Calling all TNs
Comments
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Suze and Laura Jane--your courage and inspiration are truely heart warming. I feel like I know you all thru these threads. All I can say is you are all amazing.
TifJ--so happy for you! been following the thread to see the results. Happy dance time
Maggie..not sure what just happened to font??
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kathrynn - I would LOVE to visit with you!! I'll keep you posted as to my treatment date. I'm hoping it stays the 13th. My MO is actually Erica Mayer, but I like the tricycle visual, lol. That is so true!! I am so glad treatment went well for you. Sometimes, doctors don't know everything - real world advice is so valuable.
Heidi - I so agree with you - boy does it matter!!! But it is a lesson learned - I have to make sure I get all of my full reports asap. I am in charge of MY care, and I can't forget that. The hardest thing is knowing that I had a clear scan 3 months before, so no one dropped the ball in that regard. Thank you for the good wishes - I'm hoping I get a few months reprieve on this regimen. Who knows, it may even be my magic remission bullet!
Good news from the MRI - no impending fractures and no spinal cord impingement. I have a slipped disc unrelated to the FC, and a lot of bony growths (no surprise). So I can continue to treat for pain, and start treatment without worry about any damage. Yay!
Thank you again everyone for your well wishes. I will persevere, and do my damndest to help women be educated and in charge of their health and lives. That is my goal for however long I have on this earth, regardless.
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Suze, Yes, you will persevere and we need you to stay around. I'm so sorry your reports were as they were.
Kathrynn, Love the belly dancing!
Tif, Excellent news.
LauraJane, Thinking of you.
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Hello agina,
It's certainly uplifting to hear some of the good results that other TN ladies are receving, let's hope more of it is on the way. I was hoping to start treatment in the next couple of weeks, I've got my first meeting with my MO tomorrow, however after meeting with my RO on Monday he expressed some concerns about the surgical margins after my lumpectomy. My surgeon was fine with them but the RO thinks that they are too close given my young age and the agressiveness of the tumour. So now I'm awaiting word back from the oncologists on what is next - a re-excision or chemo. Frankly I don't know if I'll be ever able to stop worrying about the margins unless I have the re-excision....man, it seems like these disease is always throwing you curves, just when you think you know the next piece of the puzzle something else comes around. Take care all.
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Hi everyone! It's hard to believe, but I've crossed the one year mark. This time last year, I was getting ready for a bilat mx, chemo, ooph, and was absolutely petrified. I feel good with the exception of what appears to be some arthritis, and of course hot flashes are uncomfortable. My hair is curly and growing like crazy. Just wanted to pop in and let you all know I'm praying for you and you're in my thoughts.
Laurajane... I really hope the chemo you just started will be the magic combo. You haven't posted in about a week from what I can tell. I've been following how you're doing.
Suze... same thing with you. Both of you ladies are so uplifting to me. Every time I read your posts, you both have such a good outlook on things. Your posts are a blessing to me and I pray for both of you.
What a wonderful group of women here! All you newbies are in good hands... these gals are fabulous! Just sorry to see so many newly diagnosed people...
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TifJ - Wonderful news - and a great sigh of relief!
Kathyrnn: Wow! What a great video and I really have to take my hat off to you for even being able to go to the mall during chemo - let alone bellydance at the mall! You are amazing! I was happy to just breath during chemo - it kicked my butt big time! thanks so much for sharing.
Suze - I've said it before and I will keep on saying it - You are truly a wonder. I admire you so very much. Please know that if prayers, good thoughts, great hope and much love can help get rid of this beast for you, then this trial will be the answer. Stay strong, babe, stay strong.
Christina: - Of course I am also wishing you all the best with your tests. Keep that chin up!
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So proud of myself. I now know what margins are and can almost make sense of what I read. Hope you all had a great day or at least a not so bad day. My arm feels like someone put a plastic plate in the armpit and down the side of my body. Everytime I move it I feel like I have to move over this plastic plate to do what I can to get something done. Is there something we can do to get rid of the pain in the armpit?
If it's someone's birthday today, I want to wish you Happy Birthday. I think that's really important to share that tonight. Hugs and Hope
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Suze, that is what I worry about with scans, that in 3 months they can go from showing nothing to showing lots of mets. I know triple neg grows fast, but I also wonder what scans are missing. As far as the sugar coating doctors go, I have found that I am not quite ready for the report right after the scan, i talk to the doctor and then wait a week and then ask for a print out. I know, I am kinda strange! I want to hear what the doctor says first, let it sink in and then read the report! No surprises so far, except when i saw on one report it said stage 4, doctor never said what stage I was and I didn't ask until after that report. He still says he is in disagreement with the report and he views each of the actual scans, not just the report. I am glad you are starting treatment soon and hope the fc disappears as fast as it showed up.
