Calling all TNs
Comments
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Tiffany: Wow, I thought your avatar was from a postcard it's so beautiful!
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Angelisa- Great to hear from you! I am so happy for you-getting back to a "normal" life. I am still having trouble there. Still have the frozen shoulder and feeling like every little ache and pain is mets. Vacation is coming soon, maybe that will help!! We have had the scary weather here too in Missouri. Joplin is about 2 hours south of us. Sedalia MO. was hit and that is about an hour east of us. We have had them all around us. Enjoy your gardening and check back in soon!!
Suze- Best wishes on your MRI!
TiffanyF4- your kids are beautiful. I have a 9 year old son and a 5 year old daughter!
Titan and MBJ- remind me to stay off the roads if i am ever in Ohio or LA!
Welcome Shereejoy and blondlawyer- Remember no question is too dumb or personal here! Ask away!!
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Hi ladies hope you have all been enjoying your weekend.
Welcome Shereejoy and blondlawyer.
Blondlawyer I dont know what to say to you, you have been through so much already I cant imagine now having to deal with this too. Cancer Fing Sucks. Try when you are able to focus on the positive things you will do in your life once you have finshed dealing with all this bullshit. I believe, I have to, that there is something really special waiting out there for us.Hugs
Shereejoy I am on pretty much the same treatment as you and I too have been terribly sick FEC was so hard on me and I switched last round but it was still hard on me too. I am on number 5 on Jan 9 so we will be going into the chair together .
cc4npg so nice to see you pop on,glad things are going well for you, you give us all hope and strength to just get through this.
Titan I am just thinking one treatment at a time, God I would really love to just quit now.
Have to run chicken on the BBQ Hugs to all
Kymn
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Thanks everyone! It has been a rough time, but I am too stubborn not to get through it I suppose
I am missing my husband so much right now, so that is hard. This week will be the 13th anniversary of our engagement as well as the 7th month since he passed. He has cystic fibrosis, so the years leading up to his death were pretty stressful and to say that I am exhausted is probably a huge understatement. The first week of chemo was hard because I didn't feel well and for some reason had expected that I wouldn't have SE and it is just so overwhelming. Hoping that this week is a bit better. Monday is my normal chemo day, so it will be off by a day this week with the holiday.
I am not working right now (I'm an attorney by profession, but lost my full-time job a couple of years ago and never went back full-time because my father got sick with lung cancer and then my husband got increasingly sick, so I fell into a caretaker role), which is good that I don't have the stress, but it is also hard because I don't have another focus. I'm writing a memoir about my life as a wife to a person with CF, so I am thinking that I will try to focus my attention there to give me something non-cancer to do. Right now the hardest part is finding a reason to fight and something to look forward to at the end of all of this. So I need to focus on that.
Looking forward to getting to know you all better!
Take care,
Lisa
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Blondelawyer-I just want to say that I'm so sorry for everything that your going thru, I think you have found the right place to be. The ladies on these threads are so supportive and I don't think it's something someone who isn't or hasn't been in our shoes can really understand. Starting to write your memoirs sounds like a great idea, not only will it give you something to focus on but I think it could be therapeutic for you too. I've been told to journal durning Chemo and list all of my SE's but I'm thinking of just writing everything down, how I feel both physically and emotionally. I hope I can stick to it and use it as my way of getting thru this.
Take care,
Heather
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Hello everyone,blondelawyer-I wil pray for you for comfort, and for all our battling sisters!- I have a couple reasons for joining this thread....first let me just say WHERE THERE IS LIFE THERE IS HOPE! As long as you have breath in you, there is hope! I was first diagnosed in 2002, stage I, triple negative breast cancer with 3 sentinel nodes biopsied and none positive. I underwent 6 cycles of FEC, followed by bilateral mastectomys with silicone implants. 98% cure rate--but no radiation. Every yr for 3 yrs someone from the hospital would call and say "it's time for your mam" I would laugh and say "I can't have one, I have implants, and they would laugh as well. No one in 3 YRs said "then you should have an ultrasound" so for three yrs the "few cells that were left behind" grew into my chest muscle the tumor had touched the chest wall, (I found out later radiation is ALWAYS reccommended when tumor is on chest), and into the lymph nodes under my arm and accross my collarbone. Surgery was not an option, so 6 mo. of Taxol/Carboplatin with 37 rads to breast and collarbone. That was 2006-7. In 2008 spots started growing in my lung, but doctor chose to "watch it" for a while, a yr to be exact. In Feb 2009 when the spots got big enough to be picked up on PET, doc still said he wanted to watch it grow untill it accelerated and then he could treat me one more time, but that my life expectancy would be 1/2 what he got me this stretch. Didn't make sense to me, so I sought another opinion again (did it in 2006)New docs said no watching, treat now. So, I was put on Taxotere/Avastin but had allergic reaction, so Abraxane/Avastin it was for 6 cycles. It worked! For one yr. From 8/09 to 8/11 I was on singe agent Avastin. 8/11 was my graduation day from chemo but scan showed 4 nodes in the mediastinum 3 on trachea 1 on aortic valve. Back on Abraxane/Avastin. In Jan 2011, scans showed no response, so 35 rads to the med. Doc wanted me to take a break from chemo while on rad, which didn't work out either, because my scans last week showed the rad worked beautifully on the spots, but in the meantime, 4 new nodes in the neck and a suspicious spot on my liver. Today is my 2nd day of 3000mg Xeloda....BUT I AM STILL HERE!!!!!!! It has been over 9 years since my original diagnosis, and I am wondering if there is ANY one out there fighting TNBC as long or longer than me. I have never been to a support group or on any chat or forums, this is my first. Sorry it took so much time, but it has taken me a long time to live it!!0
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Rella40: I think it is unusual to fight metastic TN for as long as you have. You are a fighter -- and an inspiration. It's true... in life, there's hope. Thanks so much for posting.
