TRIPLE POSITIVE GROUP

Nsbrown54

Hi luvpups0611 - I was was diagnosed in June 2020 and started treatment TCHP end of June. I did six rounds, then 12 of herceptin and perjeta. Treatment (TCHP) is cumulative, so you may not start to feel some of the side effects until after subsequent rounds. HP is much easier. I have GI issues that predated my BC diagnosis, so I did experience nausea and diarrhea with TCHP. Take the medication as directed by your MO and you’ll do fine. The oncology nurses are very helpful and most centers have a triage line that you can call with questions and issues. Don’t hesitate to call them. They are there to help. I had issues with staying hydrated and went in for frequent IV fluids, which helped. I started loosing my hair on day 10, so I had it buzzed and got some cotton chemo caps. Wear comfy clothes to treatment, something that opens in the front so they can access your port. I brought snacks and lunch, audio books and downloaded movies ahead of time. Remember to bring a phone charger and earbuds with you. Best of luck with your treatment.

bcbarbie10

hello! Checking in after 10 years of being cancer-free tomorrow! Yay!!! I still see familiar names, Fluffqueen and SpecialK! Great work you gals for guiding our triple positive sisters through the years. Has anyone heard about the other girls here way back 2012? Camillegal, Lago, rozem, and of course, TonLee. I hope they are all doing well too. Sending lots of love and positivity to all

gamzu710

I had my post-radiation follow up with my MO this afternoon, along with my monthly Zoladex shot. She told me to make a follow-up with my breast surgeon, so that is next month. My next echo will also be coming up then. And then I see her again in 3 months, and also my RO follow-up. SO MANY appointments. I've also found a concierge PCP practice that I think I'm going to try for my next physical because I have learned during this that I really don't like it when medical offices don't communicate with me or give me enough time and am willing to pay someone to be extra nice and responsive to me. We'll see.

Anyway, we are going to start hormonals with Zoladex + exemestane. The prescription is in, but I haven't picked it up yet. Originally the plan was tamoxifen but I expressed willingness to try OS + AI because the recurrence numbers are a little better. My MO said she normally doesn't do this with pre-menopausal women because the side effects are a little worse and rates of completion aren't good, but felt that I am a "compliant" patient and it's worth a go. So we're going to try it and if it's intolerable to me, then we'll go back to the original OS + tamoxifen plan. I'm very nervous about it (and I'm very thin already so at higher risk for bone density issues; I wouldn't be surprised if I already have osteopenia) but I think if I didn't at least try it, I would always wonder. So we'll see.

Joules44

Hi Jess! I was 49 when I was diagnosed and your post brought me back to those beginning days, weeks, months. I had Taxol and Herceptin and honestly did pretty good all the way through. I worked except for the days I had treatment and my bloodwork was good enough throughout that I never had to miss a chemo treatment. But you'll soon learn that your story will be all its own. It is crazy to me how unique each of our stories are every step of the way - the treatments, the side effects, our mental health, the surgeries, the decisions we make. I was scared at the beginning and I still have fears some days. If I can give you any advice, I would say to stay curious about your life as it's unfolding. Release the expectations and/or fears and just try to observe with curiosity. I am so much happier when I remember to stay in that place. And I always think of this Tom Petty line, "most things I worry about never happen anyway." That works in just about every instance of my life, lol. I would also suggest acupuncture during the year of your treatment. I firmly believe that I felt good despite chemo because I regularly went to my acupuncturist, who is a godsend. Please continue to check in and let us know how you're doing. Lots of love to you!

BigPeaches

I haven't seen those ladies in a while but I don't post as much as I used to. Good to see you though!

1982M

gamzu- it's good to hear from you! I was wondering how everything was going for you. I'm interested in hearing how your experience with AI's are. I started tamoxifen recently- about two weeks ago. So far its fine. I had some hot flashes the first few days but haven't noticed much since. I did read that they can show up later so we will see. I wasn't sure if I wanted to start before radiation but my MO said too so I did. I was worried a few weeks back as I had headaches form the start of Jan until early March. They were getting awful but since I went u dear anesthesia, they all just stopped! I talked to my MO and he doesn't think we should be concerned. Keep monitoring.

Edit to add: I always wonder how helpful blocking estrogen is in triple positive patients… I know that triple positive patients tend to get less benefit bc of the Her2 and ER cross signalling. If anyone find good articles on this- I’d love to read them.

