Calling all TNs
Comments
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Shopgal, rads are very do able...I know many people work through the rads treatment. You do get crispy at the end...so you would have to have some careful wardrobe planning. And yes there is fatigue, but not like chemo. And the treatment is super quick...after you are charted and tattooed, the actual treatments are like 15 min....in and out. I waited about 6 weeks to start, as I had chemo, then surgery, had to heal, then rads. I do not think it is recommended to wait an extended time.
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thanks meadow. It's good to hear from gals who have been tnru this I still feel like such a newbie to TN. I am a size DD and worry about burns on my reexcised boob. My lx scar is at 5-6 o'clock on the underside of my boob and sits close to my chest wall. I asked ro about 3-4 week Canadian protocol but with TN she feels we need to hit it with the full 6 week 30 sessions whole breast. Anyone do rads a month after ending chemo and what was it like? How tired do you get? How long til I get my stamina back? It's like my mind wants to do things and my body can't always keep up. Or when I can I overdo it and am exhausted.
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rads is a walk in the park compared to chemo. I started a little less than 4 weeks after chemo. I had a hysterectomy in between. I had an increase in energy during radiation but the last week i was tired. Then once complete each week i got stronger.
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Hi Ladies (and the few gents!)
Not posted for a while, so just checking in to say hi. I hope everyone is well or as well as can be expected.
I was briefly over in the States last week, in Orlando for the ASH conference. Was so warm compared to London!
http://www.cancernetwork.com/asco-2015-breast-canc...
This was brought to my attention on the "calling all TN patients in the UK" thread and I think this is worth sharing here. Its some data presented at the recent ASCO meeting. Its looking at using a drug to lower copper levels and although this is data from a small study, the results are very interesting and I think rather promising.
Love and hugs to all
Tom
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Checking in to see how everyone is doing and offer words of encouragement. I am approaching the 3 year mark. I did have a secondary cancer unrelated to tn and beat that too, last winter. I am feeling pretty good and enjoying feeling normal, trying to keep it together for the holidays, so happy this winter is going to be milder. Last year was hell.
Shopgal2 - The chemo was horrid but I found myself feeling pretty decent for the rads. You could try working for sure. Better to not give that job up if you can and squeeze out some more insurance coverage and other benefits. Try to get an early AM appointment for the rads so you can get it done and then go to work. Remember to use your creams as soon as you are done in the dressing room to help with the burning. Can you sit around topless at work with a fan blowing on you? That would help lesson the burning. Look for the radiation regiment video before you start.
Feel free to PM me if anyone has questions
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Hello to All,
Yesterday I was officially pronounced 3 year Cancer Free!!!!!
I feel so blessed. Having to stop the chemo I was always so worried. I decided to quit worrying. Go out and live a little. I exercise, I do my yoga & I have hobbies. I feel blessed every day and I thank the Lord for it. Oh I have my down times as a matter fact I've got a scheduled counseling meeting but that issue will soon be put to rest I hope & pray. I read about every other day all you all have said. I don't post much but I continually pray for all of you, for your health and well-being.
May we all have a joyous Holiday Season, no matter what your holiday is. And a very Happy New Year to everybody. God bless!
Marsha
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QueenKong and Marsha, so glad to hear from both of you! Gives many of us going through this currently some hope
breastcancerhusband, your link to the study caused me to go into a frenzy yesterday. I think I've googled almost everything I could to learn more about this study as well as ways to find and get prescribed copper chelators. Does anyone know of anyone that is trying to do this outside of a study?
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QueenKong and Lookingforward!
Wonderful news from both of you!
I am reading that we start counting from when we are diagnosed, so Big Cheers to you two
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QueenKong and Lookingforward, congratulations and thanks so much for letting us know how you're doing. Man, I'm definitely going to do that in a few years. I hope we'll all be doing so!
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Woohoo! Ready to move on!
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Congratulations, Julie!
You look Great
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Queen Kong and Marsha. Congrats on your anniversary and thanks for sharing this wonderful, positive news.
Julie - well done for making it through. What a Christmas present - no more chemo! What a great role model you can be for your sister.
Happy weekend love to everyone else. I hope that whatever stage you're at, you're able to find enjoyment and laughterin the weekend. X
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julie, you are freakin' adorable!
bluedog, did you update your avatar picture? so cute!
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Meadow, I did -- thanks so much! I wanted to show off my flowing locks.
By the way, I noticed that you and a few others who post regularly are several years out from diagnosis yourselves. Congratulations to you, too, and thanks for staying here to support and inspire the more recently diagnosed!0 -
Bluedog you are so welcome! I feel good...I want others to know good health and a new normal is to be had.To all going thru treatment...hang in there!
