Calling all TNs
Comments
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Sorry this is a little late, but thanks to all who supported me through the dreaded mammogram earlier this week. I took a mini vacation from BC (2 days) but I'm back to the board again!
OBXK - happy anniversary!
Congrats to those who are finishing chemo....hugs to those who are dealing with side effects.....and a good weekend to all!
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YEAH to everyone finishing up chemo and Happy HAPPY anniversary OBXK!!!
I was talking to a "friend" (use that word losely) yesterday and she was asking about TN cancer. So I was telling her that hormones don't feed my cancer and that I can't take anything like the hormone people can. She said, "So you're terminal?!". My eyes just filled with tears and I said, "Um.....NO!!". I tried to explain that LOTS of women with TN cancer live forever but yes my risk of recurrence is higher then those who aren't TN. I quickly hung up and burst into tears!!!! Then I sat for a few hours just feeling crappy and realized that I am a ticking time bomb. I HATE how one person can ruin my whole day. And I know it's my fault for letting her but still. I hate this whole TN and cancer thing and just wish that at 34 years old I didn't have this lurking feeling that I may not be here to see my boys graduate from GRADE school let alone be at their weddings etc. UGH!!! Just feeling like crap today. Sorry for the rant ladies but I know you understand.......
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Oh! bornto.... that is just too awful. Glad you used the word 'friend' loosely. People and their bloody comments. Thats so insensitve. Do they realise at all what they are saying... I think not and wish they would think before they put their foot in mouth
All of us with cancer have a higher risk of recurrance... did you actually know that TN's after 3 years (maybe 5) if the cancer hasn't returned in that time and for most of us it wont... we have a better survival rate after that time than hormone receptive cancers. So tell her to stick that in her pipe and smoke it.... ! Of course you will see your sons graduate, get married, buy a home and make you a granny. You're entitled to fill crappy and if I were you next time if she phones tell her that you do not want to hear any negativity and if that is all she can offer not to call again... but then that is what I would do.
You have your life in front of you bornto and dont forget it.
Hang in there honey and get those emotions out. Go and do something you enjoy.
xxxx
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Borntosurvive- I feel your pain. ((((HUGS))))
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I'm so sorry Borntosurvive. Some people just suck--there's no other way I can think to put it. Like Fighter said, I feel your pain, too. I was diagnosed last year at age 34 and I know how that feels.
Hang in there. The bad days are to be expected, but it's especially frustrating when they're brought on by someone else--as if our own imaginations didn't give us enough to work with.
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Hi to everyone, just a quick note because I'm late getting running to do errands and I'm sneaking off to the casino with a friend tonight.
Borntosurvive - your name says it all. Don't let people like your friend shake you, it's called "foot in mouth up to knee syndrome", and hopefully came from a place of concern but ignorance of the disease. My best friend did the same exact thing, except she was sobbing as she asked me the question. It was her fear for me that made her ask. More woman survive this than don't so the odds are in your favor. ((((hug))))
LuvRV - now I know we're at two different places, lol. My MO looked at me like I was nuts when I told her what I had done and that it worked. She started speak, and by the look on her face I was about to get a pretty good lecture, when the research nurse piped up with, "they don't know why it works but a lot of oncologists are now recommending it". No lecture was given, there's nothing more a doctor hates than finding out 2 nurses know something they don't! (didn't ask permission. Had already been taking Claritan during Taxol, and am on Zantac). Went with the theory "Tis easier to beg forgiveness, than to be granted permission"0 -
Borntosurvive - After my last appointment with my ONC, he said that the two year mark is a good sign for TN's. In his words, I should pop a bottle of champagne at that point! Now we all know there are no "rules" that breast cancer follows, that's for sure. There are so many beautiful women on this site alone that have had issues after that time. BUT I'm choosing to live my life focusing on my future. I can honestly say that I have finally reached a point where BC doesn't consume my thoughts. I'm going to the gym again, have lots of fun summer plans, and have a road trip planned with my DH this September. It's our "do over" trip because I was diagnosed two weeks before we had a nice trip planned in September 2010. Since that time I have seen my son graduate from high school, visited my daughter in Italy while she was studying abroad last semester, and many other wonderful things! Life is good!
Kathy
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Annie - at cafe sounds like fun! Maybe he'll bring you the leftovers
From my experience of ending treatment, I felt at six and sevens. Like I was in the ocean in a life ring that had it's tether cut. You go from constant care - to see you in three months. After my first 3 month check up, I felt like a much stronger swimmer.
