Calling all TNs

kathyrnn

My doctor is using the PSA as a possible cancer marker for this type of cancer. It must not be unheard of because my insurance company is paying for it. I have no good info on any preventive measures. Biclutamide and Enzalutamide have shown positive results but you can't get prescribed or covered because it's considered experimental. My doctor said she would fight for it if I my cancer recurs. It's very frustrating. Possible drugs exist that could stop metastasis, but you can't get them till metastasis occurs. Rock, meet hard case. I guess I'll just have too outlive the damn clinical trials.

urdrago71

Im confused, is this PSA testing something all TNBC shld do or just if AR+ ? And how do we know if we are AR+?

Sorry trying to play catch up..

Cyber hugs

santabarbarian

urdrago, Just the AR+ people would (potentially) need to do this. AR is a 4th receptor that can be tested-for after ER, PR & HER2. Optional to test for it. My doc did it.

HopeBry

Just had my 1st taxol treatment. No nausea thank God. Just feel tired and no tastebuds still. Will see how it goes with more chemicals in my system.

Decided to track my journey. Im new to instagram. "hope.creativitee"

santabarbarian

HopeBry - great you are hanging in there!

Flynn

congrats on 5 years, Kathyrnn!! Thanks for checking in! I haven’t been tested for AR because my MO indicated that results wouldn’t change current plan of treatment (Xeloda). I’m still mulling if it’s something that I want to argue about.

Hopebry, glad you decided to give Taxol a try! I hope you find any SE’s tolerable. Yay for no nausea!!

rdeesides

Hi all, I haven’t checked in much lately but I just want to jump in for clarification for any newbies. Besides ER, PR, HER2 and AR there is also PDL1.

I was seen by a well respected teaching Onc who told me I should do everything I could to hit the ground running in case I progress to mets. That is why I pushed for testing. It’s true that it didn’t change the course of action right now, but I am ready to make some pretty quick calls if I do get mets. Keep in mind everyone was very worried about my case as my cancer had no reaction to chemo. I suppose that those that have good success with chemo could ignore that advice.

I’m glad to hear that so many of us are doing well. I am eagerly looking forward to my 2 year anniversary in June.

Hugs,

Rebekah

santabarbarian

Rebekah you and I think the same way. I wanted to be ready -- and then be thrilled if I do not need the info after all. I think that TNBC is so heterogeneous it is important to have a sense of what you might respond to if needed as a 3rd line. It might indicate hitting a clinical trial or an off label drug, if you know all of your receptor statuses.

urdrago71

I just got the response back from my doc. And nope I wasn't tested for AR or PD-L1 so I asked if there's still a way to do testing. Ugh, bothers me that nationally theres a struggle for cure and new test come out yet we dont gather data..

cccmc2

I feel so lost to a lot of these terms. Maybe I should brush up on my knowledge. I’ve just been cruising along trying not to think of cancer and doing pretty well! I have my first post chemo Mammo in March. Hope everyone is doing well❤️

rdeesides

Udrago - testing for AR and PDl1 is not standard. You have to request it thru Foundation One or Caris. Insurance probably won’t cover it either. They can still test for this post surgery as they save your tumor somewhere.

Rebeka

urdrago71

ccmc2, whatever u dont understand just ask us and we can respond what it means.

Rdeesides, yep I asked and they hospital is going to talk to the team

Rascalsmom

What does AR stand for?

santabarbarian

Androgen Receptor

TuesdayStar

35 years old (mother of 4 year old girl and 5 1/2 year old boy), recently diagnosed Triple Negative breast cancer, grade 3 invasive duct carcinoma. I don't have a stage yet, still undergoing testing. Treatment plan is adjuvant chemotherapy (4 bi-weekly treatments dose dense A/C followed by 8 weekly treatments taxol) hopefully tumors will reduce in size and I will have surgery.

KWilli

oh, TuesdayStar; I wish we didn’t have to welcome you to this party.

Thinking of you and your babies.

X

Meow0369

TuesdayStar, Hi glad you found this TN support group, it will come in handy along with the other forums. Look for the recent chemo groups they are wonderful. So sorry that you are going through this, it'll be 3 years for me March 1. My kids were 12, 9, 6 and it broke my heart not to be there for them during my surgeries and chemo but this is nothing to play with. Be Kind To Yourself! You got this and it's doable, I know caring for your babies will be hard but your doing everything you can for them! Ask questions and listen to your instincts. Eat well and rest!

