ER-, PR-, Her2+ Roll call
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Thank you! Your words are very encouraging. I am also known as Grammie to one awesome granddaughter!
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Thank you! I feel like I will be better having a plan in place. Right now, I just worry if the mass is going to just grow grow grow and get bigger until I get treatment started. My ultrasound measured it at 3.9 cm, but my surgeon said yesterday it was 2 inches wide (which is 5 cm). I just imagine it getting gigantic. Deep breaths. Woo-sah.
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My main oncologist replied to my message asking about my latest diagnostics, and it’s more reassuring news than AI spit out. It fits better with the further reading I did on scarring being a possibility.
“Your mammogram and ultrasound are reporting what is seen but it cannot tell if this is viable cancer or simply scar. Pathology will show us that. All of your cancers appear as though they have responded well to treatment.”
Together with my lab results showing my cancer antigens at first spiking and now trending back downward, I’m feeling better.
Of course now I’m overanalyzing the wording of “all your cancers.” ALL of my cancers!? She probably just meant all of my areas in my mass. I just think these pre-op activities are giving me awful “scaniexty.” 😮💨 woo-sahhhh
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I'm probably getting way ahead of myself, but…I am wondering about diets during chemo. My husband saw a nutritionist in January and I benefitted from it. He's lost just under 80 pounds and I've lost 48. I still have lots more to go, as I'm in the obese category and I still get out and walk every day, but pretty sure that might not be possible while undergoing chemo (depending on how I feel). I'm still eating healthy and cutting out as much refined sugar as possible (even my beloved flavored coffee creamer) since I read that it's not good for HER2+. Any and all suggestions, "heads up" type scenarios, etc. are greatly appreciated!
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How cool you are Grammie also! I have one grandson and one granddaughter. I don't get to see them often which makes me sad. But that's how military life is :( They are in UT and I'm in VA. I keep praying for an east coast assignment for them!
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Congrats on you and hubby’s weight loss!
I went into this so out of shape and feeling at a disadvantage because of it. Unfortunately, I didn't get much help from my nutritionists. Both the local and virtual oncology nutritionists told me to eat whatever I could, even recommending foods like puddings, pies, and milkshakes.During chemo, fresh fruit is what I crave—processed foods taste awful in flavor and texture, even breads and crackers. I’ve lost weight on chemo because my diarrhea gets so bad. I need to keep it bland or my body revolts. I also focus on replenishing my potassium because they’ve almost held chemo because of it. I pair fruit with protein, like warm nut butter on bananas or cottage cheese with strawberries. Homemade unsweetened applesauce, cherries with vanilla yogurt, and watermelon with feta are favorites. I also find roasted pumpkin soothing. Chicken stock is a staple, and my favorite tip from the nutritionist— Banatrol powder, which is banana fiber— has been a lifesaver for managing diarrhea. I eat more as I’m feeling better. I start craving salads and greens and meats about two weeks past chemo.
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Thank you for the info. I was more worried about gaining back some of what I've worked so hard to lose. I will definitely check into the Banatrol powder. I just have no idea what to expect. Hoping if I expect the worst, then it won't be that…lol. Wishful thinking, I know.
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Chemo has not been nearly as bad as I feared. The first round was my worst, I think because it was all new and I was learning what to do to get and stay ahead of side effects. Now, it’s more wearing and annoying. I’ve mainly felt weak and been achy in the arms, legs, and jaw this last round. I’m on day 4 of it.
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@beekaycro24 that is awesome that you and your husband on working on getting healthy together! I started out weighing right below the obese range. I'm with bailyboo on the weight loss during chemo. I've lost about 20. I didn't suffer from a lot of digestive issues, but lack of appetite and nothing tasted great for several days after chemo. Agree with baileyboo as well on the fresh fruit. For about a week after chemo I did better with cold things. Yogurt and fruit, boiled eggs, apple or banana with peanut butter, cereal with almond milk. Chicken and beef broth was about the only warm things I wanted. I would loose my taste and what I could taste was off. My mouth always was tender that week after as well, so hard crunchy things hurt.
I had read that soy was a no no for HER2, but I didn't know about the coffee creamer and still used mine when I could tolerate coffee. I read about a study on recurrence and while they say they need to do more studies, inflammation was a common factor in recurrences in breast cancer. My husband and I are going to try to eat less processed foods and use a lot of the Mediterranean diet rules.
