Calling all TNs
Comments
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Thanks for the support, Dr advises stop work and rest.
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Maria, thank you, this is going on 4 days now. dr doesn't seem concerned. They put me on an antibiotic and told me it will run its course. The more I think about it, I do think I got sick last week with an intestinal problem and passed it off at SE's, now my body is just trying to keep fighting it off. I don't know why I'm so freaked out about it other than next week is my last chemo and I don't want it to be delayed and maybe its just added stress and the whole situation is taking it's toll.
How are you feeling now, your all done chemo right?
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Jazz3000: Sounds like you're in excellent hands!
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Hey ladies..stopping by for a quick second..wedding planning going on..
Bernie..hell yes..you are are still tired and not feeling well! I thought (and so did everyone else)..that once I was done with chemo I would be normal again..ha ha...like Heidi said..normal is a long time coming.
But really..it does get better..since you are DONE you are expecting to feel normal right away (at least I did)..doesn't happen..give it some time...
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thanks teka, it doesn't hurt anymore. steristrips are still on, the top incision is a little red and swollen the last couple of days,i've been putting antibiotic cream on it.
hopefully,they call tomorrow with the date it'll be placed and hopefully,they'll be able to put it in. i have this fear i'll be npo for 10hrs (hate that),get up there about 1 1/2 hr trip and they'll say can't do it!
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My laugh for the night:
My parents taught me
Religion........ " You better pray that comes out of the carpet"
Logic......... " Because I said so, that's why!"
Irony........" Keep crying and I'll give you something to cry about"
Wisdom........." When you get to my age you'll understand"
... Justice........." One day you'll have kids, I hope they turn out just like you!"
From a friend on FB.0 -
Hi ladies,
I think I posted on here once before...I don't really know cause its all just been so crazy until now. I had surgery to remove my tumor last Thursday and they put the port in for chemo yesterday. I can't figure out exactly how to respond to the triple negative info. They say I am stage IIIa but only because it had spread to one internal mammary node enough to enlarge the node. I'm not sure why that makes it a higher stage than an axillary node but my surgeon panicked when she found out, the first oncologist was worried but felt chances were very good we could beat this for good and the second responded, "I don't even want you to think that way" when I told him I was worried about recurrence but would cross that bridge when I got there. My surgeon told me this was an IDC but the to oncs said it is an adenocarcinoma because it tested negative for every kind of tissue (breast, liver, endocrine, lung,etc.). They also said it is just because they are so primitive and differenciated they can't tell but they are sure it is breast cancer because it was in the breast and node and they didn't find it anywhere else on the CT scan.
My first onc wanted to do DD acx4, DDtaxolX4. The second wants to do TAC x6. I think I am going with the second because he is closest to my house (3 blocks vs. 1 1/2 hours). He is also affiliated with UVA (a big research hospital) and treated my mom successfully 6 years ago. The things he said made sense too. The first was going to do chemo 7-10 days after surgery and the second says I need to heal at least 2 weeks and that it won't affect my long term prognosis to do so. He also says, "it's possible you are already cancer free now that the tumor and node were removed successfully" we just need to make sure with chemo and that can wait an extra week or two. He just seems so sure. I went from "this is an aggressive cancer, but we got it early and you are probably stage one because it is probably smaller than the images measure" to a panicked surgeon who says my internal nodes are affected and something bad is happening, then to explanation of stage IIIa now and this is more serious back to a doctor who is talking about it not being a walk in the park but seems way less worried. I'm not feeling really worried and that is worrying me...if that makes sense. I'm afraid if I don't worry, I will get blind-sided like I did when the biopsy came back positive and when they called to say "oops, we were wrong something bad is happening." I want to be confident but I don't want to be stupid.
Any thoughts?
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Hi mccrimmon, a few days can make all the difference, so you should be fine for last chemo assault.. I finished exactly 5 weeks ago now...suffered pretty badly from tiredness for a good 10 days after last one, and taste was ruined for almost 3 weeks...now much much better but definitely not yet back to normal. Still feel more tired than usual at the end of the day, my toes are still quite numb, but might possibly be slowly improving, not yet sure, can't walk uphill or climb stairs without groaning. To be expected I suppose, so I'm trying to be patient... but in fact am getting very impatient waiting fro my dmx scheduled for 5 October..time passing far too slowly! Best of luck, hope you're feeling better and you'll be SO PLEASED when you've taken your last one!!!!
