ER-, PR-, Her2+ Roll call
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hey! Not yet. I have a cheaper one from Amazon that I bought to wear with my ice mitts, way back when, but I have no clue if it’s the correct size. The PT I visited suggested I get a referral from her to be properly measured. She gave me a few online resources, should I go that route, and I remember one of them was lymphadivas, because I looked it up and they had fun tattoo sleeve designs 😃 But they were pricier. I need to find my notes and share the others.
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I just had my first appointment with my oncologist. IDC, ER-/PR-/HER 2+,stage 2, grade 2. I go for an echocardiogram on Friday, port placement on Monday, and my first of six TCHP infusions on Thursday, then every 21 days. Lumpectomy to follow and at least HP meds for the next year. I'm much calmer with a plan in place. :)
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@beekaycro24 I’m so glad you have some answers and a clear plan. It definitely brought me a sense of control to the situation. It feels easier to face what’s ahead when you know what steps to expect!
@grammie2 How are you feeling??
So my pre-op ECG results came back abnormal 😬 I’m still waiting to hear what my onc has to say about it. It showed sinus tachycardia, ST/T-wave abnormalities, and a slightly prolonged QT interval. I’m trying not to dig too far down a rabbit hole, but it doesn’t seem overly serious and could all be temporary chemo side effects. But will it delay surgery? That’s what worries me.
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@bailey.boo I'm feeling pretty good. Went back into the office today. I haven't had a lot of pain, just some discomfort when moving. Lots of bruising! My boob looks like it's been in a battle LOL. Armpit doesn't look too bad.
Not sure on the EKG question. Did you have one before the port? If so, does it show a comparison? I was able to have my surgery on the one I did before port placement and I had just had my ECHO which has some readings included. I know you are anxious to not wait for surgery and I get that! Keep us posted!!
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Glad you are doing better!! It is easier with a game plan!! Glad they have everything lined up!!
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Just curious…could be me overthinking again. I'm getting plenty of sleep right now (more than my normal 6 hours or so), yet I feel tired. Is this normal? Also, I'm anxious again. I will admit, I am extremely nervous for the CT scan. Not for the scan itself, but the results. I know it's out of my hands, but I just don't want this to have moved to other parts of my body. I know, NOBODY wants that. Like I said, overthinking much? I'm usually a go-with-the-flow kinda person, but this has me worried. I am so ready to just get chemo started so I know something is attacking 'ol Lumpy Dumpy (I named my mass). And what is wrong with me that I'm looking forward to chemo? JEEZ! I'm just questioning everything these days. Anywho, thanks for letting me vent.
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@beekaycro24 you get to vent here and it's wonderful! I've done it many times LOL. And it so helpful! It's very hard to handle the unknown! I was the same way with my PET and breast MRI. I prayed and prayed that the diagnosis would not get any worse because it was already bad enough. You are not overthinking any more than most of us did at your stage in the game.
As far as being tired, I think cancer could play a part in that, but honestly I think it is coming from the mental exhaustion. I know it did for me. Sometimes we don't realize how our bodies react to stress and being anxious (which is all a normal process of this journey).
And for wanting chemo to start….I think we all do/did. It is what we can do to stop the cancer and get rid of it. Until chemo starts, it's all tests and staging. With chemo, we are actively doing something to become well!
Hang in there!!! I went through several emotional days and still am. I see my surgeon tomorrow for follow-up and pathology review. Praying there is not something bad that I did not understand in reading it. Hugs to you and all!!!
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Hello everybody,
I’m sorry to have been away for so long. I’ve been struggling with my energy level while we try to get my thyroid under control. Hello to those who have joined in more recently. I’ve missed being here and it’s been so good to read through what I’ve missed and catch up on everyone’s stories.
@grammie2 big giant yay! It sounds like you had a complete response! I’m not sure either what to make of your lymph node mystery. Good luck tomorrow with your follow up meeting and I’m getting clarity with everything.@beekaycro24 I agree with everything said before. What you’re feeling is totally normal. You don’t want things to progress, you don’t want worse news and you want to get going with getting this cancer gone from your body! This part is hard to go through. Once you all is known and you have your plan and get it started that will feel better.
@catarina_fm I’m so glad the AC is behind you AND the treatment plan is as is. I found understanding what I was getting exactly and for how long to a while for me to know, too. It’s can be so anxiety provoking.
@bailey.boo Did you get feedback about your ECG? This happened to me more than once. But it was never an issue and the answer I was given was , oh, those things are nothing and come up all the time, and are like false positives. Once, for the pre op EKG before my implants placement my EKG came back that I had had a heart attack at some point. I nearly had an actual heart attack when I saw that. And I got the same answer as I wrote. I bet it will be the same for you. Keep us posted. When is your surgery going to be?
