TRIPLE POSITIVE GROUP
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jenn404 i had the same exact treatment protocol as you. Chemo before surgery. Ihad a lumpectomy after chemo but will be going forward w the double on the 15th. I didn't have any cancer left at surgery (hoping the same for you!) so there was nothing to re-test. I do believe that if there is residual they test it, sometimes chemo changes the receptors i have read.0
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Hi Lago. Yes I do know about the HDM1. My Dr. seems to think that it is very close to being approved. Probably sometime in early 2013. He's much more enthusiastic about that than the perjeta. I hope it's as great as people say it is. There are also other hormone drugs which I haven't had yet. My onc says no need to give them unless needed. So far things have been stable. I guess you have just have to take each day as it comes. I've only missed one day of work in two years, so something must be working. I am going to check out the Stage 1V boards. I realize that my situation is different from many women. I think if I was diagnosed sooner, I wouldn't be in this position. My tumor was very large when diagnosed in 1997.
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Hi Iago
For some reason I am unable to reply to you via PM? Not sure why. Im very stressed and seeing the doctor at 6pm. Classic migraine signs but with my LE appointment of nearly 2 hours, it sucked today.
Jenn best wishes for your surgery. i am sorry if Ive missed any other posts regarding surgeries/concerns etc. I just havent read all posts. Will try and get somewhere with the PM. Anyone else had same messaging issue?
Liz
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Pearlady I feel the same way. My tumor was 6-6.5cm. I too feel is should have been spotted earlier especially since I had a "scare" 4 years prior in the same spot.0
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HI Lago. My tumor was also large. 7CM. Back in 1996 I guess I didn't know as much as I do now. I felt the tumor in early 1996 and went to a surgeon. He assured me that it was not cancer and believe it or not, the mamo did not show cancer. About 18 months later it was huge and could not only be felt, but could be seen. I think my gut told me that it was cancer in 1996 when I first went to the surgeon, but since I heard what I wanted to hear, I didn't listen to my voice. I should have insisted on a biopsy in early 1996.
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Kayb. I agree with you. The studies on the types of cancer is way over my head also. I am totally confused on the difference between her2nu enriched and luminal her2nu as well as other issues. I have scheduled a sit down with my onc to try to get some clarity.
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#ESMO for the results next week...
Jenn0 -
Kayb my BS said I was PR- at only 5% but my onc says it's positive. My PR+ is 30%. My understanding is you can't be a little bit pregnant so that means you would be positive, just not highly. Typically when HER2+ are hormone positive we are not highly positive. You belong here. So at PR 30% and ER 5% I'm not all that much different percentage wise.
Pearlady this is one of the reasons why I volunteer for the ACS and post here. Women just don't know!
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Soltantio it is definitely the perjeta giving me the big D. I have been on herceptin and the other drugs for quite a while. Two days after my first cycle of perjeta it started. Also, its different than D that I've had from other drugs. I did speak with other women on the discussion board who are on perjeta and they all say that is one of the most difficult SE's. The good news is that it's suppossed to get better in time. I've had my fourth cycle and it is a bit better, but not where I'd like it to be. The positive news is that it's helping me to eat better and not eat some of the sweets that I love. Sugar is a killer since I've been on perjeta.
Regarding testing the lump, I know that it is possible after chemo for the tumor to change. My onc says that the most typical change would be from ER+/PR+ to negative, although I've heard that sometimes it can change from Her2nu- to Her2nu+. I'm just wondering if that's tue or if maybe the biopsy wasn't done right the first time. When I had mine re-tested it was essentially the same as when I was diagnosed way back in 1997.
Kayb my ER is 95% and my PR is 50%. That was as of two years ago when they retested. My Dr. says that is a bit unusual in that most women who are Her2nu positive are not that high. That is one of the questions I need to ask him in my meeting next week. If my ER is so high, why I'm not being treated more aggressively with the hormone suppressing drugs.I will post any information that I get after my consultation next week.
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I don't remember reading anything about herceptin in the article either. Just that all their different testing methods confirmed the two main types of HER2+. I think it's still an estimate. I don't know about the herceptin not working as well with ER+ - there is that whole crosstalk discussion for HER2 and ER but I remember reading another article that the anti-estrogen works better with herceptin.
Kayb - you can't go anywhere!!!
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Hi everyone... I just found this thread and have been reading your posts. I was just recently diagnosed on Aug. 28 with ER+/PR+,HER2+++. I'm scared because I have two tumors in each breast, so four total. The only way I found it was I felt a small lump (1.2 cm) on my right breast and thought that was it... I had no idea I had 3 more total! They just felt like they always did with my fibro-cystic disease.
The MRI says they are 2 cm each, but the ones in my left breast are either 2 separate tumors, or one big one... they can't tell yet (which would be approx. 4 cm if it's one). I haven't had surgery yet though... it's October 11-- a BMX with TE and since they aren't sure if I'll need radiation, they are putting off the latissimus dorsi reconstr. and implants. I am going to see my oncologist for the first time Oct. 3 so I'm not sure if it's too early to post here! I've had all my CT scans and MRI's. I'm still in shock, I think, and overwhelmed but trying to remain positive. I am beginning to realize that this is going to be a long haul. My bs told me after the biopsy came back that she had some bad news and some good news... the bad was that I was HER2+, but the good was that there are SO many new drugs to treat it. Anyway, thank you for listening and I am looking forward to coming back here often for support.