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Hi Maria,
So I went for my weekly bloodwork yesterday, sure enough I had a fever and my WBC were thru the roof so now I have an infection, they've assured me its no big deal, they just need to find out what type of infection to treat me with the right stuff and I should be good to go on Thursday, I'm alittle afraid they are just saying that. I still have the fever, I'm still freaking out and I'm on my way to get a chest xray to rule out broncitis, pnemonia, etc...
Glad you are done your treatments but sorry you have to wait so long for surgery, the waiting for me is the absolute worst part.
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mmcrimmon hello,
Good luck with xrays, finger crossed you're ok for chemo next Thursday...antibiotics will probably do the trick!
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Lwarstler,
sorry you've had such a roller coaster ride. From the research I've read, there is evidence now (coming out of M.D. Anderson) that Taxol first is more effective than Taxol after the other chemo. Also, dose dense is more effective. Thats the only little bit of information I have.
I suggest you check the Triple Negative forum for some good discussions on treatment options. http://forum.tnbcfoundation.org/tnbc-talk_forum1.html in particular there is a thread called "Attention Newbies: Important New Chemo Study" http://forum.tnbcfoundation.org/attention-newbies-important-new-chemo-study_topic7771_page8.html
Several of the ladies on the Triple Negative website have had experience with internal mammary nodes, and I think you could post questions to them about that.
This is a scary disease, and we all feel that, but our chances of survival are good. Keep posting here and you will get lots of support.
Susan
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Lwarstler, just for a point of reference, I did DD AC x 4, followed by weekly Taxol x 12. I think the weekly Taxol is supposed to be a bit easier on the body, in terms of SE's. That is one common treatment regime, and there are others.0
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Lwarstler: Sounds like the 2nd dr. is offering the best care and I found when it came to all things BC I really had to listen to my gut as to who I wanted to work with. I kept a wide berth around anyone who was scared, unsure or negative. You need a positive team around you and there are many women with several or all nodes taken who have survived TNBC. It's kind of a crap shoot. Most of us do fine, some of us struggle to find the right chemo that works for us, and some have trouble form the start due to the late diagnosis. The fact that they got all of the cancer out with clean margins is very encouraging, even if there was cancer in one node. Yes this makes you a stage IIIA, but most of TN's are stage III due to the aggressive nature of TNBC. Chemo clears up any stray remaining cancer cells, if any. Just know that TN is NOT a death sentence. Hugs!
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Jazz: LOL! Thanks for the morning laugh.
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Susan and MBJ: Thanks for the reassurance and for reading my crazy long post.
I had read that post about the Taxol first and it was one reason I thought the second dr. made goog sense. You are right about the need for positive people arround. I find the second doctor to be very comforting in his treatment style and my confidence went way up after talking to him. I actually just got back from my GP and she said the second doc is definitely the one to see so I am feeling even more confident in my decision. Thanks again for the support.Lee Ann
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Ladies - thanks for your good thoughts....the mammogram report was just posted and it said "no evidence of malignancy." Next one's in a year. This is the very first mammogram that was good from the getgo. Hurray!!!
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Way to go Sugar!
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Sugar77- Happy for the good news.
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Sugar77 - Glad to hear some good news! Have a great weekend...
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Yay Sugar!!!!
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Jazz lol - when I was dx 8 years ago, my husband took over everything, and I never took it back :O
I was just getting my strenght back, adjusting to my new normal. The Universe must want me to slow down. Came home today!0 -
OBXK...lol When I had the c-section with my daughter, the doctor didn't want me to vacuum so my husband took that over. My baby is now turning 12 and he still does the vacuuming. He wasn't at the six-week follow up when she said I could resume my normal activities and I've never mentioned it.
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MBJ - Thanks for your reassuring post. I'm two months out from discovering my lump, and still in the process of scheduling surgery. No scans, no other tests since my 8/12 biopsy. It's been nervewracking reading stories of other TNs going from Stage 1 to Stage III or IV within a matter of weeks as more info becomes available. Still trying to look on the bright side, and it helps to hear good things from some of you on these threads.
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yaaaay Sugar77! woot woot!!
In two weeks, I have my second 6 month post-everything mammograms and check up with my onc and surgeon. Scanxiety central. Guess I wouldn't be nervous, but -- like others I read, and I KNOW it's in my head, but I have these weird twinges and pains, but feel no lumps or anything weird, in my lumpectomy (and now, lymphedema-fied) breast... I'll feel so much better after my scans.