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Rella40 - wow! That is a long time to be battling, but what an inspiration! I have been fighting for almost 10 months and am still dealing with local issues (that may become metastatic this week once I have my liver MRI). Keep up the fight - you sound very determined! I will be on Xeloda soon myself, I've heard it can be very effective.
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Hello rella40
I just wanted to say hello and also that I cannot believe all that you have been through. You are certainly an inspiration to all of us and I want to say how much I admire all your courage and strength. I do not know if there is anyone out there that has been fighting TNBC for as long as you, over nine years. You are certainly an inspiration to me. Keep up your fighting spirit.Hello Luah
Thank you for your kind words on the Average Age of Triple Neg thread. Say "Hello" to Canada. I spent 17 years there, Montreal, Ottawa and London, Ontario. It is a great country and one of which to be very proud.
Best wishes
Sylvia0 -
Rella40: Wow, thank you for coming on here and sharing your amazing story of strength, courage and resilience! You are definetly an inspiration to us all. You will find this thread and the women here just a great place for strength and support. Hugs.
blondelawyer: I think when a person is placed under the astounding amount of stress that you were with first your husband and then your father, the body just breaks down from the weight of it all. I was under an amazing amount of stress working for an abusive employer and after 8 years and a couple of car accidents my body just couldn't take it anymore. I literally felt the lumps pulsate when being yelled at by my employer. BC was my blessing in disguise because it got me the hell out of there. You will find the strength to get through this and your husband and father will be there in your heart helping you every step of the way. I truly believe when a person gives so much of themselves many good things are returned to them. Even though right now it may not seem to be so, life is waiting for you to return to it and you will be stronger then you ever were before. Big hugs to you and I know you have the strength to get through this! Please do not give up hope!
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Hi Rella40, I too am amazed at your strenght but being stage 1 with no node involvment I have to admit your story scares the crap out of me. I am having a hard time getting through chemo first time I dont know if I could do this again. I am going to have radiation after chemo God I pray it works. Hugs to you for being stronger than I think I could ever be.
I am back at work today,first day back and am feeling very tired and overwhelmed. I have wobbly legs like a colt which is a new addition sigh I just need this to end.
Hope you are all having a SE Free Monday
Hugs Kymn
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Kymn: You are stronger then you think if you have already returned to work! Are you unable to take more time off?
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kymn, I hope you are doing ok... I can't imagine going back to work during chemo. I do know about the wobbly colt legs... I am thinking of you
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blondelawyer,
you have a PM from me. thinking of you today,
Aimee
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Kimn, Don't let my story scare you, we all have it in us to fight through the rough stuff. I think you will be fine, you are doing the radiation. My error was not making them go that last step. I have had more than one error made in my treatment, maybe that's why God has allowed me to survive this long. They tell me at my treatment center that I am far from over, so I am going with that. Having said that, can anyone give me a heads up on the Xeloda SEs? I am about to take day 2 dose 2, not having anything so far....
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Kymn- don't let rella's story scare you. In fact, I started to write a response to her saying I actually found her story comforting, but then deleted it because I thought it might be misinterpreted.
The reason I found it to be that way was because I finally had a logical explanation for someone having a recurrence with zero nodes that I could understand: she didn't have rads afterwards.
Of course, (and this is important to not misunderstand) that may not have been the *actual* reason, but it helped me to realize that those who do recur may do so for reasons we are not aware of from the limited information we may have regarding their situation (such as LVI, different response to chemo, BRCA status, lack of rads or clear margins, etc.)
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Heidi: I so agree with you! I just said almost exactly the same thing to someone else on another thread. There are so many reasons for recurrence!!
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Kimn - Heidi and MBJ are so right. There are so many factors involved, we just don't know what particular one is in play. I found Rella's story inspirational because it gives me hope in the face of my bad odds that I still can have many years left, but it is important to remember that we are all different, and I believe our cancer is also. But the odds are on your side, very much so, and you can BEAT this!!
