Starting Chemo May and June 2024 Support Thread
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I am so sorry they messed up your cold cap @sarahjunefox !
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@ebfitzy I think you will need to take something longer lasting than Benadryl. Claritin is a 24hr medication and I’ve heard people start taking it a week before the shot and also the week after. Clearly not everybody gets bone pain from the Neulasta, so let’s hope yours is minimal to none 🙏❤️
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I think I may have had the hat trick when it came to my first round of chemo… not only is the chemo hit number one, but I apparently have a cold, and I reacted poorly to the Neulasta shot. Let’s hope everyone else is doing better than I am 😂🤧
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@sarahjunefox i have got something to tell you. At my infusion session today, there was a guest at the clinic. I previously told my nurse about the products in the Paxman kit not being clean. Well as I was getting my cold cap on, they brought Claire Paxman over to speak with me. She adjusted my cap because it was not put on me correctly. And we are going to speak to hopefully optimize the products!! My husband is here with me. He is from Manchester she is from Hudderfield. Small world
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I didn’t have Claritin yet so I took two benedryl and 4 ibuprofen lol and so far so good. Except the benedryl made me really tired but considering I couldn’t sleep last night (probably bc of steroids) I’m going to take 2 more before bed so hopefully I can sleep tonight 🤞
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Thanks. My only concern is that I had my port placed just yesterday and my PET tomorrow. And so I am still healing. And quite honestly still sore. And I also know they need you to raise your arms during PET and I am still in pain if I raise my arms so I definitely will mention that tomorrow. See what they say.
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I have another nurse navigator in contact with. She's fast to reply through chat. She came in and introduced herself when I met my breast surgeon so I guess she will be my go to if I need questions. So far they are good in calling in to remind me with my appointments and instructions on what to do, It's just that when I have a concern, I want someone to ask that replies fast and so far it's Nicki, that's her name so God bless Nicki for caring.
I have a question about my port placement. Thank God so far so good. It was done fast. The wait is horrible though - 3 hrs. The surgery took only 30 mins. I am just still sore. I want to ask coz they just put surgical glue on my stitches that's it. They didn't cover it up. I mean is that normal?
I also have confusing instructions. The nurse that came in to explain the procedure said I should not wet it for a week but the other staff when we ask said I can take a shower normally after 24 hrs. Just like when I had the biopsy.
I just talked to my husband he said the nurse that came in said that they will use the surgical glue. I just was wondering why they didn't cover it with bandage.
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Thanks. So far they're good in calling me for appointment reminders and instructions what to do. I had a lovely nurse navigator that's fast to reply about my concerns through chat so for now I am good.
OMG. Wow. you're brave. I KNOW that has gotta hurt during your MRI. I applaud you for getting through it. Meanwhile my plan is to whine tomorrow to whoever is doing my PET scan that if I need to raise my arms, I will be in pain. I mean I can raise my right arm no problem but my left arm, nope it's painful. So they most likely will ignore me but knowing how brave you are going through MRI a day after the port? wow. Bravo.
Regarding the PET all of those nurses I asked yesterday, the one who called me today about my PET scan appointment, they all see no problem. But of course we both know it's coz they are not the ones who is going through that pain while we lay still…
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@pneuma They used glue on mine and it wasn't covered. I don't remember having to wait 24 hrs to get it wet, but it's possible. Otherwise, enjoy a shower! Soap up a soft cloth and get after that incision site too. You'll feel like a new woman!
Regarding your pain, they should only ask you for what you can give without pain. I had an ultrasound tech pushed down on my arm, trying to get a better view and it was painful. The radiologist told her "Let go of her arm, you are causing her pain!" She was one of many techs that I've seen, but she was laser-focused on the ultrasound instead of me. We do not have to put up with unnecessary pain, especially brought on by negligent techs. We're going through enough already.
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@Love4All I had a massive sinus infection after my first treatment that needed antibiotics to clear. It was WAY worse than I have ever experienced, presumably down to the reduced immune system. It totally floored me. I'm having the opposite experience weather-wise here, it is a freezing summer so far in sunny ole Ireland 😅
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No way! That's gas.
