ER-, PR-, Her2+ Roll call
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@bailey.boo I had THE best sleep last night and felt so amazing this morning, until about 9:30 when the diarrhea hit. Now, I'm just sluggish. I'm bloated. I had planned to get out and take a very short walk, but that idea went down the drain. I've eaten. I've napped. I'm watching one of my favorite comedy movies, What About Bob?, hoping to feel better. Nothing tastes good. The first few bites are good, but then it goes downhill from there. Hubby said he'd get me anything I wanted to eat, but if I'm gonna eat some non-healthy food then I want to taste it…lol! I might as well eat the "good for me" stuff and know I'm getting nutrition. I'm taking Zofran around the clock, not sure how long I'm supposed to but am keeping at it until I don't feel nauseous when it's time for my next dose. I'm achy from the Udenyca shot, taking Claritin. I don't mind these aches. I know I'm making some white blood cells and just imagine them all attacking Lumpy Dumpy like a ninja! Take that, cancer!!
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@bailey.boo glad you had a good weekend! Time to rest up!! My weekend trip is next weekend. I get Phesgo next Thursday. I'm wondering how my body will react to it as well without the nausea meds which causes constipation. I didn't have diarrhea issues during chemo. Maybe a day (day 6 or 7 post chemo) of it but Immodium usually worked pretty quickly. My onc assured me that if I had any issues we would switch to just Herceptin.
My bloodwork was not perfect before surgery. Blood counts still below normal but not by much. Protein was the big thing the surgeon wanted me to eat and I have a hard time with meat still. So tried eating peanut butter, eggs, beans as much as I can. Glad they gave you the stuff to help boost your system!
I too hope that you will achieve PCR. I know it was a relief and answered prayer when I read my pathology report after surgery.
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@beekaycro24 praying you feel better and can eat!! I know how hard it is to find foods that tastes good! For me it was cold and sweet. I did a lot of fruit, yogurt, cereal, boiled eggs and peanut butter the week after chemo. And that is a great way to look at the SE's! Kicking cancer in the bootie!
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@aborayis good, I wish I was already at that stage 😊 Port bothers me a lot, it's so visible on me, even the tube that connects to the jugular is very prominent. I can only wear clothes that are very tight around my neck to cover everything, otherwise people will stare.
@bailey.boo sorry, I think I'm a little lost in the conversation, but what is the reason for you having to have a double mastectomy? You've probably already explained it, but I don't remember reading it. The doctors said that in my case they hope I would only need a lumpectomy, but they'll only know for sure during the surgery because sometimes you plan something but only during it do you know your real condition. I also took genetic tests because my cancer is early-onset but I don't know the results yet (I won't know until December). I don't know if this will change anything either. I have a friend a little older than me who is taking kadycla because she didn't have pCR but she says she hasn't had any side effects yet (she's already had 3 infusions) and that her hair is growing normally since the TCHP ended. Looks like Kadycla isn't that bad! Anyway, I hope we only have to take Phesgo.
@beekaycro24 I have always managed to eat during AC treatments, despite feeling sick. I had no problems with the taste of the food changing. However, I got sick of several smells. Shower gel, dishwashing liquid, bleach, face cream. But I really got sick of these smells to the point that I had to change products and use unscented ones! I hope that with TCHP I won't start to get sick of food too, otherwise I'm already imagining that I'll lose even more weight. How do you feel now? I hope you are better now and that your diarrhea has calmed down!
Take care! 💐
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I've discovered very bland foods are working for me…plain, white rice, oatmeal, peanut butter, pasta, and chicken. Nothing tastes great, but for some reason I'm mentally satisfied with the plain food. These also helped my bloating issues. OMG - I told my husband I felt like if someone stuck me with a pin, I'd fly around the room like a busted balloon…lol. I'm sleeping great, so that's a plus. I'm hoping I'll feel a little more normal after a shower today and I am determined to be outside in the fresh air….even if it's just sitting down. I'm still low energy and high naps, but hubs is taking the best care of me. I pray you all have a fantastic week!
