Calling all TNs
Comments
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Inmate, I guess the "good" news is that they are dealing with this on a step by step basis, and they are right on top of it, and it sounds likely that you can wipe out what is there. I hate this for you!0
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Newbie here today but have posted on other sites. I knew I was TN, but didn't really understand what that meant. My Onc never really explained it (or much else). I began chemo in Feb but had bad experience with Cytoxan and Docetaxel, and Onc switched to CMH for Mar 7th. Today is my 21st day, and having a good day before I begin my next 28-day cycle Apr 3rd. I'm 72 years old and trying to get through this cancer stuff. Not doing any reconstruction. Maybe if I was under 50. I don't want any more surgeries. I'm glad I didn't stop after reading more about Triple Negatives. Am encouraged to see survivors. That 3-year figure has really scared me. No one ever told me any of this. I will look forward to learning more.
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Hi Sugar,
I live in Port Credit and work downtown Toronto. Perhaps we are neighbours! I did my initial surgery and treatment at Credit Valley, then recon at St. Michael's downtown.0 -
Hi Merrinell,
Don't let the 3 year figures scare you. I am actually 3.5 years from diagnosis, 3 years since completion of treatment. I freaked about the TN initially, but chose not to dwell on it (well, I did dwell a bit).
I wish you strength, peace, and comfort as you head into your next cycle.
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Babies an Puppies...that's where it's at!
Welcome Merrinell.....this is the place to be.
Love to you all...........
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Inmate, I've been thinking about you and so, so wish you had gotten better news.. I hate FC.
Phyllis
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My last radiation is tomorrow. I am hoping to be able to have time to heal from this, my chest is fried! It has made me very tired this week, I feel like a wimp, as I know many have been through so much more. Last year at this time I had cancer and did not know it. I felt fine, but did have a feeling that something was off, boy was I right! It has been almost a full year of treatment, and as my surgeon said when I first met him "we are going to make this year h*ll, but you will get through it". At least he was honest:)
Inmate-when is your surgery scheduled? Puppies and babies are the best!
My chickens were so happy to be running around in the sun today, scratchin for worms and following me around talking to me. They actually look up at me and I swear they are trying to tell me something! I know, I am the crazy chicken lady! Right now my lil chihuahua is snoring away!
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Heidi, would this only apply to the newly diagnosed? I don't think my tumor was ever tested for the presence of androgen receptors.
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Gotta get to work, but just wanted to say the best thing that happened to me today is hearing "local recurrence" Inmate!
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Inmate - I'm so sorry you have to deal with this crap again, but at least "local reoccurance" is good news. Thinking of you and sending gentle hugs.
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Hi ladies....I have a question I've been hesistant to ask, mostly because I've been trying to ignore it myself. But I decided to bite the bullet and ask. I've been having some mild pain in my right hip for about a month now. First it was now and then, and now its more frequent. I mostly feel it when I've been sitting for a long time, like at work. I can't really tell if it's a bone pain or something muscular...sometimes it seems to radiate to my butt and down my leg. This is the kind of thing I would have totally ignored before BC and chalked it up to old age (I'm 57) but now.........? Should I be worried? I'm not due to see my onc until the end of April. Do you think I can wait or is this something that needs attention sooner? Thanks for any feedback.
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Hope 60 I was told to go by the 2 week rule so If I were you I would have it checked. Even though it def. could be nothing. Good luck!
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Lulubelle - welcome, and well done on the 3 years!
Merrinell - I am so sorry you are having such a tough go with your treatment. I remember well, finally feeling good, only to have to start all over again. We are very brave! I'm sorry you didn't have an oncologist, that better explained your dx. Don't worry to much about the 3 year mark. TN cancer is top heavy, meaning it is more likely to return, in the first 3 years. It also responds well to chemo.
I'm 50, and felt the same way about reconstruction! Get lots of rest.0 -
Thought I'd check back in. I've been lurking occasionally as I ride out chemo, but was trying to focus on the chemo links. I was so sad to hear about MBJ, LJ and Suze. I remember their posts from when I was first diagnosed and was on this thread more often.
I think I'll be back here more often once chemo is done (last tx Thursday!). Once I'm through chemo, I have the feeling that it will be a struggle to keep the 'what if....' at bay. I was just organizing some of the paperwork I've accumulated over the past seven months and made the 'mistake' of reading an article on TN, and let it get to me. I'm still trying to craft my catch-all response when friends/family tell me how great it is that I've beaten cancer. I tend to be blunt and straightforward, but I'm not sure how, "Yes, I got through that part, but it can always come back" will go over. That said, I am trying to stay positive, but it can be a struggle.
Thanks for being here, even if I haven't contributed much recently.
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bak - Congratulations on finishing Rads, yeah!!!!! Back to life now.
Inmate - Local recurrence, that is amazing, wonderful news! Really happy to hear that.
Hope - Have you tried the home cold/heat therapy already. Have you tried anti-inflammatory. I would try all that and if it still hurts, off to doc for checking it.
Heidi - Great article. Ha! ha! ha! As I read it, I thought to myself - is this why maybe I am more bossy, manly, stupid (?) .... having testesterone receptors? Funny! We don't have estrogen receptors but we have testesterone receptors???? what? I am going to print this article and ask my Onc. to test my tissues for these testesterone receptors. I am certain he will say no, but i am gonna ask him anyway. I want to know. Sometimes I wonder how they keep these tissues. Mine has been analyzed twice, by two different hospitals. Doesn't the tumor get all cut and messed up? Don't they take samples from every single area of the tumor, then how come, they can continue to test for more things? All this doesn't make any sense to me. I remember reading in one of my final path reports, that the first hospital had provided 17 slides to UCSF, 17 specimens. Weird and Gross!!!!!! Just some things to think about.
