Calling all TNs
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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
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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
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What does AR stand for?
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Androgen Receptor
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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.
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oh, TuesdayStar; I wish we didn’t have to welcome you to this party.
Thinking of you and your babies.
X
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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!
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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
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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
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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.
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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?
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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
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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.
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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!
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Flynn I am happy the Xeloda has been tolerable and that you get a break now!
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Thanks Santabarbarian!
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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
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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
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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.
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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
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Flynn, glad to hear you will have a break. How many cycles of Xeloda did you end up having?
I'm on a 3 week break after radiation and then starting Xeloda soon. I'm not looking forward to feeling sick again.
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Vlh- you're doing well!
A4ggy, before I signed up for Xeloda, I looked around for a trial and I remember printing out that vaccine trial. I believe that my MO did not encourage me because of the amount of AC that I had received. She was worried about too much toxicity from that family of drugs. If your MO recommended, it's probably not a concern for you.
HockeyChick, I just started my 8th cycle of Xeloda. Originally my MO proposed 4 cycles and then when I tolerated it well, we decided to go for a full 6 months or 8 cycles. I was really not thrilled about Xeloda but it went fast and I was able to keep up my life. Good luck! Please let us know how it goes.
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Anyone's doc order testing for CA 27-29? Apparently it's a breast cancer tumor marker that can 1) maybe predict early reoccurrence and 2) monitor response to treatment.
Most of the information on line references the test in conjunction with metastatic cancer, which, to the best of my knowledge, I don't have.
For what it's worth, my results were "normal" / not elevated, which I seems like a good thing.
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kber, are u braca positive?
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hi Urdrago. No I am not Braca positive.
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santabarbarian, I'm interested in your diet suggestions
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I wrote down what I did in detail on the "Member's Stories" thread in the TNBC forum and in my August 2018 chemo group postings. You can find details if you search under my user name.
I consulted with two integrative oncologists besides my MO and wound up doing a largely vegetarian ketogenic diet with small amounts of fish and other animal products (NOT Atkins style, w three cheeseburgers a day!). I began the Fasting Mimicking 2 days prior to chemo, till 2 days post chemo day, & when hungry again, I did brief rebuild diet which included some healthy nutrient-dense carbs (like lentils, quinoa) for that first 7-8 days after chemo. Then back to Ketogenic-veggie-pescatarian, till next fast.
I am not a doctor, and YMMV, but I used Dr Valter Longo's "Fasting Mimicking" approach coupled with mostly ketogenic and anti-cancer-recurrence principles for regular eating. I used Dr Keth Block's approach. He is the integrative MO I consulted with and all his diet rec's are in his book and online, w the studies and citations he bases them on. His book is "Life Over Cancer."
Basically the people with the lowest recurrence rates tend to eat less than 20% of their calories from fat, and not too much dairy (inflammatory), and basically lots of above ground veggies, nuts, avocado & healthy fats, and low carb fruits (berries). Organic wherever possible.
I dropped booze, flour and sugar, rice, & potatoes. On a low carb diet, after 3 weeks or so, ketosis happens -- instead of sending glucose from carbs to feed the cells of your body, when carbs are restricted your body switches over to breaking down fats into ketones. Healthy cells will do fine using ketones for energy, but cancer cells do not thrive on ketones.
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Hello everyone! I just wanted to come and say I had my one year checkup on Monday. It’s been six years since I was diagnosed and all is well! I’ve been working out doing weight training with a personal trainer four times a week and she’s also a nutritionist so she has me on a good diet and I’ve never felt better in my life! She’s awesome and I owe so much to her! I’m getting stronger physically and mentally because of her. I’m finally not thinking about cancer every single day!!
All that said, I am having some marital problems. My husband isn’t happy with his job because he feels like he isn’t appreciated enough, but really, it’s because he has to have tons of praise and he’s upset because his boss isn’t kissing his butt! He went behind my back and talked to another guy about a job and it involved moving and it was with a different company with less benefits and way less retirement than he has now, so I told him no way am I moving after finally finding some happiness of my own. The job has been filled with another guy, but my husband still wants to move somewhere else. I’ve ALWAYS given in and moved WHERE and WHEN he had wanted, and frankly I’m tired of building new houses and moving every two years! So if he doesn’t stop only thinking about himself I’m not sure what will happen! I am proud of myself for staying strong and finally standing my ground though!
Sorry, just had to vent!!
Hang in there ladies!! I never thought six years cancer free would come this fast but it has and for that I’m extremely thankful!! XOXO!!
Thanks for listening
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Hi Luv! How good to 'hear' from you! I am so glad that you are feeling and doing well! I hope that you and your husband find a way to both be happy. I do remember your last move, and although you were so reluctant, you made it work. Is your husband open to speaking to a mediator/counselor? Perhaps someone, other than you, can help him to adjust his attitude about his job, and also see the effect on you of his frequent moves. Don't stress, - be good to yourself and most of all, - STAY WELL!
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Hi All, I was TN in 2003 at the age of 35 and for the last 15 1/2 have been doing good until December when I was diagnosed ER+ PR- Her2-. This is not a recurrence but a new BC.
Anyone know of someone that had TN and after 10+ years get diagnosed with ER+ or more specifically ER+ PR- Her2-? Having a hard time finding someone that has had the same BC as I have.
In 2003 I had 4 rounds of AC and radiation along with Lumpectomy and was Node negative. Last month I started 4 rounds of taxotere cytoxan prior to a double mastectomy. So far the TC has been much easier than AC. Plus I started treatment being much healthier than last time. Last time the stress made me gain about 20 pounds from finding the lump to diagnosis.
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