I had some delays. I caught Covid before my re-excision and planned oncoplastic procedure. It was a bit of a gong show. They decided to use local for the re-excision while I had covid and not do the oncoplastic reconstruction until later. I had a bilateral oncoplastic reduction, I'm so grateful for my plastic surgeon. Even though now I've experienced some delays getting to radiation, my breast after the re-excision was brutal- they took a total of 38g of tissue from my original lumpectomy and then re-excision from the 9'oclock position. With the way my breast was, it just formed a huge dent. However, bc they didn't do the procedure together I still have a big scar from my lumpectomy but I feel SO much better about my breast without the big dent. There also was no residual cancer found in the re-excision or in the breast reduction pathology so I'm feeling very positive. I have my radiation planning this next week. They aren't doing a boost dose though. With the oncoplastic procedure, they RO said that we wouldn't do a boost to the site but she felt that was a ok choice considering my small tumour, and systemic treatment. I attached the article about early stage Her2+ and boost if anyones interested. https://ascopost.com/news/september-2020/local-recurrence-with-radiation-boost-in-her2-positive-breast-cancer/

I'm very excited to get radiation started and over with. Im not crazy about how it all unfolded- they took me off Herceptin too by accident but I got it sorted with only a week delay.I'm really looking forward to a hopefully much better summer then last year. I had my 9th Herceptin so over half way done Herceptin now too! I just had my echo so hopefully it all goes smooth.

gamzu710

Happy to hear an update from you, 1982M! I've been wondering how you're getting along. Sorry you've had delays, but glad you are through your surgery and finally starting radiation.

I haven't noticed any side effects from the OS + AI yet except maybe some mild indigestion, but it's only been 2 weeks. From my understanding, 8 weeks is about when people start to really notice stuff. I try not to think too much about the ER-HER2 crosstalk. Statistically the prognosis for triple positive is very similar to HR+/HER2-, so obviously something about the treatment must be effective, and a lot of the cross talk studies are in vitro, not in vivo, so I just don't find it particularly helpful to imagine all my treatments canceling each other out to null effectiveness. If that was how it worked in vivo, triple positive patients would all be relapsing left and right but they aren't. I'm definitely going to push for Nerlynx once Herceptin is done, though!

This study talks about the effectiveness of Tukysa, Ibrance, and fulvestrant on triple-positive cells in vitro: https://aacrjournals.org/mct/article/21/1/48/67516...

But it looks very early stage and I can't imagine a drug like Ibrance, which commonly causes severe neutropenia, ever being approved as a "bonus just in case" treatment for early-stage patients, particularly stage 1 patients in their 30s like us. The marginal benefit wouldn't justify the risks.

Cowgirl13

Hi 1982m, I've never really worried about being HER2 positive. yes, I freaked out about Cancer but the treatments for HER2 are excellent. I'm coming up on 13 years cancer free in June.

Your comment "Edit to add: I always wonder how helpful blocking estrogen is in triple positive patients… I know that triple positive patients tend to get less benefit bc of the Her2 and ER cross signalling. If anyone find good articles on this- I'd love to read them". I've never read about this and I don't think that is the case but I sure could be wrong. Hopefully SpecialK will check in on this.

Thinking good thoughts for you.

Liz

Redcanoe

hi Jess! I have a very similar story to yours. My tumour was originally 1.7 cms but because of covid delays it was 2.5 cms (and two positive lymph nodes!) I finished chemo almost a year ago and I'm feeling great. The beginning is very scary and stressful. I did the chemo regimen you were prescribed and it wasn't as bad as I feared. Big hugs!

SpecialK

I don't have a ton of info on the crosstalk situation between Her2+ and ER+, and most of what I have found previously online is older information, which is focused on treatments that become ineffective due to resistance and looked at in the MBC population. Resistance to treatment is, I believe, more prevalent because this population is on treatment for a longer period. I have seen very few early stage patients on this site who have resistance from the start. Like, I can count on less than one hand. Also important to note - after 2013 neoadjuvent treatment of tumors that met the criteria to receive newer targeted therapy (Perjeta) offer a better look at the effect of treatment on the tumor pathology. Those of us who had adjuvent chemo with Herceptin have no idea how these medications worked against our tumors. None of us can really know about the pathological effect of anti-hormonals on TP patients because those drugs are post-surgery, so we are all crossing our fingers that they are effective. I will say that my MO like letrozole for his Her2+ patients over Tamoxifen, and this may be due to the crosstalk issue. At the time I didn't really question him - surprisingly, lol! We did since discuss changing to Tamoxifen when I started to lose bone density, but he preferred that I remain on letrozole and start Prolia rather than switch to Tamoxifen and potentially build bone that way. There is some discussion about different anti-hormonals in the links below. Also important to acknowledge that what we do have are stats about recurrence in the early stage triple positive population, which are pretty encouraging. The current treatments available seem to bring Her2+ patients to the same recurrence risk as non-Her2+. For both populations that are ER+ there will always be some degree of ongoing risk of recurrence long-term, which is extremely problematic to calculate on an individual basis. Here are a couple of older looks at the crosstalk issue.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3808214/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2746389/

