Calling all TNs
Comments
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I agree with MBJ - moving so fast!!
Lovelyface - you aren't barging in!! I was just thinking about you yesterday! I hope your scan is all clear, I know you must be afraid. I can tell you my RO said that very, very rarely does cancer go to the hands - it prefers the longer bones, femur, ribs, spine. It isn't unheard of, but unusual. So if you are just having hand pain, I would lean more towards neuropathy. And congratulations on your son's wedding! You must be so proud
.Titan - I think being early stage, you are good without scans. I am getting scanned to high heaven, but I don't like it, because I know it means my doctor is expecting to find something. As long as you are feeling good, keep on keeping on is my motto!
bkj - my BS didn't blink at my request for a BMX. In fact, she told me she would recommend it (after I told her) because she said she had many patients regret not getting one, but none that did. So I don't think you'll get any pushback.
blondelawyer - I hope you are feeling okay and were able to get some errands done.
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Ugh, I am still dealing with headaches, and I don't have a clue why. I *think* it is the Ativan, but I've been at a steady dose for awhile and have been waiting to step down. I had a clear brain scan in May, and they aren't debillitating or anything. I've always been prone to headaches, so its possible this is just my new normal. But I hate it, it scares me.
On a positive note, it looks like the mass the doctor found on my step-sister's MRI is benign, yay! She still won't get all the information on her DCIS, but that is her choice. I can't push her into it.
Have a good day everyone!
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Blondelawyer,
I do not post here often, but I lurk quite a bit. On the subject of letting your BS know what you think is best for you. I f you have to take someone else to that appointment, do it. I know my BS was trying to talk me into a uni, I had my DH with me and had already already seen the PS also. I just let the BS know that I did not feel that I could ever be comfortable knowing that the other one could end up with bc also. Also I was a DD cup and did not want to try to match that for a reconstruction. "Let's go smaller and be more comfortable." If the BS will not listen to your concerns, you might have to start shopping for a new BS
Those are just my experiences and opinion.
Beccad
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hi all,
so many names i can't keep up!
Suze- I have Ativan also, if I take more than one day, I have headaches. Hope that helps.
Someone asked if my silicone implants were sensitive to US, and I have only had it on the area once, but it was nothing. I have been a "scanner" since my first recurrance in 2006.
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hello ladies,....I AM DONE I AM DONE had my last round of chemo yesterday I can hardly beleive it I never ever thought I would get here, I almost quite after number 4 as some of you may remember but I did it
I did get on antibiotics for the boil good thing I did cause if it was still as big as before they would have put off my last chemo for a week. That would have been so bad as I didnt have to have one postponed all the way through.
Its Canada day today and I am feeling good except for being tired I just may indulge in a drink tonight lol.
Hugs to all
Kymn
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Kymn - yayyyy!!!! We knew you could do it - you go girl!! I'm so glad you got the boil taken care of, that would have sucked to have to put it off. The rest of your treatment is all downhill from here
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Okay, can I vent about something not at all related to BC and completely petty?? So, I really dislike my neighbors. I don't use the word hate - I've removed that from my vocabulary...but they are real winners *eyeroll.* The wife is a backstabbing gossip, the husband a bigot, and their child a bully. Anyway...
The husband just pulled up in HIS "new" MG Midget - grrrrrr!!! Dollars for donuts he saw mine and said, hey, I want one, and next thing you know...
I know, petty. I wanted to be special
. LOL. The worst part is, he's a darn good mechanic, so he'll have his running great all the time...DH and I, well, we are still learning.But, if I do say so myself, mine is sooooo much nicer, all chrome and white and pretty. His is a tacky orange with rubber bumpers. HEH!
Okay, vent over, lol.
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Suze: OOoooh that would really get to me, too, however you do have the nicer one and I am so sorry your neighbors are so awful. It's always been my biggest fear that we finally buy a house and we have the neighbors from hell.
Kymn: YAHOOOOOO!!!!! CONGRATULATIONS!!! You celebrate and enjoy yourself this weekend! Thank goodness it's over.
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I had my big toenail come loose from the nailbed on AC..it has never fallen off, but is not connected for the most part, but I have seem the very bottom having regrowth..so will try to keep it as long as I can..especially with summer. I also had my thumb on the same side turn slightly grey.
As far as scans, my dr. said e same thing..since I was node neg she wouldn't normally do a petscan..but would do scans as needed for symptoms. I asked for a petscan and she agreed to do it, which has led to. Thyroid biopsy yesterday..so wondering if that was a good decision on my part or not....0 -
Kymn- WAHOO!!!! Congrats- what a great day for you!!
Suze- that would really piss me off!! Years ago I bought a brand new Firebird and a close friend went and bought a new Camero one week later. It really irked me that I finally had a sports car and she sort of stole my thunder. I know, very petty, but I was still mad!!
