TRIPLE POSITIVE GROUP

NattyB

Hi Bird,

I think once treatment is over I will do MRI's and no more mammos for follow-up. I would think though that with HER+ that you will probably do some kind of chemo. In my case, the plan is that if my tumor is unchanged at surgery and I stay Stage 1 it will be Taxol for 3 months and Herceptin for a full year, if I'm Stage 2 it will be TCHP for 5 months and continue the H and P for the full year. After that, Tamoxifen for whatever they determine, 5 or 10 years. I'm pre-menopausal. Good luck at your appointment today - ask a lot of questions... it's your time:) Let us know how it goes

Bird-of-light

Natty, yes chemo, but after surgery. We talked about two options for chemo. I am heading to diner with DH and don't have the BIG pink binder with my notes of the drug names. We discuss the lumpectomy and bilateral because my breast are also dense. The cancer is high up by the breast wall I was lucky to find it outside the dense white tissue. I'd love to keep in touch. I am sorry you and I had to meet this way. I'll post the chemo options soon

lago

Bird-of-light you may want to read what Beesie has posted regarding making the MX vs BMX choice. It's the 6th post on this page: https://community.breastcancer.org/forum/96/topics...

Tresjoli2

bird...I had lots of DCIS, and only 1.5mm of IDC. I did taxol and herceptin (3 more herceptin to go). But I was 40 with two small kids...so I threw the book at it.

Good luck with your decision...

SusanHG123

Eye issue. I am scheduled for cataract surgery the end of May and mid-June. Mine were referred to as "blossoming" from the steroids during chemo. I am actually looking forward to these surgeries. My vision is progressing to the almost blind.

Bird-of-light

Thresjoli & Natty, MO gave me two options. 1. Carbo Taxotere + Herceptin 6 rounds, 3 weeks apart, Herceptin for a year. We didn't discuss radiation yet. OR 2. Advianycin Cytoxan (AC) followed by Taxol + Herceptin. 4 rounds AC, 12 Taxol. He didn't mention the year of Herceptin but I assume he meant to. To me this sounds like toomany drugs. I believe less is more, so please, anyone, help me understand these two choices. He said he suspects I will be stage 1 after surgery.

Sweet Humming Bird of Light

Bird-of-light

Lago, good post. Thank you. Definitely some questions I need to ask myself and the MO. Was hoping the bilateral would get me out of rads. But, the cancer is close to the chest wall, so who knows.

suzieq60

Just checking in to say hello - 7 years out and still going well.

lago

Bird-of-light my tumor was also in the posterior region right above my heart. Tumor was large and breast small so I didn't have the choice, no lumpectomy for me. I was in a gray area for rads. Usually tumors over 5cm do get rads. My rad oncologist gave me a pass. I think she felt the damage to my lungs and heart wasn't worth the reward in my case. I am also very small framed.

ElaineTherese

Bird-of-light,

If your tumor is smaller than one centimeter, you might want to ask for a second opinion re: chemo. Many HER2+ women with small tumors have been recommended a regimen of Taxol + Herceptin and that's it.

If your tumor is larger than one centimeter, MOs may advise TCHP or AC+THP(Perjeta). I did AC + THP, but my tumor was 5 cm + and one node tested positive. Was it a lot of drugs? I guess so. I'm lucky, though; I didn't have many side effects and I worked through chemo.

TCHP and AC+THP each have their pros and cons. TCHP is more likely to cause gastrointestinal side effects like diarrhea. AC can be tough on the heart; if you have pre-existing heart problems, it's probably not the chemo for you. Herceptin can also cause heart problems. Either way, you'll probably get some heart scans so that your MO can monitor your heart to make sure that it's still functioning properly.

Best wishes!

Bird-of-light

I need to ask my MO about radiation. If I can get out of that and mammos forever, it seems reasonable. I am 5" 7" with a b cup now.

Blownaway

Bird - I was initially prescribed 6 rounds of TCH, plus 36 rads, followed by herceptin alone for a full year, then 5 years of Tamoxifen. I had a lumpectomy before this. I was only able to finish 4 rounds of TCH - my body couldn't handle it. Then after 3 more rounds of Herceptin, I went into heart failure. I was treated at MD Anderson, so I assume this was standard protocol.

