Calling all TNs
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@pinkone501 Yep, it does get itchy. get the bandage off and wash with mild soap and warm water. It'll feel good, at least for a little while. 🤗
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Hey Ladies, took my bandage off last night, it is so weird to have this in me.
What kind of foods has everyone been able to eat on the weekly taxol/carbo , I am kinda worried about what I will be able to eat and drink
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You get used to the port lol, it is weird at first. Food wise this cookbook was a life saver “the cancer fighting kitchen” , I highly recommend it, has great advice on managing symptoms with food as well as yummy recipes. I found soups and stews really nice, dishes with broccoli, garlic and ginger were good and easily digestible.
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@pinkone501 I agree with Rhonda; you'll get used to the port. I'm a flip-flop sleeper, so it was tender at first when I was trying to go to sleep. I even worried I might dislodge it, but I never did. It doesn't bother me now at all. I ate what I wanted. I struggle with reflux, so my diet is more about that. A grilled chicken thigh and a slice of bread sit well.
When I get a craving for comfort food, like Olive Garden's shrimp alfredo, I usually pay for it later… but it was so worth it. Early on, we were going to a place called The Rusty Pelican for dinner. I'm in SE Louisiana, so you can imagine just about EVerything is fried! Checking the menu in advance, I saw something called Mahi Gras (not something I would normally go for), but I had my taste buds set on it. It was delicious, and exactly what I needed. I only ate 1/2. The rest was a great lunch the next day. Don't worry about food now. Eat what you feel like eating, and don't beat yourself up if it's not up to your normal nutritional standards.
I had the carbo every 3rd week; only Taxol was every week.0 -
Pinkone. My port has been in 8 days and yesterday I hardly noticed it. A bit difficult getting comfy in bed. The story of my life.
Day 4 of cycle 1. Eating what I want. It was stressed to rinse mouth at least 4 x a day to avoid mouth sores.
Got a haircut yesterday. A bit of a transition period. I'll use scarves and hats. I don't plan to leave the house much. We get cold winters in Se Wisconsin.
Pinkone, has the storm hit your area hard? Hope not
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Morning Ladies, I am trying to get prepared for all things , but it is difficult, I try to remember back in 2007 when I had this, only difference is no red devil this time and a much smaller tumor than the first, I am struggling with the new diagnosis because after 17 years the doctors were sure it was not coming back and no genetic mutations were found, go figure
I think here in Arkansas we are just going to get some of the rain from the hurricane
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Hey Ladies, so the lidocaine cream for the port, my appt is at 930 when would I need to apply this cream
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@pinkone501 45 min to an hour before your appt. Put a good glob directly over the port. Covering it with Press n Seal wrap works well.
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@pinkone501 And if one day you forget, don't worry. It's just a needle stick. It's not as bad as any IV I've ever had, but the cream makes it painless.
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Hey gals, hope everyone is well tonight and glad you are not in the path of the storm.
Eating, resting, walking, shopping… just do the best you can to take care of yourself. And make time to laugh often. When I was first diagnosed my MO said eat whatever you want. I found a mostly plant based diet best for my energy and mood, and chocolate on occasion lol. That grilled Mahi with onion rings looks amazing ! Went out to dinner with friends tonight and had a falafel, with a salad with homemade croutons, .. my version of onion rings, with a pomegranate iced tea and it was all yummy. Just do what is happy making and watch how your body responds. If you feel good continue, if you don’t feel good make a change. I think sensing that and caring for the body and mind is half the battle .
Everybody responds differently to treatment, so getting organized is also personal. I always like knowing what’s usual and prep as I can. I’m on cycle 5 day 17 of my treatment, so I was expecting the rash on my legs and lo and behold it came on today. Love my journal, so I wrote it down and then applied my cream for the itch and life is good.1 -
I've never had falafel! I need to try it. I'm glad your dinner was delicious and hope you had fun with friends, I had a grilled pork chop and mac & cheese for dinner, and I'll admit to not feeling that great afterward. I don't keep a journal, per se, but I document most meds, bodily functions, and important stuff like "I feel better today!". That was day 10, so I know to look for a long haul of feeling like crap after the next treatment. The bright side? Only 3 more treatments to go! I can do this!