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I, too, could only tolerate very bland foods during chemo. After a few treatments everything tasted very salty to me. I had a terrible time staying hydrated and I found a drink powder called drip drops would help me with dehydration.
I dont see many posting about their experience with immunotherapy (just perjeta and herceptin) but Im having some “minor” side effects from that as well. I am THAT patient…this time (5th infusion) I have been extremely tired. It has been a year for sure!!!
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@djschmidt1 I thought the Herceptin and Perjeta were the immunotherapy drugs. idk…I'm so new to this. It's a lot to take in and remember. I hope your side effects decrease!
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@beekaycro24 Herceptin and Perjeta are targeted therapy, meaning they target HER2 cells. I found all of it very confusing too!!
@djschmidt1 did you find that you had similar SE's with Phesgo alone than when you were getting it with chemo? I'm wondering if some of the extra drugs received during chemo (nausea/benedryl/steroids) kept me from having some of the Perjeta SE's (I only had mild D maybe one day after each treatment). I get my first stand alone Phesgo this Thursday and we are going out of town for the weekend. A little concerned about how the SE's will be.
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I’m also super curious to hear about SEs from phesgo alone!
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@bailey.boo I’m so glad you were able to get advice and recommendations from an oncology nutrition specialist. That’s amazing. I hope you like those shakes as much as I did. I drank them a lot when my tummy was picky during treatment and I thought they were freaking delicious. I LOLed when I read what you wrote about how getting up and going out made you feel good to be amongst the living. So so very relatable! I know EXACTLY what you mean.
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Hi all, if phesgo is the shot of combined drugs, im not getting that. I’m having an infusion every three weeks of just the two drugs plus benadryl.
The first two infusions I had slight nausea and diarrhea a few days after. Ive had 5 now and the 3&4th i had just slight “urgent” bathroom needs…this last time I got really tired. It’s a mixed bag really. To add to that, I notice certain foods just don’t work for me anymore but I can’t isolate all of them yet. Tomatoes seem to not work. Not sure if thats chemo changes to my body or what. It’s not nearly as taxing as chemo but I'm clearly not myself. I tried to get back to walking and I completely ran my self down just after walking twice. I guess I have to be gentle with myself.
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@djschmidt1 Phesgo is the shot with Herceptin and Perjeta. I'm glad you mentioned the benadryl. I got that at every chemo treatment and it makes me so sleepy!!!
Yes, be easy on yourself! I'm the same about tiring easily. Each week post chemo does get better though. Just in time to start targeted therapy and radiation LOL.
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Still feeling great, except I now have thrush. Boo. My onc is calling in magic mouthwash and nystatin. And here I was so thrilled I actually went for a 30 minute walk today. It's always something, right?
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@beekaycro24 hope the magic mouthwash helped! I had mouth sores with my first treatment and my onc gave me a prescription for it and it was wonderful! I didn't have any mouth issues with the next 5 either.
Met with my onc today and she walked in the room smiling ear to ear. She was so happy about my complete response to chemo. She said my surgeon called her over the weekend after the pathology report came in. She said she couldn't wait until Monday to tell her. I was so overwhelmed and grateful to hear her tell me about their conversation. I really felt like I mattered to them, not just a number.
She didn't start Phesgo today, she wants to wait until 4 weeks post surgery which is next week. She has to get it approved with my insurance. But she brought up getting the radiologist scheduled now and mentioned that there have been exciting discussions regarding whether radiation is needed when PCR is achieved. She said it would be my radiologists call of course. Anyone heard this from their radiologist? My surgeon mentioned it but wasn't sure where all of it stood right now because she is not really in on those discussions. I would love to bypass radiation, but I want to do whatever to keep this crap away and never coming back!!
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@grammie2 Tears of joy for you and your wonderful news! I'm doing a happy dance!!Yes, the Magic Mouthwash is helping. I ate supper and actually tasted my food! I Googled (I know) and apparently thrush also causes bloating if it gets in your intestinal tract, and apparently mine did. I've felt like something was stuck in my throat from day one of chemo. Wasn't sure if it was something they did while I was getting the port implanted or if it would pass. Well, also a sympton of thrush in your esophagus. Sounds gross, I know. I apologize for any mental pictures. Anyway, all issues have already cleared up. I'll still do the mouthwash for five full days, and I'm also using Nystatin and will continue that for 14 days.