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Hi all,
Well I got my biopsy results back and they are not good (insert swear word of choosing here). I have 12 spots of which 3 were biopsied. All 3 came back with Invasive Ductal Carcinoma. This is the same cancer as last time with one 4cm lump. I opted for a lumpectomy that resulted in clear margins and no post op issues. This was followed by 4 rounds dense dose AC, 12 rounds of Taxol and 7 weeks of rads with 5 boosters. My treatment ended on March 4th of this year and these 12 new spots showed up on my first post-treatment scan. How the HELL is that possible! I just finished with treatment. UGH! I am really just numb and know that it will sink in sometime this weekend. Anyone else have a recurrence that soon? The MRI didn't show any issues elsewhere (no mats yet) so far this looks like a very nasty assault by the same cancer that got my the first time.
Sorry to put a damper on the weekend. I know I am still going to enjoy mine. I have 4 baby kittens that are 5 weeks old to foster and my nieces 8th birthday party, plus my 11th wedding anniversary.
Enjoy your weekend with family, with friends and with the ones you love.
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So sorry, Inmate. I can't keep up with all y'alls dx and dates. I am a little scared knowing that my left breast still has something growing as well as my right one has something there also. Both are painful...so, I guess I need to have a heart to heart with my cancer Dr. soon about more test. Especially since I've been feeling so bad this week.
I do hope everyone has a great 4th! Hugs!!
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I'm so sorry, inmate. That massively sucks.
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Sorry to hear this inmate. I wish I had some words of wisdom, but I don't. Just want to offer you support and a cyber hug.
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Hi guys. Just back from Blowing Rock with the horses and wanted to check in. We had a blow-out on the RV at 65mph which really set us back a bit but all's well that ends well.
You guys sound like you could use a bit of humor, so:
TELL ME THIS WON'T HAPPEN TO US !!
Three sisters, ages 92, 94 and 96, live in a house together. One night the 96-year-old draws a bath. She puts her foot in and pauses. She yells to the other sisters, 'Was I getting in or out of the bath?'
The 94-year-old yells back, 'I don't know. I'll come up and see.' She starts up the stairs and pauses 'Was I going up the stairs or down? The 92-year-old is sitting at the kitchen table having tea listening to her sisters, she shakes her head and says, 'I sure hope I never get that forgetful, knock on wood.' She then yells, 'I'll come up and help both of you as soon as I see who's at the door.'
TELL ME THIS WON'T HAPPEN TO US !!!!
Three retirees, each with a hearing loss, were playing golf one fine March day. One remarked to the other, 'Windy, isn't it?' 'No,' the second man replied, 'it's Thursday.' And the third man chimed in, 'So am I. Let's have a beer.'
TELL ME THIS WON'T HAPPEN TO US !!!!
A little old lady was running up and down the halls in a nursing home. As she walked, she would flip up the hem of her nightgown and say 'Supersex.' She walked up to an elderly man in a wheelchair. Flipping her gown at him, she said, 'Supersex.' He sat silently for a moment or two and finally answered, 'I'll take the soup.'
TELL ME THIS WON'T HAPPEN TO US !!!!
Now this one is just too Precious...LOL!
Two elderly ladies had been friends for many decades. Over the years, they had shared all kinds of activities and adventures. Lately, their activities had been limited to meeting a few times a week to play cards.
One day, they were playing cards when one looked at the other and said, 'Now don't get mad at me .... I know we've been friends for a long time, but I just can't think of your name! I've thought and thought, but I can't remember it. Please tell me what your name is.. Her friend glared at her for at least three minutes she just stared and glared at her. Finally she said, 'How soon do you need to know?'
TELL ME THIS WON'T HAPPEN TO US !!!!
As a senior citizen was driving down the freeway, his car phone rang.
Answering, he heard his wife's voice urgently warning him, 'Herman,I just heard on the news that there's a car going the wrong way on Interstate 77 . Please be careful!'
'Hell,' said Herman, 'It's not just one car. It's hundreds of them!'
TELL ME THIS WON'T HAPPEN TO US !!!!
Two elderly women were out driving in a large car - both could barely see over the dashboard. As they were cruising along, they came to an intersection. The stoplight was red, but they just went on through.
The woman in the passenger seat thought to herself 'I must be losing it. I could have sworn we just went through a red light.' After a few more minutes, they came to another intersection and the light was red. Again, they went right through. The woman in the passenger seat was almost sure that the light had been red but was really concerned that she was losing it. She was getting nervous At the next intersection, sure enough, the light was red and they went on through. So, she turned to the other woman and said, Mildred, did you know that we just ran through three red lights in a row? You could have killed us both!' Mildred turned to her and said, 'Oh, crap, am I driving ?'
