Sep 24, 2019 10:49PM - edited Sep 24, 2019 10:50PM by Magari
Taco - Glad to hear Letrozole is working well for you. I switched to it about a week ago and would be *thrilled* to see diminished hot flashes.
Testing, treatment, side effects, and more.
Posted on: Jan 31, 2011 06:30AM - edited Dec 10, 2012 07:55AM by TonLee
This is primarily for people who find themselves with THREE +'s by their diagnosis.
If you are new to breast cancer, please click on the link below and read. It is "What I Wish I Knew At the Beginning of Treatment."
Posts 37951 - 37980 (38,570 total)
Sep 24, 2019 10:49PM - edited Sep 24, 2019 10:50PM by Magari
Taco - Glad to hear Letrozole is working well for you. I switched to it about a week ago and would be *thrilled* to see diminished hot flashes.
Sep 24, 2019 11:14PM WC3 wrote:
Sep 24, 2019 11:17PM Wheatscapes wrote:
Hey everyone. I finished weekly Taxol today, so I don’t go back to MO until three weeks for Herceptin infusio. Forgot to ask my doc - will I get all the pre meds each time I go for Herceptin? Hope not.
Sep 25, 2019 06:54AM BigPeaches wrote:
Not sure what you mean by "Pre meds" I get tylenol and benedryl before every infusion.
This has probably been disgussed over and over here, but is black cohosh ok for triple positive folks like us? Everybody keeps telling me to take it because it helps with the hot flashes, which are terrible for me. Of course I'm asking my doctor first, but wanted to see what thoughts were here.
Side note: I started taking Biotin about 6 months ago, in an effort to get my hair back. It's not working for the hair, but I haven't had diareah since.
Sep 25, 2019 07:09AM Ingerp wrote:
Margun--Trastuzumab is Herceptin (see lower left under "Chemotherapy").
Wheatscapes--no pre-meds for Herceptin only. That said, those appointments always seemed longer than they should have been for what I told myself would be a quick 30-minute drip. I checked in with my MO or her PA every other time, which added about 20 minutes, and I got an IV every time, which meant pre-warming my arm, getting the IV, waiting for the H from pharmacy, . . . . Seemed to always take like an hour and a half.
Sep 25, 2019 11:26AM BigPeaches wrote:
I'm never out of the Cancer Center faster then 2 hours and if I have to see the Doc and get labs, count on a good 3 - 3.5 hours.
Sep 25, 2019 02:32PM - edited Sep 25, 2019 02:38PM by HeartShapedBox
Big Peaches- herbalist here, black cohosh is a big NO for us hormone positive women as it contains phytoestrogens (like soy does). While there's some controversy regarding phytoestrogens hurting or helping hormone positive breast cancer in general, (as phytoestrogens can actually help LOWER estrogen in high estrogen women), for women already on endocrine therapy, all they do is add estrogen back into the system (albeit weakly), which is how they help alleviate hot flashes.
Sep 25, 2019 03:52PM rljes wrote:
Severe Hot Flashes: anyone have any solutions other than gabapentin, oxybutynin, Effexor or Paxil? I was going to try black Cohosh, but since HeartShapedBox said that's not a good idea, I won't.
I have been approved for SBG Nerve Block (Stellate Ganglion Block) which is suppose to ease Hot Flashes (50% chance it will work) but Can't get a ride to the specialized doctor. Any Suggestions out there?
Sep 25, 2019 04:10PM Kimmh012 wrote:
rljes, There has been some that say Vitamin E has helped with Hot Flashes ... mine are coming more frequent and the night sweats are awful!
BE CAREFUL if you are in active Chemotherapy, it is an antioxidant so my Onc said I have to wait until all Chemo is done, 1 more Chemo then just H&P.
Sep 25, 2019 05:17PM rljes wrote:
Hi Kimmh012 - - thx for the feedback -I've been taking Vit E for years, and I've finished chemo/Herceptin almost a year ago. Not starting Tamoxifen until I can get my hot flashes under control. They are so severe I have panic attacks if I'm out in public, so I've become a hermit. ( also have tried acupuncture)
I'm almost to the point of taking Estrace Pills again. I'm that desperate.