edited to add another link - I actually searched crosstalk and my own member name and found this additional link which was posted by another member and then discussed, it does echo some of the info in the above ones, but may provide some additional info too.

https://www.hindawi.com/journals/ijbc/2018/7835095/

gamzu710

My third echo for Herceptin is coming up next week. Time flies even when it seems like it isn't. I shared my bad experience with my MO at my last appointment and she was disturbed and offered to refer me to another practice, but they promised changes so I'm willing to give it another chance. I have an order in hand from my MO that says in all capital letters "patient requires female tech" so hopefully it'll be fine. If not, then I know there's another option for the remainder.

I also finally got around to reading the information pamphlet on exemestane (after taking it for 2 weeks already; I'm getting more lax!) and noted that the "call your doctor immediately" symptoms are listed as shortness of breath or having the sudden urge to harm yourself or others. I'd read about people possibly feeling suicidal while on hormonal therapies, but becoming a homicidal maniac? OK then!

1982M

Thanks SpecialK,

Honestly I feel (mostly) really positive about my outlook. I am definitely more inquisitive then anxious about any of it any more.

I have so far felt really good on tamoxifen expect maybe my mood- but I can’t tell if it’s situational or from the meds. I guess only time will tell. I had a few hot flashes the first week but going into week three, seems fine so far. Hips feel a wee bit achy but I couldn’t just blame tamoxifen- that’s been an issue on and off for a while.

Nsbrown54

I’ve been searching for survivorship plan specifics - types of proactive scans and / or testing other than blood work, PAP, colonoscopy, DEXA scan, mammogram and breast MRI that should be considered? I had a full body scan, but am wondering what else should be considered and how often? Since I had mastectomies, mammogram and breast MRI are out, just checkups every 3 months. Or should I only get scans when I have issues?

gamzu710

I have a similar question! I met with my surgeon today for my first follow-up since active treatment. I was referred for a 6-month MRI due to a couple of BIRADS 3 things identified at my post-diagnosis MRI in August (ok, 6 months give or take). I have that on May 1. My MO and my surgeon both referred me for another diagnostic mammo in August, which will be 1 year after diagnosis. My surgeon said that pending these upcoming MRI results, the survivorship plan from here on out is to continue with OS + AI and then have a diagnostic mammo every year and a clinical breast exam every 6 months in coordination with my PCP. I asked if it wasn't supposed to be imaging every 6 months, and she said no. Her hedge was that this depends on these upcoming MRI results, and also if the mammograms identify too much dense tissue, then maybe we talk about more MRIs, but that's not the base plan.

I was surprised by this, though I guess I can see it. My real fear is distant metastasis anyway and a mammogram is not going to catch that, nor is a breast MRI.

Nsbrown54

gamzu710 - My MO recommended that if I have issues that come up to see my primary care physician. I can get an appointment quicker with her. I mostly see my orthopedic doctor and have PT for joint issues. June 2020will be 2 years since diagnosis and I was NED when I had my mastectomy in November 2020, but the fear of recurrence is something I deal with. Support group helps.

1982M

Hi Gamzu and cardplayer,

My survivorship plan is yearly MRI's and yearly mammograms alternating. I think I get the yearly MRI's bc of my breast density and probably my family history of cancer/breast cancer. So every 6 months they will check out my left breast and once a year MRI both. I don't think my variant of unknown significance played into it, but maybe it did.

I hope my breast density decreases with tamoxifen and I can let go of all the intense testing.

Nsbrown54

1982m - My mammogram always had the disclaimer “Consider adding yearly screening breast ultrasound as a supplemental screening study for a woman with heterogenously dense breast tissue on mammogram“. I didn’t do this since I always had a breast MRI. Kind of wish I had an ultrasound since they found my BC on my breast MRI in June 2020 and saw nothing on my mammogram 6 months before in Dec 2019.

