TRIPLE POSITIVE GROUP

Jstarling

Hi, HapB Don’t currently live in New England but my son still does and he spent this weekend blowing away in Portsmouth. We lived for over 25 years in the same small town in Massachusetts before my husband was transferred down here to suburban Atlanta about 10 years ago. Never thought this Yankee would say this but we learned to love the south and are still here even after retiring a few years ago. So we head north to visit the grand babies quite oftenand are happy not to shovel snow!

astyanax66

Hi, all,

So, while IHC gave me a Her2 rating of +1 (negative), FISH was definitively positive. I'm over 90% positive on E and P as well. And thus here I am. I'm a history professor and academic dean by day, and I was writing by night...but obviously I'm having to cut back on both. I had a successful lumpectomy last Wednesday (will get final results on March 13) that removed a small IDC tumor (about 7 mm) plus a lot of DCIS. Lymph nodes were clear. Right now, the tentative plan is 3-5 weeks of radiation and 1 year of Herceptin. The hard part for me is the treatment center is an hour north of where I live, and my job is an hour south. While it's easy to say "to heck with the job!" I'm the main breadwinner with a kid about to start college. So, negotiating working from home and figuring out how to schedule all this stuff is a big worry right now, as is the port placement (I have terrible veins, so I do want the port--I just dread another surgery). The lumpectomy went well, but it's the only medical procedure save one in my life where I've not had extreme nausea and vomiting. I have an excellent surgical oncologist who had breast cancer herself. I think once we have a clear plan, I'll be more upbeat.

As far as what caused this and what I can do...My Myriad 28 genetic testing was negative (though I have extensive family history, including my mother). I am overweight, but I walk every day (I am postmenopausal and have hypothyroidism and spinal stenosis, so walking is the best exercise I can do since there is no pool close by). I can't worry about "why me" or "what did I do to cause this." I can control going forward, though, and plan to continue my walking and eat as healthily as I can. (I barely wear any makeup, fwiw).

Hope everyone has a good week!

Ingerp

This may be off-topic, but y'all seem like a good group to pose the question. I was reading about AIs this morning (at 3:30 while I was not sleeping!) and then also about foods that have been linked to lower estrogen levels (by inhibiting the aromatase). I'm strongly considering altering my diet and not going on an AI for ten years. Thoughts? (And HapB--I was without power from noon Friday to 7 PM Sunday. And I'm rural enough that we're on well water--no power, no water. It sucks!!)

deni1661

Jstarling - sorry you have to join our group but you will find amazing support, encouragement and inspiration from everyone here. Please ask lots of questions, we're here for you anytime. Trust in your medical team is a so important and don't be afraid to get a second opinion for peace of mind.

The beginning phase of treatment is overwhelming but things do get better over time. I am in a much better place in my life since diagnosis, both physically and mentally. The women in this group have contributed to helping me "get to the other side" of this cancer journey. You will too!

deni1661

Hapb, so sorry you're dealing with terrible weather and all the power issues! I hope the next storm coming your way is not as bad. We have snow coming our way tonight. I am done with this winter stuff and ready for spring.

Praying for good results on your echo this week so you can continue with the rest of your treatments. You have been through enough!

coachvicky

There is a forum on BCO for lowering estrogen naturally.

There is also a forum for Arimidex users that are doing well.

Guess what? Had my eye appointment. Improved AGAIN!

Vicky

Tresjoli2

coach -yay for improved eye sight.

Hap...is your power back on yet? We got lucky and didn't lose ours this time. We usually do. Scrambling to rearrange my Wednesday plans and meetings in anticipation of the next storm.

Saw my OB/GYN today. Checking FSH levels to see if I am truly in menopause now that I have been off Lupron for over a year. Even if i am...will stick with tamoxifen. It's working for me. I see RO tomorrow. I have no idea why he still insists on seeing me once per year. But..he does. Does anyone else still see their RO annually?

ElaineTherese

Tres,

I still see my RO annually. He likes to check my skin to see how it's healed. Of all my doctors, he's the best educated about lymphadema, so I'm happy to visit. (His nurse took measurements before I did radiation, and he can compare them to where I am now.) He also does a manual exam. On the other hand, I never see my breast surgeon.....

Ingerp

coachvicky--what is "BCO"? I'd love to see that thread.

