TRIPLE POSITIVE GROUP

PoseyGirl

I am hormone and Her2 positive and had the AC followed by Taxol. We are a regional cancer centre drawing in patients from hours away. So I think there must be more thought that goes into it versus hormone receptors. I am guessing stage. Overall profile, as SpecialK says. I was jus scanning over material on it, and can see no reference to AC being used for certain subtypes over others. AC seems to be one of those gold standard treatments used for local and locally advanced bc. Decisions to use other treatment combos that are proven alternatives are likely up to the oncology team and their preferences. That's what I get from info out there.

Cherry-sw

Lita1990, you are right, how could I miss it, I am becoming very drowsy and missing things I guess, it did not usually happens to me. I also have flashes at the corner of my left eye, my GP wants me to check them at once, which in this country means tomorrow 8 AM at the earliest. I may be a retina issue and I have been having it for a while now and then red somewhere in this thread that it could mean problem and called her, she said we need to check it up as soon as possible. I just though, right, just something I needed now.

SpecialK, thank you, when I read your explanation it soothes me, really, it is like reading a really good edited text composed in a popular and pedagogical way, this is also a talent, you should take this credit. If I would have got the same explanation from my oncologist I would have probably felt calmer, like I were participating in the process. I called another oncologist who will be arranging for the second opinion and she said that T regimen for my stage become a standard protocol a couple of years ago based on the international studies.

Once again, thank you for your help guys.

Cherry

Lita19901

Posey - I think the Taxol + Herceptin protocol is used only in early stage BC but I'm not sure what that includes - Stage 1 and 2 or 1-3

SpecialK

Here is a link to the summary of the Taxol/Herceptin trial for early stage BC.

http://www.dana-farber.org/uploadedFiles/Library/modules/clinical-trials/clinical-trial-summary-apt-trial.pdf

coachvicky

I have good news that I wanted to share.

I don't know how I could be where I am today without the support and knowledge sharing from this forum.

My port is GONE!

It was bittersweet seeing my Surgeon yesterday. He is the person that saved my life. Had he not pursued looking for the missing marker in the first biopsy, the other cancers would not have been found. By the time they would have been discovered, I know I would have been stage four and the cancers elsewhere.

He removed the port in his office and it was as easy as he had promised.

This part is funny. He called DH yesterday and told him to have me put Lidocaine over my port as if I was having treatment. I did. When he gave me the shot to numb the area, he said I shouldn't feel it because of the Lidocaine's numbing effect. I laughed. I said Lidocaine (I believe) is given to "psy" the patient into believing it works and the port won't hurt. He said his Mother (recently diagnosed with a blood cancer) said they same thing. Yep. We have ports. We know. I think Lidocaine is really used so that the lab tech has to clean it off with some pressure to ensure the port is in the correct place. I once forgot to use it and it didn't hurt than much more than usual. Maybe it works for some but never did for me,

I could move my neck at night and not feel the tug of the port. I did keep it. I am not sure what I will do with it yet.

I won't have a dent in my chest and should have no extra skin sagging on the breast. My port scar is very hidden. My Surgeon had me sun bathe before he put it in and he place it under my swim suit strap location.

I am really feeling the end of all of this.

Vicky

shelabela

Vicky, That is great! 1 Step closer to being done with journey!

Lita19901

Thank you, SpecialK, for posting the study. It's the size, then, in addition to stage, that decides who has to have more than just Taxol and Herceptin.

I'm wondering if anyone here has knowledge of chemo drugs that don't cause peripheral neuropathy. I have an inherited PN that is annoying but doesn't cause pain or numbness. It's my understanding that Taxol and the other taxanes cause PN. I can't risk treatment that could cause adebilitating advancement of this condition.

Cherry-sw

Congratulations coachvicky! your surgeon seems to be a very thoughtful man, he cares about the looks, asked you to sunbathe before the removal, very kind of him.