Bornto: a lady I was in chemo with, was in a fatal car accident. It helped to remind me, I could go any day from a whole host of options. Sorry you have to be handed that reminder, so young. I hope you are feeling better soon.0 -
OBXK --I agree I did feel like I had been cut loose and didn't know what to do-- and yes after my first 3 mo. check up I did feel much stronger!!!!
have a great day ladies!
Kelly
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Kathy - if you like, PM me...we should get together and compare notes, for sure! I will say that my local MO is part of the New Hampshire Oncology practice, who then has a contract with Dana Farber. Maybe that's why things are a little different. My DH didn't care for the Boston DF oncologist, personality-wise, but she is brilliant and directs my treatment. My local MO has a better bedside manner.
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Annie-don't you miss me too?;)
LuvRVing- I always read your name as luvring!
Inmate-I miss you!
Lovelyface-so glad you had benign results, whooo hoooo can you hear me screaming?
Titan-Way to go! Running in the heat, you go you track star!
Who was it that said it was cold? Annie? Well, it is rainy and cold here in the Pacific Northwest too!
Hi to everyone I haven't mentioned!
I went to my 3 month surgeon check up and left with a drain, yes one of those nasty drains! This is 6 MONTHS after my bmx! I guess I still have a seroma. I have to work with the stupid thing tomorrow!
I finished my quarter of school, got a "B" in geology, which I really thought I was going to fail that class! It was hard for me. Taking the summer off from school. Us old students need a break once in awhile.
I have started working out and doing weight watchers, hoping to get a bit stronger before my hysterectomy. I have been taking aromasin, makes me feel like I am not a triple neg, but really, at 3% er pos I still am, right? You all might kick me off this thread! My se's seem to have gotten a bit better from the ai, still get really stiff in the mornings. My doc wants me to get in a metformin trial, at first he was just going to prescribe it, now he wants the trial. We'll see on July 2.
Have a great Friday!!!!!
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Born2Survive - yes people do ask the wrong questions. Sometimes them just not knowing the right terminology can push me over the edge! I was asked by my own husband if my local recurrence made me Stage IV now. Good Lord.
Ladies - who's on anti-hormonals/aromatase inhibitors for really low %s of estrogen? Mine came back 1% positive this time, so that's what they're recommending - seems like such a tiny number. But if it makes a difference I'll try it! How bad have the side effects been?
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Bak94 - might be appropriate if I were 20 years younger reading these Fifty Shades books
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borntosurvive - People are so ignorant about BC, especially women that I am just dumbfounded at times. At our meeting yesterday, the Chairman, poor guy I do like him alot, suffers from kidney transplant SE's (he got a kidney from his wife, which was a 100% match), asked me in front of others whether I was taking any immuno suppresants (or something to that effect?). I was shocked. I think many people think of us as being forever sick, taking a million drugs. I said no...... before I could say more, my own boss came closeby, not sure how the conversation veered towards my boss, when I (big mouth) said, well, J and I both are over and not taking anything. The Chairman looked shocked, saying you mean J had cancer as well? I said yes, he had melanoma 7 years ago, and is recovered now. There were some very awkward moments. Anyway, my boss and another guy at work who both have had cancer, melanoma and prostrate, have said things to me, like, well, mine was nothing like yours, I think I got it just because of a sunburn. The other one said to me, it really was nothing, I think it was just the environment in my case. Well, what the hell was in my case? Just because it was TN, do they think that it is the most serious thing out there? No way, I don't think so. Actually, to tell you the truth ladies, I think having TN is better than having a hormone positive BC. My Onc. said that if it does not recur up to 5 years, he can tell me on my face that I am "cured". Many kisses to someone who said her doc said to celebrate after 2 years. I will find out for sure whether some of us can start using the word "cured".
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Born to survive--I'm sure we have all had at least one insensitive clod say something so totally inappropriate that the sting lingers long and deep. So sorry you've met yours so soon. My dear friends would come and sit by my bed and tell me about all the people they know who have died from cancer! They came to visit and comfort me, and BAM! hit me with that. I was never ready with a quick come-back, which I still regret. One recently asked if I was in hospice care.