BTW, below is my email signature line. Thought some of you might find it inspirational."We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot."
-Eleanor Roosevelt
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And of course, there's always MacFry... "Carolina on his Mind"
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Hi inmate - sorry to hear of the recurrence so soon after the treatments. Was just informed by my onco that it is not unheard of for TN to have a recurrence within 6 months. I am scared stiff too and am changing lifestyle and diet. Check out www.budwigcenter.com hope it helps.
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Heidi..I have a quote from Martha Washington: "I am still determined to be cheerful and happy in whatever situation I may be; for I have also learned from experience that the greater part of our happiness or MISERY depends upon our dispositions, and not upon our circumstances"..
Ah well..maybe reading this now and with Inmates bad news..that may be BS...in fact..I think it may be a bad quote after all...oh well..maybe someone may like it..it got me through chemo.
Inmate..your news sucks...so..what is next...bad boob is prolly going to go..right?
This reocurrence thing...I never knew during my first year that this was the really scary one...I thought we would be safe..doing surgery, chemo/rads...you would think that you would be safe.at least for a year or two!...
Have I said lately that CANCER SUCKS!
Haven't updated you on my 25 year old friend with TN. Stage 4..it will be almost a year since she was diagnosed...had chemo, had bilateral MX, more chemo...now she has been accepted into a clinical trial at a Cleveland hospital...she needs all the positive thoughts you guys can offer...thanking you in advance.
Oh and Heidi..I hope to hell that we all are on here in 20-30 years and don't know who the heck we are talking to......I think that some of us act like that now!...HA> HA..chemo brain
Oh and Kymn...you did it, you did it, you did it! Awesome, Awesome, Awesome..knew that you could get through it girl..so PROUD of you..
Now have that drink tonight..but take it easy for a little while ok? Getting back to normal takes awhile..but I can assure you that you WILL feel better every day....really!
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Inmate, firstly all the best vibes and positive thoughts being sent your way...xxxx
bkj66 & blondelawyer, I have pretty much decided that I will be asking for a bmx when I finish my neoadjuvant chemo on 12 August... Although the statistics don't seem to indicate that there is a significant reduction of risk of recurrence, I know I will feel safer by having both sides done. My BS thinks I should wait and see, as a lumpectomy might be possible since tumour has shrunk considerably, and I know from what I've been reading that surgeons seem to be a bit concerned at the over 100% increase in women asking for the drastic alternative (in one USA study I came across). But ultimately I think we should decide for ourselves and choose what we feel most comfortable with.. I know a bmx will help me psycologically once chemo, surgery and radiotherapy are over, especially due to the fact of being TN. I write questions down before meeting the doctors so as not to forget what I need explained. I'm also lucky that my sister is a nurse and usually accompanies me and asks her own questions..but having a friend/ partner attending, even if they are not medical practitioners is useful as they can remind you of things which you might have left out.And you have another set of ears which might remember things said by the doctor which you might have forgotten.
Heidi Too, I loved your jokes, thanks.
Good luck to all of you, and take care of yourselves!
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Good Morning, gals. Thanks for jokes, Heidi. The last one about the red lights made me laugh out loud. Just confirms that I am more than willing to give old age a shot.
Kymm---Feels so good to be finished. Remember to take it easy. Your mind will say "go" but your body will say "no" Everyday things will get a little better. But it does take time.
Inmate--Sorry to hear about what you have going on. Your positive attitude really shows your strength. Sending you lots of hugs.
Titan--hoping for the best for your young friend. Cancer Sucks
Suze---Enjoy the Hell outta your car! Yours sounds so much nicer.
Wishing everyone a Happy 4th. Remember to Thank a Vet or active service member!
Navy
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I could be wrong and correct me if I am, but Inmate's situation is similar to Laurajane's...I am not so sure its a true re-occurence, but that the chemo they took didn't completely work. The current research is to figure out the subtype of each cancer to determine the best chemo treatment. So, it just may be a matter of finding the one that 'works'. And no mets, yea!
I had adriamyacin/cytoxin that knocked mine out in One chemo treatment.
Please try not to worry too much..you have many options and treatments still available even tho we're TN's.
I'm fostering rescue dogs to keep my sanity, and my current one Sascha barked 'i love you'. She is awesome! Enjoy the little kittens!
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inmate - I'm so sorry to hear of your recurrence. As Ruth stated, my doctor would probably consider it progression. I can empathize - my cancer stopped responding to chemo, and continued to progress to my supraclavicular nodes during radiation. No distant mets though, so we are still hopeful, and I will be doing more chemo starting a week from Monday. Hang in there, sometimes it IS just about finding the right drug.