Cherry

Cherry-sw

SpecialK, I saw the results of this study published but not in the same format. I did not know that it was that old, I though it started at 2010-2011. I understand that it is what they based this treatment on and the overall results I saw published in different articles seem to be very good in terms of disease free survival. Thank you for posting it. I got it confirmed for my from the other clinic that this is a standard protocol for my stage so I got my explanation and it feels good. I is just sometimes I see that people get AC but as lita19901 pointed out it was not exactly the same diagnosis. Cherry

SpecialK

lita - it is usually taxanes (Taxol, Taxotere, Abraxane) and platinum based agents (Carboplatin) for breast cancer treatment that cause CIPN issues, temporary for most, but permanent for a number of patients. My mom had a degenerative neuromuscular disease and also had extensive PN. She received Methotrexate, single agent, for the acute onset of this disease when she was in her late 50's, and I believe it advanced her PN. I certainly understand why you are leery about making your situation worse. It is a quandary since the targeted therapies for Her2+ are usually paired with taxanes. What does your oncologist say about what might be used?

Lita19901

I was supposed to see my MO tomorrow but because of an unrelated medical thing it's been postponed until 9/18. I did email her but haven't heard back.

I didn't realize that Herceptin was usually paired with taxanes. Rats.

It's not like I'm a concert pianist or famous artist but I do all kinds of needlework all the time with the dolls I make and making them keeps me sane. I don't want to lose this

Lita19901

Hap -Surgery was 7/21 so I'm okay.

Lita19901

Hap - Some study I read said chemo started in 90 days has better outcomes

Lita19901

Hap - maybe yours is just the better way and my treatment is now royally screwed up

PatinMN

HapB, my surgery was well over a month before I started chemo (August 1 - September 20) and there wasn't any consternation among the medical people... I'm not sure why they gave you a 30-day deadline.

SpecialK

There is an optimal window for chemotherapy, but as with all of this treatment, it is not an absolute - and we are all individuals. Here is some study info about this, with the study itself embedded:

http://www.breastcancer.org/research-news/20140220-4

That said, I had BMX with bi-lateral SNB on Nov 1, 2010. My positive SNB was not found in the OR, it was found later in the lab during the more intensive pathology done afterward. I had to go back to surgery to have ALND, but had to wait for my surgeon who was out of the country at a symposium in Japan. My ALND was five weeks after BMX in Dec. 2010, and two weeks later I had emergency surgery to close my skin on the left side because my expander ruptured through an area of necrosis. I went back to the OR twice over the following 4 weeks, ending with removal of the expander in Jan 2011. I had to heal from that surgery before starting chemo mid -Feb of 2011, so all in all, I was 14 weeks from the initial surgery.

Lita19901

Hap - the study results said that Taxol + Herceptin were okay for smaller early stage cancers. Posey's was larger than 3 cm.

Jagger2015

Hi Ladies,

So happy to be here! I am new to the triple positive group ...newly acquired HER2 diagnosis following surgery in June. I have had neoadjuvant ACT chemo ( Jan'thru May)to reduce a 5 cm tumor then breast conserving lumpectomy followed by SNLB and axillary node dissection. I have completed 9 radiation sessions with 7 to go...experiencing SE's now and my breast is super- sensitive. I am newly on Arimidex and Herceptin with headaches and irritability being the "not so fun "SE. I am also stage 3a and oftenlooking for information, stats, positive outcomes regarding this scary new reality. I welcome any recent uplifting advice...thank-you!

coachvicky

Jagger2015,

Sorry you find yourself here and yet happy because this is an info-sharing, supportive group. You will find so much knowledge from the 3+ women!

There are 2 Arimidex forums I follow at BCO. Look around for the one(s) that will help you. Not everyone has side effects from Arimidex. I went thru 2 generics before getting the brand name. I really don't have any side effects now.

There are 2 funny forums that I like. One is "stupid comments" and the other is "you might be a cancer patient if..." .

Best wishes.

Vicky

ElaineTherese

Hi Jagger!

Congrats for getting through chemo and surgery! During radiation, my radiated boob was so sensitive, I just stopped wearing a bra. I also wore my seat belt funny and was stopped by a cop for my unorthodox use of a seat belt. I, too, was diagnosed at Stage IIIA, with a 5 cm+ tumor and one compromised node. I'm on Aromasin, and have added three meds (Celexa, Fosamax, and Ambien) to counter the side effects. Sad, but I WILL make it through ten years!

So far, so good. I have my mammogram coming up soon, and am thinking about an oopherectomy so I don't have to get monthly Zoladex shots.

Welcome to the Triple Positive Board!

