ER-, PR-, Her2+ Roll call
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@grammie2 Yes to the mouthwash. For me, it's mostly the mucositis/thrush…I don't really have a sore mouth or mouth sores. I'm more upset about my taste. I told the hubs this morning I am going to gain so much weight when I can taste again because I'm gonna eat ALL the good foods…lol! I'm sticking with the healthy stuff right now. No sense in eating the really goodgood-tasting stuff that's bad for you when you can't even taste it. I'm really wanting some pizza, but bread/crust is yuck to me right now. It just tastes like goo. I will admit, a local store bakes and sells banana bread that is so yummy and I can taste that, so I've been keeping it on hand. Is it wrong of me to start planning my "Hallelujah, I got my taste buds back!" meal already? So many things to choose from…steak, pasta, bbq….ahhh so many choices!
On a side note, my leg swelling went down. I just needed to move around more. I'm definitely investing in some compression socks and sleeves when I go to the store today. Y'all enjoy your extra hour today!
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Hi everyone! 💐
@aborayis sorry, I hope it's easy to solve! It must be really annoying to have something like this happen, although it's not serious, it could lead to extra surgery 😔
@grammie2 I'm glad you packed so many shoeboxes! how wonderful 😊 I'm very relieved that it's a seroma! I hope you can do the radiation anyway. Seromas are quite common, so doctors are used to them and will know what to do.
@beekaycro24 swollen legs are annoying, but you can always try wearing knee-high compression socks to help. Walking and keeping your legs elevated also seem like great ideas. I'm sorry you still have mucositis. I saw my MO last week and apparently what I have is not mucositis but xerostomia, that is, very dry mouth. This causes pain in the mouth and throat and a very dry and bleeding nose. And since I don't have sores, blisters or wounds, she did not doubt that it was xerostomia. I can continue the nystatin to actually prevent mucositis and I can also use magic mouthwash to relieve the pain. She prescribed me an elixir for dry mouth (Xerolacer, it has helped a lot!) and a toothpaste for dry mouth, as I was no longer tolerating normal toothpaste. And yes, I also have a list of things I want to eat when I recover 😁
Take care!
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@djschmidt1 that is so cool that this site was on there! I don't remember how I found it, but so thankful I did! Remind me what stage you are at in treatment. I'm right at 3 months since the last chemo, but still struggling with edema. It seems to get better then I will have a few days that it's worse (not as bad as during chemo though). It's always mentioned when I go for the targeted therapy ever three weeks and so far they don't seem concerned I'm still dealing with it.
I'm getting a little nervous about the first radiation treatment tomorrow 😕 I did fine with the breath holds during simulation but afraid I will be a little anxious knowing it's "the real thing" and goof up.
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@grammie2 I am 6 months past chemo (wow) 5months past surgery and now 2months past radiation. The radiation was scary but easy. It didn’t start bothering me until 2+ weeks in. It bothered me most after it ended (I only had 20). The first two weeks is a breeze. Apply aquaphor after and often. Best wishes.
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Off for TCHP #3 tomorrow guys 🫠
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@jessybessy best of luck, you've got this girl!
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Good luck @jessybessy! I'm having my third TCHP on Wednesday 😥
Think you're getting closer and closer to finishing chemo!
As for me, I have felt that with each treatment I deal better with the side effects, and for me, the first treatment of each one (AC and TCHP) has always been the worst so far.1 -
@grammie2 I hope everything goes well for you today! Then come and tell us how it goes and how you feel 😉
@djschmidt1 what a relief to read this, I'm terrified of the radiation but it's good to know that the first few weeks should be calm. What did you find worst about the entire treatment? Chemo, surgery (or recovery)?
Have a great week guys!!! It's been really hot here, people have been going to the beaches because it's hotter than some summer days! 25ºC here (77ºF) in November! It's not normal 🙄
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Bonne chance lovely lady. Me too - I did find #2 easier than #1, but do find that the drugs mess with my brain chemistry between days 3-8 and get quite depressed.
You're going to smash this x
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@jessybessy Thinking of you today! Today is day #4 after chemo #3, which means it should be my sleepy day. I also find it's easier dealing with the side effects at this point, since we know what to expect. I just am one who will always get thrush after chemo. It's the most annoying thing! But, at least I know how to deal with all of my digestive issues and they aren't even a bother now. I'm thankful I am still able to be as close to normal except for one or two days in between treatments!
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@djschmidt1 thanks for the info! And woohoo on being that far out from the treatments!!!
@jessybessy praying today will go smoothly and also the days after.
Hope everyone has a good week!!
