Topic: TRIPLE POSITIVE GROUP

Jul 12, 2012 09:28 PM nora_az wrote:

Herceptin from what I know works best in combo with chemo. Most all of us have had the same thing...taxotere, carbplatin for 6 sessions with herceptin and then herceptin for a full year. That seems to be the standard for a lot but not all of us.

Jul 12, 2012 10:16 PM nora_az wrote:

Oh I am so happy today. I can actually pull my hair back in a ponytail and not look ridiculous!!   Yeahhh    Ok so still a few of the hair from the bottom is pulling out but I can do it!

Jul 12, 2012 11:47 PM shore1 wrote:

Nora -- good for you! I miss my ponytail so much.

Jennifer -- sorry you are here, but as everyone has said, there is so much support here. I was dx last june and found bc.org one night in december when I was home alone feeling sad & awful over the holidays. The women here have helped me more than I can say.

Omaz - thanks for the link.

Is there anything that is given yet/now for early stage triple positive besides chemo, herceptin and tamoxifen/AI?

Jul 12, 2012 11:56 PM fluffqueen01 wrote:

Tonlee, some docs will give herceptin without chemo. My onc will do it if the women refuse the chemo part.

Nora and Omaz, we are the same height and similar weight. Maybe there is something to the new theory about tall women and breast cancer. I weighed about 190 shortly before diagnosis and had begun cleanining up my diet and starting to exercis. Then diagnosed. Lost 30 pounds rapidly and have kept it off. Now around 163.

Jennifer, not glad you are here, but if you have to be somewhere due to the diagnosis, this is a great place. Smart women who care.

Session 4 of my trial. A friend came with me, and we are having a blast. My normal hotel was only available for two nights due to the western film fair....a convention celebrating all movies and tv shows western. They brought in lots of aging western cowboy actors and actresses. Sooo funny. I was in the breakfast room with Lanie Kazan in her robe, although I don't remember her being in any westerns. Lots of cowboy hats and a couple men singing "good night Ladies" to my friend and I as we tried to get in to our room with a charge card instead of the key, which was in the room. We were giggling hysterically and yes, wine was involved.

For our final night, we moved to this gorgeous place called Graylyn, a massive estate that has been turned into a hotel of sorts. The grounds are stunning. Room is great. Oprah stays here when she comes to see Maya Angelou .

Now, we are trying to find Maya....thought we could Better read one of her books first, though.

Oh...and regarding chemo protocol....I had taxol,twelve, once a week. Not sure where it falls in the ranks of effectiveness, but my onc showed me studies that the international oncology group of some sort authorized. He says it is more common in Europe. A second onc who specializes in breast cancer had the same commendation, so I went with it.

Heading toward home tomorrow, stopping in Cincinnati at IKEA and Jungle Jim's for our last bit of fun.

Jul 13, 2012 02:50 AM, edited Jul 13, 2012 02:53 AM by Hindsfeet

largo..standard care should be for most (not all) tumors 5 C or over. But, my oncologist said for me the standard care for my stage 1a is chemo, herceptin and hormone therapy. I felt it was a little overkill for preventive medicine. At this point, I lean to thinking 4 oe 5 Herceptin treatments is all you need for small tumros that are node free.

Jul 13, 2012 06:24 AM, edited Jul 13, 2012 06:27 AM by vballmom

shore1 - I felt the same way (actually I still do) about AC/TH vs TCH. I feel out of place here because of my regimen.  I actually did my research ahead of time and asked my oncologist about my options. He acknowledged that TCH is a good option, but felt that the studies on AC/TH are much larger and the stats still show AC/TH as being the better option, as dancetrancer mentioned. I also had a positive node, which seems to lead some MOs to choose AC/TH.  I knew I had options - to trust my doctor, to override him and choose TCH, or to find a second opinion.  After three surgeries in a month and all the research I did, I decided to trust him.  I also didn't want to drag the process out any more. 

AC was imho pretty nasty.  I just finished.  I worried myself sick before my MUGA on Monday.  My EF came back at 60% so I can move on to Taxol on Tuesday.

Nora, Omaz, and Fluffqueen - I am of similar height and weight, too!  I am determined to drop 20 when I am done with chemo.

Jul 13, 2012 07:02 AM, edited Jul 13, 2012 07:18 AM by ashla

Jul 13, 2012 08:12 AM vballmom wrote:

Oh my goodness, Liz!  There is a reason we hang out here...

Jul 13, 2012 08:41 AM ashla wrote:

Jackboo,

The whole friends and family thing has been a real revelation likely for every one of us. The friends and family I would have expected to be at my side have disappeared and some new what I would have called acquaintances have been in contact regularly. I still haven't figured out long term how I feel about those who weren't there the first time I've ever actually really needed their support but I do know that. I will never ever forget those who stepped in to fill the void.
I honestly don't believe it's a reflexion on us but on them. Just as when someone is nasty to us for no apparent reason. They likely have their own problems that have nothing to do with us actually.
The only people who can truly relate are those who've been through this nightmare themselves. Others can help but not in the same way.

