Birads 5 with calcification
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@lisat8228 It got better for me about 7-10 days after my infusion and I could eat most things even if I didn’t enjoy it as much but that first week or so, I pretty much lived on ramen and candy. I could taste salty and sweet, everything else was trash.
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@lisat8828
I am sorry to hear that the chemo has finally effected your taste buds, but I'm not surprised. The good news is that mine came back after the AC portion of chemo ended. (Taxol has different side effects) I had the same reaction to you as far as salt. I remember joking on Christmas and grabbing the giant container of salt. Even Ramen had no flavor for me!! Coffee also became completely unpalatable, so I had to switch to tea.
On another note, be glad that you are an online friend and don't walk in my circles IRL.. My husband has been really sick this week (102 degree fever, body aches, etc.) so I finally broke down and took him to Urgent Care yesterday. Apparently he has Covid AND the Flu! Really hoping that I don't catch this since we have a family wedding in Long Island a week from today and apparently our hotel is non-refundable (All $800 worth for 2 nights!). Fingers crossed for me.. He picked it up from our 20 year old son who rebounded much quicker than his dad..
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Oh wow, I had to laugh at the image of you grabbing the giant container of salt. I can totally relate! It’s wild how every single meal has been just tasteless. 😂 Even ramen without flavor? That’s just cruel.
And oh my goodness, Covid AND the flu at the same time? That’s just unfair. I really hope your husband bounces back quickly. In our house, it seems like when one person goes down, it’s only a matter of time before the rest of us follow so I’m sending you all the Lysol, gloves, and masks virtually right now. 😷🧤✨ Definitely agree that the room shouldn’t have to go to waste after spending that much on it. Fingers crossed you stay healthy and get to enjoy the wedding without any extra drama!
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@lisat8828
And I'm down… Fever of 100 last night, complete with headache, body aches and chills..
We've decided that even if I shouldn't go to the wedding (fear of this spreading), we will still go to Long Island and enjoy the room..
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@scaredme Omg noooo! I’m so sorry you’re feeling like that. Sending you the biggest virtual hugs right now. I don’t blame you one bit for still wanting to enjoy the room you paid for. You definitely deserve that. I really hope you and your husband can still find some comfort and a little joy just being together and making the best of it, even while you’re both under the weather. Wishing you a speedy recovery and some cozy, restful quality time ❤️
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@lisat8828
Still feeling lousy on Day 3 of this, but we were able to get our money back for the room and ferry, so that's a bit of good news! Thinking we might plan a trip down South (Memphis, Nashville or Charlestown, SC) in the coming year.. Very exciting since I really have only been to FL (We are both from MA)..
How are you doing?
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@scaredme I’m so sorry that you caught the bug. Is it COVID, the flu, or both? Either way, they are both awful and I can only imagine how miserable you must be feeling right now. I’m really glad you were able to get your money back though. those rooms were way too expensive to just “make the best of” without being able to fully enjoy the whole getaway.
The weather here in Alabama has been changing. it’s cooler at night and almost everyone around here has been a little under the weather. I thought for a minute I was coming down with something myself; had a scratchy throat and stuffy nose for a couple of days, but luckily it cleared up.
My taste buds are finally coming back around, so I can actually enjoy food for the next five days before I’m down again. lol! How are you feeling now that you’re on Day 6?
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Anyone reading this who feels like they have a cold but no fever? Check the pollen & mold count in your area before you test for and try to treat anything infectious. Here in Chicago it's sky-high for everything but grasses (which are moderate but can still bother you if you're allergic to them). My friend down in B'ham reports that the ragweed is high there too!
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@lisat8828
I'm finally feeling better. I actually only tested positive for Covid, but who knows with the at home tests. I actually ran a fever for 4 days!
Glad that you have a few days that you can enjoy food. Hard to believe that you have AC #3 next week! Are you noticing any tumor shrinkage? Just asking because you said you could feel it previously. Hoping this stuff is kicking the crap out of it.