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@catarina_fm by far it has been chemo. I had a rough go of it but better than some i saw at the cancer center. Mostly because it had all the sode effects. Surgery (lumpectomy) was a breeze and radiation really “bothered me” (skin discomfort and fatigue) at the end - frankly, after I was all done.
I still deal with some fatigue and get overheated in the florida heat pretty easily now but I'm told that improves more all the time. My hair is growing in curly so that’s weird to me but happy to have hair!!
I have no idea what to do with it!!! 🩷🩷🩷🩷
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I love it tbh!
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@djschmidt1 Look at all that hair!! I think it looks great!! I had a Brazilian straightening done two visits ago and it helped my “shorts” tame down a lot and blend in better with my “longs” that stayed because of the cold capping.
Cheers to you both, @jessybessy and @beekaycro24 for being halfway done with chemo! Chemo was the hardest part for me for sure.
@grammie2 Great big giant hug and whewww!
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@jessybessy thank you! I hope you don't feel so depressed this time, I've noticed that the side effects aren't always exactly the same 😊 hang in there!
@beekaycro24 for me, the 4th and 5th day after chemo are also the worst, despite the mouth problems persisting for longer. Let's see now if this next time the medication for dry mouth will help anything. I wish you a speedy recovery! You already know that soon you will feel better🌷
@djschmidt1 that's good to know. I'm not just going to have a lumpectomy because I'm going to need axillary dissection, I believe it will be worse, but I also think it won't be worse than chemotherapy. Your hair looks great! So long already 😊 I had curly hair and I hope it comes back the same because I don't know how to take care of straight hair either 😅 Although they say that sometimes there are changes in the hair texture after a few months.
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@djschmidt1 love your hair!!!! Gosh! Mine is just now starting to show and it is super thin with a few spots with nothing but fuzz. It's dark (I was light to medium brown) and my husband says my head looks "dirty" from a distance LOL.
@catarina_fm will be thinking of you Wed!!
@beekaycro24 I forgot to tell you that I had a super dry throat about 5-7 days post chemo. It would feel like the sides of my throat was sticking together which made cough and choke! Drinking water when that happened helped, but it was so aggravating.
I was really emotional at my radiation appt today. The girl took me into a room they would be in during treatment and there were several monitors showing my scans and info. She showed the area they would be treating but I am not sure I totally grasped the picture. They said it took longer the first time because they have to do some extra scans. They said I did good with the breathing but there were three longer breath hold times that were way longer that I had to let a little air out but was able to still hold the breath. I think the breath holding was harder because I was so nervous and felt like I was breathing harder than normal. Hopefully tomorrow I will be more calm and it will be easier. I'm still pretty freaked out about the radiation though.
Thanks to everyone sharing their experiences! It really helps!!!
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@grammie2 sending you love, yes day2+ is easier. I’m hoping you can get comfortable…i didn't hold my breath after the first treatment…..
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Round 3 of TCHP done - half way baby 🥊
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@jessybessy that's the spirit! 😉 6 infusions go by in no time, I'm already on the 7th! I hope you have fewer side effects this time! Stay strong and take care🌻
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I spoke way too early yesterday! I had the WORST day since starting my treatment. Diarrhea hit out of absolutely no where, I couldn't stay awake for any length of time, my skull and neck were so tender to the touch, then I started running a fever. It kept hovering in the 100.2 mark (my onc said ER at 100.4). Luckily, I was able to keep plenty of fluids in me and all I could tolerate eating yesterday was fruit. I did manage to eat some chicken noodle soup last night and an instant breakfast shake with peanut butter yesterday morning. My onc told me to take one Tylenol every 4 hours and go to the ER if my temp didn't start coming down or if I had chills. So glad it came down. I feel some better this morning, but I'm not jinxing it. I am taking it easy today.
We've got this, ladies!
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@beekaycro24 I hope you don't get a fever again! I know the pain you talk about well, I've always had muscle pain since I started TCHP. In my case, my neck, upper back, and pelvic area also hurt a lot. I have managed to control the pain with paracetamol (every 6 hours). The only thing is that as soon as I feel the slightest pain, I have to attack it quickly before the pain sets in. The nurses tell me that the pain is from the neulasta injections or from Phesgo and not from the chemotherapy itself (docetaxel), but I no longer know who to believe 😅 I think it's all together. It seems like you're managing to eat well, despite everything! That's so important! Even though it was harder this time, now you're going to get better and better, stay strong! 💪
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@beekaycro24 feel better soon!!! Im sorry you're having these issues.