Zoziana

So, most recent update (and some layperson research notes of interest) is as follows:

1. I am having a PET scan (to recheck the liver spots) on Monday. The head of nuclear med. told the doctor that the size from the CT is borderline as to whether or not they are large enough to be picked up by PET, even if mets, but he felt it worthwhile to do. I am comfortable with this result. I hope the liver spots are nothing, but I am glad we are checking before the final chemo plan is decided. Right now, it is still Taxol and Herceptin, once a week for 12 weeks, then Herceptin plus AI for 9 months, then continue with AI.

2. I learned my tumor is actually 1.9 cm, which puts me just below the "cutoff" for use of Perjeta with Herceptin, per my medical groups' general practice. I haven't learned yet from Genentech more about Perjeta, efficacy etc. but hope to early this week.

3. I am getting a second opinion re treatment plan from a breast cancer oncologist at Stanford who works closely with a cancer group there that is involved in cancer detection via blood and otherwise and is well aware of the "floating cancer cell" issues, even with small tumors, etc. I am able to get this done before my treatment is set to start April 29--I got it extended out a few days.

4. My doctors and the Stanford folks, with whom I've already spoken with informally, sent my record to, etc, have indicated that for those in my situation--no chemo or Herception pre-surgery, one should start chemo and treatment no more than 60 days post-surgery...so that is why we start this week-it's the earliest I can start post-BMX (42 days post-surgery.)

5. My MO actually looked at the study of my FGFR4 mutation (that allows extra STAT3 growth factor into cancer cells through a heretofore unknown "secret" back door), of 372 HER+ patients, and found that only 5 of them fit my profile: node negative, no neo-adjuvant therapy, and Triple Positive. Though the research seemed very interesting and clearly will result in drugs that will help many cancer patients some day, it's extremely early days and will be quite a while before this translates into drugs and clinical application. Of note is that curcimin, (from the spice turmeric) effectively does block STAT3, but it is hard to absorb through ingestion. I do take a high quality and large dose supplement of it already, however, and will check to see if that can continue through chemo, but will certainly go back to that once chemo is done. Some kinase inhibitor drugs also work in similar ways, such as Tykerb (lapatinib), but are used now , I believe, only for metastatic bc.

6. Super interesting research released just last month shows that in a controlled study,Tykerb plus Herceptin given for 11 days in pre-surgery neo-adjuvant context completely eliminated patients' tumors for both node positive and negative patients. For anyone interested: https://www.sciencedaily.com/releases/2016/03/160310125513.htm .

7. Haven't actually made contact with Genentech folks yet, but am speaking to someone today about how to approach this or whether I should do so at this time or wait until I hear what the second opinion MO says. I am able to contact the Genentech folks at any time, so I don't feel a rush on that. I also want to wait until I have the results of the PET scan.

Well, that's the update for now. My college age daughter surprised me with a visit home for the weekend, which has been fabulous. She helped me pick out some good hats and scarves and a tentative wig (will fit after I"m a hairless wonder, but it is on hold for me (we have a fantastic "all breast cancer" boutique nearby, so it is a very painless process.) Hope everyone is has a good weekend.

Bird-of-light

Blownaway -Wow. Sounds like treatment kicked your butt. I'm sorry you had to go through such a tough bought for treatment. How are you being treated now? Did you lose your hair or cold cap it? Did you consider BMX? I know, tons of questions. I appreciate your feedback.

B of Light

Bird-of-light

Elaine - I had noticed the taxol+ Herceptin combo on other posts and wondered why I was not offered that option. The MO is patient and nice. I think I could ask about that. He doesn't know exact size. Ultrasound was 7mm, biopsy core was 9mm, MRI showed larger. He estimated 1 cm. He also ordered a PET scan for next week. So far, we are not suspicious of node involvement based on ultrasound and MRI. It is awesome that you had little SE.