As for me, I finished the whole year of chemo and targeted therapy a few weeks ago, and rang the bell. Done! Wow, does that feel good and a little worrisome. Now I have to get my port out. My thyroid is calming down finally. And I got nipple reconstruction this morning. It was an office procedure! Didn’t really feel anything although I’m a little uncomfortable now. Nothing like the previous surgeries. I would say it was a little cool, a wee gross, kinda pleasant and a bit strange. My plastic surgeon said, “I love doing these because you’re awake and we can chat and catch up!” And so we did for the next few hours. Lol! I got to see that he had made what did look like nipples out of some of the breast skin before he packed them in gauze where they will remain to heal over the next 3 weeks.2 -
Hi ladies, if you have Instagram this is a very accurate post by a great breast oncologist I follow of the link doesnt work her name is drteplinsky.
https://www.instagram.com/reel/C_zBBBCgbPX/?igsh=MmV3YjlidDB4OG1w
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hi everyone! Happy Friday! ☀️
@beekaycro24 There’s something about breast cancer. I get huge spikes of anxiety over the breast cancer spreading, and I’ve never felt anything like this with the thyroid cancer I had in 2010. Isn’t that bizarre? I haven’t figured it out yet…. Maybe because everyone (doctors included) told me “Oh, you’re lucky! That’s the easy cancer! If you have to get cancer, that’s the one you want! That’s the one to have!” Did you have your CT scan yet? I hope it goes great! 🙏🏼
I found out my exhaustion is because I’m anemic right now. And my RBC-related counts are still low. (Yesterday, I had my pre-op bloodwork done and my PCP granted clearance for my 10/1 surgery! You were totally right about the ECG, @aborayis!) Waiting to see if I can take some heme and carbonyl iron supplements. Ferrous sulfate has always been rough on my stomach, and my stomach is touch-and-go behaving right now!
@aborayis CONGRATS on finishing chemo and ringing that bell! 🎉🙌 I’m so glad to hear your nipple recon was all good, and I hope your new ones heal great! It takes time to get the thyroid meds right— hormones are delicate little things that get knocked out of whack so easily but are so hard to get and keep back in line— so that’s awesome things are finally leveling out.
Hope you’re feeling good, @grammie2!
@djschmidt1 I saved that post and am now following her too— thank you! I feel so far away from normal, and I’m sure that doesn’t ever go completely away. (I’m under mitchalisa on insta, if you or anyone ever wants to connect.)I’m about 2.5 weeks away from surgery now. I had to trade in my nearly 10-yr old baby and ended up with taking home a pink Jeep the other day. I’ve wanted one since I was a little girl. It feels good to be not practical in the least 😊
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Thanks all for the calming words! I did my ECG this afternoon and from what I (and Google) can make out from the results is my heart is good. I'm getting my port placement Monday morning at 7:00. I expect no problems from that procedure. Tuesday is my free day, Wednesday is Chest CT scan day, and Thursday my first infusion. I plan to do absolutely nothing this weekend but chill and try to stay calm and relaxed.
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@bailey.boo Congrats on getting your green light for 10/1! We’ll all be cheering you on and wishing for things to all go your way!
@djschmidt1 Thanks for the link to the IG post. She’s so great! I started following her. And I can completely relate to calling your car your baby. You get attached! And also Wow! A pink jeep. That just sounds SO FUN!!
@beekaycro24 I’m glad you’re about to get treatment underway. Good luck with your port placement. I remember it took a little time to find the right sleep position while recovering from the procedure. But then after a while, you really don’t feel it. I had a little reaction to tension from the bandage on my skin… got a few bubbles, but it wasn’t painful and went away with some time. You sound like you’ve got the right perspective for your infusion day!
@grammie2 how are you feeling and how did your follow up go?
I have to say that I really love how active this thread has become! It’s so great to know all of you are hovering around with so much support! Would anybody else be interested in a group zoom meetup for all of us here in the Her-2+ club? I sure would like to see all your faces and have a chance to hang and chat. I’m thinking maybe the mods could help us set one up through this site, or I could set us up through my Zoom account.
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@beekaycro24 GOOD LUCK this week coming up! It’s a big one! I know, for me, it felt so good to finally get started actively fighting the good fight. I hope everything is quick and easy 💕🙏🏼🎀
@aborayis Count me in for any Zoom calls! The pink Jeep made it into pictures today— I went to our local breast cancer foundation’s home base to help get things together for upcoming events. It stinks that I’ll be laid up for most of October’s festivities, but I’ll do all the things next year. P.S.- The lady on the left has a book coming out Oct. 1st, titled “Titty Tales.” I’ll definitely be at least reading that during my down time!
