Testing, treatment, side effects, and more.
Posted on: Jan 22, 2009 09:19AM
Dr. Called said good news! triple positive, means I will have more treatments available, so he says. So I am a little confused. Does Triple positive mean ER+/PR+ AND Her2 + ??? or is it something to do with a certain level (+++) HER2? Does HER2+ definately mean chemo? I will see him tomorrow with lots of questions but I feel I could get alot of education here from my "sisters". What is this medicine I see on other threads? Is there a thread that explains to us newbies about medicine by name, what they are used for what. little confused about some lingo. Anyone can help me with a clearer understanding?
IDC, stage 1, Grade 2, 1.47cm with lymphatic invasion.
Posts 1 - 30 (31 total)
Jan 22, 2009 10:22AM Jenniferz wrote:
You are right, Triple positive means hormone and HER2 positive, which opens the door for us for more treatments. I don't know for certain (only your onc. will), but the treatment plan NOW for triple positive is chemo, plus Herceptin. Herceptin is the target drug for those of us who are Her2 postive. I didn't receive chemo or Herceptin, because three years ago, that treatment was for patients whose tumors were larger than 1 cm. Mine were not. And, I had a mastectomy. If I had had a lumpectomy, then I would have at least had radiation. ( As an aside, did your dr. tell you that as a triple positive, we are also rare? I think you'll see a number of ladies chiming in here as time goes by.)
Being triple positive also opens the door for the use of drugs like Tamoxifin and Aromatase inhibitors. Aromatase Inhibitors are for ladies that are postmenopasal. Depending on what your onc. tells you is how you will be treated. Some here take five years of Tamoxifin, then are switched to an AI. I am taking Femara ONLY, and have been for nearly 3 years. So far, so good.
Jan 23, 2009 11:27AM Carolina59 wrote:I'm triple positive as well. I had a bilateral mastectomy (cancer in both breasts), TCH chemo, Herceptin for one year and now on Arimidex (post menopause).
Jan 23, 2009 01:54PM kimbly wrote:
I am triple positive as well. I started a thread a few months back because I didnt see too many ladies like me and lo and behold I was not alone It is good news because there are many different things that can be given to us to stop the cancer from growing etc. I had TCH.. taxotere, Carboplatin and herceptin. .. 6 treatments all three every 3 weeks and then herceptin for the rest of the year. I just had my last in December. I also take tamoxifen. I will be switching to armidex once my ovaries are removed...
Jan 23, 2009 02:37PM Jenniferz wrote:
I was one of your "mushy middle ladies" that participated in that thread. Just wanted to let you know that I had onc.'s visit today, and my tumor markers are normal!! yiiiiipeeeee!!!!
I get excited every six months because there was NO herceptin for me.
Jan 23, 2009 07:29PM juniper wrote:
Another triple positive girl here. I was staged at IV. So I had 2 rounds of chemo, herceptin, rads and now I am on arimidex. I will continue to get herceptin as long as it keeps working (and my cardiac function remains normal). Herceptin is a miracle drug for many of us. I had large palpable superclav nodes and after one herceptin treatment, my onc. could no longer feel them!!
Jan 24, 2009 06:31AM kimbly wrote:
Herceptin is a wonder drug. After one treatment of tch for me my onc could not feel my 'thickness' either. After 3 treatments I had an u/s and it was gone. Amazing.
You know after all this time I am not sure what tumor markers are and what they measure that with? can someone explain?
Jan 24, 2009 05:41PM Jenniferz wrote:
If I understand properly, when cancer is present, it produces some sort of protein that doesn't normally show up unless cancer is present. Your doctor can order blood tests to check for these proteins. There is a range where it is normal, and I think that high end of it is 38-40. Could be wrong here. 38-40 what I'm not sure....I think percentage.
These tests are NOT 100% accurate.....some doctors run them, some do not. Since my onc. won't do scans unless I present symptoms, she says she likes to do the tumor marker tests. Personally, I hate them................just one more thing to worry about. But, oh well. And since I didn't have Herceptin, I guess this is a good way to keep on top of things.
I'm sure someone else will weigh in here, and give you a better answer.
Hope this helps.
Jan 24, 2009 09:49PM smokey wrote:
I am breast cancer woman that did Femara, but now have started a different drug (similar) because my hands swelled up so much I had to have wedding ring cut off. I was suppose to do Herceptin through the Port for 52 weeks; before chemo. Heart was a strong 70 MUGA and after 42 Herceptin treatments (and adriamyacin/docorubicin) the heart MUGA test went down to 40....muscle power of the heart pushing blood...so my chemo doctor "stopped" the Herceptin infusions.