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@grammie2 yay on a PCR! With my PCR in May, my radiologist didn’t cancel radiation completely but I only had to do 20 treatments instead. That was enough lol. I’m so happy for you. ❤️
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@djschmidt1 @beekaycro24 Thanks ladies!!! I am so thankful! And @djschmidt1 good to know on what your radiologist suggested. I think protocol for node involvement is usually 30. So I hope mine at least suggests 20 instead of 30.
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Hi everyone! 💐
@grammie2 I was so happy to hear your news! 😍Achieving a PCR is so wonderful! As for radiotherapy, I also don't know what the best option will be, from what I've read, when there are affected lymph nodes they normally do it, but things may have changed in the meantime. New scientific articles are always coming out, and now there is also much more thought about the patient's comfort when there are no statistically significant differences between undergoing another treatment or not. Then tell us what the decision was!
@beekaycro24 I'm glad you're already out walking! Very good. And exercise is an excellent anti-inflammatory 😉 As for the oral part, I have managed to escape problems just by rinsing with water, salt and bicarbonate of soda. I do this every time I eat something and so far it has worked. Good luck! Now you will see that you start to feel better and better.
As for me, on Tuesday I went to the hospital to take Phesgo (they gave me the choice between taking Phesgo or taking the antibodies separately intravenously). I chose phesgo because it was faster. Yesterday I went for the docetaxel infusion. Surprisingly, I feel great today! Of course I already know that it will get worse, tomorrow I will no longer take steroids and I will probably start to feel side effects. Additionally, starting today and for 5 days, I will have to administer zarzio injections to myself (they may not have the same name there but it is Filgrastim). Here it is mandatory to administer this drug for 5 days after docetaxel. I hope I can inject myself!
Take care, all of you!
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@catarina_fm thank you! I feel so blessed!!
I am curious what the radiologist will suggest. I'm hoping that like @djschmidt1 it will be a reduced number of treatments. I will let everyone know the schedule once I meet with him.
I did Phesgo as well. But I was given the shot on the same day as chemo which was nice. I think Filgrastim must be similar to Neulasta. The Neulasta I received was to be given 15 hours (I think that's what it was) after chemo. Last thing on chemo day, they would place a port on my arm or stomach with tape that would inject the Neulasta over about 40 minutes. The port had lights and alarms that let you know it was still placed properly, when it starts the injection and when completed. It was nice not having to go back to the cancer center to receive the dose.
I'm so happy you are feeling well and pray it continues.
Happy Friday everyone!!! We are windy, rainy and nasty from Hurricane Helene. Getting the outskirts of the storm so not horrible, but still a little dangerous. We've had so much rain the previous few days and the ground is full. Trees will topple and rising creeks, ponds and rivers will be an issue along with power outages. Anyone else in the path of this storm? @beekaycro24 ? You are in GA, right?
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Yes, in Georgia. We had a tree take out a power pole down the road yesterday morning. Crews worked all day and power was restored last night. We have a generator with it's own propane tank, so we only saw a minute or so of disruption. Woke up to it running this morning. They say trees are down everywhere and roads near creeks and rivers are flooding. We haven't ventured out yet. The storm is all finished here. Hope all who are in it's path stay safe!
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oh, i forgot to mention I was/ am node negative.
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@aborayis hi all! Just catching up on all the updates! Love reading about you all as your perseverance inspires!
Re nipple tattoo recovery, not much to do with that other than rinsing the area w water 3-4x a day for first couple days and applying an ointment think for 1 week. I had slight discomfort during the tattooing but after that I felt fine. I think you could travel around that time - no problem. Enjoy your girls weekend!
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Grammie - I had PCR after chemo. Once the surgery was done, I still had radiation since - as someone mentioned - there were lymph nodes affected. I wanted to do everything to try to make sure it would never come back again
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Wishing all of you in active treatment the best of outcomes.