Have a wonderful day, ladies! 😘
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@justsnapd8 i hear you, when are feeling like crap with AC eating and enjoying it can be spotty ..I remember that and counting down to the end too lol. Yeah for only 3 more treatments 🥳 Yup, you got this !
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Hi ladies. Thought I'd write In about my first week. Best I can make out we're all doing the same protocol but maybe not. PINKONE, you that said you're doing a lighter dose. I dont know that I ever got any Info on the strength of my doses. I know the benadryl was 25 mg. And I'll be sure to ask them to run that 40 minutes tomorrow. Hope it prevents the restless legs.
I was thinking how it made me so sleepy yet I didn't sleep well at night. Oh yes Dexadron is a steroid.
Only D I had was today once. I wonder how much to expect. But we're all different. Not sure I want to leave the house.
A gushy tummy all week. A low grade headache all week. Stuffy nose. Was that seasonal allergies or the steroid? Blurry vision too. That gets in the way of doing anything constructive. I took the compazine 2x. Told to take at first sign of nausea. It sure made me dizzy. I wonder if there isn't something milder to use. Overall, a variety of SE but all mild.
Tomorrow is the taxol and prechemo meds. I wonder how long that will take.
I hope you're all doing well.
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@gailmary I'm glad you checked in! Not speaking for Pinkone, but if you have a reaction to any of the meds, they'll cut it by 20%. I was having what I thought was neuropathy in my hands, so the MO cut the taxol by 20%. It worked! So it's important to write down those little things so you don't forget and share them with your MO, no matter how insignificant you think they are. Did they give you a diarrhea protocol? 2 Imodium at first sign, then 1 every 2 hours up to 8 total in a day I think. Diarrhea can quickly dehydrate you and land you in the ER. I've used the protocol several times! I take Compazine as preventative, the first few days after chemo. I'm a wimp when it comes to nausea! For me, the taxol only ran about 3 hours. If you take someone with you to chemo, and you should, tell them to help you be assertive about the Benedryl. It will make a world of difference for you. Good luck tomorrow!
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Oh yes @justsnapd8 . They gave me a 1.5 hour class and spelled it all out with their own book. Everything you just said. I've been doing the diary and have a best friend with a big mouth to speak for me.
I was just reading a thread from 2021+22. Neoadjuvant Carboplaxin and taxol weekly x 12. +keytruda followed by AC + keytruda 4 cycles3 weeks apart. Then just keytrud
Seemed the ladies had plenty of issues w liver function. Mine is same except carbo is only 4 every 3 weeks. Guess I should add that to my profile.
I wonder if the weekly is for worse cases or what. They sure have studied a bunch options. I feel we've got the best shot anyone ever did.
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@gailmary I think you're right about us having the best shot. I had the same schedule with carbo, not sure why. I figure they know what they're doing. The AC+Keytruda is what I'm in now. Not sure about the Keytruda after these 4 cycles. I might've missed them saying that. It's easy to get overwhelmed and miss stuff, though. Love your mouthy friend! Hold on tight to her! :)
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Morning ladies, got my first chemo yesterday, it went so well it is scary, the benadryl was kinda scary I got real dizzy thought I was going to pass out, seems lie the premeds take forever, I am taking my anti nausea meds at home the compazine just in case, hope all of you are doing ok
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@pinkone501 I hate that you reacted to Benedryl. What did the nurse say? I think I take Compazine through day 4 of the cycle. Love 'just in case' meds!
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Hi gals, glad everyone is doing well !
@justsnapd8 I agree, love the just in case meds too. Haven’t needed the anti nausea or anti diarrhea for the current protocol’s, but love having the just incase pill bottles. Reassuring to know you have remedies at hand.