My best thing today was having lunch with 16 friends from my school (where I taught until I retired). I wore my fake boob today and it kept showing up at the top of my blouse. Must have been quite a sight. At least nobody said anything.
To all of you who bare your souls here, and all those who help them: Bless You! May the side effects and worries take the weekend off. Jan
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born...ignorance is bliss I suppose. I had a friend who I was updating through facebook and she was not responding to my pm's so I asked if she was getting my messages. Her next message to me was along the lines of how hard it was for her to think about me having cancer and she just did not know how to respond. I messaged her back saying do not feel sorry for me because I do not feel sorry for myself. I have not updated her since. She was in a car accident a few weeks ago and has undergone some surgery with more in the future and of course I called her to see how she was. No--she did not ask about me. Selfish baby!! Ah well cutting my losses and going by the song by Katy Perry. Love the line where she says she just wants to know who is really there for her...this DX definitely separates those who really care and those who were in it for themselves.
Thanks all for the well wishes. I am doing ok. My arm hurts from the LE swelling but get tomorrow off along with a party for my DD's bestie for her graduation. Gonna dance the night away---with double comprssion on my arm of course. haha Today was a little bit of a rough day. My son's wife brought him lunch to work ( he works for me at my shop) and they talked for over an hour and a half...she still wants a divorce but keeps calling him for "dates" Hope she is not gonna really break his heart in the end. Trying to keep my distance and keep my nose out of it but still worried about my baby.
have a great weekend and gotta get myself a copy of 50 shades...want my sexy back!!
maggie
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Bak..if you even try to leave us we will come and find you and hunt you down...right ladies???
Hopefull..yeah..the pain is from the taxol...tell your mom she is not alone..I had no pain from ac (except from the freaking nuelasta shot..I hated that thing)... but taxol made me..well..creaky..and hurt.....It hurt to stand up...walked bent over until I felt I could stand up straight...the pain is usually the day after the day after...it sucks..but do have your mom try the claritin.aleve thing..it really does help...
borntosurvive..your screen name says it all...your friend is ignorant...I am hoping she is kicking herself in the rear for saying something so stupid to you...I think the best thing is to educate your friends and relatives about tn...I really think they just don't know...my sweet niece..and I love her dearly asked me how I could still be alive when I have tn and she had heard that no one survives it...I printed off information for her..sat her down and quietly told her the facts....people just hear crap and they believe it...I think they just need to be informed...Yes..women die from triple negative...heck..people die from any cancer..it is what it is..but...there are a bunch of us still around....
kathrynn...any luck at the casino? have fun!
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Good morning Ladies. Hope you all slept well. 10.30am again for me, it was wonderful.
LuvRVing - get your mind out of that gutter with that filthy book or your old fellar won't know what hit him. Told you it was Ooo la lah didn't I lol.
Your right about the weather, come December I will be basking in it and you will all have on your eskimo clothes and warm woolly knickers.
Glad your treatment is going well and that you had time with your grandkids. Nothing quite like spending time with kiddies. Keeps me young at heart if not in looks!!.
Tazzy - you really brought things back to me with that picture of Hattie Jacques, god she was funny. I loved those Carry On films. Remember Lesley Phillips and Charles Hawtrey that skinny chap with the glasses, priceless. They were so near the mark in those days but so comical.
Hoping your last treatment goes well for you. I will rechoice with you cause you so deserve that wonderful feeling.
Taz I don't know the time difference here because everyone lives in different states and I can't keep up with it. When I say good morning its probably lunch time or evening where everybody else is.
Hope60 - mini vacations are good for you. Enjoy every one of them.
Borntosurvive - how insensitive can somebody be. I would have said, "Terminal, god no, you probably will go before me". (After all she had one foot in her mouth she only needed the other in the grave lol). I really don't think those kind of people are worth bothering about but of course they do upset your day. You most certainly will be here to see your son graduate and to go to the wedding and see grandkids so don't let me hear you say that again (I'm telling you off here lol). Just tell yourself that you feel sorry for her because she will never be a good friend to anyone, people like that never are. They just like to ferrett out information. There is only One who knows when our time is up and he's not letting on, so enjoy every minute that you can and the next thing you know you will be shopping for a wedding outfit for your son's wedding.
OBXK - Thats all I probably will get, the left overs. He seems pretty serious about it though so I will have to support and encourage him, as long as he doesn't get too tired from it all. Though he loves to chat to people, bit like me.
