Calling all TNs

Jianchi

can't see the thread for some reason now. No pages.

Meadow

Thanks Jan and thanks Jia for trying. She has had encouragement and advice to contact her mom's team, I just worried for her when I thoughther thread slipped thru the crack unnoticed. I knew the Mods and this thread would respond 'cause we are just that way!

JAN69

Meadow - No, I thank you for reaching out to her. You are in my "best person circle." Jan

Jianchi

Hi Meadow,

The thread back to normal now. :-). Thanks.

Meadow

I am curious if anyone has noticed whether nail polish on your toe nails has any effect on your neuropathy. I have moderate neuopathy from chemo, finished a year and a half ago. Some days worse than others, as you probably know. This will be my second summer post chemo, and I traditionally like to wear polish on my toes in summer. It is getting to be sandal weather, and I am wondering if anyone has noticed if polish has any effects, neg or pos. I cannot imagine my feet without the perky pop of color! As I type that I am reminding myself that I couldnt imagine myself without nipples either....

Beachbum1023

Hi Meadow, I too love the bright bold nail polish colors on my toes for summer. And as soon as the rest of my toe nails grow back from Taxol, I am going to go bright red. I just hope they grow out enough, I am about half way there. Ugh, it's sandal season, damn chemo!

Spica16

Naw, Meadow...go for the pop of color! Afterall, "when there's a shine on your toes, there's a melody in your heart" (well, close enough...my apologies to Fred Astaire), and that may help you forget about the neuropathy for a while, and enjoy a carefree summer. I have MS neuropathy and wear nail polish with no problems, although I'm a clear polish kinda gal - mostly because I make a mess of it. Just be careful wearing sandals or going barefoot if your feet are numb - it's so easy to stub your toe or even stumble when you aren't getting the proper feedback (proprioception) from those numb feet. Other than that, have fun Twinkle Toes!

Curlyq1974

Hi ladies!  Looking for prayers and thoughts - tomorrow going back under the knife and I'm a bit anxious to say the least.  Going to place a tissue expander on my right side again and hope that this time my body doesn't revolt and accepts it as part of me.  And we are removing my port, and I know this is crazy but I am more worried about the port than the expander!  I have come to love my port!!  Crazy,  I know.  It has been a life saver multiple times since it was placed!  I know - it is crazy!!  So if you would, think of me tomorrow.  Surgery is at the crack of dawn, which is good.  Means I won't get a caffeine headache!   Thanks bunches! 

~Janet

slv58

Curly, you are in my thoughts and prayers for an uneventful quick surgery!

Teka

Curly,

Meadow

Spica, thanks for the advise and the smile!

Curly, prayers for you!

jenjenl

curly...good luck, i have a good feeling. xo

ALHusband

My wife works at a hospital. She shared with me that she was having a casual conversation with a doctor (not HER doctor) at work. When she told him she had had BC, he asked if she was taking Vitamin D (which she is indeed). He went on to tell her that "when you have your Vitamin D checked, there is a 'normal' range. The 'normal' range for everyone else is NOT the 'normal', 'acceptable' range for YOU." He told her she needs to always be at the high end of the range. For example, if the normal range is 30 - 100, she needs to stay way closer to 100 than to 30. She said he said it with such a great deal of passion that it made an impression on her. She said he sounded as if he were giving her urgent information. Just thought I'd share that.

Luvmydobies

Curly, I'll be prayin for you!! You'll be fine! HUGS

BanR

prayers and wishes for you curly!

many wishes for your wife alhusband...this september, i should be completing 2 years too. That reminds me, will get my vitamin d levels checked.

jianchi..good to hear from you after a long time..say hi to your little boy from my side!!

meadow... even i had horrible neuropathy but it got over with time and yes i used nail polish too. nail is a dead organ...painting it shouldnt effect the nerve endings underneath the skin.

love and good wishes to everyone else..

JAN69

ALH Thanks for info. I'm off to see if I can find my vit D levels. Jan

eileenpg

Alhusband=  I am taking vit d however,had not had it checked for some time.  Checked it prior to taking vit D. Thanks for the advise.

Curly=Hugs from me. Only the BEST!!!

Meadow= Polish those nails and have fun. I am going to start polishing mine too. I have given up manicures and pedicures. I am too afraid of getting a cut and it turning into a infection. I have such trouble with my WBC counts. So, I am going to pick a great color and just do the best I can.

Meadow

will do Eileen!

anotherNYCGirl

Sending BE WELL vibes Curly! (and to everyone else here, too!)

Re Vit E, - my onc saw suggested taking 400mg a day, but i have 800 in my calcium pills, yet seems my #s are still low. Will see what she advises next week when I see her.

Lisaj514

re:vit d, I take 5000iu of vit d. My level was 93.4 in jan of this year. Backed off to 4xwk now that it's getting nice out. Glad to hear this is still thought to be a good thing. When the nurse at my pcp office saw this she felt it was too high but then I explained what I knew about vit d and tnbc. She said not to go over 100.

NYCGirl, you can take more than 800iu. That's a drop in the bucket, especially living in NYC where there hasn't been mych su

Beachbum1023

The last time I had it checked in December my vitamin D was 25.1. I am taking 1000 per day now. It will be checked again in July at the next appointment.

ALHusband

My wife's Vit D was 17 when she was diagnosed. She now takes 6,000 iu/day. Last check she had done a few months back it had gone up to 53. I'm hopeful, and fairly confident, it's going to be higher when she has it checked in June.

