TRIPLE POSITIVE GROUP
Comments
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I’m sorry you’ve had a reoccurrence BeautifullyBroken4284.
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how are you beautifullybroken? Thinking of you!
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Hey there, Redcanoe! When I was initially diagnosed in 2017 yes they did genetic testing. However, I had NO genetic markers for breast cancer. Not either BRACA 1 or 2.
I’ve been praying and praying it’s just a scare. However my oncologist bless their heart don’t think it is... they said one of their biggest concerns is wether it’s the same breast cancer as before, or if it’s a different kind of breast cancer. I said to her we both know cancer doesn’t grow symmetrically, it grows in anyway it wants too. I said if it wasn’t cancer it would be perfectly symmetrical and not look like a seahorse. She goes that is very correct Jenn. I started crying and she said we’ll get through this together Jenn I promise. When they measured the mass, (as that is what they are now calling it.), on Friday 5/21 the mass had jumped from 1.5 to 1.82. It looks like a seahorse laying horizontally. (In 2017, my big tumor looked like an upside down tug boat.) They found that there’s not 2 there’s one large one and several smaller ones. They changed the BIRADS score from 4 to 4c after the ultrasound. I said that’s not good, that’s just not good at all.
My daughter’s godmother went with me to every appointment in the first time around. Now here we are not even at the 5 year mark doing it again. I looked at her right before they started the biopsy and I said Teri does this feel like a bad dream to you or is it just me?? She replied with, it’s not just you, I feel the same way and it’s feels like déjà vu yet it feels so surreal.
I’m forgot how sore a biopsy is. I think it was definitely partial denial to be honest.y entire left arm hurts from my arm pit right down to my ring and pinky fingers. It’s ridiculous. I’ve isn’t helping of course. I don’t dare to try heat. I’ve taken medications that should help that are not. The stupid mass was sore before they even did the biopsy too.
I already have made the choice that I won’t subject myself to chemo again. It almost killed me literally the first time around. I still deal with regular medical issues because of it. I can’t imagine what more chemo would do to my body.
The tumor marker was 2 points away from being too high, but keeping in mind it had jumped from only being around 7.4, to where it is now. I bet this all could have been caught sooner if it wasn’t for the stupid pandemic and being too high risk to go in and doing everything virtually. I’m so frustrated and pissed off and if I’m not pissed off im balling my eyes out.
It would make such a big difference if my oncologist wasn’t talking and convinced that it’s a reoccurrence. But hearing what I’m hearing from her makes it all that much more real. I haven’t been on anything since I finished chemo either in jan 2018, because everything they tried putting me on I had an allergic reaction too. The tamoxifen and another one that’s new that begins with an N. I feel like did I mess up some how when I should have done something different after chemo was over....
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BeautifullyBroken,
I'm sorry to hear about your situation. Hope you get some definitive results from your biopsy soon! Now is not the time for regrets; we all make treatment decisions as best we can, given the circumstances. ((Hugs))
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BeautifullyBroken,
Just some encouragement, I am Stage IV and just passed my 3 year anniversary of my Metastatic diagnosis and am doing much better today. You can do it too! Hugs and love.
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I'm sorry beautifullybroken. I'm glad you have your daughters godmother with you. She sounds like a good friend.
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beautifullybroken - so sorry you are in this situation, please let us know how things are going but know we are here thinking of you.
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Hey SpecialK you're still posting! Just want to say hello
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lago - omg - hi!!!!! Yup - still here, lol! Good to see another OG though!
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Hi Ladies! My port is blocked by a fibrin sheath and I have to go in the day after tomorrow for a tpa infusion. I don't know what to expect and no one really explained anything other than it is a three-hour infusion, it's at my local hospital, and I'll need a driver. Has anyone here had this procedure done for a blocked port? Thank you in advance!
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tld - I have not experienced this issue in the six years I had a port. I did use the search function and put in TPA and port blockage - got post from members that had a shorter TPA treatment though at the time of the blockage discovery. Here are links - maybe you can send a PM?