Holding my breath this month and next as I approach 5 years Cancer Free on October 30th.. So crazy to think that it has been that long. Hoping that the stats are true and the chance of recurrance drops significantly after 5 years.. I still think about it every day… Maybe the next 5 years will lessen that constant mental burden… One can only hope. For now, I am just extremely grateful to still be here.
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@chisandy That’s exactly how I felt. It seems like everyone I know around here has been under the weather. In Alabama, this is pretty common whenever we’re transitioning from one season to the next. Honestly, this is one of the only states I know where you can experience spring, summer, fall, and winter all in the same day 😂😂😂. It always triggers allergies, congestion, and everything else. we even call it “pneumonia weather” down here. lol
@scaredmeI’m really glad to hear you’re feeling better. If you don’t mind me asking, what symptoms did you have besides the fever? When I had Covid back in 2022, I went through the worst headache, fever, chills, and completely lost my sense of taste and smell. I was miserable. I’ve heard the symptoms are a bit different now. For me, kind of like with chemo, the altered taste buds are the hardest part to deal with.
On a positive note, my tumor has almost completely dissolved, and I’m honestly surprised at how quickly the chemo has worked. Do you find that the Taxol infusion has a similar impact? Would my tumor continue to shrink, or is it a bit milder regimen than the AC?
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Also @scaredme congrats on your 5th year cancer free that’s such an incredible milestone. I can’t help but look forward to reaching that point myself one day. Even though I’m still in the middle of treatment, I already feel the weight of the fear of recurrence. It’s like I’m grieving the person I was before all of this, and coming to terms with the fact that my life will never be quite the same. Being only 33, I know I should have more years ahead of me than behind, but the thought of living those all of those years in constant fear and anxiety is really hard to sit with. I truly feel like if I was much older, going through this wouldn’t be half as hard as it.
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@lisat8828
I am so happy to hear that you can feel a noticeable difference in your tumor! Mine was removed before chemo (along with all my lymph nodes), so I never got to experience that. So awesome that you can feel the progress. To my knowledge, Taxol works on different growth cycles of the tumor than AC. The goal of chemo is to target potential microscopic cells that may have escaped and not yet taken route in your whole body, so the combination of AC-T is supposed to get all of them. It is easy enough to remove the tumor and lymph nodes with surgery, but impossible to get those rogue cells without systemic intervention. I am hoping that the neoadjuvant chemo will save you from a whole axial node dissection (which I had because 3/3 of my sentinel nodes tested positive after my first surgery). I have minor lymphedema in my left arm and have to wear a compression sleeve as a result.. Fingers crossed for you.. If the chemo does its job, it will kill any cancer in the lymph nodes that they originally found, so no need to take any more..
As far as Covid, my major symptoms were a terrible headache and a fever. Mine got up to 101 and lasted several days. Even though I have a lingering tickly cough, I am finally feeling better. Please make sure to stay away from sick people and if you can, public places. Illness can be very serious for you at this point. I was "lucky" in a sense with my treatment.. It was in the midst of the pandemic in 2020- early 2021 .. Other than going for chemo, I stayed home for 4 months.. It was such a crazy time.. We were all so afraid of Covid.. no vaccines and the risk was not worth it… We were even working 100% from home at the time. The only person I saw besides my husband and kids was my mom (who stayed away from my sister and her family and everyone else for those 4 months so that she could be a support to me). Our efforts were successful.. I didn't get so much as a sniffle during that time.. :)
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Just checking in.. How are you doing and where are you in your treatment? Last A-C next week? I hope all is going well for you.
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@scaredme Hey there! I had my 3rd regimen on Wednesday, and my last A-C treatment is scheduled for the 24th. After that, I’ll see my oncologist again the following week. I’m expecting he’ll order some imaging to check how well the tumor responded to Part 1. The nurses asked if I’d be doing surgery before Part 2, which really caught me off guard since I thought surgery only came after both parts. I guess I’ll find out for sure at my next appointment.
This week’s infusion wasn’t too rough, but my blood pressure was 209/124 when I went in, and my white blood cell count was high. On top of that, I’ve come down with what seems like a sinus infection that’s had me down for the last four days. Honestly, it feels like I’ve gone a few rounds with Mike Tyson, lol. Maybe the infection is actually masking the chemo side effects. stuffy nose, cough, weakness, all of it. A friend’s mom even mentioned it could be Covid, and it hit me how silly it was that I hadn’t thought of that, especially since you and I just had a whole talk about it 😬.