DizzParkMom

Hi! I am Heather. 40 year old wife and mother. I was just diagnosed 9 days ago. We are flying from Arizona to Cancer Treatment Centers of America in Illinois on Sunday Morning. Every day is a new day filled with so many emotions. Numbness, Fear, Sadness, Guilt, Anger....I keep trying to squelch these by concentrating on the fight ahead. I'm putting on my game 'face' today. An AWESOME stylist is taking my long red mousy mom ponytail and turning it into a short spiky black/pink/blue kick butt and take names hair do. I know that over the coming months, it could all end up on the floor anyway, but for now, I feel like a warrior. Cancer might end up taking my hair, but today, I am still in control and calling the shots. If I should be blessed enough to keep my hair, that's cool too. I look and feel awesome and empowered!

eileenpg

Dizzpark= Welcome to the club. Sorry you are here but,it is a great place to come for a wealth of information. Best of luck. Hugs from me

simplelife4real

Curly, I hope your surgery went smoothly today and that the expander doesn't cause problems.

Dizzy, I'm sorry to hear about your diagnosis. You were smart to get your hair cut. I hope you enjoy the cut at least for a while. The first few weeks after getting diagnosed are tough because there is so much information to absorb and reading about TNBC can be scary in the beginning. I had someone be my "offical researcher" in the beginning because things on the internet were freaking me out. After a while, you will adjust and things won't be so scary....it's hard to believe in the beginning, but it is true! This is a great place for support. I'm glad you found us. Wishing you the best.

I agree with other's comments about wanting to be on the high end of the Vit d range. My MO checks me each time I go. Last time, I was at 85. I take 5000 units a day, but if I'm outside a lot, I skip the vitamin d for that day. Too much vitamin d has been linked to an increase risk of stroke so there is a "sweet spot" for us TNBC ladies. I try to keep mine between 80 and 100.

LNBCA

Hello ladies, just dropping in to say hello. I still think of everyone that helped me with questions concerning my Mom a few yrs. ago. She's still doing great, aside from hip pain, which is caused from all the chemo. She just had an appt. with her Onc. on Wed. and all was well. Had my own little scare on Wed. after my mammo. I had a missed call from my sister, who works at the office where I get my mammograms done, and my Dr.'s office, just a few hrs. after my appointment. They saw a little something and needed additional images so I had to go in yesterday for another mammo and an ultrasound, thankfully it turned out to just be dense breast tissue. I hope everyone is doing well.

Beachbum1023

LNBCA - thank you for dropping in with great news! I am so happy that you are both doing well. It is so helpful to hear from you that it is possible to get past this. I hope I come back here in a few years, but in the mean time I will do what I have to so that is possible. Have a sunny weekend!

SizzleStitch

Hi everyone. My names is Kathi. I am 60 years old. I was diagnosed in early November but because of all the tests and the Holidays, I didn't have my surgery until January of this year. I had to wait again to start chemo until March. All the waiting was the worse! Thought I'd go out of my mind.

I have my 3rd of 4 treatments on Tuesday...I dread and at the same time look forward to it....at least I only have one more after it....but it seems I have different SE each time. Last time I had the worse neck pain on the right side for 9 days. I thought at first I had put it out of place but Tylenol nor aspirin helped...Then it just went away. It may have been from the Neulasta shot. I had been taking Claritin though. Didn't have much pain at all the first time.

I may have missed it but I haven't read that anyone here does the icing of the hands and feet during the Taxotere. I am sure hoping it is helping me as far as neuropathy and my nails go. I am diabetic also so really have to take precautions. I also use ice face masks to help with not losing my eyelashes and eyebrows.......so far, so good.

I am also wondering about the vitamin D. I was taking it before my diagnosis and was told by my MO to stop ALL vitamins before chemo. I will have to ask about it next visit.

I had very long hair and had it most of my life...I was hoping I wouldn't lose it but when it started falling out in handfuls, I asked my husband to shave it off. I cut the remains of my ponytail off first to save it :-). I am wondering if I should have shaved it though as I have numbs all over my head. Anyone else have this happen? I guess, I will know if it falls out again...

Heather, it will get better once you have a plan. Just put one foot in front of the other and definitely take it one day at a time.

Curly, I hope things went well for you.

Everyone...thanks for being here. It does help to hear from others in similar situations.

Well, I have rattled on but wanted to introduce myself. I will do my best to keep up with everyone but will have pretty bad brain fog after Tuesday. Writing becomes very difficult.

Meadow

Kathi, welcome to the group! I am glad you are tolerating chemo, hang in there. Thinking about your hair, I buzzed mine down with clippers, I did not use a razor, the nubbins were short and fell out on their own. I rather did like being bald, hope you are ok with it. My best to you

SizzleStitch

Thanks Meadow. I do feel fortunate that I haven't had too bad of SE. I hope I can say the same after Tuesday. I am so anxious to have the treatments over with as I am sure is/was the case for everyone....

I am dealing with my lack of hair. I do wish I hadn't had my DH shave it down all the way. I have lots of scarves and a couple wigs. They are all so hot. I live in South Florida and it in the high 80's. I get home and rip off whatever I am wearing on my head and put a cold washcloth on my head for awhile LOL...

By the way, I always keep nail polish on my toenails but I don't on my fingernails...maybe I will be a good test for whether it helps or not?? I do ice too though....

Kathi