Look for the post from roofcat59, who has been active relatively recently and may get an email notification if sent a PM:
https://community.breastcancer.org/forum/69/topics/788735?page=225#post_4811278
Here is a second one from lostpup from last year, although not an active member:
https://community.breastcancer.org/forum/69/topics/877455?page=2#post_5590987
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Hi everyone,
I just got a call to schedule my 3rd echocardiogram today and the nurse said that my oncologist had also requested I be scheduled to see a cardio oncologist. While we discussed that I was due for an echo, he didn't mention the cardiologist. Is this common when on herceptin? It made me a little nervous as heart disease is a very big genetic risk in my family and my dad dying recently from heart failure. The oncologist hasn't seemed concerned about my previous echoes although chemo gave me severe anemia.
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I had the TPA infusion today and thought I'd just mention it here in case someone in the future is searching for info about it! It was a very simple procedure in the hospital's radiology department. Basically, in a nutshell, it was a three-hour infusion with clot-busting meds. It worked! They were able to get blood from the port. I felt a little light-headed for a few hours afterwards but it was all fine! Thanks, SpecialK, for your input - I am grateful!
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MsMurphy, I too had to get an echo done every few months throughout my Herceptin/Perjeta treatment. I did not see a cardio oncologist but maybe your onc suggested it due to your family history. I am so sorry about the loss of your Dad. I lost my Dad in January, so I understand your pain. I think if your onc did not express concern about your previous echos, he's probably just having you see the cardio oncologist to ease any concerns.
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MsMurphy, I would think they are just being careful due to your family history.
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Has anyone else stopped perjeta after 6 treatments? I’ve completed 6 TCHP and 6 HP treatments. My oncologist had me skip treatment last cycle (due to side effects) and just gave me IV fluids and this time just gave me kajinti. The nurse practitioner said this would be my treatment regoing forward - just kajinti through January 2022. I know from seeing other posts that many countries don’t offer perjeta as part of treatment plan, depending on cancer.
I’m okay with this course of treatment and the logic behind the change. Just curious if others had this change as well.
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Hi NSBrown!
After I finished chemo and surgery, I just did Herceptin for a year so I didn't continue with Perjeta during my adjuvant treatment. I'm still here, almost 7 years later.
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I'm stage iv so i'll be on Herceptin and Perjeta for as long as it works, three years so far.
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"...Tamoxifen treated BC patients showed a reduced rate of hospitalization and strikingly no fatalities for COVID-19. In vitro experiments confirmed a protective role of tamoxifen while an increased susceptibility to SARS-CoV-2 infection of ER+ cells treated with fulvestrant was observed..."
https://www.researchsquare.com/article/rs-598923/v1
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Experts claim they identified human genes that can protect against Covid-19
- A team of scientists at the New York Genome Center, New York University and Icahn School of Medicine at Mount Sinai say they have identified the genes that can protect human cells against Covid-19.
- The goal was two-fold: to identify the genes that make human cells more resistant to SARS-CoV-2 virus; and test existing drugs on the market that may help stop the spread of the disease.
The research team also identified drugs that are currently on the market for different diseases that they claim block the entry of Covid-19 into human cells by increasing cellular cholesterol. In particular, they found three drugs currently on the market were more than 100-fold more effective in stopping viral entry in human lung cells:
Amlodipine, brand name Norvasc, by Pfizer, to treat high blood pressure and angina.
Tamoxifen, brand name Soltamox by Fortovia Therapeutics, an estrogen modulator, to treat breast cancer.
Ilomastat, brand name Galardin, it's a matrix metalloprotease inhibitor, that now being manufactured by many companies; a chemotherapy agent, with applications for skincare and anti-aging products.
https://www.cnbc.com/2020/11/20/crispr-scientists-claim-identifi...
https://www.cell.com/cell/pdf/S0092-8674(20)31394-5.pdf
Considering that tamoxifen is typically given to patients for years as a cancer therapy and prophylactic, it would be interesting to investigate if patients taking tamoxifen have a reduced risk of SARS-CoV-2 infection and/or display less severe symptoms post-infection.0 -
very interesting! I’m not on Tamoxifen but I am on amplodipine for hypertension so it’s good to hear this. I am on anastrozole as anti estrogen therapy wonder if that helps at all
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I'm on amlodipine as well. Who knew?
