TRIPLE POSITIVE GROUP

moodyblues

Birdoflight.  I am surprised that they gave you an estrogen cream because of you being ER+

DizzyGirl

I wanted to jump in here and introduce myself. I was diagnosed with Triple Positive IDC (ER 90% and PR 95%) in Nov 2016. I had my first Mammogram and ultrasound in May 2016.They thought there might be something there but didn't mention doing a biopsy but asked me to come back in 6 months.By Nov I was stage 3a with a 12cm tumor. I was 41. I started TCHP chemo 12/15/16 (neo-adjunct).I worked full-time through the first half of my chemo but ended up in the hospital after round 4 with low counts.I then took 7 weeks off to finish all 6 rounds. I had a double mastectomy on May 18 2017 and was told I had a complete pathological response and no cancer cells were found in the breast or in the 3 lymph nodes they took out. I had TEs placed at that time.I completed 28 sessions of radiation then started Tamoxifen. .I recently had my exchange surgery on 9/21/17. I am still on Herceptin every three weeks until Jan 2018.

It has been a rough year and I didn't really do much research on my ER, PR and HER2 positive cancer.I remember one of the Drs explaining that it used to be a very poor prognosis type of cancer but with the new Herceptin and Perjeta they get a very good response. I am discouraged from what I have been reading on this thread …it doesn't sound like having a complete metabolic response and completing chemo, BMX and radiation really brings the chance of reoccurrence down to the percentages I was told (5%).I know I completed all the treatment they asked me to do and I take comfort in that I guess.

I got involved with a local support group that has been wonderful.This site has also been invaluable. I look forward to learning more now that I have more time and energy.

DizzyGirl

moodyblues

Meowmmy, I had two postponements of my surgery as well.  First time the reconstructive surgeon had to reschedule and then lo and behold, the next week I got the flu.  I was frustrated and was happy (can you be happy to have your breast cut off??) when I was finally able to finally get it done.  Hopefully this time you will get an all clear to get it done!

Bird-of-light

My onco feels that quality of life is important. I was surprised he gave it to me too because he’s real conservative in his treatment. I did five rounds of laser treatment, but they only helped a little.

ElaineTherese

DizzyGirl,

I was also diagnosed at Stage IIIA. I'm 2.5 years, post final chemo, and I just met with my Oncologist last Wednesday. She says that having made it to 2.5 years without a recurrence is good, and that my recurrence chances are on a downward slope from here-on out. It's interesting that the two HER2+ women who have recurred from my July 2014 chemo board did so within the first 18 months out.

That said, I don't feel "safe" from a recurrence; I'm just too busy with work and my kids to think too much about it. ((Hugs))

DizzyGirl

I was told there was no tumor marker for breast cancer but recently found out that there is CA27.29. I see my oncologist tomorrow and plan to ask for this test. I don't think she will agree to do it as she has no faith in this tumor marker test. Does anyone have experience with this test? Thoughts?

DizzyGirl

Meowmmy65

moodyblues: it's amazing how these things change our perspectives, isn't it? Thanks for sharing your experience. Helps to know what others have gone through.

I remember when I was a teen, and my dad was battling bone cancer. He chose to have a hemi-pelvectomy... Amputation of half his pelvis and one leg to keep fighting. He wanted to live at all costs. His prognosis was never good. In contrast, I am very lucky. So I'll take each set back and triumph as it comes, smile, and move forward.

Iwbt

today I'm at the cancer center for my last (6/6) TCHP infusion. Then its hercepton only for 8 months. Yippy.

I also meet with the breast surgeon this afternoon to schedule my mastectomy. My medical oncologist is concerned that because my platelets (80) AND hemoglobin (7.5) are low surgery could be delayed.

Has anyone had experience with this? I'm not opting for reconstruction at this point because I will have radiation after the mastectomy and I want to reduce the risk of complications.

Thank you all for your insight, experience, and advice. It is appreciated.

ElaineTherese

DizzyGirl,

My oncologist doesn't do CA27.29 markers. I've heard that they are accurate for some BC patients and not others. Many BC patients on the Stage IV sites talk about their CA27.29 markers, and insist on tests and scans when their markers go up. For me, I'm good. I just had a clean mammo and my blood work has been fine. I have no interesting symptoms, so my MO thinks I'm still NED.

Let us know what your oncologist says; everyone's MO is different.