And as for my blood pressure, it’s wild to think I never had an issue with it until this diagnosis. How have you been feeling? Are you back 100% yet?
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I am sorry to hear about your blood pressure. I wonder if it is related to the chemo?
That's great news that your WBCs are high.. The shots you get afterward are doing their job. I had a similar response and was able to skip them completely with the Taxol. Hopefully the same thing happens with you. Every dose that you get that is on time and full strength is a victory. Oftentimes people need to get dose reductions and/or have to wait an extra week for their treatment.. You are one tough lady! I've read that A-C chemo is the toughest one out there, and not just for Breast Cancer.
Right now, your next steps are likely one more A-C then 12 weeks of Taxol,, followed by surgery and then radiation? I know that they mentioned radiation first, but that would surprise me. Radiation makes it more difficult to heal, so it usually follows surgery but you never know.
I seriously think that you are almost through the hardest part of treatment. I did not find surgery all that awful and I had reconstruction too. I also found radiation easy after chemo. My husband used to joke and call it "tanning".. Cracked me up every time he said it!
My son turns 20 today! Hard to believe how time flies and I now have 2 grown kids (my daughter is 23). Living life to the fullest and so happy to still be here. Cancer is such a perspective.
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@scaredme Chemo is definitely tough. it breaks you down in ways I never imagined. But what’s getting me through it is hope, knowing it’s giving me the best chance at beating this. The support in this group has also given me so much strength. All of the information you and the other women have shared really prepared me mentally, and I think that’s made a huge difference in how I’m handling things. I knew what to expect and how to manage most, if not all, of the side effects. When I first joined, I had no idea I’d connect with women who would literally carry me through this, I’m so grateful for that.
As for radiation, I did meet with the radiologist, and if I remember right, I’ll know for sure after surgery. I have a feeling I’ll need it, but like you said, AC is the hardest part. Once I get through this last round, I’m praying it’s smoother sailing from here.
Happy 20th birthday to your son! What a blessing to be here to see your kids become adults. And I’m claiming that you’ll see grandkids and even great grands! 🙌🏾
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Last AC tomorrow!!! Hope you are feeling better and are up to it.
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@scaredme YAYY! I finished my last AC this morning. I really wasn’t feeling up to it, but I pushed through and got it done. I woke up nauseated, but managed to finish this final round. I’ll be seeing my oncologist on the 30th and then start weekly Taxol infusions on the 8th. If you don’t mind me asking, what medications are you currently taking to help prevent recurrence? And have you had any side effects?
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Congrats on getting A-C done!! I found Taxol much easier (though I did it on a dose dense regimen instead of weekly).
As far as meds, I took Verzenio for 2 years after completing radiation. It is prescribed for people at high risk of recurrance with hormone positive Cancer, so it may or may not be an option for you. It was kind of a tough drug.. had to go to a dose restriction because of low white blood cell counts and made me tired all of the time, but am happy to say that I completed the course. Many women experience diarrhea, but I was lucky to escape that.
Currently, I get a shot of Lupron every 3 months which keeps me in a menopausal state. I have been doing this since ending radiation. I am 53 but my Oncologist does not want to take any chances of me going out of menopause, so I will likely continue this for a few years. In addition, I take a daily dose of Letrozole. This keeps my fat cells from producing any estrogen. Lots of sexual side effects and aches and pains, but overall tolerable. I have gained some weight on this drug regimen, but it is hard to say whether this is a result of normal aging and menopause or the drug combo.
In addition, I completed a series of Zometa infusions to keep my bones strong. Aromatase Inhibitors (AIs) such as Letrozole and the Lupron shots have bone thinning as a side effect, so this is a drug to mitigate that. It also has a slight benefit in preventing bone mets. Other than feeling somewhat flu like for a few days after the first infusion, I had no side effects. In fact, I was found to have Osteopenia after a year on the AI/Lupron combo and the Zometa reversed it. I will go for another bone density scan in November (I go every other year). Hopefully the trend continues. I did the Zometa every 6 months for 2 years.
