Calling all TNs
Comments
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Kayak - thanks for the encouraging response re taxel - so not everyone has really bad side effects!
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adagio - so glad you received some posts from people who had better Taxol experiences than mine - Best Wishes.
Welcome to all the newbies - this thread is awesome.
CS - thanks so much - too funny - how nice to turn in this evening laughing.
Goodnight to all
Sherry
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Welcome new ladies...about chemo..I had a lx first and so asked my onc how do we do i know if the chemo worked to get those stray cells...he said we don't know...so there it is..I guess you just hope that the chemo will work...most of us survive chemo ok...and live to talk about it...I have no se's at all..and would do it again in a heartbeat
ran my last 5k for 2012 with my son..ok..he was well ahead of me..didn't know whether to laugh or cry or both..it was for TN cancer in Columbus, Ohio for the wife of a well known OSU football player and NFL player...I actually got the guts and went and introduced myself and told him that at this point I was a bc survivor...they have raised 11 million dollars for a BC CURE...and while this guy(he is an announcer on ESPn).was talking to the doctor of the hospital..he literally told him that we need a cure now and that is what the $$ are going for...I'm thinking ..OH YES
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Good post, Titan. And congrats on finishing another 5k. You rock!
Welcome to all the new gals. Glad you found us. Wishing you comfort while you get through tx.
Feeling worried about Inmate and Hope. Been a bit since they posted.
Hoping all you gals on the east coast stay safe and dry. Looks like Sandy is gonna be a real pain.
Good night, Ladies. Rest well.
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Way to go Titan! You are amazing!!!
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Hi Jan69: Well the earthquake happened about 9-10hours away from where I live… but we did have a wall in our back yard fall down at approx. 6.25am this morning – coincidence ?? There have been quite a few after shocks. I believe all tsunami warnings have been called off. I’d be a little wary of living or moving around with your brother… that’s more than bad luck.
Titan: another 5k run – you rock, that’s awesome.
Hello new ladies.
Stay safe all those on the East Coast. We have the World Series on at the mo and the weather in Detroit is nasty, windy and rainy !
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adagio - one of the palliative nurses who is the sister of one of the nurses at my work said to me if you get the chance to have a port in go for it because they are wonderful. Well my veins always hide and it was very painful to get blood out so before chemo they inserted a port. It was a little bit sore (no more than that for me) and I've loved it every since. Before my infusions I would put on the Emla patch an hour beforehand which numbed the area though I didn't feel anything and when they inserted the needle for the IV all I felt was a bit of pressure, no pain whatsoever. I still have it and will have it out soon now that treatment is over but I will really miss it. If I ever need some sort of chemo again I will have one put in, in a jiffy.
Titan - bout time you got those thighs clapping again, its been some time. You know my exercise regime for you is scheduled for you to exercise every day. After all I practice waving my flag every day for you.
Hoping all you ladies miss Sandy and remain safe. Annie
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At least this one only poop's and doesn't chew!! (Mind you mine don't poop in the house- victory. There is something the 'little shit' gets right.
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Welcoem to all teh newbies. I was scared as heck before chemo, but it was not anywhere near as bad as I had imagined.
Re taxol, I did 12 weekly sessions too, and almost felt normal throughout. I did get an itchy rash on my arms at one point, and some finger and toe nails darkened (a few blackened toe nails fell off a couple of months AFTER treatment), but nothing that a nice black laquer couldn't cover up for sandal season. Best wishes for minimal side effects for all the ladies in chemo right now!
Titan: How awesome to do the run with your son -- and to help raise funds for TN! Sharing something special is an awfully rare and precious event with our young men, isn't it?
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Titan - you put us all to shame!
I sure wish the rain from hurricane Sandy would stop. This type of weather, makes me blue. I think the sun is due back Thursday.
I am still waiting to hear if my Her2 status is back, so that I can start chemo. Not looking forward to that. I always love to hear stories of women who work through chemo! I have a difficult time with it, but I hear gemzar/carbo is easier that things I've had it the past.
Hope everyone North of me, is high and dry!
Hugs all around - Karen in NC0 -
Hey Titan - just thought I would keep up with you today and do some exercises
(I wish lol). So I took a photo for you.
Gosh isn't this lady gorgeous. Wish I could do it.