Cherry-sw

Welcome Mandeola, KemCee, Meowmmy65, DizzyGirl, sorry you find yourselves here but this board helped me enormously since my diagnosis. The ladies here are always there to give you very detailed answers and comfort when you feel low.

Cherry-sw

Hi, I have a question, do you know how much Taxol they administer when one gets it on weekly basis in ml per body weight? I was trying to find myself but I only find in mg but when I get mine it is in ml.

Kattis, how many Taxol infusions did you received?

I am seeing my oncologist tomorrow and I want to talk about my upper back pain that never goes away but changes location all the time. My PT is saying that the left part of my thoracic spine is locked and this is causing muscle ties, so I am doing exercises. Gosh, I think I have already bubbled about it before. BS, GP, two PT and all the oncologists I talked to keep telling me it is muscular and I used to have incidents of thoracic back pain before but it never lasted that long. In August they have ordered a usual x-ray and told me it looked fine. The oncologist I am going to meet tomorrow offered a bone scan so I can have a peace of mind but I got so afraid that we decided to wait and see whether the physical therapy would do any good. I try everything and sometimes it goes away and then it is back again, the thoracic spine does not bend in so to speak but my GP says all vertebrae are in their places while PT says they are locked. My oncologist told me that she is not worried b because my bloodwork looks fine. What could she mean there?

Anyone who had a similar problem and how did you get rid of it?

As always am grateful in advance for all your answers.

Cherry

ElaineTherese

HapB,

Isn't a mammo a scan? I just noted that I had a clean mammo. I've been getting them every six months since surgery. I have also had one PET scan and one MRI since radiation. So, even though my MO doesn't do tumor markers, I consider myself NED and "monitored."

PoseyGirl

ElaineThere, were those two people on your chemo board Her2, hormone positive? If so, then recurrence stats can be a bit different. I'm curious...

Oh, and re: recurrence, was that 18 months from the finish of Herceptin or from surgery or chemo

Iwbt

This morning my medical oncologist talked briefly to me about taking Neratinib (Nerlynx) for a year once I'm done with herceptin. He also said that it only improves survival rates by about 2% in late stage cancers. And that the benefit must be weighed against the sever diarrhea side effect. My doctor said that it was initially approved for early stage her2+, and recently approved for late stage cancer

Has anyone had experience with this drug? I have a few months before I have to decide. Severe diarrhea for a 2% increase in survial?

Once again thank you in advance for your experiences and advice.

ElaineTherese

Poseygirl,

Both of my chemo buddies who recurred were ER-PR-. One was diagnosed in May 2016 after finishing Herceptin in July 2015. The other was diagnosed in February 2017 after finishing Herceptin in June 2015.

Iwbt

Elaine, did your friends have a mastectomy or a lumpectomy? Where their margins clean? And was there lymph ode involvement?

I guess what I'm wondering is what is the recurrence rate for a pathological complete response vs a non pathological complete response vs the overall recurrence rate for her2+ breast cancer

Thanks

Cherry-sw

lwbt, the positive thing with nerlynx it seems to be able to break the brain blood barrier, but it causes severe diarrhea. I am in Europe and my clinic did a smaller local trial several years ago, I found an article that did not presented the outcomes but introduced a lady who participated and she has mentioned the side effects. I have mentioned it to my oncologist and she said that I will not get it, my clinic is not using it it seems.

Cherry

ElaineTherese

One of my chemo friends originally had a lumpectomy and then had a mastecomy; the other had a double mastectomy.

I should note that both were Stage III from the get-go, so they would have had a higher chance of recurrence than those of you at Stages I and II.

Cherry-sw

So we should start counting from the end of Herceptin? Or from the surgery/end of chemo? I am confused about what is valid for TPs

Iwbt

cherry. Elaine, hapb, thank you for the information on nerlynx. My oncologist said it was originally approved for early stage cancer, but recently approved for late stage.

I was diagnosed at stage IIIb. Depending on how I responded to the TCHP, i could be down graded after the mastectomy.

The breast surgeon is pretty confident that only one lymph node is involved. This is based on my PET scan and ultra sound. That is a relief because I thought all or most would be involved. I guess I thought that because I was IIIB. So I thinkade me IIIB was localized skin mets.

Once again thank you for the information and adcice.