1982M

Cardplayer- I have little faith in the mammogram. I got a mammogram bc of symptoms but they never saw anything on the mammogram. Actually the mri wasn’t great either- it was ultrasound that was best at visualizing my tumour.

I’m hoping the tamoxifen and aging decreases my breast density.

Phelps128

Hi Everyone,

I have not been on here in a while. I had to finish my TCHP. I had surgery on Friday and just got my results today. I did not have a PCR. I had micrometastasis in 1 out 8 lymph nodes. I’m beyond devastated. I was really hoping that I would have a PCR. It’s like being diagnosed all over again.

I and so scared. My little boy is only three😭.

Sorry be a downer…just need a little support from someone that understands what I’m going through.

Thank you

SpecialK

phelps - I understand your fears - we all do. Did you have residual tumor in addition to the micromets in the node? Keep in mind that the majority of those with a TP diagnosis do not get a pcr with neoadjuvent chemo - it just doesn't happen for the majority, so you are not alone there. That said, it is important to maintain perspective on what that really means - while there is a DFS and OS advantage, the studies that indicate this include patients across stages I/II/III, so that represents a lot of different tumor sizes and nodal statuses, subtypes and hormonal receptor types. If you are strongly ER+ you still have anti-hormonals to count on, and, at a minimum, continued Herceptin for the balance of the year. Has there been any discussion of adding post-surgical targeted therapies like Kadcyla or Nerlynx?

Phelps128

Thank you Special K! We are so lucky to have you❤️

I only had micrometastasis in the one lymph node (1/8), no residual tumor. At initial diagnosis, I had one confirmed LN with 1 cm tumor and breast tumor was a little under 2 cm. I was 90% estrogen and 99% progesterone, her 2 3+. Not sure yet what the micromets are from my surgery.

I am going to try to get on an open label study of Enhertu vs Kadcyla. If I get on Kadcyla arm,I am going to try to get on that vaccine trial.

Any one try Enhertu on here? I’m sure that there will be side effects. I’m just tired 😔

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JustKeepSwimmin

Phelps128,

The evidence is clear, class 1 (ie nearly PCR, like you) has comparable outcomes to PCR. So good news! 😊

I had lots of residual disease and 5 nodes pos.

At the end of the day we don't know if we'll be on the lucky or unlucky side of those odds. We just have to live our lives as best we can! But all to say... your outlook seems pretty good if you look at the research. 😊

Phelps128

thank you justkeepswimmin! I know it could be worse:( I appreciate you taking the time to reply

I missed the vaccine trial by one spot today. What are the chances? My onco said Enhertu is probably too much for my case, so I guess it will probably be Kadcyla moving forward.

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Phelps128

Hi All!

Does any one have experience with having their HER 2 status change to equivocal after neoadjuvant TCHP? I am waiting on my FISH test, but my understanding is that if it comes back HER 2 negative that it may mean that herceptin will not work.

Any thoughts?

Thanks again everyone!

Farrah

Kattis894

Hallo ladies, I just wanted to pop in and say I am still alive and cancer-free. These "survival posts" use to mean the world to me so now I can maybe give back some hope to someone else going threw treatment. I see some familiar names and would like to send a huge thank you to all the help and comfort you gave me while I was scared and though I wasn't going to make it. One day at the time but still doing well. Lots of love, Kattis

BigPeaches

phelps128, I haven't had that experiance myself, but I always thought unless you are HER2 positive, Herceptin is not an option.

hapa

phelps: my HER2 status changed after chemo. It was actually negative on my first biopsy. I was enrolled in a trial for neoadjuvant Ibrance but failed out based on the results of a later biopsy which showed me to be HER2 positive (barely, on FISH test). It changed back to negative based on the post-chemo surgical anaysis but my MO kept me on Herceptin for the remainder of the course. I also did Nerlynx after that and have been taking AIs. I hope this helps!

1946Taco

Phelps - I prefer to think of it as if you aren't HER2+, you don't NEED Herceptin. Kattis - good for you. Five and a half years for me but I have stuck around. I too remember how much I needed these groups.

Phelps128

Thanks everyone for your replies!!!

Hapa- Did your MO give you an idea if it is a good thing or bad to have HER 2 change to negative? There was not enough tissue to do the FISH testing, so not sure what the final HER2 result is

Racheldog

Thanks Kattis894, we need some HER2 positive good stories and posts to come on to this site more often.