u/PeaceLvSpreadsheets

Okay I should NOT be spiraling downward right before my last chemo infusion but I am. For those of you who are past the initial treatment phase...

1. How are you checked for recurrence? I have dense tissue so mammograms don't show my cancer, so that makes me nervous.

2. For those of you who had recurrence how'd you find it and how bad was it? I keep hearing that if TNBC comes back, it comes back everywhere.

3. What was your recurrence treatment like? I feel like we are just all on keynote 522 after we get diagnosed but I have no idea what happens if you're declared cancer free, then declared not cancer free. And I haven't been been cancer free so maybe this is not the question to ask but it's where my mind is at today.

Here are some things I did recently:

1. I made every user flair editable. I don't know what to do with this stuff so hey we an all be creative. Stage didn't seem to fit. But I overthink things, especially right now, so now you can pick a user flair and make it literally whatever you want it to be.

2. Added new post flair for clinical trials, good news, caretaker questions. I like what the larger breastcancer sub does to with caretaker questions, they're allowed just have to use the right flair.

3. Took a nap. Because, chemo. It sucks but I'm thankful for this community and the support we have for each other. Hang in there and hope for the best 💜

Happy to hear any other suggestions or thoughts you have about our new and growing subreddit.

I am so ready to be done with chemo.

AC #1: My oncologist wanted me to come in the next day for a Fulphila shot so I wouldn't get neutropenia. Okay, did that.

AC #2: Insurance said we won't approve that. Okay, so I did not do that. But two weeks later my ANC count was 0.2 cL so my oncologist called insurance and they approved two nivestym shots - one that day a follow up the day after.

AC #3: I was like what are we doing people. Same dance! Get chemo, wait for ANCs to tank, and surprise... they did! So I got a call from the office that I'm going in tomorrow and friday for nivestym because insurance will approve it based on bad labs.

Did I mention I have a full time job? Good thing my coworkers are tolerant but this means I can only be in the office for a half day, then leave at lunch, get my shot, work from home since it's closer and teams in to my later afternoon meetings... it's just a pain.

how's this working with your care team? it feels stupid.

We get a lot of "just diagnosed" visitors here. I was stage 2, so ended up being chemo first surgery second, and I'm not DONE with chemo so this list might build, but I wanted to get it out because it's advice that I can see myself reposting again and again, I'll probably pin it to the top of the thread. But I'd love to hear from you all about what helped you in the terrible period between diagnosis and treatment starting, when your head is just spinning. It gets better, mentally! This was a rough time for me because I really hate UNKNOWNS but it was only a month. I hope you all get similarly good attention!

1. Know that you have at least a month of scans, tests, referrals, probably port surgery before chemo starts. I had no idea what to expect but staging is complicated. Treatment for me started one month after "the call" but that's pretty fast, 6-8 weeks is common.

2. Get a notebook to write down all the phone calls and appointments that will fly your way. Any time a doctor's office calls you write down WHO you talked to and what number you should call back if you have questions because you will think of a question, probably 5 minutes after hang up.

3. As soon as you know you're getting TC chemo - aka Taxol aka Paclitaxel - order freezer gloves/booties or post in a local cancer group to see if anyone has some. So many things you need are locally available and you might not even need them but these are not. I am cheap af and tried not to order anything but I eventually got two sets to rotate them, and ended up with some neuropathy in my toes but none in my hands. Even better - start a wishlist and have friends/family buy you two sets because people ALL wanted to send me something, and without a wishlist I ended up with SIX fuzzy blankets! They could have bought me craft supplies! Eventually I figured the wishlist out, and just asked for things I wanted, people were very supportive it was a huge relief.

4. Buy a hair trimmer. I thought I'd lose all my hair one day and be bald. But nope, I had this patchy mess the whole six months that I just re-buzzed so there wasn't one ceremonial need for a trimmer, it was constant.

5. Get your vaccines up to date - flu, covid, shingles if you're eligible (I got shingles when my immune system was down yaaaay ugh)

6. Visit your dentist. Get a teeth cleaning out of the way. Tell them you are starting chemo, it will affect your mouth and they have good advice. Mine told me about biotene mouth rinse that was great for dry mouth!

7. Start using nail hardening nail polish

8. Eyebrow microblading? I didn't do this, ran out of time but it would have been nice.

9. Work out! Exercise pushes the bad thoughts out of your head and it's good to be in shape to get started, when you're in treatment it's still great to work out if you can but everybody is different. I was frustrated my by inability to build anything, every run felt like I hadn't run in weeks even if I was going every day, but I still tried!

10. Visit your optometrist, get the eye check out of the way so you know if your vision is affected. And it's one less thing to deal with!

Okay friends - that's my list, what would you add?

I keep dancing around this in my comments I just need to make a post about it!

I hear that dry mouth is very common with chemo.

BUT I asked my oncologist for prescription intervention because mine was so bad - I needed a constant supply of xylitol lozenges, melts, rinses, gel, spray, gum just to get through my day as an office worker with occasional meetings/mom who needs to talk to my kids and tell them to put shoes on 87 times so we can get out of the house (maybe I could just make a recording of this to replay, sigh).

So we tried Pilocarpine and that didn't go well because one of the side effects is sudden onset of explosive diarrhea - I might be brave and try it again but my first attempt was a learning experience! So, not on an office workday.

And now my oncologist is wondering if I might have an auto-immune issue stemming from Keytruda. Trying some steroids. They're saying that my dry mouth might be way worse than normal chemo stuff. Tested me for sjogren's antibodies and that came back positive.

I also noticed that after I stopped Taxol, my taste buds came back to normal. On weekly Taxol I had been unable to taste anything salty. cheese was gross. In my break time between Taxol and AC I could love cheese again! My dry mouth did NOT get better though.

I don't have the other sjogren's symptoms like dry eyes, etc... just not making saliva.

Thank goodness for xylimelts! But I shouldn't need 10 a day just to survive, right?

I am 4 months into the 6 months of keynote 522... done with TC, halfway through AC, and here are three things I'm dealing with that I just HOPE go away... but I'm curious what you all experienced?

Neuropathy - we stopped taxol two doses early because my toes were asleep all the time, and on bad evenings I get this shooting pain in my 4th toes, I have to move around and stretch and sometimes just ignore it as best I can. Yes I did the ice booties during taxol but studies were mixed on those anyway. Luckily my hands are better. Maybe I shouldn't have worn compression socks too, my hands always felt colder, maybe the socks kept the cold from getting to my toes? Anyway will this go away, and is there anything you did to help it?

Sjogren's - Keytruda might have given me an autoimmune disorder. Still ruling things out we're trying to wake my saliva glands back up with steroids but my dry mouth sure didn't get better during my 3 week break between taxol and AC, and I know there are other autoimmune things people get, did they go away?

Hair loss - I didn't cold cap. Didn't go totally bald either, so I'm hoping that's a good sign. Did you have permanent hair loss?

Okay that's three things so that makes a post, thank you all in advance for helping me know what to expect on this whole crazy unexpected journey. 💜