Tresjoli2

ugh...my FSH is in the normal range and not high! Must call the doc...but I think this means I am still premenopausal ahhhhhh!!!!!!!!!

deni1661

Hapb - I did all 17 rounds of Herceptin and Perjeta. I feel like a science experiment too but in a good way.....it's worth it if my trial can become standard of care in the future. I think that's a ways off though. I try not to obsess whether skipping chemo was the right choice but I had the best possible response with just HP so that's a positive in my book.

Below is the press release about the trial and link to the trial data. I don't see any results yet.

http://www.marketwired.com/press-release/cancer-treatment-centers-americar-midwestern-regional-medical-center-launches-neoadapt-2162863

https://clinicaltrials.gov/ct2/show/record/NCT02689921


Shoulder recovery is very slow going, thanks for asking! My body is not bouncing back as quickly on this one but I am making progress each day.

deni1661

coach, congrats on the vision improvement - that's a bonus!

coachvicky

Ingerp

BCO is this site: breas cancer.org. I apologize for not explaining it.

Vicky

NicoleIsASurvivor

Hi! Taxol also took me down n kept me down. I had awful leg pain and just pain all over, but my legs oh my!!! My oncologist at that time only would allow me to take tramadol and it did nothing. I honestly don't think anything could take that pain away. I had the worst cancer journey. Leslie2016, I also found it hard to find anyone that had the extreme pain from taxol as well. If I did it anyone one can!!! Treatments are absolutely brutal to some, it was for me !!! I pray for a cure, everyone effected with or by this diease, and all other illnesses. God bless you all!!!!

coachvicky

Thanks for the article, HapB.

It reads in part and I inserted my comments ( ):

"It governs your menstrual cycle (none), controls functioning of the ovaries (removed) and uterus (removed) and stimulates the normal growth and division of breast cells (removed)."

Really, how much estrogen could I be "naturally" producing?

I read in another forum about a urine estrogen test. I see my Primary Care in late March and he wants to discuss this.

Vicky

Cherry-sw

Hi all, I have been out of this thread and even from BCO, was partly busy and partly depressed, I believe that Tamoxifen is to blame. I saw my cancer rehab councelor and the psychiatrist last week and after listening to me they said it they saw it too many times, i.e. Tamoxifen causing a deeper depression, so they always recommend an anti-depressive with it. In my case I got a new one they claim will help to control my appetite since I am trying to lose weight.

Still I felt like I was out of this thread for juast a few days but I saw I had several pages to read and spent two hours doing that while waiting for my MO appointment after my rads. I am so glad I have all of you. The councelor and the psychiatrist asked me whether I had any local support group and I said, no, they suggested a couple of groups and although I thought it may be a good idea I am still reluctant, it would be nice to talk to people but on the other hand I already have people to talk to, and from the very beginning when things look so awful and morbid, all of you who show support and kindness, I am so thankful, you have no idea.

Cherry-sw

fluffqueen, I am so sorry about your nephew, this is by far the saddest thing I heart today. I was reading your second post and suddenly realized that my jaws were hurting and even my hands because I was holding my phone so tight without noticing it. I overall hate to hear when cancer affects children in any way but children who actually get diagnosed and must undergo these brutal treatments this is just so cruel and unfair, my sympathy to all of you and especially your nephew. Hug

Cherry-sw

Posey, thank you for complementing my wig, I have not been using it so much at all because I did not go to work and it had been winter, still is here, big time(!), so I could go in hats, but when I actually wore it I almost feel normal and had my confidence back. And it looks so much like my own hair used to, it felt surreal when I had to take it off. My own hair are growing strong, I believe I will have a pixie by May.

About high maintenance bitch)))) I thought it was very appropriate but I cannot take the credits since I picked it up from 30 Rock I have been watching lately. It was used in another context but this show is just full of memorable hillarious quotes) Cherry

Tresjoli2

cherry be careful with what anti depressant you take. There are very few that you can take when you are on tamoxifen. Effexor, celexa, and lexapro are your only options. The others interfere with the tamoxifen

Rebeccasmile

hi all good heart loving people

Am recently diagnosed Er pr her2nu positive BC

am scared hearing her2nu positive .

Is it aggressive and recur??

How many years I can live?

Plz plz reply

Cherry-sw

moody, your experience is awful, I had to read it twice just to follow what exactly happened, I can imagine your anger and the tech’s frustration!