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@sarahjunefox if you go to Claire's instagram page, she has a video on how to make sure it is put on correctly. We made a video yesterday for my husband so he can help make sure it is put on correctly
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My doctor gave me a "side effects" cocktail about 30 minutes before I had my first chemo yesterday. I feel amazing today. The cocktail was benadryl, pepcid, dexamethasone, ativan and aloxi - which is a 72 hour nausea medicine that lasts while I take the others and build them up in my system. My neulasta arm thing kicks in at 6:30 tonight and she has me taking Claritin, tylenol and ibuprofen all day in anticipation of the pain. She gave me sleeping pills for the next few days as well. I am waiting for the other side effects to kick in - but so far I feel good.
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Wow! That is awesome!!! So glad to hear you’re feeling good! 🙌🙌
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@Love4All i have been taking benedryl and ibuprofen and it’s helping I’d say. I had some bone pain in my legs and arms but nothing too bad. Today I’m def feeling like my taste buds are changing though and can’t taste as much. It’s my birthday and I can’t even decide what I want for dinner bc I’m not sure if I’ll like it 🤦♀️
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@ebfitzy Happy Birthday! Remember to use plastic utensils when you eat that birthday cake! 😘
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HAPPY BIRTHDAY!!!! My taste has totally come back already, so maybe just eat what you can tonight and postpone your bday dinner to next week when you’ll probably be able to taste again? I’m glad your bone pain is not too bad. Keep swishing with the mouthwash to prevent sores (I just used 1/4tsp salt and 1/2tsp baking soda in a cup of water).
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@ebfitzy Happy birthday!!
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Hubby shaved my hair the other night finally, the shedding was freaking me out too much! My son reacted pretty badly at first, but then we talked about it and I let him decorate my wig holder and steal my wig and he's fully on board now.
Today I'm wearing the wig! It's my first time leaving the house with it and I felt like I had a huge neon sign over my head saying WIG WIG WIG but it all went well and I think I got away with it
Oh, and half of my eyelashes are gone this morning. SO weird.
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Wishing you a happy, happy birthday, @ebfitzy!
@sarahjunefox, you are incredibly brave for taking this step, and it's wonderful that you have such a supportive husband. Oh, and your new look is beautiful! 💝
The Mods
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@sarahjunefox the wig looks great on you! Did you give up on the cold cap or did you feel it just wasn't working?
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@klyking I'm still going to keep cold capping, unless all my hair is gone. I shaved my hair because I couldn't bear the handfuls of it falling out, it was too triggering for me. I still have a lot of hair, maybe 60%, but the top is a massive bald patch so I need the wig to hide that
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@sarahjunefox You look amazing (hair or no hair)! BEAUTIFUL!!
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I hope everyone has a nice weekend! I finally left the house today for the first time since chemo last Monday! My hubby took the day off of work and took me to my fav plant store 🙌❤️. I was so paranoid about catching another cold after finally feeling over this sinus infection/chest cold that started the day after chemo. I think I got into my own head a bit too much 🤪.
Thinking of everyone and sending good vibes! One more week until the roller coaster ride starts over again 😮💨
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@ebfitzy and @Love4All , my claritin info is to take the morning of my Neulasta shot (my shot is at 1pm). Then take it every day for the following 6 days to help bone pain. I did get some nagging pain in my hips but nothing unmanageable. They do specifically say that it should be claritin 24 10mg.
@ebfitzy Happy Birthday
@sarahjunefox congrats on making the cut.
I love seeing everyone's photos, thanks for sharing them.
I had fluids at the clinic on Tuesday as my diarrhea has been pretty bad. They also prescribed anti-diarrhea meds for me as immodium is not working well enough for me. My body was so happy with the fluids I spend all of Tuesday afternoon in the bathroom letting them leave my body again, goddam it. Once I was able to get my prescription I felt much better after one dose of it. I have a nice😯 kit to take stool samples on my next incident but was out today when it happened so missed getting sample. The nurse practitioner said it is probably from the Perjeta, I'm going to try to get scheduled for more fluids on Monday or if possible over the weekend and make them schedule it for me 3 days after my next chemo. Cause this is literally 💩show.
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Hi All,
I love the pictures! Everyone is so beautiful. I cut my hair this week. Started wearing beanies with the short hair. I want to get used to them. I want my children to get used to seeing me in them. I had my port installed by my surgeon on Thursday. The entire staff at the hospital was TOP NOTCH! Compassionate and kind. I feel ok except when I try and get out of bed. I have a lot of discomfort. My treatment begins on the 24th.
DX 05/16/2024 IDC stage 11 HER2+ ER+ PR-
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