Bak94 - I'm sorry my darling I didn't mean to leave you out. I was just trying to remember peoples names I hadn't seen for a while. Bugger about the drain. I don't think I will ever forget what they felt like. Hopefully it won't be in long.
Congratulations on getting a B in geology, you go girl. There's no stopping you. Yep taking the summer off will do you good and you will need the break from all that studying.
I had a hysterectomy at age 32 because I was having problems and couldn't have any more babies. Best thing I ever did. No more of those periods and a week or two after the surgery I felt marvellous.
Mags - you enjoy your dancing and try to forget that LE, not easy is it.
Ladies, I need some advice from those who have been or are on taxol. This will be my 8th this coming Wednesday and its really playing havoc with my fingers. I can't open a box, or type properly it looks like chinese, having a bit of trouble doing up buttons now, can't hold anything, can't close up together all the fingers on the hand and having so many problems with it. I have to go back after I have typed and put it all right again and takes ages. The right hand is not so affected. Mine was left BC. Do I carry on and hope it doesn't get worse or stop the treatment. I know they don't want me to stop but I have to think of my typing because I need to work and I don't even want to give up my job because I enjoy it. Just not sure what to do. Can anybody offer any advice. Part of me is scared to give it up because it just might be the last four treatments that kick this cancer to the kerb or have I got all the benefits it was going to give me already. Hope you can help.
Titan - keep on tracking. Remember we are all with you with those clapping thighs. Let us know how you get on.
Have a good day ladies. Kick LE to the kerb. Kick all side effects to the kerb in fact just keep on kicking. Love you all Annie
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Could'nt resist this
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CS - that's adorable!!!
Kathy - which casino? I love casinos...maybe we should meet up???
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Hi ladies, wow....been away from the thread for a few days and am trying to catch up. Must admit, I'm been away from the boards because I've been tied up reading the 50 Shades book...he he!!
I had my six-month MO checkup on Tuesday and all went well. However, I need to have some physio on my shoulder as I pulled/strained it a few weeks ago. Nothing delibilitating but he says some physio will do wonders to improve my range of motion. It's on my BC side so I'm wondering if I can just go to the normal place where I used to get physio or if I need to find some sort of special PT for cancer survivors. Does anyone know? I've had various issues in the past with the same shoulder and have had physio but that was before BC.
Hope you are all doing well.
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minxie, I am! I've had Tamoxifen for a year, then Aromasin for about 6 months, and now Arimidex. I will say going in that everyone reacts to these drugs differently, so my SEs may not be your SEs, etc., and like me, you may have to try a couple before finding one that works for you. With that in mind:
Tamoxifen was horrible. My blood lipids shot through the roof and I'm now taking Niaspan and Zocor for that. I also gained 30 pounds concrete-welded to my midsection like I was 5 months pregnant. My liver numbers were also getting wacky, so a liver US was ordered. It showed I had fatty liver disease, which goes hand-in-hand with metabolic syndrome (pre-diabetes, basically, with an increased risk of heart problems).
I was switched to Aromasin, which didn't do anything but add aching joints to the mix. I was on the brink of complete revolt by then (for 8% ER+ I was going through all this!), but my onc. convinced me to at least try Arimidex. My joints quit aching. My blood lipids came down a little. I asked my primary doc for Metformin and have been taking a low dose of 500 mg at night. My border-line blood sugar is back down, and I've lost 15 pounds. I can tolerate this, and if the SEs don't kick in again, I'll finish the 5 years out with the Arimidex.
But it's totally up to you whether you decide AIs are for you. Someone posted somewhere (still have chemo brain; sorry!), that AIs for low ER+ women may actually be as or even more protective than for women with high ER+/PR+ percentages.
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Morning...well its 3am here in Kelowna (pacific time)... think you are a day and a half ahead of us Cocker. Oh! how I loved those Carry on films.... now you can understand why I referred to the nurses as nurseys. And as for Lesley Phillips and Charles Hawtrey OMG... so near the mark. Has made me want to find them on DVD now and watch again.
The dexmethasone are working well, unfortunately the brain isnt' too much - you can relate I know. Sorry have no advice: re the tingling. Somewhere, someone (couldn't been this thread) said to try rubbing your hands/feet in different textures...like sand or even dried rice, carpet... anything that gets the nerve endings going. I have not had the tingling as bad with taxotere as it sounds you have with taxol... geesh, that's not good. Love the posters...both of them.