TuesdayStar

I am looking for a bit of advice and I'm not sure it's worth posting a whole new thread (I'm familiar with forums and I know it's a bit of a newbie move to impulsively start new topic threads)

But I want first-hand recommendations on skin care, moisturizers and ESPECIALLY scalp care during chemo. My intuition is telling me that keeping my scalp supple and moisturized is going to key to comfort and help keep my follicle beds healthy for re-growth.

If anyone has any advice or can direct me to an existing thread on the topic I'd appreciate it

Trishyla

I was told by a very experienced hairdresser (my sister) not to put anything on my head that wasn't meant for hair. Nothing that isn't an actual shampoo or conditioner. That's because it's still a scalp, even if there's no hair on it. I used a mild shampoo (Burt's Bees Children's shampoo) but no conditioner. Worked for me.

Another thing you'll want to do is get a soft cap to sleep in. My poor, bald head got cold at night😁

It's very traumatic to lose your hair, especially if it's long. Many women, myself included, clip their hair short as soon as it starts falling out. Some cancer centers offer that as a service along with a wig consultation with a professional hairdresser.

Good luck, TuesdayStar. The next year or two will be tough, but doable. You've got this!

Trish

Hazel-Nut

TuesdayStar - I use Aveeno baby soap for my head and moisturize my scalp with fractionated coconut oil. I was initially using Aveeno daily moisturizer everywhere else but the further I get into treatment (Just had Taxol #3 yesterday) the worse my skin is getting so I've switched to using Eau Thermale Avène Xeracalm A.D Lipid-Replenishing Cream that I order from amazon. It's kinda pricy but has made a night and day difference with my skin. On days where I have a lot of time before getting dressed I'll start with a layer of fractionated coconut oil, let that absord in for a half hour or so, and then do a layer of the Xeracalm cream and that makes my skin fee super nice. Usually I'm already running late for work so that only happens on the weekends lol.

kber

Hi Tuesday.  So sorry to welcome you here.

I echo the need for sleeping caps.  Soft and smooth, but also in different weights.  I have a couple of lovely velvet lined caps and a few lighter cotton ones.  Heads get cold, but not always at the same rate!  I also got a couple of satin pillow cases for nights when I'm too hot for a cap.  Amazon has a bunch of options and price points.

I got a (way too expensive) wig, which I've worn exactly once.  It's pretty and fits nicely, but I've found I'm more of a funky had girl.  In retrospect, I wish I'd saved the wig money and invested it in skin care products.  Staying moisturized is key for all of your skin right now.  And, psychologically, I find doing something that makes me feel pretty is, well, nice.

Have you started chemo yet?

TuesdayStar

Nope, I still have testing to finish up over the next 2 weeks then chemo will start. I am definitely shaving my head BEFORE I start because there is no way I am watching my long luscious hair fall out

kber

So two things I'm glad I did before chemo started.  1) get my teeth cleaned and 2) get a pedicure.  I was discouraged from doing either while I was actively going through chemo because of the risk of bleeding and infection.

I called my dentist and played "the C card" to get a last minute appointment.  It turns she did her internship working with chemo patients and was a wealth of good information about mouth care.

Flynn

Welcome Tuesdaystar! Sorry you're here but I hope you have a smooth ride. I had 6 yo twins when diagnosed and it was hard but we all came thru ok (especially with mine in school). On your questions about hair/skin. I really didn't do much to my scalp and hair came back fine. I tried to keep skin moisturized but I will say that during treatment my sense of smell was off the charts and some lotions really bothered me. You might want to get samples and try them out after you start to see if you find them tolerable. I remember that I liked aveeno b/c it was gentle with very little scent.

Kber- hello. I did most of my treatment in FL so I struggled with very different head covering issues as FL in summer is extremely warm! I did get a wig that was attached to a baseball cap and I found that so much more comfortable than a regular wig!