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@bailey.boo Ahhhhh! It’s YOUR pink jeep! Sorry for mixing that up. She’s beautiful! And so are you! 💕
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No port placement today. There was a water leak in the procedure room over the weekend, that they discovered when going in this morning. We waited for maintenance to come in for repair, but the guys said it would take over two hours. We rescheduled for tomorrow. ARRGGHH!! I'm sure this won't be my first hiccup throughout this process. It is what it is and will be what it's gonna be. :)
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Just got a call…no port placement tomorrow either. I will get it at 7:00 am on Thursday, go upstairs (same building) for lab work at 8:30, oncologist appointment at 9:00, and chemo at 9:30. I already planned to stay in the city of my appointments on Wednesday night because my chest CT scan is at 3:45 on Wednesday afternoon and my onc appt was so early on Thursday. I live in the mountains of NE Georgia in the tippy top corner. I'm getting treatments in Gainesville, which is about an hour and fifteen minutes away. Normally, I don't mind driving each way, but I figured it would be a good idea to be as rested as possible. I'm starting to wonder if God doesn't want me to get chemo. I mean, if something goes wrong is He gonna be like…I tried to stop you! Ahhh, gotta just sit and breathe now.
:)
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@beekaycro24 oh my goodness! How frustrating! I am just like you as far as traveling to appointments. I'm in a small town in Southwest Virginia! All of my appointments are about an hour away. Radiation is going to be another 20 minutes.
If God doesn't want you to get chemo, you won't get chemo LOL. I'm amazed that they will do all of that on Thursday right after the port placement. You are getting whammied haha! Praying that all will go well and smooth! Keep us updated!!!
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@bailey.boo your jeep is so pretty!!! And you look great!! It is so cool that you got involved in local cancer groups. I know I need to, but I live in a small town and would have to drive about an hour each way. With all of the running for appointments, I just didn't try. That is one reason I'm so thankful for this group!
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Ugggh! I’m so sorry! I hope everything on Thursday goes great for you. That’s a lot at once to mentally prepare for, but it will be one and done, and then you can rest. I’ve heard of a few people getting the port and chemo on the same day or very close together. Praying everything works out just right! 🙏🏼💖
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Thanks, Grammie! There wasn’t any organization in my local area until a couple of years ago. It’s one woman— a survivor herself— doing it all. She’s pretty amazing, and it’s just taking off, so you can’t help but be inspired and want to help too. It’s also nice to finally meet women in my area and socialize… although I’m sure there are much easier ways! 😁
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Hello everyone!
How are you? I'm enjoying these days when I feel good, before the next chemo. I'm going to start TCHP and I just hope I don't have as much nausea as I did with AC. By the way, I have 2 questions for yo:. I'm supposed to have a lumpectomy. Is it always necessary to have breast reconstruction afterwards? Or are there cases where it is not necessary? I think it depends on the volume that will be removed during surgery.
Another question about TCHP. Here they force you to take steroids the day before chemo, the day of chemo and the day after. I understand that. Furthermore, I will have to take injections to stimulate the bone marrow, it is mandatory. I don't know what injections they are, has anyone had something like this?
@grammie2 how is your recovery going?
@bailey.boo you are looking great! and your jeep is amazing! I have a traditional green one but I confess that this one has much more style 😍
@beekaycro24 I have something to tell you... they put me in the port the day before chemo and it was horrible because they had to poke several times me and I was very swollen, it took 4 attempts. At the time, the nurse told me that it would be easier if they had placed the port on the same day! It still won't be as swollen and you'll still have some of the anesthesia effect. It's better for you! Don't worry, the port bothered me for a few days but I didn't even have to take pain medication. Then you don't even remember you have it. Good luck for chemo! My first treatment was by far the worst, because I was so scared of the side effects. There are bad days, but then they pass and you can have a period of time where you feel good. Good luck at the start of the fight.
Greetings!
