TRIPLE POSITIVE GROUP
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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.
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gamzu - I am sure your MO will watch your WBC and ANC carefully if you have had this drop early on. Neulasta cannot be used with weekly Taxol because it requires a longer duration between infusions, it is used with other regimens. It has to be given 24 hours post-infusion, and 14 days before the next infusion. Neupogen can be used with weekly Taxol though.
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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.
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Hello All,
I was just diagnosed with triple positive IDC today (not staged). The last three days have been a roller coaster ride. I am so scared. I have a little boy who just turned three and I’m so afraid that I wont see him grow up. Sad for myself for all of the wasted time that I didn’t use to see and do things in this great big world.I am in awe of how strong you all are. I honestly don’t feel like I can make it through the treatments. I am overwhelmed and exhausted and I have only been dealing with this for three days
I hope this is okay that I wrote this here. Just need to tell someone how I feel.
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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))
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Phelps128,
I'm so sorry you find yourself joining this group. I'm triple positive and a mom to three kids (14,8, & 4). This first part is definitely the worst. Waiting for the information is super difficult, I promise you once you know more it does get easier. The treatments feels overwhelming, but once you start it settles. You get into a rhythm of it all. You absolutely can do it! Be kind to yourself. You are allowed to be afraid and grieve, but also- invest in yourself so you can get better. It can be hard to take care of you when you have children and other responsibilities, but don’t be afraid to put yourself first while doing treatments.
Also, there is time to make decisions and choices. Ask lots of questions to your doctors, and here. I’ve felt so blessed to learn from the people who post here!
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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.
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Don't worry about sugar or eating anything else right now. At this point, nothing you can eat will shrink your cancer, nor will it feed your cancer. If you do chemo first (before surgery), the most important thing you can eat is protein and drink fluids (hydrate, hydrate, hydrate!).
Stop reading Dr. Google! There's so much junk out there. Listen to your doctors, or ask questions here.
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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.
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Thanks guys for replying. I will try to start walking. I have not left the couch since this Wednesday morning of biopsy.
I’m confused on what is better surgery before chemo or chemo then surgery. I also read that having a high % HR+ is a bad predictor of Herceptin efficacy. I’m scared that the herceptin won’t work for me because it’s 90%. I met a breast surgeon yesterday before I got my biomarker results back, so trying to figure this triple positive stuff out alone. The surgeon explain breast cancer treatment to me, but now confused on what treatment is for trip pos.
Also, did anyone send their path slides for a second opinion?
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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.
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Thank you for replying...means a lot. I am going for lymph node biopsy this week. Praying it’s clear.
I will keep everyone posted. Well wishes for health and happiness to all!!!!
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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!
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Phelps I had my surgery before chemotherapy since my original tumour was thought to be 1.5 cm. Both my surgeon and her intern decided that was the right choice. There are definitely pluses and minuses both ways, but it will be your estimated tumour that guides those recommendations. They found DCIS in my margins so now I’ll get survey after chemo as well. Due to Covid delays they decided to put me into chemo before re-excising.
Don’t be discouraged with the ‘cross talk’ between Her2 & ER+++. Many triple positive cancers respond well. I’m very Er, Pr + as well (91-100%). After I finish chemo I’ll go onto tamoxifen alongside the Herceptin to help target any stray cells all at once. That can help with cross talk.
Good luck on your node biopsy. No matter what the result, they have so SO many treatments for Her2+ and triple positive cancers.
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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!!0 -
Dr Google is the worst for newly diagnosed, it will drive you insane with worry. Take a deep breath and step away from the search 😁😁😁😁
Best of luck!
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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.
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.
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Thank you all so much for replying. It means a lot to me! All the info is very helpful
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i have a question for anyone. I had treatment along time ago to my left breast lumpectomy and chemo and whole breast radiation 2 lympnodes taken out but didn't spread. Now on to now just in the last few days on this same breast it is red swollen looks very much like IBC i have put ice on it for two days now plus ibuprophen. with no good results so far. it all started when i was holding a heavy baby and pressure hurt me for a few days now and has turned red .and looks just like the images i see online and now I'm scared. if i have IBC same breast as past can i just get a mastectomy and radiation but no chemo. anyone know ? or can i still get another lumpectomy in this same breast ? and just do radiation. im so scared i wont have the streanghth to do it all over again. Im just so devitstated right now
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My ANC bounced back this week to 3.0, very close to what it was 2 weeks ago before it took a dive. No idea. what the deal is but happy.
Yet another Taxol rash, though, this one all over my chest and abdomen within 10 minutes of the infusion starting. I already posted about in the Weekly Taxol thread but it dragged things out as they had to stop the infusion and watch me for 30 minutes, then restart at a slower rate and titrate back up. They were thinking about more steroids but it eventually faded on its own before they had to. The rash didn't reappear the second time even at full flow so we have no idea what's going on. It's clearly some kind of skin reaction to the Taxol but seems to be transient and not a real allergic reaction.