Sugar..happy your check up went so well... sorry dont know about physio. I am not that far ahead in treament yet.
Good luck with the run Titan... and remember when you are feeling tired, just remember us all there with thighs-a-clapping.
Welcome hopeful...sure hope you can convince your Mum to come on board - good luck and she is lucky to have a caring wonderful daughter as you.
If I have missed anyone I am sorry - swiss cheese brain at the best of times, at 3am its really holey.
We had an amazing thunder/lightening storm here a couple of hours ago. Hope it clear the air as was so humid yesterday afternoon.
Hope you all have great weekends... just say NO to SE's - now wouldn't that be nice if it were that easy. Hope they are bearable though.
Peace and hugs xxx
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Good Morning everyone. Trying to keep up on the comings and goings of our group here. Nearly impossible! Sending good vibes to all.
Hey, Jazzy, you mentioned your family is outside of Chicago. I am about 40 miles SW of the city. What burb are your people?
Have a great weekend, ladies.
Oh, and about the dumb things that people say....I was told that since it was "only breast cancer" I should be happy. Because I wasn't gonna die or anything. Are you F%&*ing kidding me???? Yep, haven't spoken to that woman for almost 3 years now. DUMB PEOPLE.
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dumb things that people say....my son in law..not my fav by the way..said after my surgery..well..the worst is over..LOL..I just gave him the "look" and walked off....after I had started chemo he came down and asked about why you want to kill off fast growing cells? so I politely gave him an education on cancer...doubt if half of it stuck..but sure did me good...some peeps are just sooo dense..
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Morning (again). Anyone else on here read the "Dumb Thing People Say when you Have Cancer"... called something like that... Unbelievable eh? My neighbour said to me - because I had the sick bank and full LTD at the end of it - I have chosen not to work since my bc dx. Any she said "well least you dont have to work"... like you think I want to be at home with chemo SE's...then surgery then rads - yeah its a blast. Bloody stupid people eh?
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Hi Ladies, just rolled out of bed after a late nite at the casino, and have to be at a cookout in an hour!
Had just enough time to catch up on you busy bees, and will answer later.
Annie, I wanted to answer your Taxol question. No one can tell you the right choice, but I will tell you what my MO said to me when it got really bad. (think I had 4 tx left). She said, "if you had to live with this pain for the rest of your life and it never got better, could you stand it?". It really hurt (felt like walking on burning glass), but since I could still walk, and I had to beat the cancer and be alive, to be around to complain, I chose to keep going. Where it's your hands (will limit your life much more than feet, and impacts your job) I don't know if maybe you should talk to your doctor and see if she can lower the dose or switch you to something else, to kick the beast's ass. You are in what we refer to as "between the rock and the hard place". ((Hug)).
*clapping thighs for Titan*
*hugs to everyone*0 -
Hello ladies!
Annie - they stopped my treatment 5 of 6 - due to neuropathy. Have they given you Neurontin to try? It helps with the zinging, but not the pain. they told me they like to get you to 80%.
I was ER + the first go round, I took tamoxifen for 1 year. I was miserable - I told my onco I had to stop, my quality of life was more important. Hated the AI's too. My cancer returned 7 years later as TN. BS says they see that a lot in women who took tamoxifen. They think it surpresses the ER + allowing the negative to thrive.
I do not regret any decisions I have made. I couldn't spend years in mental and physical pain, in hopes of not having a recurrence that would not be treatable.
Have a great day!!!
Clapping for Titan!!!!0 -
Hey ladies,
I missed so much I'll never catch up. I hope everyone is doing well. I've been enjoying my new social life but between that and my new job I need a break and am so happy to be staying in to clean tonight. I wouldn't change it for the world either. I do miss my husband and dogs though. Will see them next weekend then hopefully we'll move them up at the end of July beginning of August.
I have to share one of the best things that happened to me. Last weekend at a birthday party I re-met my stepfather's cousin and his wife, really don't remember them that well. I was a child the last time I saw them. They ended up buying my stepfather's house which he had inherited when his mom passed. I pretty much grew up in that house but have only been there once in 20 years when my stepfather was dying from cancer. We all got together last night at the house for a wine and I got to take a tour and WOW did it bring back some wonderful memories and they did a beautiful job re-doing everything. They left a little piece of my stepfather or grandmother in each room. It was really wonderful.
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