TRIPLE POSITIVE GROUP
Comments
-
Robin only about 25-30% of breast cancers are HER2+ (includes triple positives and those who aren't hormone positive). So once again the statistics are less. I did have a small amount of LCIS in the other breast but I have no idea if it was triple positive. I don't think they test that stuff. The big invasive tumor trumps all non-invasive.
0 -
So it appears I really hit the cancer soup jackpot. NOT. Time to start watching out for random busses in my neighborhood.
Thank you!!0 -
Hello Ladies
Just wanted to give an update my D & C and an Hysteroscopy was today.. Well no polyps or cancer everything is ok doctor said YAY...So apparently The spotting I had last month was my monthly coming back after 2 years of not having it. What a relief.....
0 -
Good news Ang!
RobinLK I haven't developed my "lighting almost never strikes twice in the same spot" speech so please read my old "shit doesn't happen" speech below
:shit doesn't happen speech:
Some people win the lottery and become millionaires too but do you
really think that's going to happen to you? Shit happens. Sometimes
good shit, sometimes bad shit, but most of the time shit doesn't
happen. Don't assume shit is going to happen to you.0 -
Lee, sorry, I meant to answer you on my last post, but was at work and got distracted. What is your hematocrit? High lactate dehydrogenase is usually caused by the breaking down of red cells. Has anyone tested your folate or B12? I was just tested for folate after having normal levels before starting chemo and it was seriously low. I didn't have an LDH test, and B12 was normal because I take it sublingual once or twice a week.
I seriously know chemo messes with the B vitamins. They are water soluble and so easy to lose. Do you have more of your red cell parameters (MCV, hemoglobin, hematocrit...etc.)?
0 -
Iago, lol... I like it! Was basically deferring to my warped sense of humor in an odds comparison!
0 -
ang - GREAT NEWS!!!!
My oncologist told me no more Tamoxifen due to the huge polyp I grew on it. I'm on a drug holiday right now until we decide what else, if anything, we will pursue.
0 -
Jane-I startd with an EF of about 65. Down to the 50s and back up and down. Had 2nd mastectomy and restarted Herceptin. Dropped to 30. Or almost 30. Stayed there for a bit despite cardiac drugs-ACE, beta, aldactone-standard drugs. Felt like crap. Could hardly walk and breath at the same time. Then started to come up slowly, non-treadmill stress was at about 40. Started slow slow exercise-no cardiac rehab in my small town. I am dean of health for a university-so am well managed (AKA they boss me around) by nurses, paramedics, RTs, etc. The medics are on my case daily. EF Now up to 50. Cardiologist almost had NO HERCEPTIN tattooed on my forehead. I was in decent shape before this started-now still get SOB and so so tired. Think the fatigue is everything else though.
0 -
Bren58, I finished chemo (TCH) in August 2013. All my test results are online too (scary at times!). My doc has tested my LDH for the last couple of months and they have been high, 258 the first time and then down to 245. I saw where my LDH was 195 when I still had my tumor pre-surgery! My doc said not to worry as chemo messes with your body for a while after you finish which accounts for the higher numbers. He expects the values to drop over the next few months.I hope so!
Annie
0 -
Annie, are you still on Herceptin? Thanks for your input regarding your LDH levels. I found a post here at BCO mentioning Arimidex possibly causing increases in LDH levels. After two nights of fretting about this I have at least 30 screenshots about LDH levels on my desktop.
0 -
Lee ~ CALL YOUR DOCTOR!! I hate to see people fretting over something that could likely be put to rest with a phone call.
And, yes, I need to take my own dang advice about that at times. haha.0 -
Yes, still on Herceptin until May 2014. I'm also on Arimidex so maybe that is the culprit. Either way, my onc isn't worried so I'm trying not to be too! Let me know what your doc says when you question him/her...and I'll do the same.
Annie
0 -
Hi Ladies-
Since I have been such a lurker these past 8 months, I figured I needed to get my butt on here and post. I usually check the boards later at night when my little girls go to bed. So, now, alas, I find myself on my computer with a keyboard. I want to thank all of you. Like REALLY thank you. As I said, I have not been a contributor to the Triple Positive Board, but rather a regular, nightly reader (this is by far my FAV board I follow). I have gained a great deal of knowledge from all of you women. I live in the Milwaukee, WI area (brrrr!) and am a part of a Facebook BC Sistas group for women under the age of 40 that I have found to be a great resource, too. While they are a breadth of knowledge and great support group, nobody compares to you all with your intelligence, positiveness, wit, and humor (especially PBrian, Lago, Special K, Camillegal, Bren58, LeeA, TwinMamaHeather, Moonflwr912 (Port Washington! Hubby and I stayed at a B&B there last summer:) I'm from New Berlin, NickyJ, and Dancetrance).