But, coach, you are hillarious! You made my day, you do possess a talent to say things that light up a rum, I wonder if you can say so in English and if it menas the same thing, i.e. the most witty, clever and kind thing everybody just needs to here, especially here, for my part, especially now

Cherry-sw

Welcome all the newbies, I am so sorry you gad to join us, but you will never regret it, these boards is my lifeline. Another advice would be to join a chemo group that starts the month you begin your treatment, you will make friends for life

Cherry-sw

I just saw MO, a planned visit to discuss everything that she had to say to me that always turns into a meeting where she has to answer alI the questions I have for her. I usually have a list with the stains of tea and fruits on it, she understands that I have a block note next to me where I write down things that I need to ask her. She is very kind but I see how she is looking at me even though she answers patiently. I wonder if she nicknamed me something like "barracuda" for herself. Today she basically had to kick me out, she was late for her lunch.

Anyhow, since I already had these questions on my list and red the discussion just prior the appointment, I asked her about the food and drinking emphasizing that some sources claim that we should cut on carbs, meats, diary, sugar and drinking alcohol to prevent the recurrence. And she said that there is no scientific research that proves that eating all these foods can cause bc and there is certainly no such research that proves that it can prevent bc or recurrence. We should avoid fat food and sugar, not absolutely, but significantly, drinking a glass of wine a day is absolutely ok. There is research that proves that high consumption of alcohol increases risk for bc but no research that proves that it causes it. Her nurse office also recommended strongly to buy the organic products, which I switched to since my dignosis, it has increased, almost doubled our grocery spend but I will try to stick to it. I also mentioned to her that the psychiatrist from cancer rehab told me that up to 2,5 bottles of wine a week was ok for women! MO's Dolly Parton eyes just got even bigger and she asked, did X say so? It does sound too much and I said, you work together, you ask her. I am treated in the most prominent academic royal hospital in Sweden, MO is in her 60-ies, she is a rank higher than a doctor, she is a consulting specialist, and she has good relationship with our chief professor who is responsible for the national guidelines for bc treatment who consulted me regarding my further treatment back in fall. This professor, according to MO, spends most of his time attending research conferencies over the world and then analyses the results. But MO strongly recommended to stay on Tamoxifen and go on with all my treatments and that they in their turn will try to do all they can to minimize the SEs, and then according to her my prognosis will be good. My exercise sounded very good to her too. And I got a mild deuretic. I did not even dare to ask her whether one could stick to the plant food, avoid alcohol, exercise like I get paid for it, and therefore ditch anti-hormonals, I would had never done it, one thing that she considers me a PITA and another if she would looked at me like I were an idiot.

My mom had a colleague back in 90-ies, beautiful lady, a husband and three boys, she got bc when she was 46. She told my mom that she wanted to try alternative treatments, whatever it was back then I had no idea, but she did not want to feel mutilated, to lose her female features and so on. Her husband got also diagnosed with stomach cancer at the same time and she said she needed to prioritaze him. He underwent the treatments and he lived, she died after some time, I do not remember exactly how long it took, I was not living there anymore, but we are talking probably a couple of years at the longest, her youngest boy was in his early teens, it was devastating for the family. My mom visited her in the hospital and she said she regreted very much that she did not do what the doctors offered her from the beginning.

Ingerp

coachvicky--sorry--duh! I've been off BCO for about a year and a half. I'm a little behind on my acronyms!

And stupid, basic question. I see many posting who have what I think (hope?) will end up as my dx (IDC, Stage 1A, 0 nodes, ER+/PR+, HER2+). I get the Herceptin but so many of you are/were on Taxol too. I admit the idea of chemo scares the bejeesus out of me. If nodes were negative, why are you on Taxol?

Cherry-sw

Ingerp, chemo is the baseline for Her2 pos patients with an invasive bc. Herceptin was first tried with chemo and considered to be most effective with chemo too. SpecialK can give a better answer

Ingerp

Thanks, Cherry. I've been doing some reading--lots of women asking about herceptin without chemo. I also saw some studies about not being on herceptin for a whole year. I am getting ahead of myself, but I do like to have the information going into these decisions. It calms me down.