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laughing out loud and hearty CS - she is truly and inspiration to us all.
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Hey Taz when are you going to England. Hope you don't get bad weather over there.
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Annie - loved it!
I start Gemzar/Carbo on Wed. It's still TN. Spent the day going through closets and drawers. I feel like I am erasing myself from the house. Just trying to make it easier for DH.
I have a cedar chest from my GM. I am putting my special family things in it, along with notes about what they are. I know this seems
morbid, but it's also reality.
No worries, I'm good.0 -
November 21 back to old blighty
Weather dont really bother me Annie. Once I realised I couldn't control it decided it is what it is. Its expensive and a long way to go just for a hug from my Mum, Dad and Sister - but so worth it ! I dont care if I dont go outside the door. I expect November will be the normal drizzly grey I was used to 
Now if only we could get weather like you will be getting.OBXK: It think what you are doing is only morbid to those who dont really understand what you are going through. If it makes you feel more content and clears your mind I would say its good therapy. Just think, in 50 years time, you can open that old chest and blow away the dust and laugh about the day you put all that stuff there ((((hugs)))).
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Thanks for all the info and support. I have heard good things about the port 0 cath. Tomorrow I should know a bit more. I did read about isolated tumor cells in lymph nodes as not being a reason for further lymph node dissection - so hopefully the onc will agree with my surgeons initial decision.
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Karen - I think the other way. You aint going anywhere so forget about about clearing out closets and putting things away. We just won't let you even think about it. So get a good book and a glass of wine and do that instead and when you get those 'what ifs' tell them to piss off.
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Annie and Karen -When I tuck something a little odd into a drawer, I often think of the chuckle my kids will have when they find this after I'm gone. My sisters and I had to clear out so much when we moved our mom from her home to assisted living. But I understand your need, Karen, to keep family history intact for another generation. I was lucky to get my great-great grandmother's cedar chest where we sisters put everything we thought ought to be keepsakes. But I need to do what you seem to be doing: labeling everything. So admire your strength Annie!
Adajio- I also loved having a port for infusions. It bugged me a lot, but I considered it the price of not damaging my veins. I had it removed once I knew I was NED.
DH and I have had the TV on the weather channel all day today. We're just holding our breath that everyone and everything will be ok. Jan
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Hi everyone! I am newly diagnosed with TNBC as well. Having my fourth AC treatment this week and then four doses of taxol through the holidays! Then in January, I am having a full mastectomy with reconstruction. I am wondering if any of you have pain in your armpit and boob. Mine throbs all the time. In fact, that is what alerted me to my cancer cause it hurt. They have done a dye test on me which didn't show any swollen lymph nodes but it sure has me wondering if something else is lurking deep inside. Have any of you experienced this?
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Navy mom and and all I will have to tell you that running this 5k with my son was probably one of the best days of my life..I'm still feeling up from this...we had so much fun...he really is a great kid..well adult now and I enjoy him so much...
Cocker..you rock..I betcha you can do the balance beam just as well as that lady...
Hey Hope...some of us have had pain with tn cancer....we are special i guess...but take heart with the fact test doesn't show anything...also..my onc and bs said that they could have felt cancerous nodes just by touch...maybe this is the chemo killing those dang cancer cells? Be sure you tell the onc about the pain..hopefully he/she will have an answer for you
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Hopex3 - Welcome to our sisterhood. We'll help you through this. My major tumor didn't really hurt except when I was seriously poking around. I had mx first, so my experience is different from yours. My best advice is to tell your mo when you see him next. Best wishes. Jan
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I was diagnosed with TNBC on 8/6/2012, 3 months after turning 41. I am stage III, grade 3 with 6 positive nodes and BC in one breast. I am the first person in my family to be diagnosed with breast cancer, so after finding a lump, I kept putting off the doctor thinking that there was no way it was BC. Boy was I wrong! Hope3x, I also have a lot of pain in my breast and my armpit and actually it got worse after my chemo started and the breast started to shrink. I have had 4 AC treatments and my first Taxol treatment last week. AC was hard, Taxol is horrifying....the pain is unbearable! My whole body is in unbearable pain from the waist down. Has anyone else experienced pain like this with Taxol and if so, what did you do to aleviate the pain? I have 4 months of weekly Taxol treatments to look forward to and I understand that this drug builds up in your system, so it's going to get worse. After a total of 6 months of chemo, I am having a double radical mastectomy and then 3 months of radiation.