Jul 13, 2012 09:10 AM lago wrote:

evebarry the information I posted about standard care form smaller er+/pr+HER2+ tumors is from the NCA site. It indicates that tumors under.5cm (not 5cm) with no nodes may or may not need chemo… unless I'm reading this incorrectly. This is not to say you didn't get the correct treatment but that's what the NCI recommends.

Jennt28 I know a gal who did. She like me still has her port and kept it through Herceptin only. My onc likes us to keep our ports for 2 years anyway since after the 1st year PFC there is a spike in recurrence statistics. My treatment center will not put the port in the same place once it's been removed.  So my recommendation is keep it for Herceptin.

Liz sorry about the frienamie situation but it happens. Excuse my language but what kind of sick f*ck is this woman that "hopes your cancer comes back." She is not a person to be friends with. Good riddance. (Would be funny to text her that video back though ). The nurse is a bit clueless but sometimes you can't fix stupid. Her problem not yours. BTW my sister and I still haven't spoken since 1 week post my BMX. This September will be 2 years. Hard to believe we were close.

Jul 13, 2012 09:21 AM nora_az wrote:

Liz,

I have a friend like that too. She is really into cancer prevention/awareness and I honestly don't think she realizes what she says when she says it to me. Granted she did have malignant melanoma 6 years ago which was just cut out, no nodes or anything and she so far is fine. It hardly is the same to go through having a BMX, port, chemo etc. She still has the fear though so I do totally understand that. When I was getting ready for my VATS surgery (for lung nodules) last month, two days prior to it she says, "I just got a text from my friend in England, she's go stage IV lung cancer"  Really?  OMG I was stressing. She then later on called me after she realized what she had done to apologize.

 Omaz, Fluffqueen and Vballmom

I wonder if there is some sort of connection with tall women? Interesting. I had dropped a bit of weight about 2 years before diagnosis, started getting healthy, running on the treadmill etc. I felt I was in the best shape. I was 47 at the time of diagnosis. I just turned 49. I was in disbelief because I didnt understand how I could be having something growing like that in me when I felt so dang good, inside and out!

Jul 13, 2012 09:54 AM jackboo09 wrote:

Lago: Just seen your reply. Thank you for putting it so clearly. That made me smile. Sorry to hear about the rift with your sister. Life just sucks sometimes doesnt it!

Liz

Jul 13, 2012 10:40 AM TonLee wrote:

I'm 5'3.6"....but my cousin (also diagnosed) is much taller....hmmmm.

Vball...glad you haven't had any heart complications.  :) 

I think the one of the most annoying things about this whole ride for me is..people act like I should just hurry up and die already.  I get the, "Well, how much longer do you think you have?"  question all the time....with the sub-text being..."Look I'm tired of thinking about you dying...would you just hurry up and do it!"

A few instances.....I haven't seen someone in awhile and we run across each other, they act pissed off that I'm fit and look healthy.  (In most cases more fit and healthy than themselves.)  I know a couple people who think I'm LYING about having breast cancer.  LYING.  Can you imagine?  Though they'd never say it to my face, I can tell by the expression on theirs they don't believe it whenever someone asks me about it in front of them.

Oh well.  I just smile and move on.  I don't have to prove anything to anyone.

The worst was a gal pal with a pretty popular blog.  We spoke on the phone for a couple hours after dx.  I read on her blog a few days later that ...."While she has a great attitude, and will fight this, she knows the end has come.  We have to resign ourselves to the loss."

WT?

So I wrote a blog titled.  "Not Dead Yet."  lol

Jul 13, 2012 11:07 AM, edited Jul 13, 2012 11:08 AM by Eileenohio

TonLee, Oh my goodness.. I am shocked and angry that anyone would say such awful things to you. What is wrong with these people?   We do not need thoughtless insensitive people when we are dealing with BC.  I am a very sensitive person,comments like that would upset me and make me cry..   BTW  I am only 5' 3 1/2"..  

Jul 13, 2012 11:12 AM ashla wrote:

Okay ladies...
Last week I asked my new MO if it was okay to get a manicurem go swimming , eat in salad bars and all that stuff even though both my RB and WB counts are still suppressed.
He gave me the go ahead for all but the swim in a chorinated pool . Said I had to check with the RO since I was just a month out from rads. Saw my RO this week and she gave me the go ahead for swimming.
Saw my breast surgeon who placed my port and asked if it was okay to do upper body work . He gave me the go ahead saying it was sutured in place.
I had asked my cardiologist in March and he said not to rush in right after chemo and surgery ...thinking I should give my body time to rest and heal... but it was okay with him.

Did I forget anyone?