Tif-Yay!!!!!!! So happy for you!!!!!
Kathrynn- You gals are great! That must have been so much fun! You look great!
I had to go to my primary doctor because of high blood pressure and fast heart rate. I took in some print outs about beta blockers and bc. She had heard of the studies and put me on propranolol. For some reason chemo or other medicines have sent my blood pressure and heart rate up, so I hop this does the trick and helps prevent recurrence also. I am so glad she agreed to try it even though the studies are retro studies and very preliminary. This medicine also helps a bit with anxiety, which I need all the help I can get in that department!
Best thing that happened today-My good friend from work gave me the kindest card, I started to cry as I read it and and had to wait until I got home to finish reading it. I don't see her much at work as we work different hours, but her words meant the world to me. So my work is not all bad, only certain moments. I have the best clients and friends from there. Still, there has been tension between my boss and I. I am letting go of what she said, but she still seems tense around me. She is a good person, she just sees things in a different way and is way tougher/stronger than me! Or should I say she is less emotional than me.
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Maggie..I think the font just got as excited as you were! HA HA.
Suze..my friend..you are truly an amazing person..so glad to know you and I KNOW that the treatments will kick cancer's A&&S,,,it has too...
MJB..my nose still hurts
Called the onc's office to change my appt....they said that they were soo busy and it may be a few weeks b-4 they could get me in...I really hate that they are so busy...we need a cure...NOW.
Love to you all and hope everyone has a good week with treatments and anything else you have going on...after months of frenzied wedding planning..I actually went out to dinner with some friends and went to a girls volleyball game...it was nice to just totally relax for awhile.
How are some of you doing with the walking/running? It really helps me with the stress...
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Suze, girl, you are awesome! You have such a bright head on your shoulders, I bet you can outsmart all those doctors there, and can win this battle, which I am sure you will. 3 months ago the scan is all clear and now all this, my God, what are we dealing with? I read all your posts and PM's and find that the way you think things out, is really amazing and you are going to attack this thing on October 13th which is just around the corner, my friend. The next cocktail is definitely going to stop this thing in its tracks, you bet, it will.
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Suzy - so glad you were able to get your pain under control. I hope that the trial drugs work like magic!
Kathrynn - loved the video, thanks for the smile.
Titan - glad you had a break from BC.
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I am recovering from my broken kneecap - that has taken my focus off BC! Our town is having it's annual river festival this weekend. It's nice to have something to look forward to. We'll have a parade in the morning and in the evening, fireworks and a street dance. We only have about 4000 people in our county. One year, the prison work farm bus and the recycle truck were in the parade! My 12 year old is in the marching band, can't wait to see him all dressed up.
Enjoying the small pleasures...0 -
Sounds great to me. Count me in.
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I want to say thank you to everyone for sharing...I went for a regular follow up with my onc and was armed with a ton of questions based on everything you all have shared on this site. (Thank you Titan) My onc answered all my questions and was impressed with all of the questions that I had...Have a great day!
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OBXK: Sorry to hear about your kneecap...ouch...glad you are getting better, though that might be a bit drastic for a distraction.
Titan: so glad you are relaxing and having fun. Sorry to hear your nose still hurts, that must have been some fall! See note to OBXK above
Suze: wow, you are pretty amazing and have a wonderful attitude. I know how much the disk and bone spurs can hurt. I just had surgery to repair that same issue in my neck in July. If they ever suggest it for you, I have to say it was a great decision and the pain is way less.
Just some quick good news. Yesterday, a person I don't even know from my son's school, but who had triple neg. bc a couple years ago called and has offered to really help. She is coming by on Friday and I am just really glad to have someone to sit and visit with other than my husband or children.
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To all the wonderful ladies here who helped me get through the scanxiety- THANK YOU!!
OBXK- isn't it crappy that it takes pain from something else to take our minds of BC?
Titan- I wished you live near me so you could kick my butt off the couch- how do I get motivated? I could lose about 15lbs.
bak94- hope the new meds get things under control!
cc4npg- good to "see" you again! I'm still dealing with awful hot flashes too. Really sick of them!
Linda- Your posts are always so encouraging and you wish everyone well- How are you??
Survivor- Hope you get the chemo thing worked out soon. I think no matter what path we choose, we will always second guess ourselves that we could have done more.