I can't help but to keep focusing on the 55% chance of survival for women diagnosed similarly to me. I honestly am afraid I'm going to go through all of this hell to just end up dead within 5 years anyway and I lost my time and a good quality of life to chemo and the awful side effects. I guess what I need to hear is that other women have survived who were in a similar situation, stage III, grade 3, node positive, triple negative, early 40's. I know I shouldn't focus on the negative, but in my mind, I'm being a realist. I would rather be prepared than to think everything is going to be okay, when really, it's not.
Sorry to be such a downer...I think my absolute fear has given way to absolute depression.
Jenn
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I just found out today that I have TNBC. Had a mammogram 1 year ago that was "perfect" according to my gyno. Had a breast exam in April this year -- nothing. Found a hard round knot on 9/11/12. Mammogram on 9/21, needle biopsy on 9/26, lumpectomy and SNB on 10/11. Initial report on SNB during operation was negative, but found out on 10/18 (my 55th birthday) that node was positive. Tumor was 1.2 cm, grade 3 IDC. Now have surgery to remove remaining lymph nodes scheduled for 11/12. Got receptor results today showing triple negative. Kind of in shock right now. Don't know anything on treatment right now. Originally my surgeon and radiology onocologist thought it would be lumpectomy and radiation. I'm figuring now it will mean chemo as well. Any advice or encouragement will be appreciated.
How does everyone get the line at the bottom of their posts with the diagnosis information?
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Welcome to our group Jenn. You're in a safe place where we're all in this together. You're NOT alone!!! I was 33 when diagnosed with no family history. I am stage 2 level 3 with no nodes, TN. So I am not able to relate to your stage 3 part but I wanted to just reply to the Taxol piece. I had SEVERE back pain and well really just pain, no energy, hard to breathe and just a general feeling of crap which turned into a pretty significant depression. When I went to my MO after my first Taxol my red blood cells were really low so I had a blood transfusion and that helped a lot!!! So maybe ask about your red blood levels. Warm baths with salts and a heating pad helped me. Also I took Tylenol for Arthritis pain because it's 8 hour Tylenol. I was told I could not take Advil when having chemo so my MO suggested an 8 hour Tylenol. That really helped too. Are you getting a needle for your white cells? I found that with the bone pain from Taxol and the bone pain from my Neulasta shot, it was severe bone pain for several days. If all else fails, you're one step closer to being done with each treatment. You're more then half way there!!!! YOU CAN DO THIS. Hang in there and again, we're right here whenever you need us xoxo
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Welcome to the newbies! Sorry you find yourself here, but you will find it a great place for support and practical advice - oh, and jokes from Bernie and Annie!
Taxanes - suck for most of us. I took a Vicodin every four hours until the day I woke up and wanted to live - some lucky ladies manage to work right through it.
5thSib - you will feel much better after you have a treatment plan! Stay away from Dr. Google! If you have questions ask here, if we don't know, we'll find you a good link.
Hope everyone on the East Coast is high and dry!0 -
5th Sib and Jenn -So glad you found this thread. We are a sisterhood of very supportive women. I was 68 when diagnosed 20 months ago. Jenn your description of pain and discouragemnt pretty much matches how I felt during chemo. I had ACT all at once every 3 weeks for six times. I had a few good days at the end of each cycle, but mostly I was too miserable to go farther from my bed than the bathroom. Many times I was ready to give it up, but DH hung onto me and kept me going. I'm so much stronger now than at the start of my journey. I have faith in you.
5th - You are likely still in the shell shock stage, as we all were for a time. As you learn more about your specific case, I think you will feel better. Ask all the questions you want. Someone here will have helpful suggestions. Taking a "secretary" with you to doctor appointments will help lots.
Wishing you both strength as you take on this crap. Jan
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5thSib Go to "my profile" top of page to enter your diagnosis information.
I was diagnosed at 55 also. Three years later still here:) NED (no evidence of disease)0 -
Good morning to all the lovely ladies and welcome to the new ladies.
Had a brilliant time in Belgium, need a holiday to recover.
Just catching up with all the posts.
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