Quite a drug cocktail, huh? Hope this isn't too much information for you! Keep in mind that I am almost 5 years out and this treatment has been spaced out. Overall, I feel good.
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@scaredme it is a lot of information but I’m going to write it down and mention it to my oncologist and compare it to what he has planned for me. I’m wondering when will I know my recurrence risk. I’m assuming that is determined by the oncotype score. Is that given after surgery?
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@lisat8228 I was on Tamoxifen after chemo for ER/PR positive BC. It’s a daily pill, which was easy enough except for the hot sweats and “tamoxifen rage”. Almost any little thing would set me off and I’m normally pretty chill. My poor husband though, he got the brunt of my wrath.
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Hello everyone…!
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@illimae Thanks for the heads up! Guess I better warn everyone in my house to “continue” to tread lightly… I can’t imagine my rampages being worse than it is now. Lol! On the other hand. How have you been?
@sparkledaisy Hello! How are you?0 -
@lisat8228 I’m good. Just got back from MDA for scans. Nothing to see from the neck down and nothing “new” in my brain but there are 3 tiny spots that got a bit bigger, we’re just gonna watch them for now since they’re still so small and very slow growing. I’m exhausted from the long drive, so planning next to nothing this weekend.
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@illimae I’m so glad to hear there’s nothing new from the neck down. That’s definitely a win worth holding onto. 💕 I know the long drive and all the emotions around scans can take so much out of you, so giving yourself the space to rest this weekend sounds perfect. Be gentle with yourself. you deserve every bit of peace and ease right now. Sending you prayers and lots of love that those little spots stay quiet and calm. 💪✨
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@lisat8228 Look at you! Sounding like a cancer pro. You definitely learned quickly and have really come a long way. I’m so happy to see it. Thank you for say just what I needed 🙂
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@illimae I must admit, I really have come a long way. Looking back, I wish I could hug the me from nearly three months ago because I was such a complete mess then. It’s truly an honor and a pleasure to be able to share words of encouragement, especially with you. you’ve been such a comfort to me from the very beginning of my journey. I’m so grateful for that. More than you know. Have a lovely weekend.
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@lisat8228 Thank you. I appreciate your kind words and am beyond happy that you’ve found your footing. Enjoy your weekend too and I wish you the best with taxol, it’s tough but I know you will get through it.
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You are definitely sounding like a pro with all of the terminology! Isn't it fun (in a crazy way) to know so much when you see your Oncologist? Mine actually asked me if I was from a medical background once which cracked me up.. Also, can you understand now why we like to help others through this journey? It is a sisterhood like no other. It feels so good to make it a little less scary for people at such a dark time in their lives.
As far as your question about "high risk of recurrance", mine was determined by the number of lymph nodes involved. They usually do the Oncotype to determine if chemo is needed in questionable situations. That said, they did mine anyway (not sure why), and it was a 19, so it alone did not determine that I was at high risk. They also look at tumor size and grade.. Honestly, I'm not sure what they do for those of you that did neoadjuvant chemo since the cancer may be gone before they operate... For what it's worth, here's a link to the study that was done on Verzenio.. definitely encouraging.. I'll take any help I can get to keep that risk down.. So glad that I got in on the ground floor of that one.. It is now standard of care for people in my boat..
https://www.prnewswire.com/news-releases/landmark-5-year-monarche-outcome-data-demonstrate-verzenio-abemaciclibs-long-term-impact-on-cancer-recurrence-in-high-risk-early-breast-cancer-301962737.html?fbclid=IwY2xjawNF2QVleHRuA2FlbQIxMABicmlkETFOWWRDWkN4SXFuQXNDU2k4AR4Bqk-eV0Pw91yzIeYXhAL_8WrPl8BeNVNSXA1gIonGAhS9XMvAOHuZBWI4vg_aem_xLTqalfcTKkhuIUUIYzqRQ
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Just checking in..
You start Taxol this week, right? Hoping that it is a smooth ride for you!
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