Sep 25, 2019 06:45PM Magari wrote:
Re Vitamin E and hot flashes https://www.breastcancer.org/tips/nutrition/supplements/known/vit_e
"Vitamin E does not appear to be effective for treating hot flashes in women who have had breast cancer."
Rljes - My MO prescribed Clonidine transdermal for me. Can't say for sure whether it helped or not; I had to discontinue due to skin burns from the patch.
Just increased my Effexor from 37.5mg to 75, and switched my AI to Femara because hot flashes are an issue for me, too.
Sep 25, 2019 07:03PM Kimmh012 wrote:
Magari, thank you for that information.
Rljes, Sorry this has taken such a toll on you, praying you find relief soon.
I just purchased a necklace mini fan and an essential oil inhaler "balance" that was suggested by some women in my support group, at first sign of hot flash that usually starts on the back of my neck, I use it, so far so good.
HAVVA Balance, Nasal Inhaler with Synergy Blend of 5 Essential Oils to Reduce The Effects of Hormones in Women https://www.amazon.com/dp/B07GJP139X/ref=cm_sw_r_cp_apa_i_c..IDbR1GK1JM
Sep 25, 2019 11:50PM Jumpship wrote:
I am 5 years post-surgery and 4 post-TCH. I have a job and drive my kid 20 hours a week but I’m only 50 and I am so fatigued. Doc recommending a stimulant, like for adhd, to help with the fatigue, which generally hits about 6 hours into my day. Anyone else have this overwhelming, mostly daily fatigue? If so what has helped? On mild levothyrixine, exercise, don’t sleep well thank you exemestane
Sep 26, 2019 04:35AM coachvicky wrote:
I take a small dose of Ritalin (https://www.drugs.com/ritalin.html) twice daily. It keeps me focused and when I feel tired I can still accomplish what I set too.
Sep 26, 2019 05:27AM - edited Sep 26, 2019 05:28AM by Ingerp
Jumpship/Coachvicky--who is prescribing (or will prescribe)? I've heard of this, am very interested, but don't know if I should talk to my MO about it or my PCP. (I thought I was doing relatively well energy-level/fatigue-wise but had a wedding last weekend absolutely ruined because of the overwhelming fatigue. Kind of a bummer. Some of my kids have had ADHD meds in the past and I like that you can take it on an as-needed basis.)
P.S. Coach--what dosage are you using?
Sep 26, 2019 07:24AM BigPeaches wrote:
HeartShapedBox, thank you for the info, that's what I was afraid of. It's still in the upper 90's here (Fall, where are you??). It seems my only option is to sleep naked! LOL
Sep 27, 2019 09:24AM coachvicky wrote:
Correction to my earlier post.
I got my Rx bottle, I am actually taking Adderall Xr Caps, 10mg, twice a day..
Here is a comparison chart I found that may help as to what to ask: https://www.diffen.com/difference/Adderall_vs_Rita...
Sep 27, 2019 12:17PM rljes wrote:
thx for the info, unfortunately I can't take clonidine, it lowers BP and mine is low enough (90/60) - I too have a mini fan attached to my purse and one of those cooling scarfs I wear when I have to go out. The night sweats are horrific. at least twice a night I wake up drenched from head to toe, and have to change clothes and sheets. its exhausting. (I can't sleep nude - I'll have 'naked dreams") I have a window a/c as low as it can go, box fans and a ceiling fans going. Counting down the days till winter.
Its just hard to believe after all these years of women going thru menopause, they can't come up with something that will work.
Sep 28, 2019 05:50PM 1207262 wrote:
I have a question... sorry if it’s ridiculous. If someone who’s triple positive gets neoadjuvant chemo and Herceptin treatment, is it possible for the HER2 status to “die off” and only be left with HR positivity? Or is that not how these things work at all? Apologies!
Additionally, is there a way to see how well endocrine therapy is working or works for a specific person?
