Calling all TNs
Comments
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Thank you Cocker Spaniel for posting this link. Since I am (as many of us are) afraid of recurrence, it's good to know something new and helpful has been discovered. Like the article said, the choice of chemo drugs for TN s is sort of a haphazard process.
Hugs to everyone, especially those currently in treatment!
Peggy
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Hi
I just want to check in with all my TN buddies. I hope everyone is doing well. Shari, I think about you all the time. I have been called a "witch," ---a good one---and I am getting good feelings about you. You Got This!
Mommom---thank you for remembering me. I was out of my mind those first 2 months between dx and sx. This group saved me! I am 1/3 of the way thru TC chemo, and have been Very Lucky with the SEs. Metal mouth, food tastes crummy, but I still eat like a horse. My labs have stayed normal, and my family and friends are so supportive.
I am kind of dreading recon sx...but it has to happen, and I am trying to gear up my attitude. Leaning towards DIEP for the left and reduction of the healthy right. I am thinking I should get it over with as soon as I am cleared from chemo?
I am so bad with names and typing, but I read every day. Thank you all so very much for being here. No one understands what we are going through better than US! I am trying to maintain a positive attitude. I actually try to look for the good in chemo. No leg or pit shaving, getting ready is so quick and easy, I have 3 different hair colors and styles! And I am so lucky that I had accumulated so much sick time, that I don't have to expose myself to sick children at work. AND it's Spring!
My thoughts and prayers are with all of you, and I send Hugs for every day!
Love, arlene
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Arlene, thank you, I truly believe some people have a gift so I will hold onto your prediction for me tightly! So glad to hear your SE are minimal. I do catch up with you on our April chemo month.
Hoping everyone has a great week-end.
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Ladies, I haven't posted here in a year, but I wanted to broadcast the happy news that I am now 5 years post diagnosis and surgery. My fine Oncologist at Sloan Kettering told me last fall that she no longer needed to see me. I still get an ultrasound yearly, and a mammogram, six months apart, but I consider that I am cured.
This is a hard and scary road, and I send love and good wishes to each of you.
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That is wonderful! Just the kind of news I need to hear right now. :-)
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Mitymuffin so good to hear from you after all this time. Missed that smile. 5 years out wow. Good on you girl, make sure you keep up with all that good living.
ninjamary maybe the girl who spoke only about herself is just underneath plain shit scared. Maybe she has read too much crap off the internet or perhaps her doctors have not made things as plain as they could be. She could have been trying to make the newbie feel better about losing her hair because I do know two people who did not lose their hair during chemo, unusual yes but very lucky. One meeting is not enough to get to know someone and she may need this meeting more than you know. Try to cut her a bit of slack until you know her better, she may be really nice deep down.
Just thought I would throw in here that regardless to what people think there is no stage 4. If you started off at stage 2 and have a recurrence then you are stage 2 with mets to lung or whatever, or if you started at 3a then its stage 3a with mets to ........ Hopefully this will take away the fear of a stage 4 just a little.
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CONGRATULATIONS, muffin!!!
Wonderful news!!!
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Mitymuffin that is such encouraging news! Yahooo, I hope your going to celebrate, thank you for sharing!
Cocker, your absolutely right. I should know how fear can change you- thank you for pointing out that one meeting is not enough time to judge someone on!
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Wow Shari what a beautiful picture. You look absolutely amazing.
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Thank you Annie, it was the first time I went out after my mastectomy, my best friend took me out for lunch, so I decided I would try my best to look normal. Last time she saw me was a couple days after I got home and was not looking too good- I think I scared her! Lol.
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Mitymuffin = YEAH YOU!!!!!!!!!!!!!!!!!!!!!! I want the same for all of us!!!!!
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Hello Mitymuffin,
I am just popping in to say congratulations on achieving five years.
I do not recognise many names on this thread these days, but I remember you from way back.
I am fifty - six days away from ten years since diagnosis!
Keep up the good work.
Fond thoughts,
Sylvia xxx.
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Like Arlene, I read everyday, but dont post as often as I'd like.
These boards are my source of comfort and inspiration and understanding.
I hope that those of you having SEs feel relief soon!
Shari, - hope you are feeling better about your course of treatment. It is surely a good thing that the choice of meds was made by a group of experts!
Mitymuffin, - thanks for your post! I hope we are all back here posting updates like that, too!
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Thank you for your congratulations and kind words on my reaching the five year mark of good health. I remember when I was taking treatment, , it seemed we rarely heard from women who were cured and healthy, and of course that is natural. They have gone on with their lives and breast cancer is in their past. These boards reach women who are in the hard part of this journey, but remember there are lots and lots and lots who have finished in good health and are back to normal lives.
Someone asked if I had radiation after chemo and the answer is yes. Treatment has evolved since my time though and I don't know what is recommended and cutting edge now.
My Oncologist at Sloan Kettering was adamant about two things: exercise and no alcohol. She also always checked my Vit D. level and I now take about 5000 units of Vit D. daily. I admit I've slipped back to a few glasses of wine a week, but she really doesn't want me to have more than one or two glasses weekly.
I also was in a clinical trial and had Avastin with my chemotherapy, which is now considered too dangerous to use.
I think the data continues to come in about the benefits of exercising for breast cancer. My Oncologist from the beginning encouraged me to exercise, and I did Spin Class and walking and other exercises throughout treatment and afterwards. Sometimes it was so hard to do the exercise that tears would roll down my face, and I might spend the rest of the day on the couch resting, but I continued and believe it is important. I felt like I was sending a message to my body.
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Hi mitymuffin
Thanks alot for posting here and congratulations on your reaching 5 years.