Christina- any news?
Mags- I thought you were just REALLY happy for me!! LOL!!
I know I have missed alot of you, but I didn't think you all wanted to read an even lenghtier post. There are just too many of us here- that's not saying much for BC research is it?
Best wishes to all today!!
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TifJ- so glad you are okay.
Suze35- GOOD so glad it's starting up soon for you. I love the fact that you are on top of things. So you are in pain but I know the meds will kick in and keep things flowing.
Ladies I haven't had a hotflash in god knows when. Can they officially be over with and my monthly friend returning
(( Kelly41- so glad you did this knowledge is power. Doesn't mean you are bossy it means you are concerned.
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Suze: Good to hear about the spine - just the start of some good news, right?
Missmollyb: Just to share, my RO's first reaction when he looked at my path report was, "so you'll be going back for more surgery, I assume?" "Ah, no." Then he looked at the report more thoroughly and saw my BS had gone right to the chest wall to get a 1 mm margin and there was nothing more to do, except radiate the hell out of it. He also knows my BS and thinks extremely highly of her and her opinions, so that helped with my anxiety. Hopefully your MO can set your mind at ease one way or the other, more surgery or not.
lwarstler: You will find the kindest people come out of the woodwork. I had regular calls from a TN survivor, a friend of a friend I never met (and still haven't). But she would call and check to see how things were going. Now I pay it forward with another woman in treatment.
Kathrynn: Awesome that you did that dance. And now the happy dance for being done treatment....
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MissMollyB - my BS considered my margins very clear at 5mm, but I know every doctor is different. What I can say is that the area that has been radiated on me is completely cancer-free, which is a testament to its effectiveness I'd say, lol. Find out what your margins are, and have the two doctors talk. If YOU don't feel comfortable with them, then it is a reasonable choice to have the site re-excised. I am a big believer in reducing your stress-load down the line in any way reasonable.
cc4npg - so good to hear you are doing well! Thank you for your kind thoughts. I chuckled at the image of you with curly hair, when all I see is long and straight in your avatar! I bet it looks very cute
.jazz3000 - knowledge is power, so keep soaking it up!! Are you having pain, or is it more numbness/tightness? When my mild LE acts up, it kind of feels like what you are describing, like I am holding something under my armpit, but it isn't painful. Otherwise, time and exercise will help.
bak - I know it seems so scary to progress quickly, but I have to remind myself that they were different types of scans. In June I had an abdominal CT with contrast, and in September I had a PET/CT. I think if the June test had been a PET, it would have caught something in the nodes, I'm not sure the CT is good at that. Still, you are having such a great response to chemo, I think you are really going to do great! And I can understand waiting a bit to get the reports - whatever we have to do to get through this, right?
Titan - your words always help me feel better. Everyone's make me feel better. At the very least, coming here brings me so much comfort, and that is a great thing!! I'm sorry your nose still hurts, that sucks! I know what you mean about such busy doctor offices. My original MO is booked through DECEMBER. Find a f&*&ing cure already!!!
Loveleyface - thank you
.OBXK - I'm glad to hear your kneecap is healing, and that is has been a "good" distraction. And that river festival sounds like such fun!! Have a great time.
Tif - when do you get your bone scan results? Soon I hope!!
Fighter - I hate my hot flashes, but I don't know if I'd trade them for a return visit from that particular friend. How are you feeling after your lipo? I bet you look great
.Luah - I agree with you. The start of some better times. I like to think that I am "supposed" to be in this trial, if I had been dx earlier, I wouldn't have been able to wait. And I was able to see the doctor the very next day and was #2 on the list. It's calling to me!!
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Good thing for the day so far - pain is still under control, yay!, and I'm picking up my newly hemmed white whale jeans so I can wear them this weekend. And my baby girl happily picked out her Halloween costume - "I am going to be a PUMPKIN" lol.
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Suze: Congrats on finally moving forward with a game plan and I am hoping it cuts this beast in it's tracks. I am constantly amazed by the joy and courage that shines through in your every post!
Tif: YAY FOR YOU!!!!!
Titan: So sorry about your nose. Did they do an XRay to make sure nothing is broken? It takes a long time to heal!!! Glad you are just kicking it after all of the work on your daughter's wedding. I agree-I wish you lived closer so I could have a running work out partner!
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More happy news today! I have all of my scans and bloodwork set up for tomorrow at Dana Farber, and my start date is Wednesday, the 12th! The sooner the better for me.
