TRIPLE POSITIVE GROUP

pbrain, i am another that appreciates greatly the info you know about how the AI's and tamoxifen works... i just wish i could remember it once and for all! i need to go make a note of it and stick it right next to me, for when another woman needs to know! Derrr..blank.

that is a tough choice, Rozem, i heard those shots were painful? its bad enough it freaks us out to have cancer, but to have to make decisions about it? the worst. i love this thread. if anyone has some time, can you please find Bexter3, and encourage her? she is triple positive, but is having a recurrance and has neck and face lymphedema, and a not very understanding family. a pm letting her know you care would be tremendous. she is on the "New cancer?Recurrence? Scared crazy!" thread. please help

LOL Robin. Maybe after waxing she should vajazzalize! LOL

Kathec I'll try to find her. 

Lago I hope arimison is better for you. 

Much love to all. 

hi all

I've been off for awhile and just catching up. Been feeling fairly tired in the morning these past few days - especially today!  Once I push myself to exercise I seem to get energy back

Your posts have been hilarious!  Tx for the laffs!  Chats about the "wicked garden" as I call it have brought years to my eyes!  I am a bit lighter down there and don't mind a bit. Sure makes it easier for when I want to swim!  No styling required !!  Lol

So over that past few days I have heard so much from people trying to be helpful. Don't eat dairy which includes no milk in cereal. Don't eat anything with glucose. Don't eat meat. Don't eat carbs. Ok. Am I supposed to be a rabbit?  What do I eat?  Can I eat?

I recall that we have covered this before but would appreciate your sharing what your diet consists of

Honestly I cannot become a rabbit and have continued to eat everything in moderation. I have dairy, I eat cheese, I have meat 1-2 x per week, I eat fruit ( yikes they have sugar) and try to eat veggies though I'm not as successful !  I do eat pasta and have my junk food. I even ate smoked meat and chopped lover with cold slaw the other day. I even eat sugar frosted flakes every so often

Those folks have me so freaked out that now I'm scared to eat anything but bird food !!

Help!!

Hubby and I are going away for a few days starting tomorrow night until next Monday. Just a short jaunt to Niagara Falls to getaway. Hope to get into a swimming pool, relax, see a play on Niagara on the lake (so unlike us) and est in restaurants!  Oh oh!  That might kill me for sure as there will be a few burgers in my future over the next few days!  Even a pizza !

I saw some comments regarding work. I am a national credit mgr with a staff in Ontario and Quebec. While I absolutely love it, it is very stressful. Long hours including weekends. Multiple deadlines. I wanted to keep working but after listening to my MO, I'm glad that I stepped away. Fortunately I have a very good  benefits plan so am now on short term disability for which I am thankful

Today I meet with the Canadian cancer society with the hopes of volunteering. I need something to make me feel that I am contributing and to get me out of the house!

I hope that all have a wonderful day !!!!!

Footballnut you don't want to be just a survivor,  you want to live too. You know what's unhealthy. Don't eat that shit regularly but some thing in moderation are OK. Some (like crack and heroin) are not. Most important things you can do is exercise and keep a healthy weight. Try to stay away from processed foods, especially processed sugar. Yes cancer cells use sugar to grow… just like normal cells. You do need some sugar in your diet but stick to sources from fruit rather than processed white sugar or high fructose corn syrup. No dairy not good for the bones. I eat some cheese but yogurt is a better choice (if it must be sweet, sweeten it with natural sources like fruit ). Keep red meat to a minimum, keep it lean. BBQ isn't good especially if there is charred stuff. Don't eat the charred stuff.

BTW I had an Italian sub last weekend (talk about bad) and I do eat pasta (usually served with lots of veggies) but I don't eat a lot of bread. I'll also use spaghetti squash instead of pasta at times.