Hopefully next week will be better. Being the one the nurse is constantly watching and coming over to check my face and under my shirt every 4-5 minutes isn't very fun.
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ang7894 - I hope you’re able to see your breast doctor to see what’s going on with your breast. Take care.
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Hi ang7894. I too, hope your issue has resolved. A few months after my initial surgery, I developed a rash on my affected breast. At first, we were just watching it. Then I was sent to the original surgeon, who basically said, "Don't worry. Be happy." Yeah - no that didn't cut it for me. The breast area got redder and more painful. I suspected, like you, IBC. So I went to a Breast Surgeon specialist office, and they at least did an ultra sound and an punch biopsy. It came back fine. But that didn't help my problem and I ended up with the peau d'orange that is often found in IBC. To make the long story short, it took 10 months to have my issue definitively diagnosed and to start treatment. It turned out to be breast lymphedema and I saw two "experts" and it was the second person who diagnosed it and found the right treatment for me. I had to drive a ways to find a therapist who knew what they were doing and was in my insurance network, but oh, the difference!
So, if your issue hasn't resolved. First, you need to rule out IBC. Then, you might want to consider lymphedema as a possible source of your issue. Breast lymphedema is not that common, but I would say it is not uncommon. That is why you need someone who knows something about breast lymphedema to tell you if that is your issue. It took awhile to find out what worked for my lymphedema, but now it is not really an issue. Although, when it is humid, or very cold, or I eat too much salt, the problem can rear its ugly head. Also, I don't carry heavy bags with just my left arm, because that can cause a flare up, too.
Good luck, ange. Let us know how you are doing.
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I posted in the weekly taxol group too but I brought up Neratnib today with my MO and he sounded pretty excited. I’m in Canada and I asked if it was covered and he said yes. I particularly interested in maybe adding Nerlynx/Neratnib might address that cross talk between HR/Her2 based on what I was hearing. I’m only a T1b. I asked about what he thought my overall risk of distal metastasis was and he said he thought, based on all my information and that I complete all recommended treatment that I have about a 90% overall long term survival related to breast cancer. Id sure like to address that 10%!
He is happy I'm reading and informed. He said it may be an over treatment but that my case is a bit complicated with my age, my DCIS etc. I also have a variant of unknown significance on PALB2 and significant history of breast cancer and cancer in general in my family and since I'm hoping to keep some breast tissue I feel better with over treatment going with a bilateral reduction and radiation vs mastectomy. We're going to discuss it closer to the end of Herceptin.
He said it will go chemo, surgery, tamoxifen then radiation for me- all the while I get Herceptin. Then maybe neratnib/Nerlynx.
Just thought I’d post for others considering. I’m curious on experience. I’ve been reading the 2019 post on it too.
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Very interesting stuff, 1982M, thanks. I see my MO in 2 weeks, maybe I will discuss Nerlynx with her too. I also want to have a discussion about what I've read about the effectiveness ovarian suppression plus AIs vs. just tamoxifen, though it might be a bit early for that. And Herceptin infusions vs. injections after chemo is done. Theoretically the injections sound more convenient but the long-term study data of comparable efficacy just isn't there yet. I only saw over 6 years. 6 years is nothing in the world of breast cancer where recurrences can happen 15-20 years out.
It does look like Nerlynx causes a lot of GI side effects, which gives me a little pause. Did your MO talk at all about that?
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We didn't talk to much about side effects but they have a protocol now with slowly increasing the dose along with anti diarrhea medication that apparently works well.
https://www.sciencedirect.com/science/article/pii/S0923753420398331
I figure I can try and quit if it's unliveable. There's a thread on here from May 2019 I think with lots of people discussing it. Might be worth a bit of a read?
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Thanks, 1982M. Giving that thread a read and bookmarking your article and a few others to show my oncologist. It sounds like something that's worth trying. The potential for GI upset is always a concern for me because of my weight issues (though I've been maintaining nicely on Taxol so far and have even managed to gain a couple pounds) but you're right, there's no harm in giving it a go. It's not like you can't stop. Hopefully the insurance companies agree? Mine has been great so far but that's always an unknown.
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Hi , All a little update :: turned out i have an infection they did a mammo and an ultra sound and i was good ! so a few weeks of antibiotics they are saying, thank you to all that responded to my post. for all of you may you have healing and future good vibs coming your way !!
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ang7894, so glad to hear it turned out to be infection (the lesser of evils).
Hope you heal well!
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Thank you so much happy Holidays !!
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So glad to hear! I hope it clears up fast
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