TRIPLE POSITIVE GROUP

laughinggull did Nerlynx.

I'm trying to convince my MO to let me try it after my Vaccine Trial is up. He doesn't think it's necessary because I did Kadcyla and, there's no trial showing Nerlynx rates after Kadcyla. But I want to start in March, we'll see.

Moody,

Why did you switch? Maybe it's just taking a while for the body to adjust. I have to start one of the AI's after 8 years on tamox but don't know which one. I want the easiest one if there is such a thing. Hard to live without sleep though so hope that changes for you. Good luck!

Taco,

Thanks. I am 56. Thanks for the suggestions. It's been interesting being off of Tamoxifen and seeing what symptoms were due to that and what are due to me. For the most part I tolerated tamox well, had no real bad side effects, but I felt towards the end my body was getting tired of it- I was getting signs of neuropathy (prickling in feet) and I started to worry. But I really don't want hair loss or bone loss form the AI. I will take my biotin and keep exercising and see what else others do to ward off side effects. Time to dust off my Wonder Woman bracelets!

momwriter,

I have been on Aromasin + Zoladex for 6.5 years. I will be doing 7 years on this regimen. At first, I had hot flashes and was moody, but my oncologist put me on Celexa, which solved that. Then, I developed full-blown osteoporosis, but my MO put me on Prolia, and my bone density improved to osteopenia. Recently, my feet have been hurting but after seeing a foot doctor, it turns out that I have good old-fashioned arthritis and it has nothing to to with Aromasin + Zoladex.

My hair has been fine (was always limp and stringy), but I have gained weight on this regimen. It's also very difficult to lose these extra pounds. Otherwise, Aromasin + Zoladex has been tolerable.

My nurse brought up subcutaneous Herceptin injections when I finish with Taxol as a way to save time. Has anyone done this? I've heard the injections hurt and I told her that, but she said it's just a "little bit stingy for 5 minutes" and that she had noticed I was a "tough cookie" so she thought I should consider the idea. Apparently not all insurance covers it, though mine has been pretty good. This idea didn't come from my oncologist AFAIK so I don't know what she will say, but it's sending me off researching.

I'm guessing it's Hylecta she's talking about? Phesgo wouldn't make sense because I'm not getting Perjeta. Painful I can deal with but it's evidence of the same efficacy as IV Herceptin that I'm after. I don't want something new if there's no proof it works as well. Has anyone done this?

Thanks, Olma61--that's the information I was looking for!

My liver numbers were good today, even lower than last week, but I'm starting to be concerned about my ANC, which tanked from 3.1 last week to 1.5 this week. Worried they will make me skip a week if it continues. Do they ever do Neulasta or Neupogen shots on weekly Taxol?

my neutrophils went down to 1.45 after my influenza vaccine and popped right back up. I have had a few plummets of my lymphocytes etc and everything rebounds.

I read some journal articles on weekly taxol side effects and significant neutropenia is a rarer side effect.

My baseline was 2.1 but that was 3 days post Moderna booster which I think messed with things. After the first dose it was 3.1, but yeah, my concern is it already dropping to 1.5 after just 2 doses of Taxol. Glad to hear some of you had experience with it stabilizing! Maybe that will happen for me, too; seeing it drop so much after only 2 infusions is a bit discouraging and unexpected, though. I will definitely push for Neupogen shots over delaying doses if possible, though, if it doesn't rebound; after my egg freezing experience I feel confident in my ability to manage self-injections of pretty much anything.

Hi!

I felt the same way, seven years ago. But, here I am! Triple positive breast cancer is highly treatable. It is not a death sentence. It is, however, a marathon in terms of treatments.

My advice to you is to take it one scan and one treatment at a time. Just get through what you need to get through for the day.

Even now, I get these annoying Zoladex shots once a month. I've been getting them for six years. My oncologist says I can stop after seven years. It's getting so close, I'm almost there!

Of course, it's OK that you contributed here! Welcome! And ((Hugs))

Thank you so much for responding! I’m glad that I reached out because I am so confused with everything.

I know this is just wishful thinking or crazy thinking, but did any of you find certain foods help? I have not been able to eat since Wednesday, I’m afraid of feeding my cancer. I know irrational, but that’s how I feel. I know sugar is bad, but is sugar from fruits bad? I’m reading so many different things, but I know that I need to eat eventually.

I wish their was a magic food or activity to do or avoid, but there isn’t. Excess sugar is not good for health. Excess most anything is bad. Fruit has lots of healthy fibre, antioxidants, vitamins etc. If you want fruit, eat fruit. If you want chocolate, eat some chocolate (just don’t eat only chocolate!). I asked to speak to dietitian right when I was diagnosed and they said just eat to tolerate. I asked about protein or deficits etc. They just said eat what I can. I normally intermittently fast and asked if that’s ok. They said if I tolerate it, go ahead. There is no magic one size fits all nutritional advice (from what I gather).

The one thing my medical and radiation oncology suggested is exercise. If you can, get a bit of exercise. It can help with the anxiety, but it’s also a evidence based action you can do that has positive impacts of cancer before, during, and after. It’s not much but veryday since I’ve been diagnosed I’ve walked. I’m not hugely athletic but I bought a treadmill and walk a min of 30 min a day every single day. On days I have chemotherapy I walk 30 min before I go. It’s one thing I can do for myself, my mental and physical health.

