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

Ki 67 index?

Hi,
I had TNBC lobular cancer am now 5 years along after cancer.
Some clinics have hat donation from people, I got mine from Amazon. Most clinics provide blankets but I brought a lap blanket and slippers so I could be comfie.
Water and no sugar Gatorade or biosteel are nice drinks to have.
Sending hugs and best wishes to you

@constantinos
It is 90. Oncologist is being very aggressive with treatment. The tumor aches and lately has moments where I feel someone is twisting my nipple. The tumor is sitting right behind it.

@dolphina3
Thank you and big congratulations for the five year mark! I hadn't thought about a drink with electrolytes but I will get some before I start chemo.

Hi Kim,

I had a similar regimen in 2020 for TNBC. I have had no reoccurrences and my lab work and scans have dropped to just every 6 months. My oncologist now hugs me after every meeting!!

The pain should stop with the first doses, especially with the weekly taxel first. The TNBC went to my skin in the weeks between diagnosis and chemo and it was so painful but the first chemo session knocked that out.

1. Your center should have warm blankets. I brought a laptop to watch movies. With the taxel I had they mainline Benadryl through your port/IV in case of allergic reactions, so I mostly dozed.

2. I had a great book, The Cancer Fighting Kitchen, for recipes. You can have family and friends do recipes right out of the book and there's lots to help tweak recipes when your taste center is off from chemo.

3. Most centers have donated wigs and hats and scarves - I got my hats there.

4. The cascade of medicines is a lot - like the chemo will destroy your white blood cells, so you get an on-body to replenish your WB cells, but the on-body causes bone aches, so they'll give you Claritin...

You can forget why you are taking what, but they do all help. I skipped my constipation medicine, thinking I'd be fine since I was so young and healthy and ate well - huge mistake.

It's tough having a "bad" version of a "good" cancer - even the few friends who were still doing meals through radiation and reconstruction really didn't understand how fast/far the cancer had spread and how much work was needed to get rid of all of it.

You got this, and we are with you.

@seathink
Thank you so much! This is exactly what I needed to know. I ordered the cookbook and will get it today. I love that the recipes can be made in advance and frozen. When I do chemo teach I'll ask about warm blankets - sounds wonderful! - or I'll just bring my own. Totally agree about all of the meds. Reading them makes my head spin so I will just trust that the M.D. knows what she is doing 🙂

I was treated for TNBC and completed all treatment about 3 years ago. I made myself a chemo treatment bag. I had a iPad for reading or movies, an iPod for music, a lap blanket, a water bottle with either Gatorade or Liquid IV (a powder you can add to water - it came in different flavors) and snacks which included candy ginger or ginger gum. I’m a knitter so I knit myself several hats to wear.

I ate high protein meals. Somewhere I read to eat 1/2 your weight in protein grams per day. So if I weighed 150 lbs, eat 75 grams daily in protein. If your blood numbers aren’t high enough you won’t be able to have your treatment. I accomplished this by eating a high protein breakfast. Fairlife milk with a flavored protein powder. This meant the bulk of my protein was taken care of in that one meal. I also kept small cans of prune juice to add with the constipation.

In addition to chemo I had bilateral mastectomy and then radiation. I did what I could to keep my attitude as positive as possible, and I think, this in part, is what helped me get thru this journey so smoothly. My curly hair got matted so I had my head shaved and since it was winter I wore caps when out side the house. I also went thru treatment during Covid so I worked from home and fortunately I worked the entire time except when recovering from surgery. This site was my sounding board to converse with people that understood what I was going through. No comment whether a vent or a request for support ever went unanswered.

Be brave - you’ve got this.

@azdogmama I am sure you are having the best treatment.Courage.

@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

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!!