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Apparently, flavored coffee creamer is not healthy (loaded with sugar and chemicals…sugar free has artificial sweeteners which I personally don't do). Both my husband and myself were in the "morbidly obese" range (40+ bmi) and are thrilled to be in the plain 'ol obese range…lol. Our goal is to get in the "overweight" category next (sounds crazy, right?) I was more worried about gaining back some of what I've worked so hard to lose. We are on a whole food diet…no processed foods, whole grain bread/rice/pasta, lots of fruit and nuts for snacks. There's really not anything we've completely cut out except chips, cookies, cakes, etc. and don't miss it. We eat something every 3-4 hours and have never felt hungry. Of course, exercise is involved, but it's just walking at least 30 minutes/day and extremely doable. I think I'm trying to prepare myself mentally for what I may or may not want to eat. I plan to do some sort of walking (even if it's just in my house) but I'm pretty sure there will be some period of not wanting to. I read that refined sugar feeds HER2+, so I'm trying to cut out as much as I can (not that I get much in my diet now). I think I'm overthinking and need to just stop and breathe.
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Hi folks! Tomorrow is surgery day and I had all of the pre-op stuff today. The radioactive clip placement wasn't as awful as I expected. Bloodwork was so-so. My platelets and some of the red blood cell counts were still a little low, and some of the red blood cell counts were high. Everything else was normal. Must all be ok for surgery as I got a call for a 7 am check in. Not looking forward to it, but ready to get it over. I've prayed that the surgeon will get clean margins and won't have to do a second one. Would appreciate prayers! Thanks!!!
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grammie - As the oldtimers on BCO always said - in your pocket.
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Oh, I’m so glad the pre-op wasn’t as bad as expected! I’ll definitely be praying for clean margins for you and that everything goes smoothly today. You’ve got this, and we’re all cheering you on. Sending lots of love and strength your way! 🙏🏼💕🦸♂️💪
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Praying for clean markers, Grammie2!!
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I've just arrived home after receiving my fourth and final dose of AC (still 4 infusions of taxotere+antibodies left) and before the nausea sets in, I wanted to say that I'm hoping the surgery goes as well as possible @grammie2. It will go perfectly! Best of luck and I wish everyone lots of courage!
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I'm going for my first appointment with my oncologist on Monday afternoon. I have NO idea what to expect. Can y'all prepare me?
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Hey! My experience - my first appointment was a "learning session". She went over my diagnosis. Specific cancer, staging, physical touch of tumor and node. Explained the treatment plan. Then the onc nurse practitioner did a chemo education that was about an hour long. Explaining the drugs, side effects and what to expect on the first treatment day. Start writing down questions you have because you won't remember them when you are meeting them. I even missed a couple I had written down LOL. I think they did blood work that day to get a baseline to compare it to during chemo. It messes with it for sure! Hope this helps!
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Hello everyone, I hope all of you are well 😊 @beekaycro24 I know it's difficult but try to relax on the weekend. Your oncologist will probably talk about your treatment plan.
In my case, I had a multidisciplinary appointment with several doctors and they talked about the chemicals I would receive at chemo and about what they expected the surgery to be like. They said right away that the tumor would likely respond well to chemotherapy and that I would probably be able to have a lumpectomy instead of a mastectomy. They also told me right away that if there was more than 1 positive lymphonode, they would remove all of them from my armpit. So wait for information like this.
Best of luck to you and try to relax!
Greetings to everyone! 🌷
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Thanks you guys! Surgery went without any hiccups. I stayed relatively calm thank the good Lord! Surgeon called hubby as she traveled to her next appt. The plan was 3 nodes (2 we knew had cancer) but he understood she took a 4th because it and #3 were kind of in a cluster. He didn't fully understand how the tracer and radioactive dye worked, so he thought #3 only showed the one for mapping, not radioactive for cancer. So I am still not sure if #1 and2 lit up or not. The tumor had shrunk and he understood that what she removed was squishy, not firm and tumor like. Meet with her on the 12th to find out biopsy report. Not sure if it will be available on my portal before then. Prayed, prayed and prayed about the results.
So far no real pain in either site. More discomfort in the armpit for sure though. I'm sure it is like a fall or accident. You won't feel it for a day or two.
Hope everyone is doing well!!!
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Good luck at your first appt!
I recorded mine and later transcribed it. I can’t tell you how many times I’ve used it and referred back to it for different things.
