TRIPLE POSITIVE GROUP
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My hot flashes were mild but the did go away as I was further out from chemo. I might have some once in a while (so mild I'm not sure) from the ESD. My levels have been checked so I am in chemopause… last period was 2 weeks before my last period October 5th 2010.
So my point is don't base it on hot flashes.
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Happy birthday, jackboo and momo!!!! Celebrate!!!!
Women get regular periods though cycles maybe anovulatory. Likewise, we get hot flashes years before menopause. My 78 year old mother still gets them sometimes!0 -
Just saw my MO. Since I will hopefully be having a BMX in the next month to 6 weeks she was happy to not start me on Tamoxifen until after that!
I finished chemo almost 2 months ago and started rads but had to stop 2.5 weeks ago. I actually had to argue to GET the Tamox script off her so I can start on it...
I thought that being triple positive, with positive nodes would make that part of my treatment a priority and not an after-thought?????
Thinking it might be time to get a new MO...
Jenn0 -
Jen I know you have access and read clinical studies, lots of information about crosstalk between tamoxifen and her2. My Onc is of the opinion that Her2 BC tends to be resistant to tamoxifen and said that it's the chemo / herceptin brings down my risk of recurrence the greatest and therefore the most important part of my treatment. He initially put me an an AI as he prefers this option for her2 as I was in chemo pause but I developed osteoporosis and my periods returned and he was comfortable with me not taking tamoxifen as he showed me it only reduced my risk of recurrence by a further 2-4% and the risks outweighed the benefit in my case.
My hormone receptors were lowish er+ 40% PR 20% but still pos.
If your having concerns maybe a good idea to get 2nd opinion0 -
Thanks LouLou,
My ER level was in the 90's so have always assumed that the Herceptin would be important, but did not know about the resistant thing... I'm so tired of having to do my own research though - just over it...
Jenn0 -
Here is a pretty new article on this topic LINK that suggests "These and other data suggest the possibility that a subset of HER2-positive, ER-positive breast cancers are driven primarily by ER, and biologically behave more like HER2-negative, ER-positive breast cancers."
It always seems to be complicated. sigh
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Hey everyone!
Welcome Melissa.
Omaz and Arlene thanks for asking bout me!
Jack, happy birthday!!
I'm still in Texas. Leaving tomorrow. Wild couple weeks....I've run the roads and can't wait to get home and start working out. Saw PS yesterday, said I'm healing up just fine. I notice a huge difference in my arm. My TE was big and partly up under my arm, so my veins were always prominent..since the exchange the arm is throbbing....and hurting off and on, like a limb feels after it falls asleep....hope its not LE!...but whatever.....
While I was here, a family friend came up and stayed the weekend. He's a professional dietician, specializes in Onc patients and athletes....lol. So incredibly knowledgeable. Anyway, gave me some FANTASTIC information, especially for you ladies still in chemo.....I can't wait to share it...but no time now...hopefully in the next few days.
Bomb threat yesterday at the airport, so I'm sure tomorrow will be nutty...I'm of to get packed.
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Safe travels Tonlee!
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TonLee - You sound great! I am looking forward to hearing about your adventures in Texas.0
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jennt - Did your PS request that you not take the Tamoxifen until post BMX? Sometimes the clot risk gets lost in starting it before the last big surgery. I have a friend that just attempted a flap surgery, it failed because she threw three clots during the 15 hour surgery, and they never took her off Tamoxifen. I went off my AI and all vits/supps prior to exchange also.
tonlee - I bet you will be glad to get home, be safe!
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Happy birthday Liz & Momo!!!
Toni....did you find your skinny margaritas?
Blessings to all!0 -
TonLee aways sounds great! Can't wait for the info
soltantio research is a moving target. One year they say this the next they say that. It can drive you crazy. That's why it's best to get the articles, print them out and discuss with your onc. I assume you trust your onc. If not think about switching if you can. The gist I got from the article is there is a subset of women that are triple positive that don't need chemo but only Herceptin and endocrine therapy. Also might be a subset that don't respond to Tamoxifen… but that doesn't mean everyone.
As we know there is a subset of us early stagers that get mets but more don't get them than do. I'm almost 2 years NED. I stopped wondering about the "what ifs" but it took me a while to get there. I think now that I am done with treatment (except for ESD) and no more surgeries (except port removal) I stopped thinking of myself as a breast cancer patient waiting for the "bad news." My onc still scans my liver but I'm hoping this next one will be the last.