I started out with Femarra. Have used it for 8 months. My hands have swollen so much that I can not turn my wedding band. Went to the Jeweler to have wedding band cut off. My chemo-oncologist doc gave me a new pill for ER+PR+ and Her-2-nu 3+....that seems, really seems to be helping with my hands/fingers. I am hoping that I will be able to put my wedding band on again soon. Write to me if you want to visit about this ....and I am willing to share my experience.
Jan 24, 2009 09:50PM LuAnnH wrote:
ok lets answer these questions one at a time:
What does triple positive mean? That means that you are er/pr positive and her2 positive.
the plus side to this is it opens up several tx options that are not available to everyone. First off being herceptin. This is an amazing drug that is saving lots of lives and probably saving alot of ladies from delveloping mets, another awesome thing. Herceptin targets the tumors directly, it is attacking ther her2neu protien in your body. So unlike chemo it doesn't kill all rapidly multiplying cells in your body. It only attacks the her2neu protien so it doesn't have the harsh side effects of most chemos.
er/pr is your estrogen progestrene status. Being positive for this means you open up the posibility to use anti hormonal drugs. When you are positive for this it means your cancer is fed off of estrogen & progesterene, when you shut these off in your body there is nothing there to feed the cancer. Now the downside to this is that it puts you into menopause but who can complain about no periods! LOL The drugs for this is tamoxifen, arimidex, femara, aromasin and faslodex. If you are post menopausal the once will usually rx tamoxifen, if you are post menopausal he may write the rx for arimidex or femara (they are very similar and it usually the preference of that onc, but both work well). Aromasin and faslodex are usually saved for the mets status.
Now the nex question was dealing with Tumor Markers (TM's), these are done through a blood test. Some onc swear by the and others put no faith in them so it is up to the particular onc whether or not they are drawn. To be honest in early stage breast cancer these don't have much meanings unless they are way out of the normal range. The normal range is less than or equal to 38. The two blood tests the doctors run are the CA15-3 and CEA27-29 (ok memory is bad tonight but those numbers sound right). Anyway if your onc were to run them and you were stage 1 and the test result were 670 I would bet the onc would run tests to see what is wrong. But in all honesty when mets are found the tests are for the most part still in normal range. When you have bc mets the onc run these tests to see if they help determine if your cancer is growing. For some when the numbers go up it means the cancer is growing. Others those numbers are worthless numbers on a piece of paper and have nothing to do with their cancer.
So in summary TM's are really a tool an onc uses in the metastic setting and not normally in early stage breast cancer.
One thing I didn't address, what the test does is measure the cancer cells in your body. But the test is flawed because it doesn't know how to determine whether the cancer cells are dead or alive. That is why the test is flawed and doesn't work for everyone. Bottom line when you hit the metastic setting (if you ever hit that stage, most don't) it is just a tool your onc can use to help determine what is going on with your cancer.
Jan 24, 2009 10:13PM smokey wrote:
Dear Luann, please forgive me for not knowing...but what is a MEd?
I am Er+PR+and Her-2-nu=3+ and after going through the adriamyacin+ taxol for 12 weeks and herceptin for 42 weeks (was suppose to do 52 weeks but heart Muga went from 70 to 40) and now on hormone pills.//// I am scared.
Not sure what to believe when it comes to Soy? Any thoughts? I use to weigh 130 before all this treatment; and now weigh 142. I LOVe to eat soy beans, great snack. Before I got BC I drank a quart a day of soy milk, because I liked it. And I love soy beans. Now, I am receiving Conflicting advice from doctors, all of whom I really love, ....the surgeon says "don't eat any Soy" and the chemo doctor says"eat what ever you want to that's healthy including Soy". So What should I do? It seems so healthy and I love to eat soybeans...better than other things like my husband eats chips and donuts?
Jan 24, 2009 11:10PM LuAnnH wrote:
Smokey, I must have typo'd, when I wrote mets, it stands for stage IV metastic breast cancer. That is the worst case scenario when it returns for good.
As for soy, I would NOT and let me emphasize NOT use soy in my diet. What soy does is cause estrogenic effects to your body and that fake estrogen it produces can feed your cancer. I would find a new snack and if the weight really bothers you I would find another way to lose the weight. Eating soy is like eating pure estrogen and you don't want to do that. So in this case I would say ABSOLUTELY listen to your doctors and don't eat it. I am sorry if that is something you have come to love but it the other stuff that gets you.
Jan 25, 2009 10:45AM Jenniferz wrote:
So in summary TM's are really a tool an onc uses in the metastic setting and not normally in early stage breast cancer. Ok, so would you please tell my onc. so she will stop scaring the bejabbers out of me every six months???!? (just kidding)
I know what you say is true, and this is exactly what my first onc. said. However, this one is bent on markers. Said that since she won't scan, she does those. To each his/her own, I guess.