Sep 28, 2019 06:33PM ElaineTherese wrote:
Cancer cells can mutate after treatment, so it's possible that HER2+ cancer cells could become HER2-. However, I know of several HER2+ breast cancer patients who suffered recurrences, and their cancer returned as HER2+.
If you want to know how well endocrine therapy is working, it may depend on whether you're doing Tamoxifen or an AI. I'm doing both ovulation suppression (OS) + an AI (Aromasin), and my doctor has tested to see how much estrogen is in my blood. If the OS + AI are doing their job, I should have very low levels of estrogen, if any.
Sep 28, 2019 06:41PM 1207262 wrote:
thank you for your reply ElaineThere!
That makes sense about the estrogen. Thank you!
For the receptor status question, I meant more about current treatment, not a Recurrance. Sorry if that was unclear!
For instance, if someone who’s +++ undergoes chemo+Herceptin and is tested again, could they possibly come up as HR+ and Her2- before continuing on treatment (mastectomy and endocrine treatment etc)?
Also, I was asking about estrogen blockers effectiveness in regards of concern for “crosstalk” resistance. I’ve read about this online and it’s frightened me that the endocrine treatment won’t work as well for triple positives… the Tumor is very strongly both ER+ and PR+ I think 97% and 90% respectively. The HER2 status was 2 on ICH so they had to send out for the second test and it was positive for FISH
Sep 28, 2019 08:07PM 1207262 wrote:
additionally, if someone who is +++ takes nernylx and an endocrine therapy, would there be any sort of “crossing each other out” effect there? Would they preculde one another’s effectineness at all? Can they be taken concomitantly? Sorry for the spam! Thank you!
Sep 28, 2019 08:50PM Tresjoli2 wrote:
Noticed this morning my scanxiety creeping up on me. I'm 4 years out from treatment, and at my last annual scan, the radiologist saw something small she didn't 100% like, and so for the first time I got "come back in 6 months" to have a rescan of my left breast.
That appointment is about three weeks from now. I haven't told anyone - not my mom, not my husband, not my best friend. I'm too afraid they will all panic. I went over my last scan with my MO for almost an hour after I had it to really make sure we should wait six months...I felt comfortable then, but now I'm kicking myself...why didn't I just do a biopsy then? Sigh...because I was tired of being sick, and I didn't want to be touched anymore...that's why...
I'm sure it is fine, but I feel jumbled, and anxious, and well, alone. I have been having nightmares.I feel better now that I have told all my +++ peeps. God I hate this sh*t.
Sep 28, 2019 11:01PM - edited Sep 28, 2019 11:03PM by hapa
1207262 - I had my tumor retested for Her2 after neoadjuvant chemo and it came back negative. It was IHC negative (1+) and FISH negative on my original biopsy, IHC equivocal (2+) and FISH postive on a second biopsy a couple months later (which put me on TCHP), and then FISH negative at surgery. I have no idea if it was really negative the first time, if it changed after 1.5 months of neoadjuvant hormone therapy, or if it was heterogeneous all along. My guess is that it was always heterogeneous.
I am currently taking Nerlynx and anastrozole (and zoladex). I believe most, if not all, of the HR+ women in the Nerlynx study would have been taking hormone therapy as well. I also took anastrozole while I was finishing up Herceptin.
Tres - I'm sorry. I hate this sh*t too. I got anxiety over my freaking blood draw a couple weeks ago. I try not to think about it but it's hard not to.
Sep 29, 2019 07:17AM coachvicky wrote:
Tres ... if it was REALLY REALLY REALLY suspicious, you would not have left without a biopsy right then and there! This is most likely "caution."
My prayers for you.