@pinkone501 so glad the chemo this week went easily. Im sorry the Benadryl was scary, definitely talk to the nurse next time. I looked back in my journals to last year , and I was scared by the flushed reaction and feeling spacey. Called the MO and she was very reassuring. Your blood pressure can dip and feel dizzy , that is what she thought happened and it passed and or I got used to it. I ate peanut butter and that helped, of all things ! Pending on what you are on for pre meds they can take an hour or so, ontop of a three hour chemo you are in for a full day. I always bring a book and snacks with me, along with my DH. Due to my tendency for allergic reaction to the Trodelvy, I take 50mg of Benadryl, lol… and it’s hard to talk , feel drugged and usually fall asleep. Then after my hour infusion I have an hour of hydration and feel right as rain.
It’s all scary in the beginning, dealing with the fear, the emotions, and the physical sensations as the body is trying to heal and the mind not overreact. It’s a lot.
@gailmary love that you have company with you to listen and advocate for you. My DH is always watching the drip and makes sure there are not air bubbles that he can see. Glad you are keeping a diary. I really like it. I had weekly Carbo taxol and no liver issues. My MRI after the Carbo taxol was cancer free, before I started the AC.
Go figure… and here I am going through it a second time. And in a weird way, it’s so much easier this time, the treatment is milder and I’m more at peace with it all , which helps. I see the surgeon and my MO tomorrow and start cycle 6 of Trodelvy. Should learn about the radiation plan and if we have a surgical option too. I’ll keep you all posted. ❤️
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@rlschaller Hope you get good news tomorrow, Rhonda. A plan, a surgical option, etc. I hope they can lay it all out for you.
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Hi All, If you feel inclined, chime in with what you want people to know about Breast Cancer Awareness Month:
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Writing this to give you all hope.
Self discovered approx 2cm in 1996, age 37. R total mastectomy & total axillary clearance, all nodes clear (brutal surgery in those days). 6 sessions of chemotherapy (weren't told what drugs) no radiotherapy, 3 years tamoxifen. Was then told tumour was TN & tamoxifen wasn't any help so it was stopped & no alternative in those days.
Had expander implant reconstruction 1999, successful for 12 years then it folded, so was replaced but got an infection in that one so removed within a few months. Tummy flap reconstruction 2012 then failed..in & out of hospital for months, not pleasant! Currently lopsided but wear a breast form.
I had genetic testing about 10 years ago..BRCA1. My mother lost her fight with ovarian cancer at 37 (1965, no treatments available then) & my beautiful daughter who carries the BRCA1 fault has just been diagnosed with TN bc at age 34.
But...and this is a bit BUT…I'm still here 28 years on & as yet no recurrence.
My experience gives me hope that my DD will be fine once she's been through the treatment mill; I pray my story gives you hope too.
Bless you all.
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Morning Ladies, still no side effects from round one of taxol/carbo, lets hope the effect does not happen later.
Waiting on the hair to fall out, ughhh
Hope all of you are doing ok
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@seasea58 Sorry to hear your dd has been diagnosed with TNBC. Thankfully, treatments have come a long way since your journey started. I tested negative for BRCA1, but there's another one I did test positive for, BRIP1. It's linked to ovarian cancer, but very early research-wise. Just something to watch for since you said your mom had it.
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@seasea58
thank you for sharing your story. I'm so happy for you. I can't imagine your dd would have it so hard. Women suffered horrendously in the past.
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@justsnapd8 Thank you & best wishes. Never heard of that gene but will bear it in mind when we talk to DD's oncologist.
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@seasea58 welcome to our community! We appreciate you sharing your good fortune but are so sorry to hear about your daughter. We hope she can join us here as well for some support!
For your information, here is some information on the different gene mutations with notes on other types of cancers associated with the mutations:
Genetics as a Risk Factor for Breast Cancer
We hope this helps and look forward to supporting you and your daughter!
—The Mods
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@pinkone501 I cut my hair short before it started shedding. But it was at the 3 week mark that the fall was out of control and I had it buzzed
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Thank you for your good wishes, hope you're all doing OK.
I will suggest to DD that she joins
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Morning Ladies, well the leg muscle and hip pains have started, guess I will tell my doctor Monday when I go for my next treatment
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