SpecialK

Reading back over the last several pages - had some responses.

saje - I receive my Prolia in my oncologist's office, but have to confess that I have never looked at the cartridge. Mine is very similar to the Neulasta cartridge and it is kept refrigerated. Sorry I can't help with any reference to the color. Hope you get it sorted.

moody - the trial I participated was essentially an immunotherapy trial - I don't think there is much of this ready for prime time treatment. My trial was for a vaccine and the efficacy was measured in t-cell response. This was a Her2 specific recurrence prevention vaccine.

mandeola - sounds like cording - can you get a referral to a lymphedema certified physical therapist? They tend to know how to deal with cords without causing more risk.

meowmmy - cellulitis is common if you have a seroma either from lumpectomy or mastectomy, and also if you have lymphedema. Having it in your finger may be indicative of hand swelling related to lymphedema - had you experienced any of that?

dizzy - I have had tumor markers since prior to initiating treatment - my oncologist does markers multiple times per year and also periodic scans - both over time, and for symptoms. I have had pre-treatment MRI and PET, an MRI a couple of years after chemo for hip and back pain that revealed oldness and an injury, but no cancer. I also had a DEXA scan to check for avascular necrosis from Prolia, but it was normal. I have had three post-treatment PET scans - one after chemo, one a year later, and one after my results from the Breast Cancer Index test revealed high risk of recurrence/low benefit from AI drugs. That PET was abnormal bi-laterally and I could not have an MRI because I had one implant and one tissue expander. I was already scheduled for exchange surgery for the expander, downsize of implant on the other side - so my PS did some biopsies of the suspicious areas, and removed a 3cm nodule that was sitting right where my tumor had been. It turned out to be a suture granuloma and all biopsies were negative for cancer, consisting of inflammatory process only. I had a subsequent MRI after healing from that surgery. Tumor markers are reliable for some people, and not for others, and can be influenced by inflammation. Not all oncologists use markers for this reason. If you are someone for who they are accurate, they are a useful tool.

iwbt - yay for the last chemo! It is "normal" for your blood counts to be low as they have been as affected by chemo as your hair. Platelets are necessary for clotting, unless you are in the normal range they won't operate. That said, platelets are the shortest lived blood cell - they regenerate every five days, so your counts could rebound pretty rapidly. As far as hemoglobin, it is dependent on your increase in RBC, so I would start consuming as much protein as you can muster - aim for 100g a day. Good sources are the usual suspects - beef/pork/chicken/fish/eggs/dairy, Greek yogurt, fortified cereals, etc. On Nerlynx (neratinib) it was just recently approved for early stagers in July of this year, there is not a great deal of data gathered yet on use for early stagers beyond the trial data.

http://www.breastcancer.org/research-news/nerlynx-approved-for-early-stage-her2-pos-bc

cherry - chemo is calculated by BSA - body surface area, that is why you are weighed each time you go for an infusion. Not sure how to convert mg to ml as one is a weight and the other is a volume. Your oncologist should be able to provide the dosing for you. Also, keep in mind that Taxanes cause bone pain, which dissipates after the course of chemo is done.

Just wanted to point out that comparing side effects from aromatase inhibitor drugs and Tamoxifen is a bit apples and oranges, even though the SE may be similar. Aromatase inhibitors control estrogen by suppressing the enzymatic (aromatase) mechanism that converts androgens to estrogen. AI drugs are given to post-menopausal women in whom it is assumed that the ovaries are not producing estrogen, and to pre-menopausal women who are suppressing ovarian function with other drugs. Tamoxifen is different in that it allows ovary-produced estrogen to circulate, but blocks the receptor on the breast cell. Both pre-menopausal women and post-menopausal women can take Tamoxifen, but AI drugs have a superior performance edge. Generally Tamoxifen is only used for post-meno women who have a co-morbidity that prevents use of AI drugs, or for whom the side effects of AIs are intolerable.

moodyblues

Birdoflight, that makes total sense about quality of life.  What is life if there's no quality to it?  I read a few articles on the Mona Lisa Touch and there were mixed reviews, I had never heard of it before.  Has the cream helped immensely?

moodyblues

Dizzygirl.  Welcome, so sorry that you find yourself in our ranks.  We have an awesome group of ladies here and I have found so much information to help me through this detour that BC has brought to my life.  The encouragement and knowing that I was not alone in this helped me get through chemo.  I have been given ideas on combatting SE's, comforted when fear of recurrence entered in and also in finding out if my post mastectomy pains were normal.  I have laughed about how we describe our 'new' breasts or lack thereof and also about how feisty we have become when others (the public) have made comments that they obviously didn't think about before it left their lips.  The links have been a tremendous help to me.  I think that you will find our group a place where you can come to help you through this crazy time.

