TRIPLE POSITIVE GROUP
Comments
-
I dread driving in for Herceptin tomorrow morning on the ice!!!
Hope we don't lose power. We're all electric here so it will mean no water (well) and no heat (except for gas logs)....so if I am not on for a few days....lol, I'm freezing and thirsty in Ohio!!
0 -
Hi to all my Triple+ Sisters.
I just stopped by to tell you I was one of the first patients Stage I to get Herceptin.
It was approved April 2005 and I had 4X A/C 4X Taxol with 52 weeks of Herceptin and radiation between.
In 2 months hopefully Ill be celebrating my 6 year anniversary.
HUGS
PS: Until to this day I dont know the difference between HER+ & HER+++
My oncologist said it was 2.2
♥
0 -
hillck - Congratualtions on your path report - WOW that's great! I am interested in the crosstalk.0
-
Here is a link to a report that my radiation oncologist gave to me when I was flipping out about the HER2 - - - Nutshell being that as far as survival better HER2/ERPR+ than HER 2 negative ER/PR-It made me feel a little better. . .
0 -
Seyla that's great! wow 6 years!!! Keep it going girl.
TonLee My onc told me everything at my 1st visit. What chemo, Anastrozole for 5 years (in writing with a graph showing the benefits) etc. She told me I would need a bone density test and we would be rescanning my liver. She told me Rads was still questionable and I'd have to discuss with the Rad onc. She was up front about everything. I think you need to let your onc know you want the entire picture.
0 -
Hi Cindy...I got Herceptin as part of my treatment. I'm pretty sure it was legally approved June 2005 and my chemo started July 2005.
Im so grateful for it and All the women who went under clinical trials to be approved in such a short time because they were saying its too good to hold the Herceptin for early stage BC..
Thanks for explaining the HER+
0 -
Thanks lago. I'm still going .........
0 -
Lots of good info! I am gonna have so many questions for my Onc next week...lol
0 -
Cindy, I remember reading about the crosstalk issue awhile ago. I think the jury is still out. From what I remember, the tamoxifen in combination with herceptin is incredibly powerful. If there is reason to believe that there is a resistance developed (I guess this means a recurrance while in treatment), then the endocrine therapy can be changed. The signalling pathways do not necessarily remain resistant...so its reversible....which is a good thing.
The tides are constantly changing on this aren't they? I was talking to my onc about an AI. She remains steadfast that until its proven that tamoxifen is less effective in her2 women, it remains the gold standard. I try to stay on top of the studies....right now I am sticking with the tamoxifen, and tolerate it well.
0 -
Add me to the growing list of triple positive (ER 90%. PR 70% and Her2 3). I did have a lumpectomy today and will get results Thursday. Dr said all went well and thinks he got good margins( i am a dcup so he had alot work with) Took 4 nodes, Dr thought at least one might be positive since it was a little enlarged on the ultrasound. On the other hand, the radiologist didn't see anything to be worried about on the mri that I had friday. The key to the sentinel biopsy injection is the emla creme and ice-I had ice for about 1 hour and felt nothing-much easier than I expected. At this point, I am looking forward to getting this show on the road with treatment. My sisters and mom are driving me crazy, they just want to hove. The coordinator at the the breat center expressed how lucky we were that so many drugs out now and in the pipeline for triple positives-even though it seems we are a small subset. Anyway, looking forward to connecting with you gals going forward!
0 -
I'm trying to learn all I can about triple +.
I was diagnosed with IDC on 1/13. I had my lumpectomy and axillary node dissection on 1/27. I should receive final pathology on that tomorrow. My surgeon believes he got clear margins and my initial SNB was clear. My tumor was <1cm so I was very, very blessed to find it so early.
I'm morbidly obese. I could easily lose 100lbs. I crigne everytime someone comes down hard on a fat girl with BC. I've always struggled with weight but it really got out of control after my daughter's drowning death in 2003. Having PCOS and hypothyroid has added to the mess.
I was walking EVERYDAY for 35 minutes before my diagnosis. I'm getting back to walking tomorrow. I guess I'm a wimp because I still feel a little weak after my surgery (4 days ago)
I'm not even sure what tripe + means. My surgeon keeps telling me how positive all my news is and how my final pathology will determine the need for chemo. But triple + pretty much guarantees chemo, right?
0 -
Hello,
Just wanted to add one more to the group of +++'s
AlaskaAngel
0 -
Hi Triple Positive here too.
Just getting ready to celebrate my 3 year mark in 2 months. I have hated this bc ride but have learned much and know you all can do it too. The outlook for Her2 gals is very bright!
0 -
I'm another triple pos girl, ER 30%, PR 20% Her2+++.
I was dx 2 yrs ago this week, I had a lumpectomy and auxiliary node clearance, my BS wouldn't do a sentinel node biopsy as I had multifocal BC.
I did AC TH went into Menopause with my third AC aged 39 and haven't seen a period since.
My Onc started me on Arimidex as this is his preference for Her2 once I had finished Rads, my baseline DEXA scan showed osteopenia and while I tolerated the Arimidex well, it dropped my BMD by a further 10% in a year despite VitD, calcium and Zometa so I had to stop the Arimidex after one year.