Cheese, keep portions small. Very dense food and therefore high in calorie.

vettegirl go for a 2nd opinion. I just lost a friend of mine who recurred 2 years PFC. She was HER2+, 6.5cm, grade 3 tumor and did not get complete response. She did have it in her nodes and also did radiation. She did not do Pejerta initially because it wasn't approved for early stage. FYI I don't think you lose your hair with Halaven. I'm not saying you should do it nor am I saying because my friend recurred  you  will. She was not hormone positive so you have that treatment going for you… but if you decide not to do the additional chemo you need to make up your mind now that you must do the complete treatment of hormone treatment. Your onc might recommend 10 years since your risk for recurrence is high. I would discuss this with her/him.

vettegirl I agree w Lago...when I went for a second opinion I asked the question on what to do if I did not get a good/complete response from chemo.  My DF onc said she would recommend me for a clinical trial  - perjeta wasn't approved at the time so if you did not get in neoadjuvant rx I would seriously consider maybe getting it adjuvantly - or they could recommend something else. There are so many new/targeted treatments I cant keep up.  You are hormone positive so that is a great thing.  I would go for a second opinion for sure.  There is a member on here whos onc is doing a second course of chemo because of this very reason and they seem to be very forward thinking.  PM me and I will give you the screen name and maybe you can reach out to her

I really haven't changed my diet much - I was already doing low carb, most all my carbs come from veggies - no sugar, lean meat due to my diabetes.  I do eat some fruit but stay away from the high sugar content fruit - again for my diabetes.  The only real thing I have altered is that I am now watching out for soy and have reduced my diary.  Again I was doing the majority of the things recommended to reduce your risk for BC for the last 3 years and I still ended up here.  I, like lago, use spaghetti squash alot for pasta substitute - in fact i like it much better now.  I do allow cheats now and then in my diet as then I never feel deprived.   I mark a cheat day on my calendar once a month.  I allow myself any meal that I want that day - that usually calls for going out to eat - my GP suggested this to me.  In the beginning I would order something really carby on that day - funny now I rarely order anything different - although I might have a bite of someone else's desert lol.  I am using that same plan for this also.

Cute story about my GP, who I have been seeing since 1987.  When I got diagnosed with diabetes my AIC was 7.9 - not horrible but definitely diabetes.  Between my GP and my endo they tested me about every 3 months as I persuaded them to give me time to work this out with diet as I didn't want to go on meds.  After 6 months my A1C was 5.2  - that is a non-diabetic A1C.  I went to see my GP right after those results and he was so happy to see that number.  He sat down with my in the exam room to tell me how proud he was of me and then he said (you must say this in your head with an Indian accent)  "Lienda, some people have dragons.  These dragons can be asleep or awake.   Like me, I could have a cancer dragon sleeping in my body and maybe it never wakes up.  You have a diabetes dragon - it woke up and now you have put it back to sleep.  Don't wake it up again"  I just loved that.  When I got my diagnosis of BC I stopped in to see him and said Dr Golzari - I have another dragon - he hugged me and said - lets put it to sleep for good.

Hi Ladies,

Just saw this article: 

http://www.cancernetwork.com/asco-2014-breast-cancer/anti-her2-combo-fails-improve-outcomes-early-breast-cancer

By the way, trastuzumab is Herceptin.

debian, no. Your not a lot of women choose not to reconstruct. There are a couple of threads on here about no reconstruction. Sorry I can't link on this phone. Besides if you choose not to do reconstruction, you can always wait and do it later when it fits your schedule. So you do have choices. 

Much love

Ah shucks, thanks guys.  I like to explain things.  I think that's why I love science and math.  They can be scary, but they don't have to be confusing.

Football, now I'll throw in more angst.  There are people who say (and these are MDs) that we shouldn't eat anything healthy during chemo because we might make the chemo not work.  As an example, my chemo nurse Amy asked me about my diet at my chemo learning appointment.  I of course mentioned my grand love of cheese, cheese doodles, cheesits, fritos, wine, etc. (I really do eat better than that...) and she didn't seem in the least bit horrified.  But then I mentioned that I make sun tea with decaffinated green tea and easily drink a gallon a day.  No sugar, just good old green tea.  She told me I'd have to stop that and my NP said the same thing, but that this was just during chemo.  So my one good habit slid away and I have to get it started again. 

I say eat what tastes good.  Get protein.  I know I didn't eat enough of that and I was pretty weak, but I'm just not a meat person.  I have my moments, but can pretty much go weeks without it.  I stuck with carbs and that probably wasn't the smartest, but not much tasted good to me.

Oh, and Mom, your MO will probably say all the selected receptors are blocked by Tamox, but I'd like to see proof of that.  I'm not trying to scare those taking it, I just doubt we always block all the receptors all the time.  Just like I doubt the AI makes every single cell that is able to no longer make estrogen.  I've been on my AI since last August, and I just started to develop my very first hot flashes (how do you guys deal with these things???) which makes me think it is working better now for some reason...why, no clue...
 