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Hope60, if the hip's not improving, I would get it checked out. It sounds like a pinched nerve, or it could be muscular, who knows? ... try not to go to the dark place... you'll just feel better getting it checked out.
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Hope, hip pain is very common and there can be many reasons for it. I had it before cancer off and on and still have it once in awhile. I agree with Luah, get it checked out if it doesn't improve. It could be your sciatica if the pain goes down your leg. We all know about the fear of new pain, but we can get benign pains too!
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Bak.....yeah for finishing. I can't help but chuckle every when I think about you, the pied piper of chickens, walking around your yard with a clucking entourage. puts a smile on my face every time!
Surgery is next tuesday and will only take an hour under local anesthesia. I will be home for dinner. I still have one more hurdle to clear with the pulmonary doc tomorrow before I can relax in the knowledge that it truly is just another local recurrence. Oh the suspense! Regardless what he says I am ready to battle this one out with all I've got. I just wanna have a doctor free summer. Next year will be it, I'm sure!
Thanks all for the comforting words. This is exactly why I come to this board. From the bottom of my heart, THANK YOU!
Have a great day! Love to you all.
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Heidi - That link is fascinating. I was diagnosed with delayed onset CAH in my late teens, which among other things causes an elevated testosterone level. I wonder if there is any connection.
Inmate - Wishing the best with your surgery. I hope you get that doctor-free summer.
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Inmate - good luck with surgery tomorrow and here's to a doctor free summer!
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Just got my blood work back....low WBC again. Has me scared and MD says somethings up. Does anyone know anything about bone mets and what the symptoms are?
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hurray BAK...woot woot...so happy you are joining us in the done with rads catagory! And Rachel hurray for chemo almost done. I am 3 months ahead of you with chemo, it is a great feeling to put it behind but the fears are there for all of us.
Had the pet scan today and gotta wait for the results. I see the MO on april 17--three weeks--not sure I want to wait for them that long. May just pick up a copy next week when it's ready. Then again my MO would prob call me if anything lights up RIGHT??
Wren--sorry you have something else to worry about. Hope it is just your body still recovering. love where you live....went there for last big vaca 2 yrs ago and it was amazing
Maggie
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Hope60, lots of us have found ourselves with arthritis when we never had arthritis before treatment. Maybe its just getting older, but it may well be a delayed SE from the treatment. I had back pains that scared me silly, but it was arthritis. I also get hip and leg pains if I sit in a car for very long. If it continues, of course, get it checked out but I'm betting on it being something benign.
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I was clicking through this topic and read the sad, sad news about LJ, Suze and MBJ. I had to quit reading for a while. I've skipped a LOT of pages on this thread. FAC is pretty much kicking my ass so when I get some energy I will go back and catch up.
Inmate - good luck with the surgery and good luck with the pulmanory doctor tomorrow.
Bak - thanks for the chicken story!
Thanks all, for being here to come back to.
Phyllis
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"Older" women with tnbc...welll that would probably be me..I was 49..I was wondering about that..since tncb is supposedly younger women, african americans and women with a certain Jewish heritage..I am older, caucasian and no Jewish heritage...I guess "they" have found out where I (and some of you) finally fit in.
Well..that will help me sleep better....(not)
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Inmate, Mags, fingers crossed for you.
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Hope, hopefully it is something benign. I go to a physical therapist and luckily did before BC for back issues so feel more comfortable when I get the same hip pain I had before - it is from an sacroiliac joint that gets "stuck" and a lumbar malfunction. Part of my PT therapy involves taking a break from the constant sitting I do to lie on my stomach face down, supporting my forehead with my fingers for 15 minute intervals. I am supposed to do this about every few hours but am lucky to have time for once daily but it still helps. I also try to do this before I go walking. If my pain didn't respond to this or got worse, I would let my oncologist know, however.
Inmate, thinking of you and hoping your surgery goes well. Sending hugs to you!
Bak, congrats!! I love the chicken stories, too. I would love to have chickens. My friend who has a cat and dog rescue has chickens and they run around with the cats. The cats never bother them.
Phyllis, it's good to "see" you again. We have had tremendous losses here lately. I think of our missing friends daily.
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I've been off the boards for a while and am saddened to read of the passing of 3 wonderful ladies.
Inmate-good luck with your surgery.
I had a major setback a couple of weeks ago - ended up in the hospital for 3 days with a slight case of pneumonia. What's worse is that my father-in-law passed away the day before so I wasn't able to attend his funeral. My poor boys lost their pop-pop and had to attend their first funeral and were pallbearers - and I wasn't there to support them. Ugh. I hate cancer.
My 2nd tx of Taxol had to be post-poned for a week, too. But I'll better now and should be able to get it tomorrow....actually looking forward to it....just want this over.
The best thing though is that my MO is going to put me out on short-term disability for 6 weeks. And, we got our tax refund yesterday so I can pay off some credit cards - reduce stress - and sock some money away for our post-treatment vacation!!
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Sorry to hear about your setbacks CharB22 and your father-in-law's passing.
Good news about the disability, though. Hoping things look up for you.
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Hope, I'm having the same lower back issues, especially when I drive - lower back pain that radiates to my right butt and leg. Braking is the worst. It started about 2 months ago, right when my rt shoulder finally started improving after all my PT and excercising (whoo hoo, i can lift 15 lbs now!) . Right now i'm chalking it up to arthritis or prolapse related issues, and enjoying my denial - but let me know if you learn anything.
Good luck with surgery Inmate!
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