I am so happy to say that I am on "the other side" now. I completed Taxol/Herceptin on Dec 11th (after 2 deferred treatments due to low Neutrophil counts) and had my implant exchange surgery Dec. 30th (Happy New Year to my hubby-LOL). I continue with Herceptin every 3 weeks through August in which I plan to have a bonfire party at the end of the summer to burn all my wigs. I started Tamoxifin on Christmas (MO said it would an easy date to remember when to stop it in the 5 or 10 years). I took the semester off from teaching to stay away from all the 12 and 13 year old germ bugs, and I am so excited to say that I am returning at the semester on Jan 30th to begin my 11th year of teaching middle school English language arts.
I thought I would post some hair pics for your viewing pleasure...it is growing fast. I am using the 3 step Nioxin hair treatment and taking Biotin. Lots of hugs to all of you TRIPLE POSITIVE BEAUTIES! You all inspire me. THANK YOU AGAIN, and Thank God for Dr. Dennis Slamon.♥
During AC treatment in July
1 week PFC of Taxol/Herceptin
My best friend and I celebrating at a winery the night after last chemo in December
3 weeks PFC
0 -
DXat32, you are just gorgeous! I loved seeing your eyes first and then scrolling down and seeing the rest of you.
We are on a somewhat similar schedule in terms of finishing up (last Herceptin for me was December 5 and exchange surgery was December 10).
I had to do a reread on the Facebook group mention (for a moment I thought you might be part of the FB group I'm in with about 75 other women - it was spawned from the January 2012 chemo group and has expanded to women at all stages of treatment). Let me know if you want to join the group (that goes for anyone else as well).
And agreed, thank God for Dr. Slamon!
---
TwinMamaHeather and Annie54, I did call the doctor's office today and his assistant/nurse called back and said he had reviewed the numbers and thinks they're all getting better (I don't agree but hey, he's the doctor) and she said he's not worried about anything so I guess I won't worry either. Sometimes I wish I could have some kind of surgery to erase the memory of BC so I could extricate myself from this other shoe waiting to drop waiting room. :-)
0 -
Nichole - just LOOK at all that beautiful hair coming in! Thanks for unlurking and for sharing your pictures, I was JUST on pinterest looking for ways to wear a buzz cut! I like the headbands and wonder if I could pull it off? I also use Nioxin and take biotin, but I had AC after taxol, so my hair growth has been slower. Boo!
For the "been there done that" ladies, when can I dye my darn hair? It's coming in with a few too many "natural highlights" if you know what I mean! I feel like I would be more brave about going topless if it were an acceptable (to me) color. I know I should just be grateful I'm here and its growing (which I am), but some normal in that area would be nice!
0 -
Lee - have you seen me keeping you company in the shoe drop room? It sure does suck in there, we need to find a way out!
0 -
TwinMamaHeather, I've already had my hair dyed with a semi-permanent dye (I really wish I hadn't done that) and then highlighted about by my regular stylist four weeks later. My hairstylist in California did the highlighting with foils and I don't think anyone else would have had the patience to do it as it was still very short (and still is!). It has grown almost an inch since the highlighting so I'm going to have to figure out what to do next. I think my hair has come in much darker than it was before; however, I hadn't seen a full head (or partial head) of my "real" hair color since high school. I've also seen some conjecture regarding Biotin making the hair grow in darker. Who knows.
The hairstylist who gave me my first trim during radiation (she came into the radiation center once a week) advised against getting hair color too soon and she said the first hair color should be semi-permanent but so far I haven't had any trouble with the highlights (crossing fingers).
I just checked my calendar. I had the semi-permanent hair color done at exactly 24 weeks PFC and the highlights were done just a day shy 30 weeks PFC.
0 -
TwinMamaHeather, I'm hoping some of the apprehension will diminish with time. My husband had a very serious illness in 2007/2008 and he's been in remission since then (thank God). It was an autoimmune disease that put him in the hospital for over a month. He must have an overabundance of serotonin because he says he's never thought about it coming back. I would like to be able to retrain my brain to be that way. Again, maybe with time.
I think I'm currently going through a very slight form of PTSD; i.e. did that really just happen? I still have these surreal moments of thinking "I've had the C word."0 -
LeeA, I think. we all do that. Sometimes we need help if we are stuck.