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Welcome to the forum Pearlady.....
Jenn...I had my post neo TCH lumpectomy delayed by a bad EKG and I was beyond consolation for days. I felt abandoned by my MDS and just so upset.
Question...when you get your mammos...how long does it take or the results and who gives them to you? Just had my 6 mo post lumpectomy mammo. Last year when DXed I knew the same day...had all the tests mammo, US , biopsy and MRI the first day .
I was all excited to make the appointment to be " deported" in a few weeks and found out my BS does it in the OR and I need pre op testing.....AGAIN....the thought of going through all that again set me back again. I 'm so friggin exhausted from all this. Nearly one year now... I know all of you know how I'm feeling.0 -
Hi everyone... I just found this thread and have been reading your posts. I was just recently diagnosed on Aug. 28 with ER+/PR+,HER2+++. I'm scared because I have two tumors in each breast, so four total. The only way I found it was I felt a small lump (1.2 cm) on my right breast and thought that was it... I had no idea I had 3 more total! They just felt like they always did with my fibro-cystic disease.
The MRI says they are 2 cm each, but the ones in my left breast are either 2 separate tumors, or one big one... they can't tell yet (which would be approx. 4 cm if it's one). I haven't had surgery yet though... it's October 11-- a BMX with TE and since they aren't sure if I'll need radiation, they are putting off the latissimus dorsi reconstr. and implants. I am going to see my oncologist for the first time Oct. 3 so I'm not sure if it's too early to post here! I've had all my CT scans and MRI's. I'm still in shock, I think, and overwhelmed but trying to remain positive. I am beginning to realize that this is going to be a long haul. My bs told me after the biopsy came back that she had some bad news and some good news... the bad was that I was HER2+, but the good was that there are SO many new drugs to treat it. Anyway, thank you for listening and I am looking forward to coming back here often for support.
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Welcome to the forum Pearlady.....
Jenn...I had my post neo TCH lumpectomy delayed by a bad EKG and I was beyond consolation for days. I felt abandoned by my MDS and just so upset.
Question...when you get your mammos...how long does it take or the results and who gives them to you? Just had my 6 mo post lumpectomy mammo. Last year when DXed I knew the same day...had all the tests mammo, US , biopsy and MRI the first day .
I was all excited to make the appointment to be " deported" in a few weeks and found out my BS does it in the OR and I need pre op testing.....AGAIN....the thought of going through all that again set me back again. I 'm so friggin exhausted from all this. Nearly one year now... I know all of you know how I'm feeling.0 -
Leigh22 you sound like me over 2 years ago. I just had one big one and some pre-cancer in the other. Both mine had to go too. They thought I would get rads but rad onc gave me a pass. They really need to see what's in there and locations before they can say for sure. They also need to see if it's in your nodes. This is the worst part because of the unknowns. Be sure to ask us gals questions. We can feed you info to discuss with your doctors. Sometimes you just don't know what to ask the doctor till you've left the office or feel weird asking. On this site you can talk about anything. Even your mojo!0
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Welcome Leigh - Ask anything, anytime.
Ashla - For the mammos that I have had since surgery they have me wait and then someone comes out and tells me the results. Much better than having to go home and wait.
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Welcome Leigh.....it is all very overwhelming ..especially where you are now. I can't even remember much of the first two months after DX....
You will find lots of good advice and friendship here.....0 -
ashla - I think I know how you feel :-/. Lucky I have a preop appt with the psych onc today...
No idea when today I will find out if the surgery is going ahead.
We are now less than 24hrs till it's supposed to happen and there are so many plans in place including hotel rooms booked for tomorrow night next to the hospital for my hubby and best friend, my other friend has booked flights from another city and taken leave from her job for a week to come and look after me and the family when I get home, I stopped taking Tamoxifen 2 weeks ago, and my MO rescheduled my herceptin Txs which cost me extra script fees.
I feel sick to the stomach because if this doesn't go ahead I have to go out and find a new BS who will work with my PS and figure out when they can be scheduled together - could be months!
Jenn0 -
Jenn I find it hard to believe your treatment center/hospital doesn't have another BS with privileges. Your BS should be doing more. I'd call and start screaming. You know squeeky wheel. you should know by now if its a go or no show!0
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Leigh22 I know how you are feeling. Its true what your Dr. said about the Her2nu. There are now so many drugs available that its no longer the bad news that it once was. Also, what is suppossed to be the Her2nu super drug, TDM1 should be available in early 2013. My onc believes this will be the biggest breakthrough for her2nu positive since herceptin back in 1998. Also the fact that you are ER+ and PR+ gives you a lot of options. Listen, I have been doing this a long time and am still here and doing well, and my tumor was huge - 7cm. The unknown is always the hardest part. The women here will give you lots of support.