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Hi everyone! Checking in. It’s my Surgery Eve.
@grammie2, YAY!!!!!! I’m so happy you’re all clear 💕💃🏻 Congrats on your PCR! I hope you celebrated! Did you still take your trip? We did okay with Helene here in Lakeland— some strong wind, some hard rain, but overall okay! Other than our retention pond filling more— we’re never going to get rid of those little gators that moved in during Beryl, at this rate!
@beekaycro24, I’m glad the magic mouthwash is working for you! I used alcohol-free “TheraBreath Fresh Breath Mouthwash” from Amazon and, when that ran out, Melaleuca’s cinnamon clove mouthwash. Both worked well for me. I had some moderate thrush at first. It stayed very mild once I started staying on top of it and gargling religiously.
@catarina_fm, I’m so glad you’re feeling better than you expected and hope it stays just that way! How is it going giving yourself the zarzio injections?
Today, I had my final pre-op appointments. First, I saw my plastic surgeon, who marked my breasts for surgery. My fun fact of the day is they signed initials at the top of each breast to mark my consent. Which brings me to my tip of the day: Don’t wear a sweetheart neckline top to your markings appointment unless you want to go home and change between appointments, or flash twin initials and markings to everyone you pass by! Later, I went to the imaging center, and they injected a radioactive tracer to help locate the sentinel lymph node for surgery. They said this helps the surgeons find the first lymph node that cancer might spread to. Tomorrow is feeling very real now. 😬 I go in at 5AM. Please send some prayers and positive vibes my way!
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@bailey.boo prayers for an easy surgery tomorrow and quick recovery afterward. ❤️❤️
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@bailey.boo SO excited for you. I will pray for calm and comfort for you!
Apparently, my thrush wasn't just thrush but mucositis. Chemo killed all of my good mucous in not only my mouth but entire GI tract. So…that's been my issues. The treatment is still the same - Nystatin and Magic Mouthwash and I feel so much better after being able to swallow easily. But dang! I can't taste…even water is tasting weird. I'm forcing myself to eat and am sticking to softer, bland foods. It is so weird to smell the deliciousness, but not taste it. My mouth always taste like salt and my saliva is kinda bubbly. We've been joking that the chemo has made me radioactive and now I'm rabid as well, since it looks like I'm foaming at the mouth. lol Ya gotta keep your sense of humor, right?
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@bailey.boo Praying for you and your care team! And thankful you are good after the storm! We did not get to go to Asheville for the weekend. Asheville NC was hit pretty badly from Helene as well as all of western NC. There were no open roads getting into or out of Asheville! Interstates or otherwise. It has been heartbreaking watching coverage of all of those areas that were damaged from FL south!
@beekaycro24 oh no on the mucositis!!
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Hello girls! I've been wondering how you are after the storm (hurricane? tornado? I never know), it's been on the news in Europe but I've seen that you're fine, luckily!
@beekaycro24 After having gone through all the AC chemo without mucositis, this time it also attacked me... I'm taking nystatin and rinsing with a specific solution, let's see if it improves. Yesterday it was really hurting me to swallow food. And I also don't taste anything, which hasn't happened to me before. On top of that, I've been bleeding a lot from my nose. And you, are you better now?
@bailey.boo I'm rooting for you so much! Everything will be fine, another phase towards healing! Praying for you and hoping to hear from you soon!
As for me, although I was not too fond of the ac chemo, because it left me completely knocked out and VERY nauseous, the taxane+antibodies+zarzio (same as neulasta) is not being easy either. I don't feel sick but I also can't eat well because of the pain in my mouth and because the food has no flavor. I've been able to administer the injections to myself (I hate it!) but I had so much bone pain in the first few days that I cried. It was awful. Paracetamol helped somewhat, but I should have started taking it sooner. Today is the last zarzio injection but I can't help but think that I still have 15 more to go (5 for each infusion I need). The road is long, but you give me hope. It will pass!
Take care! 🌻
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