Heidi - those were great, lol. I can only hope to be 92 and THAT forgetful
. I'm glad you had a great time, but that sucks about the tire! That can be so dangerous, so I'm happy you are safe. McFry looks like he had a great time also!Titan - I'm thinking of your friend, and hoping this clinical trial kicks butt for her. 25 is just so damn young
. And I personally love your quote - I find it to be true, even in the worst of times.Frances - welcome! I'm so sorry you have to join us. Diet is an important part of fighting TN definitely. I'm not 100% faithful, but I do watch what I eat as much as I can and try to exercise.
Rella - Thanks for your experience with Ativan. I've been on it since October, and I am having a really hard time weaning off of it. I'm down to 0.75 a day, but I'm struggling with these headaches, and I think it is related. My last brain MRI 6 weeks ago was clear, so its the only thing left short of my melatonin. I may have to drop it to test that out, but if it is the melatonin, I'll deal, because I really don't want to give that up.
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Thanks all for understanding about the car, as petty as it is
. I took my oldest for a ride last night, and he was asking all about driving. So my new goal is to live long enough to teach him how to drive my car - I'd even be willing to start when he's 15 - so 5 years. Hear that universe???
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inmate - so sorry about your recurrence. That really sucks. I was wondering as I read your post if you have had genetic testing? That sort of volume and aggressiveness strikes me as possibly being related to one of the BRAC genes. If you are BRAC positive, they recommend a hysterectomy in addition to BMX to great reduce the risk of future recurrence. At least that is what I remember being told at the time of my diagnosis. That may be something to look into if you have not already.
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Inmate: So sorry to hear your news but I do agree with tnbcRuth: the chemo probably wasn't the right one. Sorry you have to go through this but there are many options for you to try and one will be the right one for you! Hugs!
Heidi: Thank you for the laughs! We can always count on you to keep us in stitches, lol! I think I am already there with the chemo brain but hopefully I am not running any red lights...yet!
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Titan: 25 is so very young to be fighting this and I truly hope she pulls through and this trial works for her!
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Happy 4th of July and I hope everyone has an amazing weekend!!!
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I like you new avatar, MBJ!
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Thanks Navymom: That was at a roaring 20's new years party 2011 and my DH grew the mustache just for the night.
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Hi Everyone,
I'm living back down at my Mom's (which I refer to as the Land Before Time) which has no internet. (Okay, thank you very nice neighbor who didn't secure their linksys, but I can only access it outside up on the stone wall, lol) I did get an IPhone, so I'm only about 10 pages back on catching up with y'all
Welcome to all the new members and contrats to those with good news.
I've done my 5/12th Taxol and I'm feeling great! Some neuropathy, but I've lived with it for years from my back injury, so I guess it doesn't bother me much. Only one rude surprise. My nurse (my girlfriend refers to her as "dumbass research nurse from hell") told me my hair would "very gradually thin over the first two months of treatment", would be fairly thin during 3rd month, then I would lose the rest when I got the AC. In 5 days after my 3rd treatment, I took enough hair for several small rodents, a Yorkshire Terrier and a Shetland pony out of my head. Lost 70% of my hair in 6 days. Thing that ticked me off is that I have a "Shave the Head" party planned and I've now had to scramble to move the date up. Other than that I'm great. Not really any different physically than before starting chemo. Hope that lasts through this round.
I haven't quite caught up with all the posts but I do have a couple questions.
Suze, I've obviously missed something! I read your scans were all good, then I saw you're doing chemo again. What did I miss?????
Several people were talking about SE of joint stiffness, that didn't improve after chemo ended. What specific chemo were you talking about.?
Thank you to whoever posted the Paula Young website. I never would have thought of ordering to try and then shipping them back.
Be well everyone!
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Thanks all for the kind words of support.
As it turns out I am not BRCA +. I was tested when first diagnosed last year. I spoke with my onc and he was surprised at the aggressive nature of this cancer given the treatment I had. My margins were good with the lumpectomy. I will be having "lefty" removed very soon and will need to decide on having the other one taken as well. Does anyone have advice/opinion on doing both? My first thought is yes. I don't want to go through this again and quite honestly I'm more of a symmetrical kinda gal.
Thanks again for the support and chuckles Heiditoo. It was very nice to laugh so hard on such a rough day!
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inmate: This is such a hard decision! I opted to keep one as I have never had problems with this side and I always had problems with my MX side. What does your onc recommend? Personally, I would go with my gut feeling combined with the facts. Others feel so certain about removing both and that brings them peace of mind. Call me crazy, but I have never really worried about it happening in my other breast. I had my one year Mamo/US and my right breast is still clear and always has been. I don't know if this helps at all but I think only you will know and that you will have peace of mind once you make your decision. Hugs!
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Happy 4th of July to all! Also my 13th wedding anniversary. DH just reassured me we will grow old together.
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