My blood estrogen level was undetectable on the Arimidex and remained low when I came off it so I'm not taking any hormonal therapy unless my period comes back. We discussed Taxox but my Onc thought it would only reduce my recurrence rate by a further about 2-3 % max so for now I'm comfortable not taking anything.
I had a bone scan and CT just after surgery for staging and will just have a Mammogram and Ultrasounds yearly.
It took me a while to get over treatment and I went back to work full time during Rads and have 3 little kids so was exhausted for about a year post Chemo, but now feel great and back at the Gym most days and have heaps of energy. I don't have no long term SE's from treatment, which I'm very thankful for - well except Menopause and osteoporosis!!
LL
0 -
Just a quick tip for those suffering from hot flashes: Flaxseed! I have been researching alleviating menopausal symptoms lately, specifically hot flashes and lack of mojo. Typically, symptoms are alleviated with hormone therapys, aka estrogen, which is now our number one no-no. I started eating ground flax seed on everything after reading that it would help with hot flashes (and it's good for you). I do feel it is working, I am still getting them, but not as severe.
0 -
Thanks sunflower, I was eating some in my oatmeal but forgot, now I will put it back in!0
-
Add me to the triple positive list! I was diagnosed almost exactly a year ago, and had 2 lumpectomies - first one didn't have clear margins. Due to 2 sentinel nodes positive (none after that) and the need for Herceptin, did ACx4 every 2 weeks, then Taxol every week and Herceptin every 3 weeks. Will finish Herceptin in June. Also had radiation Sept - Oct. Have been taking Tamoxifen since finishing rads, and also had a hysterectomy (laparoscopic) last week - I'm 44 and haven't had a period since May during chemo, but my onc wants me to stay menopausal and also decrease estrogen production, not to mention I have a history of uterine polyps, and Tamoxifen can have uterine cancer as a SE. My onc says that she prefers to keep me on Tam for now rather than switch to an AI - so I'm interested to hear what others experience is with this.
I'm so happy to read about all of you out there diagnosed 2, 3, 4, 5 years and beyond. You are my inspiration. I am also keeping up with info about most likely recurrences for Her2 being in the first 2-3 years - I am a bit obsessed with recurrence fears at times.
I haven't had scans at all. Just my diagnostic mammos, and MRI before surgery. My onc insists that symptom monitoring and blood work are enough at my stage. She says that if anything hurts for more that 2 weeks, we will look at it. Of course I have aches and pains all the time and am constantly assuming its mets. Even had a liver scare with blood work - but ultrasound showed nothing there - all normal. So now I am starting a program at my cancer center focusing on relaxation and meditation as a way to cope and handle fears, moving forward etc.
For those of you who are just starting on treatment - you can do it! I was so anxious about chemo and it was very manageable, and even seems so long ago at this point. I love hearing about how Her2 outlooks are so bright these days. And feel very lucky about having Herceptin for my early stage BC.
Sara
0 -
TonLee - I am currently on tamoxifen for about a year now and have been in full menopause since chemo in summer of 2009. My onc has told me they will do the blood test to make sure I am in full menopause in Oct of this year and if so he will switch me to an AI. I think tamoxifen is usually used in those that are not in full menopause but not always, my mom is taking it and she is in her 70s but she was also grade 1, stage 1 DCIS only with lumpectomy and rads only.
0 -
Hi there!
Add me to your triple positive list!
I am just past number 4 of TCH
Had DIEP done and now looking at needing a hernia repair when I am done with chemo but still happy I did it.
0 -
Herceptin canceled today because of the weather.
Geewhiz and Cindy I'm looking forward to the crosstalk information as well. Please let us know what you learn. I plan on asking my Onc next Tuesday.
KrisKat welcome! Good news on the clear margins. Will you be tested for the BRCA?
Pejkug welcome! I am so sorry about your daughter's death, and then a BC diagnosis on top of it. I am also hypothyroid (and went undiagnosed for several years) so I know what a monster that can be as well. In fact, imo, fatigue from being hypothyroid is 100 times worse than from chemo. Learning to live and deal with that for so many years really prepared me for chemo (so far).
Fitness is one of my passions. I think the reason people may "come down" on obesity during BC treatment is because it is one of the very few things we (the patient) actually has some control over. But please do not be offended. Our goal is survival. Walking is an awesome way to start a fitness program. If you can work up to an hour a day (an hour really is the gold standard for losing weight) and no more than two hours a day though, I believe you will not only feel better but start losing weight. If you'd like to talk thyroid/BC/Fitness issues please feel free to PM me. I've never been morbidly obese, but I did gain 30 pounds while undiagnosed and living in Alaska. Hardest 30 pounds I ever lost! Lol
Please let us know what your final path report says. Maybe we can help you figure it all out.
Triple positive means your tumor was positive for HER2, Estrogen, and Progesterone. (Estrogen and Progesterone grow the cancer.)
