Calling all TNs

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.

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 - great you are hanging in there!

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

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..

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

What does AR stand for?

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.

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!

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

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?

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

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

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.