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Have rare form of TNBC and starting tough chemo. Need advice

Posted by azdogmama @azdogmama, 1 day ago

I learned that I have a rare, invasive triple negative cancer. Will be starting weekly chemo (12 weeks) of Carboplatin and paclitaxel. After that I have 12 weeks of Adriamycin and Cyclophosphamide every 3rd week (3 doses). Then surgery and radiation. It will be a long haul.
I will have 3 meds for nausea. I have so many questions and will try to keep this readable.
1. What should I bring to chemo appointments? I'll bring a book, earbuds for music and crosswords. Should I bring something warm like a blanket, socks, etc? If a blanket, what is thin and warm?
2. How did you manage nutrition? What was easy to eat?
3. I will lose my hair. Where did you find good hats and scarves? I'm not sure about wigs...
4. Anything else I should know?
I will be having a teaching session the day before chemo but I wanted to hear advice from ladies who have been there.
Thanks so much
Kim

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bpknitter53 | @bpknitter53 | 7 hours ago
In reply to @azdogmama "@bpknitter53 Love the chemo treatment bag idea! Never thought about candy ginger but I'm going to..." + (show)
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@bpknitter53
Love the chemo treatment bag idea! Never thought about candy ginger but I'm going to get some. I think the protein idea is fantastic too. I struggle with getting enough protein so that will really help. I don't knit but I did get an IPad because it's easier than a kindle for reading. I may even try to teach myself bridge.
Thanks so much!
Kim

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I like ginger and its supposed to help with nausea. I kept alot of stuff
in my bag because I never knew where I'd be mentally during treatment.

One other tip - having the mediport for me was awesome- it help my hands
free to do whatever I wanted.

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hsminc | @hsminc | 6 hours ago

Where are you receiving your care?
The facility where you are receiving care should not only have education sessions, they should be able to introduce you to others that have gone through this protocol.
TNBC is a tough diagnosis. I had very early TNBC (small tumor, low grade, no lymph vascular invasion, no LN involvement known, large surgical margins). I had radiation but declined chemo.
Have you talked to MD Anderson?

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azdogmama | @azdogmama | 5 hours ago
In reply to @beckyboston "Hello Kim, I see a lot of responses so I will just add a few things...." + (show)
Profile picture for beckyboston @beckyboston

Hello Kim, I see a lot of responses so I will just add a few things. I had your same/similar treatment for TNBC as my second round of chemo after recurrence (Keynote 522 and mastectomy), the year before, I had TC combo with lumpectomy and proton radiation. I have lots of experience. First off, I never got nausea at all, with any of my chemo. I used some ginger candies and I ate a fairly bland diet through the time, but just saying, you might sail through! Small bites and meals to always keep something in your stomach. And electrolyte drinks or pedialyte are key.
I would highly recommend using the Cooling Mitts and Socks to prevent neuropathy! My doc at Dana Farber says she doesn’t understand why more people don’t use them. I never had any residual neuropathy since my treatments ended last August.
I also used the cooling cap but not sure that is as important. You’ll lose your hair anyway and the cooling cap adds hours to your treatment.
Treat the caps as “fun” and go online and buy a few to try them. They all fit differently and if you find a good one, buy a bunch, especially bright prints, to keep a smile on your face.
Keep moving!! I walked every day and did yoga twice a week through all my treatments and I’m 75. Exercise is really important!!
Good luck to you, have fun with your infusion nurses, bring them treats and cards and your attitude will carry you through!!

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@beckyboston
You are an inspiration. I hate being nauseated (who likes it?) and you made a lot of sense. I'm going to check on the Cooling Mitts and Socks. Totally agree about the cooling cap. I'm looking at six months of chemo and hair is my last concern.
We are roughly the same age and I've always been active so it's great to hear that you were able to keep moving. I've had visions of being "sentenced" to my La-Z-Boy.
Thank you!

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