Jan 25, 2009 08:45PM LuAnnH wrote:
Let her run the markers, just ignore them. If you ever want a scan make a complaint that warrants a scan. Whether you have those pains or not is not my business, just do what you need to in order to feel comfortable.
Jan 27, 2009 01:10PM Carolina59 wrote:
Smokey, what is the new pill your doctor has put you on for ER+/PR+ and HER2+? I've been on Arimidex for almost a year and also have swelling plus a lot of joint pain.
Feb 20, 2009 02:41PM ipursuit wrote:
Do these posts answer your questions? You haven't responded since your first post. Are you doing OK?
Carolina59 Thank you so much for that link to the ASCO abstract - VERY helpful and uplifting regarding prognosis for us Triple Pos.
I was completely freaked out last week when I got the final path report showing HER2 since all of the big BC websites are out of date in the overall message they convey regarding HER2 being "most aggressive", "most likely to recur". While true, they misinform regarding current prognosis now that we have Herceptin.
My sister saved my sanity by calling last Sunday and reading me an article in the March issue of Atlantic Monthly - very encouraging unless you live in New Zealand (read the article to see what I mean....). Here is link:
Feb 20, 2009 04:52PM - edited Feb 20, 2009 05:18PM by deemdee
Thanks to all of you for your replies, and "ipursuit" thanks for asking about me. As you can imagine I have spent ALOT of time giving myself the BC cram course! Your answers were helpful. Let me give ya'll the update. I found out that the triple positive was indeed for all three, but also I am E/R +++(90%), P/R+++(90%), AND HER-2+++ (95%) So I guess that makes me in the "Tripin' Triple Triple Club" LOL. I am on schedule for upcoming Tuesday Feb 24th Bi-Lat with immediate reconstruction (expanders). Started to freak about my decision yesterday, you know the second guess yourself questions? But of course with good reason. I have had history of DVT's, PE's and one freak bloodclot that came through an opening in my heart and landed in my clavicle area, broke off and instead of going to the brain and me stroking, went down my arm, almost lost my hand that time but got lucky just amputated fingertip. So had a "filter" put in last week so If I get any blood clots hopefully it will catch them. Also met with oncologist- I LOVE HER!!! She has a full history on me now, and I of course present challenges but I will get through them. Some include NO Tamoxofen, and prob have ovaries removed. Lovenox injections and coumadin (blood thinners) while I have port in.
Maybe some of you can help me with my "concerns" and reasons for second guessing myself.
1. Am I being too radical with bi-Lat, considering its only 1.47 cm's? Although it is IDC. Grade 2.
2. Should I consider ovaries out first, then chemo, rads, then lumpectomy?
Actually, I should say, It is others that are asking, and have made me think too much. I have felt quite comfortable with my decision. I have done my spiritual contemplation and have asked my questions - Its my Ego that likes the idea of new perky boobs! I'm okay with that But, I just want to be cancer free- with no blood clots, or really bad SE's such as a stroke. My Great hubby will be helping me with the caringbridge website so all are welcome to come check it out for my progress notes.
Love your soon to be a "formally" size D sister,
Feb 22, 2009 11:49AM ipursuit wrote:
Those +% sound great! the higher the %s mean you're likely to respond better to the treatments (wish my ER/PR was as strong).
# 1 - As to the bi-lat (which I had 2.5 wks ago) - I have had no problems whatsoever - am healing great with expanders. I had lots of hyperplasia/atypia in other breast so no more worries about that one. Of course your situation is totally different - you haven't shared the details of your situation.
As far as # 2 question. I would do nothing to delay getting the Herceptin and chemo honestly. My onco said the hormone sensitivity is nothing compared to the HER2 / Herceptin response; that it was nice to have as insurance after the Herceptin/chemo combo knocks them dead.
BTW, you live near Atlanta, where are you going for surgery? who is your surgeon? onco? I've wondered if this website might offer useful exchanges on that, but maybe it's against policy (I'll have to ck....)
Best of luck on your surgery - from a formerly flat chested sister who used to joke about never having enough breast tissue to get cancer!! (so much for that joke! :-))
Feb 27, 2009 04:11AM kim40 wrote:
Another triple lady gal here - I only found this out yesterday as my receptors were not available on my path report back in January! We'll at least now I know!!
Feb 28, 2009 03:09PM karen_3 wrote:
Triple too for me...
Just recently diagnosed on 2/6/09, will have bilateral mastectomies (phrophylactic on my left side) this wednesday, so final pathology is not back. I've asked to do the Oncotype DX test, my doctor recommended, to see how low I score.