Melanie

Cherry-sw

Hi all, I had a meeting with my oncologist today to discuss my treatment. Earlier I expressed my concern to her that even though my tumor is 1,5 cm and I have no nodes involvement the high Ki67 50% makes it a borderline for the more aggressive treatment than weekly Taxol. She promised to take my case back to the multi-disciplinary conference and today she said that they are giving me a choice to either proceed with 12 x Taxol plus Herceptin or to have three last Taxol replaced with AC (epirubicin) DD every three weeks which means that we have to do a break from Herceptin and return to it first after AC. I know that weekly Taxol is a rather easy regimen, I am tolerating it well, AC is absolutely another thing and I am a bit scared. I have a week until the next Tuesday and I am so torn already. For those who have done both, how was AC compared to Taxol? What would you do in my case? I was hoping for another targeted therapy, maybe Perjeta, but she said that it was out of picture, that they can only offer AC, and I think I will go with it because I want to be able to tell myself that I have done everything I could and my oncologist thinks the same but I can stick to Taxol only because this is a good treatment as well according to her.

KimCee

SpecialK...wow, I am a nurse and you you educate me constantly. Thank you for all of your extremely informative posts. I see you are in Tampa, were you treated at Moffitt

SpecialK

cherry - in my opinion, it is the Her2+ aspect that drives your Ki67%. Prior to the addition of Herceptin as treatment for us, when Her2+ patients got chemo only which was usually without the taxane, the survival rate was not as good. Adding AC to the mix may have no additional effect on survivorship but add a whole lot of side effects, particularly nausea/vomiting and potential cardiac issues. AC, as a chemo regimen, does not necessarily address the Her2+ aspect, and you have to discontinue the Herceptin because you can't combine the two cardio-toxic drugs together. A cardiac side effect from Adriamycin is more likely to be permanent, not temporary as most are from Herceptin. You are likely to get more effective treatment of the hormonal aspect of your cancer with whatever anti-hormonal you take, but not necessarily chemo. Consider it carefully - more is not always better, and remember that your tumor has been removed - any treatment you are doing now is insurance, not treating a known cancer since it is adjuvant.

kim - I currently receive lymphedema treatment at Moffitt, and I was treated there in 2008 by the sarcoma department head for a nerve sheath tumor in my right calf. I chose to be treated privately for breast cancer, but all of my doctors have been at Moffitt at various points. I feel I have the best of both worlds, physicians with previous experience at an NCI center, but with the flexability to order tests and treatments without being hamstrung by as many rules. If I had a rare or unusual cancer I might seek treatment there, but I have been very happy with my treatment so far. Are you familiar with Moffitt?

Cherry-sw

SpecialK, I do agry with you on the discontinuing Herceptin, but the Taxol doses I get right now are low dense and I got so concerned when I red these articles someone posted here not so long time ago about low doses of Taxol, that although being less toxic they were facilitating for the metastases in the other parts of the body due to the inflammation they caused. In my situation I feel that I want to do everything I can to be able to tell myself that did what I could. According to the oncologist it is ok to resume Herceptin after two months. I just feel that low doses of Taxol is one too weak chemo regimen for the tumor I had that was able to siphon the cells prior removing at a horrendous speed and I feel that combining two different chemos will optimize my chances. This is on one side of the scale, on the other one are all the arguments you listed above. As always, you are so well-spoken, thank you. I need to make a pro-and-con list this upcoming week.

Anyone who has done both, how wereyour ACs compared to Taxol?

I am such a mess, I am a Libra, I cannot be given choices, I have such difficulties to choose

Cherry

KimCee

Special K... I am a home care nurse and have had patients who were treated at Moffitt.

SpecialK

cherry - I am a fellow Libra - my birthday was yesterday - I understand, lol! It is important not to have doubts, and I think if you have handled Taxol fairly well, the AC will be more intense but potentially easier than if you had done the AC first, then the Taxol. My observation is that AC, then T can be pretty debilitating. Make absolutely sure you get good anti-nausea control, and can go to your center for extra fluids and steroids, if needed.

kim - thank you for doing what you do - my mother-in-law and two sisters-in-law are nurses, one still working, the other had been a home care nurse when her kids were young. My mom had nursing care at home for two years, and I will forever be appreciative of the quality of care she received.

Lita19901

Hap, if you're still at the hospital, pull up Letrezole side effects on your phone and ask her to read the list!'