments and both have thier own set of special SE. A friend of mine treated at my center had terrible neuropathy with taxotere. Her onc took her off that and did Adriamycin instead. She was only hormone positive.

Pbrain I didn't put it quite that way It is more time consuming to give Taxol weekly. Can you imagine if every breast cancer patient was treated weekly. I think all of our costs would go up because of the need for more chairs, nurses and doctors!

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Sorry not so active. Just busy with work trying to recruit for the ACS: Making Strides Against Breast Cancer event in Chicago. Just letting you gals know I'm still here.

It's about time too.

Where is eerybody? this is usually popping crazy--Either everyone is so busy or what???

tonlee - hi!  Glad to "see" you and also that you are out there getting it done!  Miss you too!

Tonlee! Good to hear from you. I hope it gets better for you fast. Shasha, good luck on your trip. This board was a great support for me and still is. Much love to all.

cypher  you may be ovulating. My mom had a hysterectomy but they left one ovary. She went through menopause at 51… she got some hot flashes. Is ovulating bad? Ask your onc about this but this is exactly why you are on Tamoxifen and not on an AI

Good news.. "Osteoporosis Drug Stops Growth of Breast Cancer Cells, Even in Resistant Tumors, Study Suggests"

http://www.sciencedaily.com/releases/2013/06/130615152341.htm

ashla - awesome links, especially the osteoporosis drug info since it would seem to be available very soon!  Thank you for keeping us informed.

Ashla, Thanks.