Mommato3

Kate, I spoke to my MO about alcohol consumption. She said there were conflicting studies on whether it caused an increase in risk and by how much if it did. Her recommendation was no more than 3 per day and 7 per week. I've never been a big drinker. I probably drink a little more now. It helps me relax which lowers my stress levels. That's a good thing, right!?!

ang7894

Suzieq60--- Hello and congrats on 7 years

Tresjoli2

For those of you who are on lupron...do you have ovarian pain after the shot? I have been on lupron since July of last year. Normally I just get a cluster of migraines for a week after the injection. But this time my ovaries were/are really hurting me. Both sides. That hadn't happened before. I see MO on wednesday, but was wondering if anyone else experienced this?

Jerseygirl927

ovaries act up on me occassionally, not on lupron! But the still are there and I sometimes feel they act up. Age 65. Had hysterectomy, but still have ovaries, both have minor cysts on them

Anonymous

bird of light-my tumor was just under 2 cm, multi focal. I interviewed 3 oncologists and two of the 3 had the same protocol and one of those was the number 2 under George Sledge, at IU Med Center at the time. So I went with the two out of 3 treatment.

I had taxol weekly for 12 weeks, with herceptin and then herceptin for a year. The weekly taxol was very tolerable. I didn't have much nausea, not too much joint pain, but I was taking a couple supplements to help with that. I had also sent myself into a panic disorder so was taking a low dose of Cymbalta. Along with its anti anxiety benefits, it really helps joint pain. Once I realized that I could wrap my head around everything, I weaned myself off.

Then started Arimidex. Took two months and had really bad joint pain. Started back up again, lol and helped a ton.

I would ask your docs about taxol. It is a very manageable chemo.

Special K-are you considering stopping your esd at 5 years? I will be at five years (2.75 on taxol, the rest arimidex) in July. I see the one on Tuesday and was going to have that conversation with him.

I'm torn...I would love to quit...but also awfully scared to go with nothing. He seems to favor the ten year treatment, but I am wondering just how much difference there is in recurrence percentages

SpecialK

fluff - my MO ordered a BCI (Breast Cancer Index) test to help determine what to do at the five year point, which is in June. This test has a two-pronged result - it uses the original tumor and calculates a score for recurrence risk, and one for drug benefit. According to the test data, less than 6% of patients derive benefit from continuing endocrine therapy beyond 5 years. I fall into the unfortunate result category of high recurrence risk and low drug benefit. I have an appt on Thurs to see my MO and we will discuss, but not sure what the plan will be. Low benefit is not the same as no benefit so he may suggest I stay on. I have mixed feelings, as much as I would like to come off (just developed a new trigger on left thumb and right ankle) I worry about being on nothing even though both times I switched I took a two week drug holiday and noticed I felt better off both drugs. I have had both cholesterol and bone impact, bad enough for Prolia, so there is the question of cost/benefit analysis. Since this test was done on my original tumor I am questioning whether Femara/Arimidex ever worked, have I just been lucky, or what?

ArleneA

SpecialK: My onco wants to switch me from Arimidex to Tamoxifen. I see other oncologist just continue the Arimidex for 10 years.

My biopsy was done in NV so not sure she'll have access to it for the BCI. Really thinking of stopping at the 5 year point.

I so understand your concern about nothing!

Zoziana

FluffQueen0: what supplements did you take that helped with Taxol?

Slapp

Hi All, new to this group-Triple Pos. Recently diagnosed IDC, and three weeks post-op from surgery (lumpectomy). Initially was grade 2 cancer, post-op now being told grade 3, node neg-Stage 1. I am scheduled with Onco/Rad for final recommended treatment plan tomorrow and am nervous. Surgeon says- Chemo will be recommended for 1 year, along with other treatments, one possibly for 5 years. I am having a really hard time wrapping my head around more of a preventative chemo strategy for such an early stage, node neg. cancer. If any of you ladies have anything you can share with me in this type of scenario, I would appreciate it! I realize that any treatment is a very personal decision, and one only that you can make.