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rachel: It's standard of care for TN's to usually have scans & MRI's prior to surgery. I had chemo prior to surgery and the scans and MRI saved my life! You have to be very proactive with your care and ask questions if you feel uncomfortable or you don't understand something. Hugs!
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Hello friends--I had chemo round 2 today--Taxotere/Cytoxen. So far doing well. My doc said yes, that I am 11 years in remission from my Triple neg BC (not even called it so then). I had a mastectomy then and four rounds of A/C. I have a breast surgeon now. Apparently, from a few healthy breasts cells left then (no radiation) I grew more breast tissue and eventually a different Triple Neg BC sometime between 2009 and this spring. I am scheduled for radiation this time to my left breast where the tumors were found, and then many months later, both sides will get new permanent implants (I had a prophylactic mastectomy done on the right side in 2001 by my previous surgeon.) I'm beginning to wonder if I should ask my new surgeon if she can be part of that surgery to be as certain as possible that any remaining breast tissue is gone. I would appreciate knowing what you think? Am I just worrying too much? Best and no SE's!
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I am in the process of having a PET scan scheduled, finally. The hardest part of this is learning what you need to know in order to be proactive. When I sat down with my doctor to discuss my dx, she gave me what seemed at the time to be a very good explanation and a flow chart of what to expect (her next step was to send me for the brca test, which would have taken 3 weeks if I had waited for her genetic counselor to be around and waited for the results; I at least too my gyn up on his offer to have it done at his office and cut 4 days off). I walked out of the office (with my parents - a retired gyn and a nurse) thinking, Stage 1, not too bad, and having no concept of what TN meant. In fact, for some reason I almost felt like it was a good thing (my own hormones aren't doing me in... that's good, right?). Grade 3 was never really explained. It took my parents, after about a week, to really get through to me that Grade 3 TN was aggressive and I should be pushing. Even the wonderful Breast Cancer Treatment tome my doctor had given me hadn't stirred me to action. If it hadn't been for my parents, I don't know how I would have known to be pushier.
Even when I asked doctors, I was told - it's no emergency, there's research that 3 months doesn't change the usual outcome, etc... Part of me wonders whether this relaxed attitude comes from the fact that there are such great drugs out there to deal with cancer once it's spread. Do doctors feel, well, if it spreads, we can deal with it, rather than, let's catch it before it spreads?
Flautalee - I'm sorry to hear about your new developments. It's scary that we can go through something as extensive as a prophylactic BMX and STILL have to worry about a few random cells.
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Great news Sugar!! My husband has vacuumed since my mx last Sep't. 15. I had reconstruction-so it hurt to vacuum with the TE- had a frozen shoulder (still have it) so it hurt to vacuum, then had exchange surgery-hurt to vacuum. It's now a year later and my husband just up and quit vacuuming! I guess he feels he has done enough. So, how do I get him to vacuum again without having any BC related problems?!! LOL!!
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Rachelvk--I'm sorry that I worried you. I think it is very, very rare to develop a tumor after a mastectomy. In fact, my wonderful oncologist of 11 years said that I am his first patient to have this happen in his career. That rare. I do think that maybe if I had had a breast surgeon rather than a general surgeon (I didn't know their was such a specialty) it might have made a difference, but my first surgeon did many mastectomies in his career at that hospital. I do feel very safe with my current breast surgeon (at a different hospital) and will see her next week for my about 2 month check up. I will voice my concerns about the other breast with her.
I think that I am especially prone to BC (maybe my breast cells are really prone to mutation) because I am a DES daughter. I found a link here somewhere last week to a site that is reporting new findings that DES daughters are at increased risk for BC. I asked about this is 2000 and was told no...even though my mother had died from BC (she took DES when she was pregnant for all the best reasons--she had miscarried 4 times before me and DES was thought to help prevent miscarriages). So I had exposed in utero. I was a preemie--in 1954 3 lbs 14oz was at the border of survival. I have loved my life in spite of struggles at times. I am going to do more research on DES. I am waiting for the more advanced BRAC test findings than they had in 2000. If they are neg, I can pay to have my blood banked I think for 10 or 20 years (I forget) as new tests are expected to come out.
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JFJ--have you asked about PT? It sounds like it would help. Best --I am glad you are through reconstruction! I would just let him vacuum--he's probably very good at it! LOL!
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