Phelps128 - almost exactly 5 years ago, I stood in your shoes although I didn't know I was TP until after my lumpectomy. Right now really is the hardest. Your treatment plan, including pre or post surgery chemo will depend on your staging. That will also influence the type of chemo you will get. So... try to breathe, as someone said, leave Mr. Google alone, and take it one step at a time. Keep asking questions both here and from your medical team. It's certainly OK to ask for a second opinion. I went to a group that was highly respected by primary who had treated me for years and didn't get one but if you are uncomfortable or don't get your questions answered, by all means, talk to a second physician. Also, try to take someone with you to your medical appointments. It's OK for you or your helper to bring or take notes.

I'm glad you found Breastcancer.org. This is a safe place for your joys and your sorrows. As you get a treatment plan, there will be other threads you might visit. We can help you find them too. As you get your diagnosis, post that on your profile and make each entry "public."

Eat what tastes good to you but try to eat and stay hydrated. And a walk is always a good idea. Don't look back! "Could have, should have, would have" won't make a difference today. As you move forward, you can consider new health habits but don't beat yourself up. Just take care yourself and your son for today.

Phelps: Neoadjuvant chemo (chemo before surgery) is recommended for those of us who are triple positive and have tumors above 2 cm (some say 1 cm) .

As far as what to eat: I am a near life-long vegetarian and teetotaler, and have always exercised and meditated. My favorite foods are all on the "foods to eat to prevent cancer" list. And I still got breast cancer. During chemo pretty much all I could eat during the worst of it was Coconut Bliss fudgecicles. Eat what you can to get through this. Cancer cells are metabolically very active (why they light up on PET scans), so they need a lot of fuel, but starving yourself won't fight them -- they will grab what they can at the expense of your healthy cells. So yes, added sugars in excess aren't healthy, but they don't "feed" cancer particularly.

Exercise helps in so many ways. Again, during the worst of my chemo (I had more side effects than most, was sure I would be one of the ones who was able to never miss a day of work but I am a lightweight when it comes to ANY medication, so I should have known better) my watch would remind me to get up every hour and I did laps around the kitchen. But I also made myself go for walks in the woods daily. And I joined a cancer-survivor rowing group after chemo, and did what I could, then started strength training with a lymphedema-prevention weight training group. Do push yourself a little bit to walk every day, but don't beat yourself up when you need rest.

Do you mind saying where you live? There are groups on here for many parts of the world, and it may help you to connect with others local to you. The Nurse Navigator or Social Worker at your cancer center may also be able to connect you with others who are triple positive and further along than you are.

Take one day at a time, as difficult as it is. You can manage even the worst days if you just focus on getting through one day. And the unknowing at the beginning is the hardest!

Thank you! I had my son 3 years ago on Oct 29th and had complications from the c-section. I had hip issues from early on and it took me over two years to get over it with physical therapy. Life is so ironic. I was just starting feel really good again.

Thank you for all of this information. It is very helpful. I live in Allentown, PA. I believe that I will be treated at Weill Cornell in NYC. Is there a forum that discusses experiences and reviews of treatment at hospitals? It's hard for me to find many reviews on line.

ElaineThere- sorry for the late reply, but so happy that you are almost at your 7 years! I hope it goes fast and you are done with the zoladex!!

phelps - Weill Cornell has a good reputation and is an NCI center - I would think you are in good hands. I used the search function on the left of the screen and typed in Weill Cornell nyc and got this page of hits from within this site, including your post from above. There are some specific docs and procedures mentioned. If the members who made those posts are still active you can always send them a private message and ask specifics.

https://community.breastcancer.org/posts/search?utf8=%E2%9C%93&search_builder%5Bkeyword%5D=weill+cornell+nyc&search_builder%5Bauthor%5D=&search_builder%5Bsource%5D=&search_builder%5Bdate_range%5D=&commit=Search

On the subject of Her2+ and ER+ all of us on this thread are in this boat - my ER+ percentage was 96, I was already post-menopausal so went immediately to an aromatase inhibitor, initially letrozole, then arimidex, then back to letrozole - switching to stay on top of shifting side effects. I stayed on these meds for 7.5 years and am now at 11 years post diagnosis. There is a short game and long game in being a triple positive - the initial recurrence threat seems more driven by the Her2+ aspect, longer term recurrence threat coming from the ER+ part. The good news is that the meds currently in use have demonstrated effectiveness for most early stage patients.

Chemotherapy before or after surgery is generally determined by clinical impressions of stage. The tumor size cutoff is usually 2cm and this was driven by the advent of Perjeta in 2013, although positive nodes with a smaller tumor, or other high risk factors meant possible neoadjuvent use as well. Perjeta was initially only used neoadjuvently, in the presence of a taxane, and only for tumors over 2cm. Prior to 2013 most of us had surgery, then chemo and targeted therapy, but now warranted neoadjuvent use is standard of care.

Wishing you the best - this thread is full of info and helpful folks. Hang in there, this early part is tough sledding, but you will get through it.