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Thank you! I Googled right away to see if there would be any issues of same day install and chemo and found none. I even told my husband that hopefully the numbing medicine will stay active for a bit while getting my chemo treatment. Your words on that are very encouraging! I will also be taking a steroid the day before, day of, and day after chemo with my TCHP. It's a white blood cell booster. My onc mentioned it would be in either pill or shot form, but he didn't mention doing both. He said it depended on which one insurance would pay for. Right now, it's pill form. I am more nervous on the outcome of the CT scan right now. I've got to stay off of Google. I hope it works out that I worried for nothing. I have no symptoms of my cancer metastising elsewhere, but symptoms don't always show up. I'm in the irrational phase of every little twinge and my mind goes "It's the cancer! It's spreading!" I keep telling myself to chill and calm down, but it's still there in the back of my mind. I really hope to lose this feeling, but feel like I probably won't. Which is crazy in itself. I'm not a worrier. Never have been. Until now. And it's weird. And I don't like it. At all.
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@catarina_fm praying that TCHP will be easier!! I had a lumpectomy almost 2 weeks ago. There was no mention of reconstruction. They took out an area a little larger than the size of prune. I still have a little swelling, but when that goes down, I'm sure you will be able to see that that breast is smaller. Mine was taken out at the 3 o'clock position (side and near arm).
I bet the bone marrow injection is for immune building (white blood cells). I had never heard it called that. They would put a disposable port on my arm that would inject Neulasta 27 hours after chemo. It has a timer and a green blinking light. It starts beeping when it is ready to inject the drug in your arm (or stomach whichever you prefer). It beeps again when done and it has a "full and empty" bar so you know it released the meds. I also got steroids, a schizophrenia drug that works on the part of brain that blocks nausea that I took pill form. Day of chemo, they would give me (via of port) benedryl, anti nausea meds, T and C and then an injection in the top of the thigh with H and P. Lastly they placed the Neulasta port.
@beekaycro24 I'm glad catarina could give you info on the port! Mine was placed a couple of weeks prior to chemo. The only trouble I had after placement was finding a comfortable sleeping position.
Hugs to all!!!!
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Question for all. Does anyone have a "foods to avoid" list specifically for HER2+? I've heard to avoid soy and of course sugar. My husband and I are thinking of doing Mediterranean type diet, but basically more whole food and less processed. I've lost about 20lbs since my diagnosis and can stand to loose a few more LOL. Hubby wants to loose a bit as well. Thanks !
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Thank you @grammie2! My breasts are small but I hope reconstruction is not necessary. Nobody told me about this; my mass was huge and at this moment I feel like it has already reduced by more than half. I think this is good news!
Yes, that was the name, neulasta, that the nurse said! I understand now what it's for. I think I'll have to bring home injections and administer them myself for a few days, I don't know how many. In the next session I will be clarified about the details. In Portugal, treatments and medication are free and we do not have the right to choose. I don't complain because the treatments are as good and modern as possible, but sometimes there is a lack of clarification about medications and I feel lost!
Next week, I go to the hospital 2 days in a row (I also live 1 hour away from it!). On the first day they will administer herceptin and pertuzumab. As it's the first time, I'll take it separately to see if I'm not allergic. The next day I'm going to have taxotere. And for the next times they will give me everything together.
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@catarina_fm it's so hard to remember everything they tell us! I bet it's beautiful in Portugal!
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@grammie2 Not an avoid list, but hubby went to a nutritionist in January. She put him on an 1800 calorie/day plan. We cut out processed foods (completely emptied my pantry…lol), and eat fresh fruits and vegs, chicken/turkey, whole grain pasta/rice/bread, we even have potatoes (not fried but roasted/baked, russet or sweet - 1 C is a serving), drink lots of water, and exercise a minimum of 15 minutes per day. Our exercise is walking and we've upped it to 30 minutes. Sometimes we walk fast, sometimes slow. It's not a distance thing, but time thing. We actually eat more on our plan than before. Even though we were allowed a night time snack, we've never eaten it because we weren't hungry. Eat something every three hours (serving of fruit, nuts, vegs). Don't eat anything at least three hours before bed. Portion control is the biggest thing. Watch for added sugars. We also measure and weigh everything…4 oz of chicken with supper, salad dressings, etc. About the only things we have completely cut out are sweets (bye, Little Debbie) and chips. I was never a big soda drinker, but hubby loved his Sprite Zero. He completely cut those out as well. Since January 25th, he's lost 81 pounds and I've lost 54. It's a complete lifestyle change as far as eating out. We just make sure we stay away from fries (I miss CFA's waffle fries) and recognize when you're hungry and not just bored, and when you're full…stop eating no matter how delicious it is.
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@grammie2 I was told to avoid sugar and processed foods. What the doctor told me was that soy is not related to this type of cancer, only to cancers with hormone receptors. I prefer not to eat soy anyway!
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@grammie2 Portugal has good beaches and great beautiful islands (Azores). You are invited to come and see 😁 One of my dreams is to visit the natural parks in the USA, perhaps one day!
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