I pray and wish for you to reach your 10,15 ,20 and more year mark and be always healthy and happy.
Lots of love
Hanieh
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Loving reading these long term survivor posts! You ladies are amazing! ALL OF YOU!
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Congratulations, Mitymuffin!!! That is absolutely wonderful news!!!
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Mitymuffin, Congratulations!!!! So happy for you!!! Thank you for sharing this wonderful and encouraging news.Paula
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MomMom, - I meant to respond to your earlier post sooner. I am sorry that you had a scare and another biopsy, - but I am so happy that your results were good!!
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yes!
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Thank you both. I feel very grateful.
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It has been 6 weeks since my last trim, and I'm on the fence about whether or not to get another for the sides and back primarily. It s back to growing fast like before, but still soft, baby-like texture. Lago, I hear you on the year+ for changes there. Still have those unaccustomed curls in the front, but like them!
Getting comments that short hair suits me and makes me look younger from a few. Lago, I remember you decided to keep yours short post chemo and it looks really cute. Why made you decide to stay short? Are there others who did the same?
Thanks, Paula
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Mom, I have kept my hair in a pixie since it started growing back last year. I always had a lot of red hair, curly, wild, big hair! but I love love my short hair. I can get ready in ten minutes from shower to out the door.I get compliments which makes me smile inside and out. If you even think you will like it, you will. Are you on pinterest? I did a search for pixie haircuts and saw several I liked and went from there. Just my thoughts,you look so great!
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Meadow= I am keeping my pixie cut. I am getting it shaped next week. Like you a breeze to shower and get ready. I get so many compliments by people I do not know about my haircut. Chemo cut.
Mine came in white and I dyed it dark brown. It turned blond. Crazy but,I like it.
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eileen, Im glad for you! mine came in white ish, I am keeping it that way I guess, miss my red, who knows may have to go back to it one day!
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Hi everyone.
So good to hear from so many on here with updates, good healthand tips. We are part of a great community!!! 😊
I thought I would share in case anyone on here runs into this they will know what to do. After 4 long months this terrible infection has been identified as a soft tissue surgical site mycobacterium Fortitium. I will be on 2 oral antibiotics taken 2 times a day for 3-6 months
. Also, I will be having a pic line placed on Monday to receive oral antibiotics for 3-4 weeks along with the oral ones. Not looking forward to being on 3 antibiotics but this regime should kill this thing once and for all. Dr said reconstruction can begin again probably in December. Please pray against any side effects present or in the future from these drugs. I'll keep you posted as time goes on.
Love, prayers & hugs
G
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SA8, while I know that is REALLY unpleasant and pleased they finally found out what it is! Prayers for a speedy speedy recovery!
MomMom, I say stay short: the cut looks super on you. Mine has been shoulder length. No where near going without a wig: I kept it from my staff since September: but when out of town I go without and feel so free
K
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MityMuffin congrats on the five years!!!!
Mom, I've kept my hair really short too because it's so much easier, I have cowlicks and get hot flashes at night, and the hubby likes it short so I get it cut once a month.
SA8, so sorry about the infection! I hope you take probiotics since you'll be on antibiotics so long. Antibiotics are very harsh on the gut. You're in my thoughts and prayers.
To all of you in treatment, hang in there! I think of everyone here everyday and pray every night! I read often but haven't posted as much lately. I do keep up though. I have my three month checkup May 11th so please pray for me.
Just had my 39th birthday last weekend. We spent it in Myrtle Beach and had a good time.
(((((HUGS))))) to all!!!!
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SA8AG, I hope the antibiotics do the trick for you. Thanks for the update.
Here's a very encouraging clinical trial for TNBC using immunotherapy on Stage IV.
I hope we continue to see more things like this!
Now, about hairstyles. I've always had very short hair. After chemo, I thought about growing it longer. It was cute while it was curly, but as it started to straighten out, it just started looking like a mess. I tried a stacked bob for a while, but my hair still had too much wave from the chemo curls. Last week, I got it cut really short like I used to wear it. The chemo curls are gone and I'm happy each time I look in the mirror....I have my old me back. Like Meadow, I love being out of the shower and ready to go in a matter of minutes. I hated being bald, but it sure did make getting ready faster.....and kept my bathroom a lot cleaner too! Now I'm back to sweeping up hair each time I use the blow dryer. I'm just grateful to have hair so I'm not complaining. Everytime I see a loose hair of mine on the floor or on my clothes, I just smile and remember that I'm fortunate to be here and to have hair.
Kay
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Hi ladies! Sa8, sending prayers that you will fly through this course of antibiotics and feel much better quickly!
Luv, a belated VERY HAPPY BIRTHDAY!!! I m so happy you were able to celebrate with good times- I really hate when family/Friends complain about birthdays. I feel so fortunate to be able to celebrate them now!
Simple, I have to smile with your comment on finding loose hairs! Now that I'm on chemo again I've been warned that I may loose my hair or it may just thin. My hair came back from chemo the first time, as the hair I always wished I had! Straight and thicker and I love the colour. It's the first time in 25 years I haven't coloured it. If it starts to thin noticeably, I will get it cut short with layers. If I loose it- well I've done that and know it doesn't define me so I'll deal with it.
MomMom, I agree I think your hair looks great! You have such an amazing smile- it's infectious ;-)
Meadow I love your hair also, it suites you!
Allydp, thinking of you, how are you feeling?
anotherNYCG. I'm still not 100% sure about my tx. I have my MO apt on wed and have some questions. Hopefully she will take her time in answering in a way I feel better about my tx, thank you for asking!
Sylvia Is tomorrow your BIG TEN? Let us all know so we can celebrate with you!!
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