See it looks to me like only a 3% difference in 3- and 5-year overall survivor rates between herceptin with and without chemo.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5759796/

SpecialK

coach - body fat, the liver, and your adrenal glands continue to produce estrogen after menopause and/or removal of ovaries. Aromatase inhibitors seek to control the conversion of secreted androgens to estrogen, which is why post-meno women are still put on anti-hormonal therapy. AI drugs are the more common choice because they have a performance edge over Tamoxifen, particularly in Her2+ patients, unless one is osteoporotic prior to treatment. You can do a blood draw for the extra sensitive E2 estrogen test to determine what your serum estrogen level is - this is different from the test that determines whether you are truly menopausal - this test is supposed to give a better reading of the type of estrogen that is produced by the aromatase conversion and helps determine whether there is benefit from taking an aromatase inhibitor, but the true reading needs to be done off meds.

ingerp - prior to the use of Herceptin for early stage patients all trials were for Herceptin added to chemotherapy. Because the early trials (HERA and BCIRG006) had a significant and demonstrated beneficial effect from adding targeted therapy to chemotherapy (either AC-T or TC drug regimens), doing this became standard of care for early stage Her2+ patients. Withholding chemotherapy presents potential ethical considerations because there is probably benefit for the use of chemo absent the Her2+ aspect of the cancer. One of our members, deni, has just participated in a trial that combines targeted therapy, Herceptin and Perjeta, with anti-hormonal therapy but no infused chemo drugs. This is an early trial and unlikely to yield changes in standard of care for quite some time even if the outcome provides benefit for the trial participants. Using Herceptin without chemo is available as an off label choice for early stagers by oncologists and is very infrequently done for those with significant co-morbidities that prevent use of the chemotherapeutic agents. Several years ago the use of Taxol only with Herceptin became available for those who are node negative and have tumors less than 2cm as a single chemotherapeutic agent option, which usually is much more tolerable than regimens that consist of multiple drugs. So, to answer your questions - Herceptin (and Perjeta in cases that warrant its use) when added to chemo produces better results than chemo alone. Herceptin (and Perjeta) without chemo has yet to be proven to provide results that are as good, but is now being looked at. Changes to standard of care require rigorous FDA trialing and are slower to materialize than patients who are in the throes of treatment decision making would like, of course. If I was diagnosed today instead of 2010 when I was treated, I would have had Perjeta but it was not yet approved - it is now standard for those with my clinical stats due to trials that showed the benefit for a certain subset of patients.

Jstarling

Thank you so much, SpecialK, your information really speaks to me. This Friday I have an appointment where I will get all the test results, hopefully find out that the margins are now clear and start a plan for the next step

Cherry-sw

Hap, I have not been running outside for a few weeks now since my PT told me that I could not do it with my current plantar fascitis condition. It is quite cold here too, below zero most of the time and lots of snow. But I have been running on my thread-Mill, or I think I have the one that is called eclipse. I am trying do at least 40 min at the decent resistance and when I am done I am usually drenched with sweat, but it is going too slow, I mean losing the weight. I have ordered the new jogging shoes though, will pick them today, expensive but some amazing cushioning so I have great expectations.

I know what you mean about the treatments and we do still have to undergo them to be able to live but I would say like this if I can tolerate them I will do it. I agree with you that your exposure to scans might have caused your bc, we have a lady in our chemo group who was treated for leukemia at her 20-ies and now at her late 40-ies she got bc, they told her the same thing. But I do not have any idea what have caused mine. As I have mentioned I consumed a lot of turmeric, veggies, cabbage and not that much meat at all, we had periods, months without red meat because some articles mentioned it increased risk of colon cancer, so the eldest girl used to tell me, mom please let us buy some beef, she loved it, the poor thing. That is probably why the youngest does not like meat, she is not used to it if it is not grounded, five-six years ago we seldom ate beef and we only ate pork during summer when we occasionally barbequed. And still I got this bc. As one doctor told me cancer is a result of occasional system failure, that is still extremely rare. Cells going rogue, dividing wrong etc, happens all the time but it gets corrected On the cellular level. When th system responsible for this correction fails to destroy it you get cancer. It is just an unfortunate clash. Majority of women with pod genes fo not get bc. Those like me, no family history, running three times a week, we do.

Cherry

Cherry-sw

And I also wanted to share with you all that we are getting a puppy in the end of April. A small Welsh Corgi Pembroke, hopefully a red one. We have not meet the puppies yet and we may fall for one of what they call tricolor, sort of like German Schaffer color, we will see. Our youngest became sort of calmed down, because she finely knows she is getting one, but on the other hand she cannot wait to meet him nd I am afraid she is going to dissolve into happiness sitting there surrounded by all these puppies when we will be visiting the kennel for the first time in the beginning of April to pick "our" puppy)