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@beekaycro24 oh no! Sorry you are having a rough go! Makes you wonder if you had/have a bug?? But like @catarina_fm mentioned, some of the pain (head, neck, back) can be from the Neulasta (but I think you call yours by a different name maybe). Are you taking Claritin? That's what my onc said to take for the Neulasta bone pain. I'm actually still taking this for help with the SE's of weepy eyes (which can come from chemo or the Phesgo. Since I'm still doing Phesgo, I'm not chancing stopping it because my eyes are finally doing well. Prayers and hugs for you and hope you feel better soon!!
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@djschmidt1 thank you! Do you mind me asking why you didn't hold your breath after the first? I made it through #3!
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Hi ladies! Just checking on you! How are you all?
@grammie2 are you experiencing any SE? Have these sessions been better than the first? 3 already down! 👍️
@beekaycro24 are you feeling better? Did you have more fever? Have you been able to eat?
@jessybessy how are you? I hope you have few SE this time! Hang on!
I went yesterday for my 7th infusion. For now I still don't feel any SE (blessed cortisone) but today I'm stopping taking it and tomorrow I'll start to feel worse. I'll try to attack the symptoms as soon as they appear!
Tomorrow I'm going back to the hospital because I'm going to have a pre-op appointment. I will know the results of the MRI and know for sure how much the mass has shrunk and what the surgeon's plan is for my surgery. Maybe I'll already know the day of it! I am anxious 😅Take care!!! 🌼
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Yes @grammie2, i only had to do that when they did the measurements and set up. They didn’t instruct me to hold it during treatment. I also got to the point where I counted in my head how many seconds the laser/rads was “hitting” me and it was like 30seconds per spot (I had it from both sides each day so two spots).
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@catarina_fm Can't wait to hear how much your tumor has shrunk. Mine feels so tiny right now compared to what it was. My husband says I keep teasing him by making him feel my boobs to make sure it's not just my imagination.lol! My fever went away WITHOUT a trip to the ER…thank goodness! I'm doing much better. I actually got out and about yesterday and feel so much better. I'm happy to report NO mucositis this go 'round, just thrush (which is also normal for me). I've been putting lemon in my water to make it taste better and read online that it also helps with thrush, which I believe because that hasn't been as bad as before either. Who knew? Of course, the Nystatin and Magic Mouthwash are helping as well. The neuropathy/tingly feelings are back in my hands for now. Hopefully that will fade away again like last time. I also have not had the dry bloody nose this time. I read online to use a saline moisturizing spray and to put Vaseline inside your nostrils to keep them moist and encourage healing. That has been a game changer for me as well.
I have to say I am most anxious about radiation therapy and I don't even know if it's on the table for me or not. Idk why the thought of it worries me. I am learning so much from you ladies that are in that aspect of your treatment and pray all goes smoothly.
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That's interesting about the breath holds @djschmidt1. I have to hold mine each treatment about 5 times or so (I will have to try and keep count today. I am still really nervous and worry I won't hold it long enough, move, cough, sneeze or make some crazy jerk motion while they are zapping me. So @beekaycro24 I am with you on the radiation thoughts. Maybe you won't have to have any. Mine was reduced from 25 to 16 so I feel a little blessed. One thing I have notice about my support outside of this group has diminished somewhat. I guess they think radiation is easy peasy compared to chemo. And physically I think they are right because of the horrible chemo SE's compared to the radiation ones. But emotionally, I think it's at least a tie. I literally cried my first day when the nurse was showing me the scans and the treatment area. I'm a crier though for all emotions.
@catarina_fm yay on #7! Praying it goes smoothly!!
Praying all the other ladies are doing well. A few have been MIA so hoping they are all doing ok. Love and big hugs to everyone! I will be off for PT and radiation #4 today.
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@beekaycro24 so happy to hear this! Now it only gets better in terms of SE 🙏
I can no longer feel the tumor! But of course, only tomorrow will I be sure how much it has decreased. I'm optimistic! After 5 treatments the reduction in size was very pronounced, I just don't really know how small it is now, with numbers. It's great to feel this difference, because from what I've seen, there are many people who do not experience a significant reduction in the size of their masses (but this is much more the case in the case of hormonal tumors).
For neuropathy, what if you try taking an ice pack to place your fingers/hands on during the next infusion? I've been taking it and it works. Ice constricts blood vessels and prevents the chemo from reaching as far.
I will follow your tips! I think the idea of lemon in water can also help me, because otherwise the taste is horrible. I'm also going to start moisturizing my nose now to see if I can prevent that part.
Stay strong! 💪
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Thank you lovely, you're so sweet. I'm doing OK - just tired and have some heartburn but resting in bed x
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