I am hoping for no node involvement and a low score on this test which is performed on my breast tissue that is removed. I DO NOT want chemo, a low score on this test may prove that is not a good option for me, which I hope. Because of my ER positive status, I know I will be recommended for Tamoxifin - I'm not sure of my percentages, I will be studying that final pathology 1 week out from my surgery for sure.
I personally feel my being on the pill for 15 years did something to my chemistry, don't think I want to pump more synthetic hormones into my system, and I think being forced into menopause unless really necessary will be something I push against.
this experience has changed my point of view on life in general, my fiance and I may want to try for a 4th child together...
Am I too hopeful that this can all be a distant memory some day?
Feb 28, 2009 03:25PM noellech wrote:
Hi Karen, I am in Naperville. Nice to see a neighbor on the board. I am also Her2+ and ER/PR+ but I did the chemo/herceptin and started tamoxifen two months ago. So far so good.
Feb 28, 2009 03:29PM mmm5 wrote:
Welcome Kim and Karen, Karen I understand your desire for no chemo, but now the reccomendation for HER2 gals no matter the size of tumor is chemo plus Herceptin., Also the Her2 value on the ONCOtype DX test weights it pretty heavily. I have not seen many with low Oncotype scores that are also Her2 positive..That being said your Onc will know best and know that if you have to have Herceptin it is now considered the best prognosis.
I also was forced into Menopause and it is tough, but you come to believe that these things will save your life and it will be ok.
I wish you luck on your surgery and good luck with your TX, I hope that you get what is exactly best for your good health.
Mar 1, 2009 10:06AM HensonChi wrote:
I am also triple+. I did TCH, radiation, and am now on Herceptin until this coming July. I take Femara also. I go for my first mammogram since I was diagnosed this next week. It should be interesting to hear what they have to say. I was diagnosed last February and it took them a while to sort through everything but finally I am on the right course and couldn't be happier.
Mar 1, 2009 12:11PM mommy2dex wrote:
Hello ladies. My mother was diagnosed with IDC 2 months ago. She had a lumpectomy. Tumor was not quite 2cm, stage 1, grade 3 no node involvement triple positive....what a mouth full. She will be going in for her port in the a.m. Treatment of 4 cycles Cytoxan, Taxotere and Herceptin followed by the remainder of the year Herceptin. I see that a couple of you have had this particular regimen. I know that there are threads for family members, but it is nice to have input from the people who are actually in her boat. As a concerned daughter, i can not begin to imagine what she will be going through. She has a fantastic attitude and will do whatever it takes to get to the other side of this, I would just like to know a little better how to help her without her having to ask. I am so afraid of all of the unknowns. Any information you all could offer would be so welcomed. What is the Arimedex and Femara? No one has mentioned any of these to us that I can remember? Though there is soooo much to take in perhaps I missed it. Hope everyone has a good Sunday night. Til next time take care.
Mar 1, 2009 12:33PM - edited Mar 1, 2009 12:34PM by plakatakr
mommy2dex-my tumor was 1.2 but otherwise, the same dx. Arimidex is probably what she will take after chemo. It is for post menopausal er/pr+ women. It is taken for 5 yrs (like Tamoxifen). The thing I needed most was 1. Someone to vent to & 2. Rides to and from Chemo. I was flying high the first 3 days and would crash on day 4. She may want someone around that 1st time. I passed out in the shower! I finished Chemo 12/5/08. PM me if you want to "talk". Good luck to your Mom. She'll be fine!
Mar 1, 2009 03:42PM Jamie6 wrote:
Although I'm not Her2+, I've heard great things about it. I had a spooky incident recently. I was watching my TV, and this movie called "Proof of Life" was plaiying on Lifetime cable channel. It was about how Herceptin came about and the doctor who fought hard to bring it to the market. This was late 2008. Several days later after watching the movie, I found a lump in my breast. In January, the movie repeated again and I caught it by coincidence once again. This time, I taped it instead of watching it becasue I had already seen it and I but I liked the movie enough to watch it again some other time later. Few days later, I was officially diagnosed with breast cancer.
Until then, I didn't know anything about breast cancer, didn't know anyone with breast cancer, nor would I have watched any programs about breast cancer. I know it's all coincidents, but the timing was spooky in both cases only a month or so apart when they aired this movie. It was almost like someone/something was warning me to go get myself checked out.
By the way, I turned out to be NOT HER2+, so I will not be needing Herceptin. The movie is a good one, for those that's interested in googling and watching it. I watched the recording of it again today. With more interest this time, of course - LOL.
Mar 2, 2009 08:18AM angie27 wrote:
I am also triple positive, my doctor also told me that it was good that I was triple positive, because they now have the drugs to treated, I had chemo, and I finish herceptin in June,:
Jamie6,: I thought the movie is called "Living Proof"