And my DH - emphasis on D - surprised me today with the shoes I have been drooling over for 6 months. I get to wear them in NYC this weekend, yay! I don't know how to post pictures, but here is a linky. They look tall, but they are really very comfy.
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YAY SUZE!!!!!!
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White jeans, high heels, struttin' the streets of New York... what a nice way to spend the weekend, Suze.
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MBJ - Yayy is right! I just feel so much better knowing I'm getting started. That's the first step!
Luah -
. And then I'm going to come home and play supermom with my kids on Monday - they are out of school, so we are going to find something fun to do, I'm thinking apple picking, a nice pumpkin patch, feeding some goats... we have great options around here. Good weekend all the way around.0 -
Suze - Those shoes are gorgeous! Enjoy!!
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BAK, have you heard anything about your SSDI? My daughter was actually terminated from her job as a dental asst. when they found out she had BC. Of course the letter of termination states that it was due to the office being slow. She is desperately looking for another job but not having any luck.
She was told that BC is not considered a disability. But no income is a disability! I am at the end of my rope trying to think about what she can do. This seems like an impossible situation. Her ex is a Second Lieutenant in the Army and is trying to cut back on his child support payments. Of course he can afford the attorney. Sorry for the vent. It just seems like there is no help for her anywhere.0 -
BAK, have you heard anything about your SSDI? My daughter was actually terminated from her job as a dental asst. when they found out she had BC. Of course the letter of termination states that it was due to the office being slow. She is desperately looking for another job but not having any luck.
She was told that BC is not considered a disability. But no income is a disability! I am at the end of my rope trying to think about what she can do. This seems like an impossible situation. Her ex is a Second Lieutenant in the Army and is trying to cut back on his child support payments. Of course he can afford the attorney. Sorry for the vent. It just seems like there is no help for her anywhere.Kim
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Suze- Darn it--- the link showed a general page...are they the watersnake ones?0
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peddlerswife: I would go to the labor board and report them and I would also contact the free Cancer Legal Board. Hugs!
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Hi all of you wonderful ladies. I appreciate how much how all of you have been here for me. I haven't been on in a while and will do some serious catching up on this thread this evening and tomorrow.
I've run the mile as they say. I just got put on Halavan yesterday the Navelbine didn't work either. I'm hoping this one will slow the FC down at least a little. Tumors still growing and skin mets spreading which is good because it is easy to see if the chemo is working. If it was all internal we wouldn't know. The MRI showed activity in my spinal fluid (Whatever that means) but the bonescan didn't show any actual tumors yet. That's good I've been told. The aggression of my cancer however does mean that unless this chemo works and it does hit my vitals I will only have a week or two. I currently have increased pain in my liver and my feces has looked abnormal for about a week. It may have already hit. We shall see. I asked my onc how long she thinks I have and she said that her estimation which is something that she says she never does is probably a month maybe two at best if this chemo doesn't work. She does know of women that have lasted another 3 months on this though. I hope to break the record. She also said and I met with another onc also and they said I am in much better shape than most woman on this Halavan because my cancer overrode the other chemos so quickly. I guess other woman have been on these other chemos longer so they are in worse shape as far as bone marrow, nuropathy etc. The other good news is that I haven't felt all that great today (Might mean chemos working!). I've been on the toilet since last night and now realize that my focus should have been on remodeling the bathroom and not the kitchen. LOL. I told her I had planned on remodeling my kitchen and it would take a couple of months and she said I should put that on another burner and enjoy cooking in the one I have. LOL I had "The Talk" with my daughter and son. My sweet son told me he was going to just enjoy the time we had that he thought I would be here forever. I explained to him exactly what was going on and he said "He wasn't going to wait around for it to rain" I asked him he mean't and he said it was like how some people sit around on a sunny day waiting for it to rain, and he wasn't going to do that he was going to enjoy the time we have and we should not sit around and cry we should just enjoy the time we have together and treat life as we normally would. I showed him how to iron his shirt today and that was so much fun for me. He just turned 18.My daughter and her husband had the trailer they bought moved on to the farm they bought. Life is goo. They are moving all of their things into their trailer today and then are going to come over tonight for dinner. I am so happy for them. They bought a beautiful piece of land with a creek running through it and they are going to live in the trailer that's actually bigger then my small bungalow while they build their house. I am so happy for them. I got an incredibly big hug from my grandson today. Life is indeed "Fabulous". Just sharing some of the Good" things that happened to me today. I hope you all had something good happen to you today also. Love to all of you.
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Heidi, if you copy and paste the link seperately it will go to the page...
Suze...they are amazing!
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