TRIPLE POSITIVE GROUP

OK to many Susans one will have to change u'r name----And I am of no help at all--al I know is that I got the red Devil because I peed red that's it--I had almost 2 yrs of different chemos and finished with like 6 more months of Herceptin. Hell I've been going to a Card for over a yr and just found out I have an aneurism , he insisted he told me, but I don't listen, I think about did I tape a show I want to watch, like I said I've had D for 6 and 1/2 yrs every test and procedure has been done, and I just go along--I get a test next week to make sure the an is still the same--and echo so when she called I said OK, Ok ok and this woman started laughing like she never heard that before Well anyway the new Susan I'm sorry u'r back here but like I said these women are phenominal (sp) they will guide u all the way. As u can tell I know nothing, in fact when I was talking to my Card aout my sleep proble, I assured him I was not a necrophiliac (sp) believe me I knew the second I said it I knew that wasn't the right word, but after he got control of himself he understood wht I meant. So I'm not good at Dr. things.

And the old Susan yea I bet u can't wait to see him, go that last time with a gorgeous guy on u'r arm and smile like u really mean it.

BTW I think someone earlier mentioned something about the higher percent of hormone positive the more likely the ESD/EBD will work. I would think size also has to be a factor. In my case my tumor was only 30% ER positive but the invasive part of my tumor is 5.5cm. That means that 1.65cm of my tumor was hormone positive. That's like a 2cm tumor being 83% ER positive (or a 1.65 cm being 100% ER positive).

When discussing percentage size also needs to be discussed. Knowing this is the reason why I'm still on this ESD that is now also a BSD (Bone Sucking Drug) due to osteoporosis now.

Edited

Well camillegal if we all weren't so full of shit maybe we wouldn't have our crappy problems. (I'm and IBS with C instead of D that I handle mostly with diet). Gastrointestinal things are tough to figure out. Sometimes they never do. I mean I have IBS so great I know what it is but who cares if you can't fix it and there's not a lot I can do about it.

Yes I guess we're stuck with what we're stuck with, but it is somewhat embarrassing when I'm out and even tho I wear depends it goes thru, cuz mine is explosive so when I'm with people I just stand there no sense in moving it's worse hahaha--the really bad part is I'm not as embarrassed as I used to be so I come across really gross LOL 

Thanks for all the great information ... love these boards!

Lago ~ Are you sure that you didn't mean that someone mentioned that HIGHER percentages of ER+ = more benefit/ better response from tamoxifen or AI? Only asking because I would hope I would be getting some good benefit from tamoxifen for my 100% ER+ tumor that was removed! :~)

Texas ~ I have been on Tamoxifen for almost a month, as well as Zoladex injections, which is also an option instead of Zoladex with an AI, and so far I am doing alright. I do tend to stay active and try to exercise and I think that helps, but I could be wrong. I do have some warm flashes, mostly whenever I get "emotional" and I have a little bit of joint pain, but that's what the exercise really helps. I think SpecialK is right, most of the people who post on these boards about tamoxifen are here asking for reassurance about side effects, the people that aren't having them just aren't posting. The reason for Zoladex with tamoxifen instead of an AI is this, tamoxifen protects the bones, the AIs really harm them. In addition to that the results aren't in yet on the SIFT study, which is testing which is better tamixifen alone v. tamoxifen + zoladez v. AI + zoladex.

As for me, I have my radiation simulation next week and I am TERRIFIED! It seems like whenever something new is about to start I go into a pretty rapid anxiety spiral. So scared of the sim {I have never been in a CT machine}. So scared of rads destroying my skin and hurting my chances of recon being successful. BUT more scared of not getting rads and increasing my chances of local recurrence. I was really enjoying feeling "normal" between surgery and this - if normal can be considered having at least one appointment every.single.week, getting herceptin, obsessing about the chances of LE, taking tamoxifen and receiving zoladex injections! Ha, so funny what's "normal" now. Sigh. Stupid cancer.

Sorry Mama u have to go thru all this... For most I don't think there's a new normal, I just call it what's next.

Moon it's an awful feeling t least when I'm home I don't make it to the bathroom, but I'm home there are no feelings or signs that I have to go, it just explodes out, At least now I get it mybe a day or 2 at a time, but a couple of times I had it for weeks spending that time in the hospital, it was constant and they still couldn't figure it out. Whatever meds I have been given don't do much good, I do notice I get extremely exhausted and my electrolytes are all off I do take potassium and mag all the time tho, so that helps a bit--It's just funny that no one can figure this out.

Susan again I say there are no rules with this horrid disease.

Twin, relax.  The sim is bizarre and kind of fun.  They make your mold by laying you on a pillow filled with styrofoam beads.  When they feel you are in a good position, they suck all the air out of it and that is your mold for the entire treatment.  The CT scanner is no big deal (at least for this major claustrophobe) because your head sticks out of it.   They might lay some BB's over certain areas, and then your RO will come in and help align things (based on where your organs are--mostly your heart and lungs, because they can see them with the CT).  The goal is to line you up each day with the information they have to make sure the least amount of radiation is hitting those organs.

Next, for me they just marked me up and up and up with a Sharpie and stuck some stickies on me.  I never got tattooed, but my boss did and she says it's not a big deal.  

After that, just use the deodorant and skin products they tell you to.  You'll see your RO once a week and I promise you they have lots of ways to prevent your skin from breaking down or getting nasty.  It is a different kind of wave energy than the sun, so even if you are prone to sunburn, you might do just fine with radiation.  My RO told me he saw his African American patients might struggle with skin issues more than his pale Caucasian patients.  

You've made it through the tough part, so do your best to just get through this.  For me, it wasn't so bad, but I was tired.  You will be too, so carve out some time for sleep!

I remember rads as being like a mini vacay from chemo--one time I was with my RO--who I really liked and the phone rang and he told me it was my BS and I heard his end of the conversation and he told my BS he was with me and I heard yes I know, Oh rally yep, I do--OK talk to u later, and I said he told u I was crazy right--he started LOLing and looked at me and said yes he did, but u wouldn't mind it. The problem was no one took me very seriously until I was really showing signs of something. Oh well, that still seems to be my problem.

That is great news Ella..thank you for posting!

and now for some laughs: www.utrend.tv/v/cat-dog/

I hope the understanding of Her+++ will help them find better tx for all the other subtypes! May it happen fast! We are losing to many wonderful people to this ugly disease! 

Hahaha----Our cat was first and we have a good size dog, but that cat would not let the dog take over and the dog got it really fast--now there is no problem but at first my cat would go right up to the dog (for no reason) and slap him across the face and hiss--she never had to do it again.

Love the video. My 18 year old cat essentially took over the guest room-the dogs are not allowed past the door. Ever. When she enters the den the dogs are banished to the yard with one shrill meow. 

The worst to first is nice-except for those who were taken off Herceptin due to heart issues. My surgeon tells me that 20 of the 52 weeks would be fine in Norway. I get really anxious when thinking about having my port removed. I set a target date for this summer @ the 2 year mark. If I am still on one of th estrogen sucking or estrogen blocking drugs. And have not given up due to side effects.