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Blondelawyer - I hope you wake up from this nightmare soon. It can't possibly feel like reality. I'm sorry the taxol was hard for you. The onco's never really tell you how bad it may be - possibly in fear, that we will not show up! You'll figure out things that help you tolerate it, along the way. Chemo gives me wicked headaches, so I take a Vicodin and nausea pill every 4 hours until I wake up without feeling like I have an ice pick stuck in my head.
I'm new here too, if you need an ear - bcwar1@yahoo.com
Wishing you well... Karen0 -
OBXK: Welcome to the board. Are you still in the middle of TC or are you done?
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Hi Aimee! My daughter's name is spelled the same way! I love that name..it means "beloved friend"...
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Rella..thanks so much for coming on here and sharing your story with us...
Great discussion here.....
Seems to me..with TN..it's better to have the most treatment possible...and I think most of us have done everything we can...
Kymn..you are doing everything you can..hold on to that ok?
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Hi Titan, glad you like my name, I was named after my grandfather, who was a French Canadian artist named Aime.
I have not really posted here but have been reading. Still struggling with the whole TN diagnosis. Tomorrow is my first post-treatment mammogram, and I'm a little freaked out.
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Hi Titan, Thanks for the welcome from you and all. I am sorry if I scared anyone with my story, that was never my intent. I just wanted women to know that no matter what, don't give up. There are so many options out there now, if one drug doesn't work, there are others. When I was first diagnosed, there wasn't really anything said about it being TN, it wasn't until my first recurrance that I was even aware. Just remember, there are lots of options.
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Sorry Rella I didnt mean to make you feel bad about your post, I am so glad you came and posted and the ladies are right it is great how much treatment options we have compared to before . I was just holding on tightly to the fact that I was stage 1 and no nodes and in denial or trying to be lol that it couldnt come back. The whole TNBC things sucks thats just what it comes down to....well BC all together just sucks we are certtianly not the only sisters out there who have to deal with reaccurance. Looking forward to getting to know you better
Hugs Kymn
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Hi to everyone, no teeth, no hair. 3rd round of chemo tomorrow. Little girl at work the other day said my face had gone all nice and soft. I don't have any children but I work in a garden centre, pet shop and it's comments like that from the little ones that keep me going.
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OBXK: Thanks. It does feel surreal and I keep hoping that I will wake up and find that it is just a horribly long and intense nightmare. But unfortunately it isn't. I am working to just take it one day at a time (well, most days it is actually more like 10 minutes at a time). As cliche as that sounds, it is about the only thing that works some days. I am also writing, which is therapeutic. So...I'll get through it!
Are you from NC (because of OBX in your name). We used to live there and loved to visit the outer banks. I really miss it!
Aimee: Thanks for the PM! It's nice to hear from neighbors!
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Hi Everyone,
I just found this site and haven't gotten a chance to read all the posts, but I'll be back soon to get to know you all.
I am newly diagnosed with triple negative, so just call me Newbie!
I'm 57 years old. I just spent the last 6 months in the most unbelivable hellish pain, which they finally figured out was a herniated disc that had completely compressed my sciatic nerve. (I've lived with a back injury for 22 plus years, and have never felt pain like that. It was so bad that I lost 25 pounds in a month from the pain)
Two weeks after my spinal surgery, (my sense of humor is getting a wee bit strained) I went for my mammogram on 5/3/11. In less than 29 days, I've been diagnosed, seen by a team at Dana Farber/ Boston, had all my necessary tests and start Chemo on 6/1/11. (That's some pretty fast phenomenal medical care!)
They believe it is early stage (excuse me while I throw my hissy fit *stomps feet*) but I'm not being staged till I finish Chemo. (They are leaving the tumors in to see if they shrink during the chemo). They will check the lymph nodes when they go in to get the tumors in 5 months. I will get the results of my CAT scans, etc before my first chemo.
I'm in an experimental study, so I won't know till Wednesday exactly which drugs I will be getting.
I'm a nurse, but apparently I'm a pretty dumb assed one, lol. I hadn't had a chance to do any research until tonight on exactly what Triple Negative means to long term survival rates. On top of being TN, I also apparently have some rare-assed sub-type of IDCA, which I can find very little information on (Really God, with the odds of this type, wouldn't have really have been easier to just let me win the lottery?). After doing some reading tonight, I admit to being much more scared.
I may not be on to much, because I'm caring for an ill elderly mother, and don't have computer access at her home (and that may be changing real fast, I NEED MY INTERNET!) but I'm very glad to have found this group.
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kathrynn: welcome, I also had neoadjuvant chemo also. A lot of us here have, so we can answer questions you may have.
rella40: Thanks for telling your story, I found it very inspiring. I am wondering if the term "triple negative" was not even in use when you were first diagnosed.
OBXK: Welcome!
Suze35: I can't wait to see a pic of your new car!
My son graduated from high school this weekend and all went well until I fell apart and had a major meltdown this afternoon. With all my in-laws here. I think it was building up all year. Oh well, tomorrow is another day.
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