Sep 29, 2019 09:38AM - edited Sep 29, 2019 09:58AM by SpecialK
1207262 - I don't think the administration of Herceptin necessarily causes the Her2+ aspect to "die off", rather the mutation may change in recurrence, and agree with ET that is where you would most often see the change in receptors and Her2 status. That is not to say that there are not patients who fail to respond to either Herceptin and other targeted treatments and/or anti-hormonals, there certainly are, but they are not the majority. That said, it is possible to see changes in status after neoadjuvent treatment, particularly if the receptors and/or Her2 are not particularly strongly present. If you are wondering about this you should certainly request new testing of the tumor post-surgery. It is important to know that tumors are often hetergenous so whatever slice is looked may not be indicative of the tumor in whole - some parts may express homone receptors and Her2 positivity more strongly than others. Is your mom post-monopausal? Has there been discussion of the approach to anti-hormonal therapy? I believe most of the crosstalk look has been at Tamoxifen, and I know my oncologist favors the aromatase inhibitors for his Her2+ patients.
tres - sorry you are dealing with scanxiety - it is hard. Crossing my fingers for everything to go smoothly and this be nothing. I feel ya - my labs are wack, indicating bone issues. My MO wants a bone scan and I have been resistant, wanting to try manipulation of my Vit D and weight bearing exercise first. All I am doing is putting off the inevitable scan, and I too am over it this far down the road.
Sep 29, 2019 11:34AM 1207262 wrote:
Thank you for your response. I've been lurking a while and I admire how knowledgable you are and your helpfulness on these boards! She is premenopausal, but she is very into preventative measures. There is discussion about ovary removal and then an AI. I've read some studies that those cause problems with triple positives as well, which deeply concerns me. It is my (albeit crash-course-internet-educated) opinion that the tumor is more hormonal driven than HER2. The percentages are very high for both ER and PR (which, does that mean anything in regards to responsiveness to medication?).
The pathology report from the biopsy also states that there is DCIS involved. I've read that DCIS is much more likely to be HER2+ than IDC. Is it possible that the DCIS is the HER2+ and not the IDC? Also, would that make any difference? There was only one biopsy so far, however. I assume they used the same "sample" for the ICH test, the HR testing, and the FISH test. My knowledge is limited on these things- I'm a digital media major (but I do work in a pharmacy!) lol.
Additionally, do you think there is a benefit (or is there any evidence of benefit) for ovary removal alongside an AI for stronger preventative measures?
The "game plan" thus far is neoadjuvant chemo-herceptin(the usual combination, I'm not sure exactly the official drugs involved right now, it's slipping my mind) scheduled for tomorrow, granted the all-clear from one more test. Depending on the response of the neoadjuvant treatment will guide the next steps before and after surgery (either a single or double masectomy- she doesn't want to deal with the possibility of a second primary and does not want reconstruction).
I'm concerned about the subtype of the tumor (Luminal A, Luminal B, or HER2+ driven) and wish there was a more commonplace way to test this out. My mom won't push for these things because she's very trusting in the medical community and that they know best, especially since we're at one of the best oncology hospitals in the United States and her doctor is the head of the Breast Cancer department there. I, however, want answers! I want individualized treatment! Wish it was the norm! It should be!
SpecialK, also-- I hope everything goes well with your bone vitamin levels!
TresJoli2-- I understand the scanxiety. I'm awaiting some results right now too and I'm so anxious I could throw up. I'm praying all goes well for you, too!!!
Hapa-- thank you for your answers as well. It is so confusing to me how these things change so much. Praying all is/stays well for you, too!
You ladies are all a blessing! Thank you and prayers for all to be/stay well!!!
Sep 29, 2019 11:43AM Sejay5 wrote:
Hello, I was just wondering if there were any ladies out there who have had neoadjuvant chemo? I've finished the chemo but I'm still on herceptin, pertuzamab and tamoxifen. I'm pre menopausal and I was offered ovary suppression instead of tamox but I chose the latter. I've read conflicting reports that tamox might not be the best if her2 positive as well. I was just looking for success stories from ladies who were er+ and her2+ who had neoadjuvant chemo and then a year of herceptin and 5-10 years of tamoxifen. I had pcr in the lymph nodes but there was still a small amount of tumour left in the breast. Many thank
Sep 29, 2019 01:40PM SpecialK wrote:
sejay - look at the signature lines of the people on this thread, you will be able to see who had neoadjuvent chemo and Tamoxifen or AIs, and what their dates of treatment were. Keep in mind that your neoadjuvent treatment was likely because you received Perjeta. Prior to the approval of Perjeta for early stage treatment it was unusual to do chemo and Herceptin neoadjuvently - look back at the beginning of this thread and you will see the majority of us had surgery first. While pCR is desirable and potentially indicative of successful treatment, neoadjuvent treatment with targeted therapy was not designed to eradicate the tumor in the breast - it came about as current methodology to quantify whether adding Perjeta to Herceptin could increase successful treatment. Chemo and targeted therapy is a systemic approach - surgery is for operable tumor removal.