0 -
Welcome AlaskaAngel! I see from your tag you chose to skip Herceptin and you are 10 years out!! Amazing. I'm sure you've told the story a hundred times on this board, would you care to make it 101 as to why you chose to skip Herceptin? Was it offered at the time? Details!! Lol
MMM5 welcome! Do you celebrate every year? Do you think that's important to do? I plan on living a long time and any reason to celebrate...well, heh, I'm on board.
LL welcome, so glad you are feeling well! I admit I don't know a lot about Tam or Arm, I am researching as I go, step by step. I've run across literature suggesting Boniva (Sally Fields is the spokesperson for it) not only rebuilds bone density but early studies indicate it protects against bone cancer. That's all I've read about it though, so haven't really fleshed it all out.
Sunflower the flax seed ‘should' be fresh, ground (a coffee grinder works great) and eaten within 20 minutes (turns bitter after that) to be most beneficial. I have several studies on flax seed and how it should be consumed...though at the moment I can't tell you where they are! I read about it a couple years ago when I wanted to "do something" extra for my health. But you can go to google scholar and read about it.
Sara I am 42 and thinking about a ovarian ablation. I have ALWAYS had problems with my periods. In fact, I would only have two a year so I went on birth control pills for 20 years to force my body to have a monthly cycle. Now I wonder if maybe my body knew estrogen would grow cancer and so limited it. I had a really heavy bad period starting the first day of treatment (TMI..I know) for 10 days...I became anemic (still am) but haven't had one since.
Don't you hate the "wait for symptoms" reply? I hate it because a single scan can literally save your life, or at least years of it.
0 -
Blondie I think I'm going to research each of those drugs more in depth and decide which one will hurt me less. I don't like the idea of losing bone density.
Nora you are one treatment ahead of me. I've been pretty good so far. No down time just this annoying bloody nose. But honestly I am dreading #4. An amazing number of women on this protocol have told me for whatever reason #4 is the worst. I'm probably mentally setting it up to be...but plan on pushing through.
0 -
pejkug3 The one good thing about triple + is there are many different treatments that we respond to (radiation, surgery, herceptin, chemo, als or tamoxifen). If you get herceptin you will get chemo. You might get few rounds (like 4 tx of THC instead of 6 tx). From my own personal experience it would have been a lot more duable to stop at #4.
As far a weight. It's a real tough battle once you have too much and you've had it for most of your life. Try as hard as you can to get that weight off. Your doctors should be sending you to a nutritionist and someone who can help with an excercise regiment. I'm sure you read the link I posted on the 1st page regarding keeping off the extra weight to reduce recurrance. The oncologist quoted is my oncologist. She is top notch. It's tough but take it slow. It won't happen overnight. It will take at least 1 year to lose 100lbs. I know you can do it this time. I saw my husband lose 60. It's hard work!
mmm5 3 years!!! another way to go girl!
sunflower71 check out this article about Flaxseed. It may reduce recurranced too, well at least it does in mice. http://www.mskcc.org/mskcc/html/69220.cfm They are currently doing a study too comparing als to flaxseed: http://clinicaltrials.gov/ct2/show/NCT00612560
0 -
Glad to know there are so many +++ gals on this forum. (I always feel weird saying that--hopefully everyone knows I'm not glad we all have breast cancer, just glad we found and can support each other.)
Called my onc's office yesterday and started Tamoxifen this morning. 5 year countdown started-- 4 years, 364 days to go!
0 -
smile - Did your doctor say anything about Her2+ and tam? The cross-talk concern?0
-
Hi TonLee
So far number 4 has been a bit rougher than normal. I know nothing is TMI between us girls but I am having serious bouts of abdominal cramping intermixed with constipation/diarrhea this morning and an overall feeling of YUCK.
I think it's about time to take something for it, I just cant stand being knocked out all day long. Yes, I'm in the "poor me" mode this morning. Thing of it is, there are many in here in the same damn boat as me. Time to start paddling!
Have a good morning everyone
0 -
No, I met with him Jan 20 and he told me to go on it in Feb. before I had heard about the cross-talk here. I'm interested to hear what others find out. I go in for Herceptin the 10th, but I don't see my onc again until March. Now that I'm done with chemo I only see him every 3 months. I do know that if I come out of chemopause and start having my period again I will be put back into a chemically induced menapouse. I don't quite understand all of the cross-talk concern, I guess I have some more researching to do. I think my onc figures it is better to try something that may show benefits even if it might be more resistant for me b/c of Her2.
I'm reading this article right now, but it is pretty intense. Maybe somebody else can summarize the cross-talk concern for me.
0 -
Triple Positive girl here also!
D/x in January 2009 - High ER/PR and HER2+++ with lots of nodes!
I finished Herceptin in July 2010 and I have been feeling great since then.
I just hope that I stay that way!
0 -
nora - number 4 was a bear! Hang in there. Sometimes I put cold packs on my belly.
Smile - I'll check the article out this evening. Thx
0 -
Smile on...this study is 8 years old and basically says.....
Taken together the evidence suggests that targeted non-chemotherapeutic combinations of trastuzumab with hormonal therapy, which are currently being studied in large-scale clinical trials, represent the future of cancer therapy, allowing the individualisation of treatment based on tumour characteristics.
This supports getting both Herceptin and Tamox.
0