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Nsbrown -I only had six cycles of Perjeta. I didn’t question my MO stopping it. I was not very HER2 positive and my post surgery pathology was HER2 negative. I still did the full year of Herceptin followed by a year of Nerlynx.
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I will finish Herceptin and Perjeta in July and have a few questions about ongoing therapy after that. I am currently taking anastrozole with OS via Trelstar. My baseline DEXA showed osteopenia. I’ll see an endocrinologist in September to discuss that.
First question. My onco is leaving the decision to take Nerlynx up to me. She says she isn’t convinced that it buys you much, and it diminishes your quality of life. The data I’ve read seem to indicate that it does buy you something, especially for TP patients, but that data was in a cohort of people who didn’t have a pCR. I did have a pCR, but I’m still leaning towards giving Nerlynx a try. I’ve read the horror stories—is anyone able to reassure me that it isn’t unbearable for everyone? Any advice before I begin? Also, is anyone aware of any research in individuals who had a pCR?
Second question: I’m opting for Zometa to deal with the osteopenia. I have bad heartburn already so the pills sounded potentially problematic. Does that make sense? Is there a reason I should do more research about which form of treatment is better?
Thanks for your help!
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Anna - Nerlynx isn't unbearable for everyone. I took it with not a lot of issues. Others suffered. This thread was pretty active back in the day. That being said, with a PCR, your risk of recurrence is already only ~5%. I'm surprised your onc kept you on Perjeta for the full year because it didn't add much value either. You can't add a whole lot of value with additional treatments when your risk is already that low. Nothing is going to get you to 0% risk.
As for your second question, osteopenia doesn't necessarily need treatment. Here is an article about osteopenia. It's not very technical. I've posted it several times before because I found it very interesting. If you have a copy of your DEXA report, you can use it to calculate your risk of fracture at this website. Note that on that calculator you need to choose your country for reasons I don't really understand. My doctor would not recommend biophosphonates for me unless my risk of hip fracture was >10% or my risk of major osteoporotic fracture was >23% (or maybe it was the other way around, I can't remember because my scores were so far from those numbers even though my T-score said I had full blown osteoporosis in my spine). I was relieved to not need any treatment for that. Good luck with your decisions!
Edit: there are hyperlinks in my response. I'm not sure if that is obvious when reading it. But here they are again:
The thread: https://community.breastcancer.org/forum/80/topics/870980?page=1
The article: https://www.npr.org/2009/12/21/121609815/how-a-bon...
The FRAX calculator: https://www.sheffield.ac.uk/FRAX/tool.aspx?country=9
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Thanks so much!!! Very helpful!
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Elaine there. It is nice to see your post. I am sad to see so many other HER2+ recurrences on this post. For those of us going thru treatment as fairly new BC triple positive patients it makes one wonder if we will even get a few years out of the misery of chemo, radiation and herceptin. I guess some really long term HER2 + patIents who never had recurrent BC never come back to post
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Racheldog,
Yes, many old-timers don't post here any more which means they are out there, living their lives. I'm still doing ovulation suppression + hormonal therapy, so I stick around and post on some of the OS + AI threads.
My oncologist says that HER2+ breast cancer patients tend to recur during the first 2-5 years after active treatment is over. I used to visit my oncologist every three months but then I graduated to every six months and soon, I will just see her once a year.
Now is the best time to be diagnosed with HER2+ cancer because we have a number of treatments and our prognoses have vastly improved since the 1990s.
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I was 10 years out before my reoccurance, I'm still here but just mostly read because I don't have much to add, usually someone says what I would say before I can say it.
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Thanks to both adds on this post. I am older (late 60's) and I pray for 10 years (I hope). Like everyone else it is hard to not think about looking over your shoulder forever and worry about every ache or pain. I am still in treatment, had Kadcyla, now currently radiation, and then 4 more herceptin infusions to follow. Has not been fun but have to do it.
Seems like this is all a crapshoot. You can do everything right and then it comes back. My first chemo infusion nurse was 16 years out as HER2+ and still doing well. I look at her as the poster child.
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