Cherry-sw

Hi Jagger2015,

Welcome, sorry you have to join us, but you are in the right place when it comes to support and advice. I am new to this, had my surgery in July and just started chemo. SpecialK has been here since this group started back in 2011, I am know verifying everything with her (sorry, SpecialK, but this is true, as soon as I have doubts or do not understand something I am thinking for myself I have to hurry and ask SpecialK, she knows for sure). I would have been lost without this community. Cherry

Cherry-sw

I am reading all your posts but feel so drained today, very tired, nothing helps, not even chocolate

FleurDeLis49

Hello, all!

Checking in after my post-op visit today! I was able to confirm clear nodes & clean margins so that was a blessing! Still stuck with this drain tube for a while longer, but it beats getting a seroma! Feeling optimistic about my first oncology visit next Thursday! Sending love & light to you all!

SpecialK

hap - that was just the start of surgery for me, I have been a bit of a Murphy's Law person with reconstruction, lol! My first plastic surgeon would say "here comes trouble" when he saw me walk in. All is well now though and that is all that counts.

vicky - congrats on your deportation!

fleur - excellent news on the margins and nodes - drains are a necessary nuisance - take it easy!

cherry - happy to help and I am sure any questions you have can also be addressed by the very knowledgeable folks on this thread as well!

jagger - welcome - sorry you find yourself here, but this is an awesome group! I did experience low grade frequent headaches the longer I was on Herceptin only - they dissipated once I was done.

PoseyGirl

Hi Jagger, I love this thread and the ladies here. I throw out side effects every other week and others are so helpful and supportive...

Congrats, CoachVicky, on getting that port out! Mine eroded out early on and I remember having it taken out...I now get everything the old fashioned way...IV...

I unfortunately think I'm starting to see lymphadema coming on. Crap - thought I'd escape it. I'm starting to measure my arms. Feels like tendinitis in my right arm, but I question that.

I do have a question for our walking Wikipedia, SpecialK...I had a mastectomy and pcr, but had the radiation boosts (5). Other girls I know who had mastectomies and clear margins or pcr did not get boosts. I'm ok that I had them, but I'm wondering why I had to versus others...any idea?

Oh, and I have stiff knees and hips...I feel 80 when I get out of a chair or out of bed or on the stairs...is this thanks to Letrazole? One more Herceptin left...

SpecialK

posey - I would see a certified lymphedema therapist to have your arm checked. I have bi-lat lymphedema, and have been treated by PT over several spans. There are some specific tests that they do, and a certain way they measure, to determine whether what you are experiencing is lymphedema, venous edema, swelling due to allergy or reaction to meds, cording, or axillary web syndrome. All of these can produce similar symptoms. As far as the rads question - I did not have rads, had clear margins at surgery, ALND, and adjuvant chemo. My guess is the chest wall and lymph node involvement, regardless of margins and your good result from neoadjuvent chemo. Herceptin can cause some body aches, but your stiffness is likely the result of letrozole - my experience is that the more you move the better the stiffness is.

Leslie2016

Hey Ladies. Here's a dumb question for you....last chemo was Feb 15. Finished radiation in April. I'm still on herceptin and taking tamoxifen. Although my hair is growing, anyone have any idea why my eyelashes are still so short and if I'm stuck with them like this forever? I mean, I have eyelashes but they are too short even to try mascara. If this is what I'm going to have from here on in, so be it. I just want to know so I can stop willing them to grow. Did your eyelashes eventually get back to their former length? Did it take forever?

ElaineTherese

Leslie,

My eyelashes are still stubby. I don't bother with mascara anymore, though every now and then, I pull out the fake eyelashes.

I have compensated somewhat by emphasizing my eyebrows more and buying some cool eye glasses.

PoseyGirl

Thanks, SpecialK. I don't believe I had chest wall involvement; it's nowhere in my reports and I think I asked at one point? Now I'm freaking out! And the other girls had nodal involvement too...

I have called my surgeon and am looking for a referral to someone at the hospital who diagnoses this as you mentioned - thanks so much!!

SpecialK

posey - I assumed this since you had chest wall in your sig line for rads, so don't freak out! Maybe the size of your tumor bed was the reason, even though you had pCR, you had a pretty big lump - or possibly this is the standard protocol for stage, or Her2+. Can you access the RO's notes, or the referral from your surgeon or MO to the RO? That might help clarify.