You will get there too.
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Thanks for the links... Guessing since there is no diagnostic test (not that they do here in Australia anyway) to show whether you personally are going to benefit from the Tamox that I just have to assume it is important... I'm still concerned my MO doesn't seem to think it's that important.
Oh well, I've picked up the tablets and have taken my first one now - so feeling treated again :-)
Jenn0 -
SpecialK - my initial appt with the PS is not until the 10th of August and surgery will be at least a few weeks after that but before the end of September. Will definitely ask him if he wants me off the Tamox before the surgery :-)
I had my last "chemo" drug Taxol on 25th of May and have been on 3 weekly Herceptin since then so it's already been quite a break between that and starting the Tamox!
Since rads is now too risky for me even with a positive node the Herceptin and Tamoxifen are pretty important.
Jenn0 -
TONLEE - glad to see you posting. I was getting worried about you too :-)
Jenn0 -
Soltantio ESD is something I made up. It stands for "Estrogen Sucking Drug" which is what all the Aromatase inhibitors (like Arimidex/Femera) do. My little joke. Yes some of these small tumors get mets. It's more common "statistically" that the bigger ones do or if you have positive nodes but anything can happen. According to the stats my onc gave me there was a 40% chance I only needed surgery… but who wants to risk it. I did the chemo and now the ESD. BTW I did ask my onc "how do we know this will work?" She answered "We don't. We don't even know if you need all this treatment. If we knew who those 40% were we wouldn't be giving them chemo). I have no regrets about doing treatment.
I had scans before surgery. My BS pretty much thought I would be a stage IIIA. Since there was 3 weeks before surgery I had time so he scheduled them. They did see something on my liver so now they keep scanning. Pretty sure they are cysts but of course now that they see something they will scan for a while. If they didn't see anything I wouldn't be getting scans.
There is some test out to see if you metabolize Tamoxifen but it's unrealiable from what I can see.
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Hi all.
Here's a new study trying to figure out why some HER2+ cancers become resistant to Herceptin. The answers are far off as this is all very preliminary, but I thought some may find it interesting.
Inflammation can contribute to resistance to Herceptin
The authors conclude that resistance to Herceptin may be mediated by an IL6 inflammatory loop and suggest that blocking this loop could provide a strategy for overcoming such resistance. The researchers are developing a clinical trial (which may open in 2013) to test the IL-6 blocker tocilizumab in conjunction with Herceptin.
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lago - Cute new picture!!0
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Love your new photo Lago!
My cousin's PET came back and she has cancer of the tonsils. Surgery is next week and guessing they will decide if more treatment is necessary. I've heard that typically chemo and radiation follows. No stage designation yet.
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Yes, glad to see you TonLee. Safe travels home and hoping no problems at the airport.
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Thanks Arlene. I figured enough with the wig picture. New picture shows of my boobie prizes too.
Stinks about your cousin. Hope its just in the tonsils and no need for the chemo/rads. Not sure what you need those for anyway. I had mine removed when I was 5.
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Hi to everyone
Thanks to you all for the birthday wishes and to ashla for mentioning Yorkshire day. Happy birthday to momof2.
Liz
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There was a discussion a while back of 4 vs 6 cycles of chemo in early stage BC (node negative or 1 to 3 nodes positive). The study that had been done on that is now published. They included HER2+ patients. Tx regimen was not TCH, was either AC or Taxol, followed by Herceptin for those who were HER2+. They found that 4 cycles were just as effective and less toxic. Of course this is just one study, and should be interpreted with caution and discussed with your onc if you are currently in tx. Here is the abstract and an article reviewing it. I also found a link to the full article here.
Details from the full article that are specific to HER2+:
Women randomly assigned to receive AC were recommended to start trastuzumab after the conclusion of AC, and women randomly assigned to receive T could initiate trastuzumab concurrently with T or after completion of T.
Sixty-four percent of patients had T1 tumors, 64% had ER-positive tumors, 23% had tumors that were positive for HER2 overexpression or amplification,
47% had high-grade tumors, and 94% of patients had nodenegative
disease.Unplanned subset analyses were performed based on tumor ER and HER2 status. There was no interaction between the number of cycles of therapy and any of these variables, suggesting that no subgroup benefitted from a longer period of therapy.
