Calling all TNs
Comments
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Jen sounds like the nextfew days will be big fun
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I've been lurking for too long and BanR has shamed me into checking in. My life is pretty boring. We live in a remote Sierra foothill area, so not much goes on here. We had no snow all winter and barely any rain. Yesterday it snowed and rained! Yeah? Our pond is still just a mud puddle. Dreading summer as everything is dried up already and the wild fires have started.
I thank God I still seem to be NED after 4 years. My new (to me) MO has had his 3 strikes out with me. Visit 1: I felt very cared for. He sat down at my eye level and we talked for 45 minutes. Wonderful. Visit 2: Visit started with me complaining about Lymphedema. I was fully dressed and no exam yet. He said I don't have lymphedema and couldn't understand why I was wearing compression garments. Visit 3: Told me he never heard of taking Metformin or the Metformin study. Fired him.
From my quick reading, it looks like most of you are doing well. That's so wonderful. I'm just so sorry so many new members have a need to join. Delighted that Tom has a new healthy baby and the new family is doing well. Nothing like a new baby to warm the heart.
Wishing everyone health and energy and happiness. Jan
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TEKA= UGH!!!!!!!!!! Come to Florida!!!0 -
Hi Everyone! Just to say Hi. It's been a while. Hope all is doing well.
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Hi back at you Jia!
Ladies, there is a thread started by the daughter of a TNBC patient that is new to the forum, the daughter posted under the name ....veryDisappointed...., she seems young and is looking for info or feedback on her mom's fungating tumor. I do not have a response for her other than to offer encouragement, if any of you do have anything you can offer her please look her up by her name. Thank you so much
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Eileen you are such a sweetie
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can't see the thread for some reason now. No pages.
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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!
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Meadow - No, I thank you for reaching out to her. You are in my "best person circle." Jan
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Hi Meadow,
The thread back to normal now. :-). Thanks.
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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....
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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!
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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!
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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
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Curly, you are in my thoughts and prayers for an uneventful quick surgery!
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Spica, thanks for the advise and the smile!
Curly, prayers for you!
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curly...good luck, i have a good feeling. xo
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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.
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Curly, I'll be prayin for you!! You'll be fine! HUGS
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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..
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ALH Thanks for info. I'm off to see if I can find my vit D levels. Jan
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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.
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will do Eileen!
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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.
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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
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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.
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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.
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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!
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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
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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.
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