SpecialK

Arlene - as long as your tumor is stored I think they can access it. BCI has a requisition/order type form and whoever possesses the sample sends it along. Mine is in the local area (I think, lol!) but was stored in the pathology department of the hospital, which is independent of my MOs practice. I asked about changing from AI drugs to Tamoxifen - offered to do it - before the BCI test. My MO scrunched up his nose about it, don't think he favors it - in some measure due to the metabolizing issues, and also because I believe there is some thought about the lack of effectiveness for Her2+ patients.

slapp - the key for most of us is the targeted therapies, and they are given with chemo for the most part. For smaller, node negative, tumors many have Taxol and Herceptin for the Her2+ aspect - this is proving to be very effective, I can link some studies if you would like. Herceptin is not chemo, and most don't have chemo-like side effects from it as they continue it for the balance of the year. The five-year med is to control estrogen - either Tamoxifen is you are premenopausal, usually one of the three AI drugs if you are post-meno, or wish to suppress ovaries either surgically or with another method. There are a number of us who are far enough out to have perspective on whether or not doing all of this was a good idea, and if we would do it again - not to speak for all, but I don't see regrets on this thread much. The proposed treatment for you is standard of care, Her2+ cancer, even if small, is nothing to be messed with, IMHO. I am sure others on this thread will chime in with their perspective, but we are here to support you with whatever choices you make. There is a lot to take in and it can be a bit overwhelming - if you have questions - please ask them!

KarenInCanada

hi Slapp

I am a stage 1 grade 3 node negative HER+. I initially thought I would only have radiation as my tumour was under 2 cm. It was not until after my biopsy was done that I found out I would have to have chemo as well due to the HER+. I was shocked. I knew very little though about BC. They were nice enough to wait until I returned from my vacation that had been booked months before to tell me. I will have 6 chemo total, 3 of one kind, 3 of another and also get Hercepton infusions for a year. He has not mentioned pills at all for after but I won't be surprised. I also had clear margins.

So far I have had 4 of my chemo treatments. I will start radiation after this. I believe I will have 16 to 20 sessions. After that I will continue on with my Hercepton til next April. It all moves so fast and is shocking but I am 53 and would like to have many many years left so this is all worth it!

Tresjoli2

Slapp, I have stage 1 grade 3 IDC. I had only 1.5mm of IDC. Her2+. I did chemo, because I wanted the protection of herceptin, and chemo came with it. I'm 41 with two small kids, so I threw the book at it. As Specialk says, Her2 is nothing to mess with. I agree, IMHO.

We are here to support you every step of the way!

Blownaway

Bird - All I have now is Tamoxifen and a number of drugs to combat the Tamo side effects. My MO would not allow me to cold cap or chew ice or ice down my finger tips. He said "You are not to protect any part of your body from the chemo drugs." Soooo, of course I lost my hair, some of my fingernails, had mouth sores, hand & foot syndrome, bloody nose.....all the usual side effects. It was my labs that convinced the doctors to stop my chemo treatment. Then after 3 more treatments of just Herceptin, my LVEF was down to 35, which is considered heart failure. Guess I'm just a wimp.

Zoziana

Hi Slapp-

We are in similar situations and time frames. I understand how you feel. It's crazier than cancer usually is. I literally had no time between "diagnosis" of HER2 positive status and the communication that I would be having chemo; it was the same phone conversation. ( personally was grateful for that, as I didn't have to wonder. And, from that call to my start date of chemo is 10 days...Not a lot of time at all to organize personal life, figure out work schedules or time off if you need it and buy or borrow a hat or two, and a wig, for hair loss. I've done it, though, and so can you! We are here to help you any way we can!

I would agree with SpecialK--any cancer that is HER2 positive is a dangerous one. I know we all make our choices, but do make sure you are informed, and if you doubt or just aren't sure about your oncologist's treatment plan, ask to get a second opinion. That's what I am doing--the appt, is tomorrow. I want to be entirely comfortable with whatever I do, because we all know that a positive attitude in the face of challenges such as ours is a very helpful thing indeed. And, as I had lingering doubts about whether I was getting enough chemo, and whether I should get additional targeted therapy or not, I decided getting a second opinion was a good choice for me.

Just booking the second opinion appt. helped me psychologically, and getting it will help me further. Do what you need to do to feel comfortable. For that reasons, I also insisted on a PET scan to further examine some liver abnormalities found on a CT, and I am happy to report that they did not read as cancer, and everywhere else was clear too! That PET finding also helps me feel more comfortable with my treatment plan. I feel all of this is key to my having a positive attitude when I start Friday!

Bird-of-light

Blownaway, or maybe that is all you will need. Thanks for sharing.

Bird of Ligh