As to me, I'm having a big week. I got cleared Wed for my last cycle of Xeloda. It's gone so much faster than I expected! Side effects very manageable but i've been sick constantly since Dec. Can't wait to give my immune system a break. Mon I got my surgery date for bilateral diep flap. Need to gain a couple more pounds but PS was pleased that I ate quite a few Christmas cookies:). My 2 year cancerversary is coming up on Valentine's Day. I'm happy and unsettled all at once. Feel very fortunate to be this far but thinking a lot about when this all started and anxious about impact of another surgery on my family. I guess this is how it goes. Cheers to all of you!

santabarbarian

Flynn I am happy the Xeloda has been tolerable and that you get a break now!

Flynn

Thanks Santabarbarian!

VLH

Tuesday, like the others, I'm sorry that you find yourself a member of our "club." Do know that this group will be a good source of information and emotional support.

Regarding skin care, I often relied on coconut oil on my hands and feet at bedtime with cotton gloves and socks to protect the sheets. Oncologists are generally very proactive about queasiness now, but you may find yourself a bit more sensitive to fragrances. I used Aquaphor if I wanted something super moisturizing, but unscented. I know some people avoid petroleum products, but it was a huge help for super dry and / or irritated skin. For skin elsewhere, I used unscented Aveeno or some Honest lotion I got in a gift basket. I think that's the right name...Jessica Alba's company. I also temporarily moved to a gentler facial cleanser and switched to Dove bar soap in the shower.

I'm a rather ornery, independent sort, but, in retrospect, wish I'd been more willing to accept help. Learn from my mistake in that regard. ;-) I echo the hopes that your chemo treatment goes smoothly.

Lyn

VLH

Flynn, I'm glad that you get a break.

Kber, good reminder on the dental cleaning. I had some issues that made my treatment drag on longer than expected so I was glad that I'd had a cleaning right before my diagnosis.

HopeBry, great news on no nausea. Oddly enough, the part of the infusion that made me feel sick was the pre-treatment portion. Gosh, I'm trying to recall...would that have been Benadryl and steroids? Once they slowed the flow rate, it was alright. I hope your remaining sessions prove equally tolerable.

Lyn

santabarbarian

Tuesday Star,

What I think helped my skin stay healthy (among many other benefits) was doing the Fasting Mimicking Diet prior to each chemo. I never developed any skin, mouth, or nail issues. No neuropathy. I credit the fasting. Fasting tells healthy cells to go into a quiescent self-protective mode, so their uptake of chemo is less, and yet it stresses the cancer cells so their uptake is more. FMD was developed by a doctor at USC. I ate very carefully the rest of the time. You can look up my post on "Member's Stories" on the TNBC Forum if you want more details. Doing this, I had very tolerable SEs; mostly just fatigue.

After doing nothing protective for my hair on my first chemo, and then not wanting to spend the $ on the various 'systems' after blowing it on chemo #1, I did a homegrown version of cold capping, using some migraine freezable caps that I bought on Amazon, four for about $200. My hair still mostly fell out, due to chemo #1. But some of it never fell out... and at 9.5 weeks PFC ("post final chemo") I have re-grown a thick brushy brush cut that looks pretty good. Most of my chemo mates who stopped chemo when i did are still just five o'clock shadow... So I think that might have helped me.

The week following a chemo is a time to go really light on yourself, particularly (for me) days 3,4,5,6 range. If you can set yourself up with rides home for kids, or playdates, or someone bringing over dinner, or a helper in your home on the days you need help, it will benefit you a lot to be able to rest. If people ask how they can help that's the sort of thing you can ask for.

A4ggy

Hi Everyone,

I haven't posted in a very long time. I am trying to catch up. I'm happy to hear so many people are doing well. I do recognize some names from when I used to check the boards often. I took a break for a while as my anxiety was a bit too much. I love getting new info,but I also find it overwhelming. I hit the 1 year from surgery on January 29th and have been doing well. I am still interested in clinical trials and doing all I can to make sure this sucker never comes back. My doc mentioned this trial to me and I was wondering if anyone is involved in it or knows anything about it? Thank you for any info anyone can provide.

https://www.clinicaltrials.gov/ct2/show/NCT0301210...

Also, I have been hearing about the PDL1 testing and my tumor wasn't originally tested for it. I also asked my doc about it and she said it wouldn't have changed my course of treatment and is usually done when people are enrolled in a trial? I still think about going back to my original tumor they tested and seeing if they can test it for anything else. However, I'm also totally scared about further testing....

I hope all is well with everyone. )

Anne