Nichole, welcome. You are lovely! Beautiful pics. You might want to join the Any ladies from WI thread. Nice group over there too. Hope you are tucked in safe and snug. It's blowing a blizzard out there now.
Much love to all.
0 -
Nicholle such a beauty, I love those pics--I'm sorry u had to go thru this, but glad u'r no longer lurking. These women are fabulous and so much info here. )Not from me, tho) U' r weather is like ours a lot-- Moon and I have discussed this cuz I pay attention to what's going on there cuz we usually get it right after.
Oh it's late, My Katie-Kat is circling around to get her spot on me, so......
0 -
Guess what day it is, come on, just guess.
0 -
Welcome Nichole. Thanks for coming out of the shadows, you are beautiful! I am so glad you are on the other side of the hard part of this journey.
I dyed my hair with a temporary dye shortly after my last Herceptin. I think it was Clairol Natural Instincts. I didn't want to do anything permanent because I am still trying to figure out what to do with this much darker and wavy-er hair. Plus if I didn't like the color it would wash out in about a month. I am going to get another trim today and need to talk to my stylist about some highlights or color change.
0 -
HUMP Day!
I had my weird color-that as one person said-does not exhist in nature-touched up a bit, Now it is more of my natural color-auburn with that lovely shade of grey growing in
. Has still only grown about 3" since March. Slowly slowly. Last Herceptin in the fall though. Welcome Nichole. Glad you are on the opposite side!
If you have watched the news...it is my small SE NM town with the school shooter yesterday. Please keep the victims, shooter, and all the families in your thoughts and prayers. Yesterday, as I watched friends, students, faculty members struggle with shock and loss I looked at my winding road of BC and took another tug at my Big Girl Panties. Does not mean I won't be whining next week..Thank you.
0 -
aw Susan. I have been praying for all involved since I heard of it. You have to wonder why and why so many. Hope there is never another one.
And, Go ahead and whine. We all do. Much love
0 -
Susan, your town is in my prayers as well.
As I think back over the years the first shooting incident that sticks in my mind is the San Ysidro, CA McDonald's massacre in the eighties. I'm sure there were other incidents before that one but it's the one that seemed to usher in the era of mass public place shootings and then the school shootings that followed. It's all so senseless yet so prevalent. :-(
0 -
LeeA - it took my blood tests 2 years PFC/H to normalize, they were always off somewhat here or there. My MO said that was fine.
Zometa to prevent recurrence - I talked to my MO about that a year or so ago, he said that he would not put me on it unless I broke a bone, he said the risks of SE's, such as osteonecrosis of the jaw, did now out way the benefits in his mind, at this point in the studies. My MO is moderately young, very aggressive and progressive in his treatments, and was in research prior to going in to patient care, so I took him at his word. Just my two cents.
0 -
None of my doctors will let patients see labs before they have reviewed them, then, if there is something they are concerned about, they will talk to me about it before giving me labs. So I figure if they give them to me and haven't talked to me everything is probably fine, that being said.... If I see something weird that concerns me, I call them!
0 -
I'm not sure if this has been posted yet. But here ya go, just in case it hasn't. Great news for those who had small tumors, were node negative, and decided to try the taxol+Herceptin regimen (which is less toxic than TCH or AC-TH). Phase II trial data in.
For these reasons, researchers launched a Phase II trial of trastuzumab plus the less toxic chemotherapy paclitaxel in approximately 400 patients with HER2-positive, node-negative breast cancer with tumors smaller than 3 cm. Patients received paclitaxel 80 mg/m2 plus trastuzumab 2 mg/kg for 12 weeks, followed by 13 every-three-week doses of trastuzumab 6 mg/kg. Radiation and hormone therapy were started after completion of paclitaxel. Roughly 67% of patients were estrogen receptor-positive; 50% of tumors were 1 cm or smaller; and 42% were between 1 and 2 cm (Table).
The three-year, disease-free survival (DFS) rate was 98.7%, and the three-year, recurrence-free interval was 99.2%.
...
Dr. Hudis said clinicians should consider the regimen for stage I, HER2-positive, node-negative breast cancer patients. “This chemotherapy regimen is shorter and much less disruptive for patients, and generally, all around easier,” he said. “For patients with small tumors, only rarely will they experience relapse with this regimen.”
0 -
dancetrancer - this is great news! I am grateful to my oncologist for suggesting this Taxol/Herceptin regimen for me - the very first time he recommended it for any of his patients. I'm so glad the study backs it up.
0 -
Oh that's good news. I am glad TCH may not be needed as much! Pbrain and I had rough times with that one.
0
Guess what day it is, come on, just guess.