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QueenKong & Marsha a huge hug and high five on 3 year mark.
))))Julie I'm so happy for you. You look wonderful.
Arlene both you & bluedogs new aviator pics are so cute. Your hair is coming in wonderfully.
)))Tom thank you for posting that. I know we all appreciate you leaving no stone unturned to help arm us in killing the cbeast forever.
Well today I'm 5 days post op from the Diep surgery. It has been hard but doable. I had so many of you prepare me so I would know what to expect as each day passed. Either tonight or tomorrow I will be going home walking like a turtle but I get to be home so I'll take it.
Hugs everyone
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Julie, congrats on finishing chemo, I hope you celebrated!
Arlene, love your new pic! You look great :-)
SA8PG, I'm so happy your on the other side of surgery- each day things will improve. I'm still in awe of what they can do and feel it was so worth it!
Meadow, your always such a source of inspiration, thank you!
Marsha, great to hear from you again! Congrats on 3 years!!! Yeah
QueenKong, congrats to you as well, hope you two celebrated the special 3 year mark!
Tom, thank you for keeping us informed of new info (wish things didn't always seem to be so far off in the future)
Cocker and Luv, hope your both doing well!
Sorry if I've missed anyone, I'm trying to just live this glorious life and don't contribute as often. Guess there comes a time when I just want to put this all in the past but think of all my TN sisters with love and positivity!
Shari
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SA8PG, thanks!0
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Well ladies my nursing stint is over thank goodness. I take my hat off to all nurses. If I hear the call "Nurse I need a drink" once more I will scream. But my old feller is now on the mend since his hernia op and things are getting back into shape.
I have missed so many posts so welcome to all newbies but sorry you had to find us. Hopefully all of you are doing well and not having too many side effects.
I'm off to get my house straight again as had to bring a bed down from upstairs as the old feller couldn't manage the stairs.
Love to all and will catch up soon. Annie
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QueenKong & Marsha, way to go on hitting the 3 year mark. That's a huge milestone! I'll be there in 231 days.
(I actually have a "countdown app" on my phone that I use to count the days!)
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Simple, 2+ years is great, too. Congrats!!0
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Simple...I have the same time as you. I hope and pray that we ALL reach that milestone and have many, many, many more years of good health!!!
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Today I went with my wife for her regularly scheduled 6 month follow up appointment with her MO. All went well. Praise God. However, we were both shocked and saddened when the Physician's Assistant walked into the exam room with no hair! She too has been struck by this ugly disease! In the time span since my wife's last appointment, she (the P.A.) was diagnosed with stage 3 Non Hodgkin's Lymphoma. Cancer apparently grants no "professional courtesy" to medical professionals. Since my wife has also had lymphoma in the past (Stage 4, 20 years ago) the PA told her the roles were reversed and she was helped by my wife more than my wife was helped by her this time around.
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ALHusband, cancer doesn't play fair, that's for sure. I am comforted by knowing that a few of my medical care givers have "walked the walk" because they can actually relate to what I am going through (not that I'd wish any of it on anyone, but the experience will surely richen that PA's ability to care for patients). I am also glad when people relate to each other as people, the roles melt away, and something shared makes us the same.
I am so happy to hear of anyone's lasting health with this disease, one year, two years, three - I'll take it. I am still in initial active treatment (which will end up being almost 8 months of chemo plus surgery plus rads) and if I can see three years I will feel so lucky. And then four. And so on, I hope, for all of us.
I am so happy to see that there were several things that look promising for TN to come out of the San Antonio symposium. Always hope!
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I don't post much but I come and read the board whenever I need the strength and courage to carry on. The women here are my heroes.....its like an all girl Avengers. Some of you came here for support but you give more than you can ever imagine. Thanks ladies.
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I'm new here and new to breast cancer. But, I agree with you. The support and stories are amazing. I check here every few hours. I love your comment about All Girl Avengers!!!
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hi
Wishing everyone well here. I hop on every now and then. Wanted to offer some hope to the TN crowd as I am going on 19 years post stage 2b TN idc. Also BRCA1. Had to fight the beast twice but doing great now. Sending my best to all.
Deb
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Hello Debwarrior,
I have just read your post and just wanted to say how much I admire your courage and determination in all of this over 19 years. I do hope it will be plain sailing from now on.
Take care and very best wishes from someone who is thinking of you.
Fond thoughts.
Sylvia xxxx
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@Debwarrior - I am also BRCA1 positive, triple negative stage II (but with two lymph nodes in the mix). I love your post! Thanks for checking in with a big bright sun at the end of my tunnel
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Thank you Debwarrior. 19 years is true testimony that this ugly beast can be beaten!
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