1207262 - you are most welcome - I've said it before, will say it again, helping others who have come behind me is my silver lining! The learning curve is steep, but you are asking great and informed questions, so good for you!
As far as the Tamoxifen versus AI question I will say my MO prefers the AI. I had already had a hyst/ooph years before diagnosis with breast cancer, but either ooph or ovarian suppression is an option that should be considered when deciding which type of anti-hormonal med to use. Worth a discussion with the oncologist. I had BCI testing done at the five year point to help determine whether to add additional time to my anti-hormonal therapy. I needed to take a holiday from Prolia injections because I had been on it quite a while (I had osteopenia that worsened after chemo and the first six months of Femara, so started Prolia to help stregthen bones and it helped tremendously) and I suggested switching to Tamoxifen to see if it would help maintain bone health, and he flatly refused. Of course, this is one opinion, but this is something you should discuss with your mom's oncologist as there are a number of factors used in determining which medication to go with. There are certainly folks on this thread who have done very well on Tamoxifen. There is also some segment of the triple positive population that would never recur even if they didn't take anti-hormonals. Unfortunately, we are not at the point of being able to figure out who that is, so we all take the meds and hope for the best.
On the subject of high ER and PR, the high ER supposedly helps responsiveness to anti-hormonal meds, and the high PR generally means the tumor is possibly less aggressive than low PR, and also helps responsiveness. It is also important to understand how percentages of ER and PR are derived - essentially the pathologist looks at 100 cells under the scope, and counts the ones with a receptor. say 90 out the 100 have a receptor - 90% ER+. It is possible that a slide of cells taken from a different part of the tumor could yield a more, or less, positive result. Here is some study info:
"In the National Surgical Adjuvant Breast and Bowel Project (NSABP) B-14 trial, a randomized phase III study of tamoxifen vs observation in women with HR-positive breast cancer, the levels of ER expression, analyzed by quantitative reverse transcriptase polymerase chain reaction (qRT-PCR) analysis, was also predictive of tamoxifen benefit. A relationship between ER expression and response to endocrine therapy was also observed in neoadjuvant endocrine studies of aromatase inhibitors including letrozole and anastrozole.[12-14] Interestingly, compared with tamoxifen in the neoadjuvant setting, aromatase inhibitors may be able to induce a response in tumors with lower levels of ER, although the sample sizes in these studies do not allow for robust conclusions in this regard."
As far as DCIS and IDC, since it is the IDC that is driving these decisions (chemo & Herceptin) I believe they would be making sure that this is what is being tested before subjecting your mom to harsh systemic treatment, I wouldn't worry too much about them using the DCIS portion. Pathologists can tell the two from each other, and many of us with IDC also have DCIS present - I definitely did. Even though there was one biopsy, they should have been multiple "cores" done of the tumor ( I had 6 cores taken) and DCIS and IDC look different from each other. Lab testing does not use the same exact area - thus the multiple cores. If staining is done that particular piece of the specimen is now fouled for subsequent testing. If you wish to learn the subtype some pathologists will expand on that, or you can request a Mammaprint. I was fortunate that my oncological breast surgeon happened to be participating in a study with Agendia, so I had Mammaprint done, which included my subtype. It is an expensive test so it is important to determine whether insurance will cover it.
Thanks for the good wishes about the bone issue - I have had elevated alkaline phosphatase for a while, which is generally not a good thing. It may have been caused by some dental work (which is what I am hoping, and that I am a slow at recovering) but can also be parathyroid problems, or a signal of mets. Bleh...