For me, my onc basically laid out my diagnosis and an overview of my treatment plan, discussed what to expect and talked about the ways I’d be closely monitored throughout. She dove deeper into the surgery options. She recommended her top choices for a medical oncologist and plastic surgeon for me, based on me and my case. She ordered scans to see if my cancer spread. She talked about starting chemo before surgery to shrink the tumors and improve surgery outcomes. She gave some high level details on the chemo drugs I’d likely be taking, potential side effects, and how they’d monitor progress. It was a lot of info fast. She gave me some handouts on chemo and copies of the drawings on margins she sketched out while talking to me. She introduced me to her assistant I could reach out to and my designated social worker, who each gave me more handouts. She arranged for me to do lab work and genetic testing before leaving that day.1 -
CONGRATS on finishing your AC! I hope you’re feeling ok!
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We were posting at the same time, so I missed your updates the first time around. I’m so glad to hear your surgery went smoothly, and it’s great that you’re feeling relatively comfortable so far! I hope you can get more clarity at your follow-up on the 12th. I’ll keep you in my prayers for a good biopsy report!
Take care! I hope you get lots of good rest and healing in 💕
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SO glad to hear this. You've been on my mind and in my prayers!
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Hello everyone,
@grammie2 I'm thrilled that everything went well, I wish you a great recovery 🌷
At this moment, I had less good news, I'm scared and I wanted to ask you what you think about what's happening to me: My treatment plan would be 4 doses of AC plus 4 doses of taxotere+trastuzumab+pertuzumab. The doctors always assured me that my type of cancer, although aggressive, responds very well to chemotherapy. On Wednesday I took my last dose of AC, to my delight, and I only had 4 infusions left. I received instructions for my next dose, where I will need to take steroids before, during and after the infusion. So far so good.
Yesterday I decided to go to my hospital portal, and I was surprised when I saw that I have many more chemotherapy sessions scheduled! I was devastated... I still haven't been contacted to find out what happened. I know I did more blood tests on wednesday (probably for tumor markers, I don't have access to test results), did the AC not work? Do you know of any similar cases? I'm sorry for writing so much, but I'm really scared right now... And I only want to know if this is a normal procedure…
Thank you in advance!
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@catarina_fm so sorry you are getting mixed instructions on treatment plans. I can't speak specifically on your case as I didn't do the AC first, started with the TCHP X6 every three weeks. I guess what you are seeing doesn't say if the extra treatments are AC or THP? Could the visits be for fluids? While getting TCHP, I would go in between chemo treatments for fluids and anything that was low (for me it was magnesium). I don't remember having bloodwork for tumor markers during treatment, only bloodwork for checking what chemo might be messing with. And btw, my herceptin and perjeta were given in one shot in the thigh (Phesgo). (pertuzumab/trastuzumab) I hope you get clarification soon!! Keep us posted and try not to worry!!
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@bailey.boo I'm curious if you have purchased a compression sleeve yet and if so, where from. I should start radiation in a few weeks and want to purchase one.
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Ok yall, help! My pathology study is back from surgery. Praise the Lord, the breast tumor and nodes are clear and negative for cancer!!! Surgeon said she removed 4 nodes and the study states clearly that 3 nodes tested negative for cancer. However, the one node that was RFID marked shows the specimen didn't contain a true lymph node!!!??? Say what??? Here is a copy and paste of what it says:
5. The specimen is received in formalin labeled with Carol Sutphin and left RFID positive node and consists of a 3.5 x 2.5 x 1.0 cm portion of adipose containing an RFID clip. A true lymph node is not identified
Going to call the surgeon's office when they open, but doubt she has had time to review yet. Anyone have thoughts? This is the node that was marked during my first biopsy back in March and then RFID chipped the day before surgery. Did the surgeon miss the actual node? Or what they thought was a node is actually another "lump"?? I hope this doesn't mean another surgery! Ugh!
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@grammie2 thank you for calming me down about my situation, it looks like it was a mistake after all and my sessions will continue as initially planned! What a big scare I got!
As for your case, my opinion is that you should never have had a marked nodule, but rather a portion of adipose tissue. In my case, the doctors did 3 biopsies on 3 different supposed lymph nodes, but when I received the results, only 2 were nodes (positive) and 1 of them was just breast tissue (negative). Sometimes on ultrasounds, it is not possible to clearly understand whether lymph nodes or other types of tissue are being seen.I think it's good news and I'm very happy that you have negative margins! 🤩
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@catarina_fm great news for you!!!!
So what is weird is that the first marker was put in at my first biopsy. Which that node tested positive. The RFID was placed near the first marker and the area removed at the RFID site was pretty large, like the size of large grape. I will be glad to get some clarification from the surgeon!
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@grammie2 it looks like the lymph node disappeared? What type of biopsy did you do? I read somewhere that sometimes lymph nodes can be completely aspirated during the biopsy. I know they inserted a marker, but... Keep us posted!
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