Debian, I would not do reconstruction if I some day need an MX or BMX.  I don't think I'd want to bother.

Speaking of receptors, I've had this tab open since last night.  This is a subject that troubles me.  Androgen receptors.  I assume the majority of us didn't have androgen receptor testing done on our tumors or maybe it's done but not reported? 

Androgen Receptor Inhibition in Breast Cancer

excerpt: 

Androgen receptors (AR) are even more widely present in breast cancers than estrogen receptor alpha (ER-α) and progesterone receptor (PR); up to one-third of triple-negative breast cancers (which lack ER-α and PR and do not express HER2) retain AR.¹ While the exact role of AR in breast cancer remains controversial and may differ in the various types of breast cancer, it is generally well-accepted that, as with ER and PR, the presence of AR is indicative of a more favorable prognosis in women than tumors that have lost all three steroid receptors. Nonetheless, similar to ER, AR may serve as a target for therapeutic intervention because tumor cells can rely on these receptors for survival and proliferation.

Link to full article: 

http://www.practiceupdate.com/expertopinion/951

vettegirl ~ It's my understanding that it's actually not very common to achieve a complete response to chemo when ER/PR receptors are present {even with HER2}. I did not have a complete response and I know there are other girls on here as well  {McKatherine?} who also did not have a complete response to chemo, and they seem to be doing well. I know it increases the chance of recurrence a bit, but by how much I wonder? I know after chemo, my Ki67% dropped from 35% to 1%, do you know what yours did? Upon reading that, I found research that states that recurrence rates for people with a ki67% which decreases from high to low are very similar to those who have achieved a complete response.

With all of this talk though, I am now nervous about the fact that I didn't achieve CPR. Maybe I should have had more chemo? It wasn't even suggested to me though. :~/ Gah. And THEN I think about all of the people who have chemo AFTER surgery, they literally have NO idea what it did in their bodies, which is also scary. Cancer is such an effing mess.

It was presented to me that hormone therapy was essentially THE most important part of treatment {for me}. I don't think many people who do neoadjuvant go on to get more chemo if they don't achieve pCR, especially considering that the percentage of people who DO achieve pCR is rather low {I think like 30%? But that was before pejerta for HER2, so people in that population have higher rates}, however, I imagine it all depends on your individual stats and what exactly was left. If what was left was ER/PR+, but HER2- and lower grade, it's unlikely that additional chemo would really be the best choice as that's exactly the kind of cancer that responds to hormone treatment, but not so much to chemo. Throw in the whole SOFT/TEXT data on top of all this and I'm just SUPER confused...if only we all had those crystal balls.

Yes, it is very confusing in part because there is no one answer. We are obsessed with trying to unravel it all to understand what is going on, and then to make sure we are doing the best treatments.  I think my onc thinks that with the Herceptin I was on combined with tamox I'm on now is protection enough during this perimenopausal stage. She didn't think it necessary to shut down or remove the ovaries because of QOL issues. However, if statistically AI works better, then, I think I should switch over. Someone needs to write a paper, "In Defense of Tamoxifen" to explain why anyone should remain on it. 

What happens to our old tumors? Can they still be used for testing years later?  I don't think I ever had Ki67 test and I'm wondering if I should have. Part of my tumor was sent to Italy for the Aphinity Trial (Pertuzimab after surgery- double  blind, don't know if I got it), and they probably will run all those tests for their own purposes, but won't share it with me.

Rozem ~ I am on zoladex, so yes, ovarian suppression. I do have side effects with it, but I never came out of "chemopause" despite being 35 {maybe b/c I started the suppression rather quickly afters stopping chemo} so I was already having a lot of the same side effects. I guess I have more joint pain and I feel pretty old when I wake up in the morning, but so far it's not awful FOR ME. I will definitely talk to my onc in July and see where he stands as far as switching me to an AI. I feel like he will recommend staying on tamox for a while {due to the protective benefits for bones, heart, and cognitive functioning}, but who knows. It will definitely be interesting to see the actual results of the TEXT and SOFT trials, in addition I would like to read the actual study so I know exactly what the protocol was.

I think you are right, if there is a large tumor load after neo chemo it would be beneficial to try another therapy regimen, especially if there was no reduction in the ki67 status. I guess I just have to be confident in my doctors and the treatment I have received because none of us knows what's actually going to happen.