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Lago you are right. Women just don't know. Also I have found, having done this for many years, that you as the patient have to be so informed and know to ask the right questions. My onc is wonderful and considered one of the best in the NYC area, but if I don't come up with the questions, I don't get any information.
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Exactly Pearlady!
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Oh my... you guys are making me get emotional here... thank you for so much positive encouragement. You guys have made me feel so welcome... I have felt so alone. I'm trying to be strong, but it's late at night or when I wake up at 2 am that the bad thoughts start creeping in. And Pearlady1, my sister-in-law just sent me an article about that super drug... something about it being Herceptin mixed with a very potent chemo drug that they are calling a "tumor bomb"... I read where it doesn't make you sick or throw up, doesn't make your hair fall out and doesn't harm your healthy cells. I am feeling a bit better already... I feel like I've been on an emotional rollercoaster! Doesn't make it better that my husband had to leave (Navy) right after my dx and he returns on the morning of my surgery!... thanks again for the warm welcome...
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Welcome Pearlady, And Welcome Leigh22 you will feel Very comfortable here ask away all of us are here for each other.
Geesh It is hard to catch up on this thread..
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Leigh and pearlady, hang in there. Cheesy as it may sound, but we're really all in this together. There's no opting out.
Jennt, thanks again for the twitter hashtag. I hope all your surgery pushes through as schefuled and that all goes well.
Lago, congrats on the liver scans. Whew!0 -
Leigh and pearlady, hang in there. Cheesy as it may sound, but we're really all in this together. There's no opting out.
Jennt, thanks again for the twitter hashtag. I hope all your surgery pushes through as schefuled and that all goes well.
Lago, congrats on the liver scans. Whew!0 -
Hi, I'm sorry for barging in (I'm ER- PR-) but you have the most active Her2+ thread going and you all seem so smart and well informed that I follow you every day. For instance, I didn't realize they were deciding on 2 years of Herceptin so soon (even though I ask my onc about it every time I see her) and I first read the NYT article through this thread. I just finished chemo 2 1/2 weeks ago. And, I am meeting with radiation onc tomorrow. I have a few questions (if you don't mind).
-- I feel so sick! I think it is seasonal allergies but I feel run down, achy, hot/cold. I'm wondering how long it took you to bounce back after chemo? I have been doing A LOT ever since I was about a week out in anticipation of feeling better and better but have landed myself back in bed. My blood counts are "good" so they said I'm not immune suppressed.
-- I am slightly PR+, original meeting with local onc said Tamoxifen for five years, my MGH onc says no Tamoxifen after reviewing it with the tumor board and endocrine therapy "guru". Wish I had the extra protection but it seems like it will offer no benefit.
-- They have asked me to participate in a trial for proton radiation. I have no idea how it compares to standard radiation. And, have not come across anyone else who has done it. I will find out more tomorrow. Just curious if you know anything about it? I posted this question under the radiation threads----crickets.....
-- I have had 3 echos, 1 baseline, 1 after neo-adj TH, and 1 yesterday after adj AC. They said that it is "good". I asked for the numbers and they said they were 71, 71, and 62. Does everyone's go down after chemo? I'm bummed that it went down so much even though it is still considered ok.
-- When you say TDM1 will be available soon, is that for early stage BC?
Thank you.......0 -
Hi ladies! I have been around on some other threads and follow this one. I am 98% Er+/ 95%PR+ /Her2+++ and have finished neoadjuvant chemo and Herceptin about 4 weeks ago. I had a good response to the chemo and the tumor appears to be almost invisible on the MRI. I am scheduled for lumpectomy with SNB and ALND on October 5. Becuase I have positive lymph nodes,I will have radiation after surgery too.
My question is when do they start the Herceptin again? And I was told I will need Tamoxifen. When does that start?
Thanks for the info and sending HUGS out to everyone
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chrissera you will keep having herceptin 3 wks after your last chemo, you can have herceptin even though you are having surgery. You had the exact same rx as i did (chemo, lump, rads) I started tamox about 3-4 wks after surgery and did take them during rads - good luck and hope that tumor has melted away!
sduch1 i started feeling better about 4 wks after (i was on a 3 wk cycle) but then i had surgery and that set me back a bit. I was feeling pretty good and then i started rads and that was TOUGH - very very tired for a good 2 mos after i finished. Not familiar with that type of radiation. As for your EF, no not everyone's goes down but they will tell you if yours is still acceptable and it sounds like it is. The other ladies who have had EF drops will chime in i'm sure
welcome leigh and pearlady!
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Sduch1
Welcome to the forum! As for your echos ....wow...they are great! We have lots of ladies her who hav e had serious cardiac issues an have had to stop Hecptin and many have had much bigger drops in EF.....my ef started @ 62!
Do not know about proton radiation therapy....very interested to hear about it..
Hi chrissera,
I had neo TCH as well followed by lumpectomy. I continued with herceptin every 3 weeks right through the entire year.
I started anastrozole..I'm post menopausal... Right after radiation. I had no nodal involvement but had radiation as well.0