Abstract
PURPOSEThe ideal duration of adjuvant chemotherapy for patients with lower risk primary breast cancer is not known. Cancer and Leukemia Group B trial 40101 was conducted using a phase III factorial design to define whether six cycles of a chemotherapy regimen are superior to four cycles. We also sought to determine whether paclitaxel (T) is as efficacious as doxorubicin/cyclophosphamide (AC), but with reduced toxicity.
Patients And METHODS
Between 2002 and 2008, the study enrolled women with operable breast cancer and zero to three positive nodes. Patients were randomly assigned to either four or six cycles of either AC or T. Study stratifiers were estrogen receptor/progesterone receptor (ER/PgR), human epidermal growth factor receptor 2 (HER2), and menopausal status. After 2003, all treatment was administered in dose-dense fashion. The primary efficacy end point was relapse-free survival (RFS).
Results
A total of 3,171 patients were enrolled; 94% were node-negative and 6% had one to three positive nodes. At a median follow-up of 5.3 years, the 4-year RFS was 90.9% and 91.8% for six and four cycles, respectively. The adjusted hazard ratio (HR) of six to four cycles regarding RFS was 1.03 (95% CI, 0.84 to 1.28; P = .77). The 4-year OS was 95.3% and 96.3% for six and four cycles, respectively, with an HR of six to four cycles of 1.12 (95% CI, 0.84 to 1.49; P = .44). There was no interaction between treatment duration and chemotherapy regimen, ER/PgR, or HER2 status on RFS or OS.
CONCLUSION
For women with resected primary breast cancer and zero to three positive nodes, we found no evidence that extending chemotherapy regimens of AC or single-agent T from four to six cycles improves clinical outcome.
Review article (need to register, free)
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Lago love the new pic!!! Beautiful!!! I am going to try to update mine with my own hair. Lol!! I too don't get" terrible " hot flashes, where I am a sweaty mess, but I do get hot alot. I have air on, ceiling fan on and a fan next my bed at night and I am constantly pulling sheets off and on. I think the only time I really get a solid nights sleep is when I break down and take an Ambien or Ativan that I have been hoarding since chemo. I can live with this
!!! Also I had my period up to the month before my surgery. Was on a lose dose BC pill, told to come off it before my surgery and havn't had one since. My BW for Estradiol was 
.00 pg/ml (anything under 32 pg/ml ,you are typically in menopause) and FSH was 159.60mIU/mL (normal is 3mIU/mL-10mUI/mL) and this was before chemo. Soooo...my ovaries were in completer failure!!! (which is a good thing for me) omaz-my Mo seems to think my tumor is mainly driven by er+ pr+, that is why he gave me the cytoxan instead of the carbo. with Herceptin. He told me cytoxan is more widely used and I believe had better results than the carbo for highly er+ pr+ BC. I was 100 %er and 95%pr and I am sure you know my story about the HER 2
Safe travel Tonlee!!!
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Dance: I'm one of those who only did 4 and I did TCH. My onc was fine with me just doing 4 versus the 6. She did; however, caution me that 6 was the standard protocol. Again, she was good with it as long as I could finish Herceptin which I didn't. I can only pray that making it through #10 is good enough. I can't change it now. So much of this is just a guessing game.
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I hear ya on the guessing game Arlene! I only did 4 as well.
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Lago you and your bubbies look mahvelous! You would never know you've been through the breast cancer crucible!
Very interesting dance....both..0 -
I only did 4 TC as well and continuing with the H for a year. I sometimes worry I should have insisted on 6 tx but my onc felt good about 4. So tired of wondering, worrying and the what ifs. I just want to be well again!!
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Thanks Bucky. I was only 30%ER 5%PR.
Dance looks like that study was done with 64% T1 tumors (0-2cm). I wonder if the larger tumors were node negative?
Thanks Ashla, if it weren't for the LE sleeve (no wearing in the picture but you can see the tan line and my glowing white arm) no one would ever know. Still strange to see pictures of me with big boobs.
Ladies, don't look back. To be honest I wish I only had to do 4. Who knows what the extra 2 rounds did to me. I know my nails are still crap especially the toenails. You know there is the possibility you didn't need any chemo.
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