Calling all TNs
Comments
-
Kittycat, where can i find that song?
0 -
Kittycat - Congrats on the speaking engagement. Go out and spread the word. I am proud of you.
0 -
I'm loving hearing about the songs that mean special things to everyone. I have many too, but one of the newest for me is "Dog Days Are Over" by Florence & the Machine.
Here's a link to the video on YouTube (hope this works, I can't seem to figure out how to do this):
http://www.youtube.com/watch?v=iWOyfLBYtuUI'm not a big fan of this band, but this song speaks to me, I think because it was on the radio while I was driving during one of the first "normal" days after my dx. By that I mean I was trying to go about my day with this new knowledge, which we all know can be hard sometimes.
The opening line "happiness hit her like a train on a track..." got my attention. The whole thing makes me think of living with the fear that comes after a bc dx - and how we have to "run fast" to survive. I also like the avant garde look of Flo and her crew in the video.
Maybe I should get a wig like hers for during my chemo!
0 -
Ok everyone, I just got back from BS surgeons office. She had the results of the fluid she took out of the "seroma" on the mx scar. The fluid contained malignant cells........... crips, I don't even know what that means, only that it isn't good news. I have to go for an ultrasound guided biopsy next week. What are they going to biopsy?? It was fluid, will they just take more fluid??? Too many questions.... the bs didn't know the answer to what they were going to biopsy.... that can't be good either. Nodes??? I thought maybe someone in here would know what is happening here, that maybe you have had the same thing.
0 -
Kelben: sending a hug your way.
Did u get clean margins at first? Did u do chemo and if so what type? Also I see you are grade 2, which isn't suppose to be that aggressive, and you are only a year out.
Have you been sick lately, like had a cold??
0 -
Yes fighter I did have clear margins. I had 4 treatments with TC 21 days apart. I haven't been sick. Nothing. Do you have any ideas???
0 -
Kelben: Big hugs your way and I am hoping that this is just remains of your surgery, though I have never heard of such a thing. Please keep us posted as to what happens now.
Michelle: They are a fun band and I bet you would look hot with red hair!
0 -
Pls follow up and make sure you get a definite answer.
Up your Vit-C if your not on chemo. Just a suggestion.
0 -
kelben-- scary stuff indeed. I know BC can recur on scar tissue regardless of whether it was a lumpectomy or mastectomy. BUT, you don't have a lump, so--- very confusing. Wish you could have gotten some better answers from your BS. Perhaps they are going to biopsy the scar tissue? Damn, this is going to be a long week; a local recurrence, perhaps? I know you don't want to hear/read this, but I also know your mind is already there anyway. Local can be treated... it would suck major league, but it's treatable. Keeping my fingers crossed it's just a scary finding of no real significance.0
-
A local recurrence is what I'm thinking, but they didn't see a lesion on the ultrasound, just found cancer cells in the fluid... this is very weird to me. Nothing looks out of place, but I do feel swollen under my arm. My BS felt my underarm and said nothing. I thought that the swelling was lymphedema... maybe it's lymphoma... crap. Here we go again.... wait, wait, and more waiting.
0 -
kelben - so sorry about your news. I am hoping for the best. We will all be thinking of you.
0 -
I was dxd in 2007 with TNB, stage III, 1 cm, with 8/14 nodes positive. Lumpectomy, A/C x 4, Taxotere x 12, and 35 rads. Did fine for three years; cancer is back as of Nov, 2010, lymph nodes, and mets to bone (spine, L4, T3-T4) and shoulder. I've had 10 rads to my spine since Jan.
I am not surprised; this is an agressive cancer and I was not doing everything I could have to keep it at bay.. I gained 35 pounds; I stopped excercising, I kept drinking alcohol (1 a day), and eating regular, high carb, sugar diet. I know now that this matters!!
But my quandry is now that I have this recurrence, I'm not sure whether to stay with my local oncologist, or head off to a major university cancer center where I can get into some clinical trials? I am currently on Xeloda (oral chemo) but I can't take any IV chemo (Navelbine) because my port site extravasated in the hospital, and I have a huge chemical burn on my chest now and no way to access the port until it heals. They can't put a picc line in either, because in addition to the lymph node resection on my left arm, I developed a DVT (blood clot) in my left arm also, so all that is left is my right arm, and it already has the mediport cath in it and they are afraid to put a picc line in on top of it because of my DVT history.
I'm going to hang with the Xeloda for two more cycles and ask for a scan. If there is no improvement, I'm headed to MD Anderson......
I'm not scared, I'm just really tired of all the complications; if I can shake these stupid complications and get back on track fighting this stuff, I'll be ok.
0 -
I am so sorry to hear about both of you Texaskaren and kelban I will be praying for you both. Please keep letting us know what is going on.
Hugs
beetle
0 -
kelben... A woman that works in my cancer center is also on chemo. My last treatment I questioned her about her cancer. She said she also was TN last year. Recently she had shortness of breath the onco did MRI she had fluid around her lung. They also drained it and it was also cancers cells. She is back on chemo doesn't seemed to be concerned at all. Similar not exact scenario. We all know this shakes your to your core. Just breathe and we are all out here praying and ready to listen..... HUGS......Diane0
-
Kelben:
Not even sure if this applies - but it's worth reading:
http://onlinelibrary.wiley.com/doi/10.1002/dc.10054/abstract
0 -
Kelben: Did you undergo a lumpectomy or mastectomy? What is a seroma? Does it result from all surgeries?
0 -
I was initially diagnosed in Sept 2007, stage 2b, grade 3, two nodes ER+/PR+, HER2+. Had lumpectomy, DD chemo A/C six doses then 12 taxol, radiation, 2 years tamoxifen and 1 year femera.
Oct 2011, had tenderness is my liver and shortness of breath. Which leads to now I am:
Stage IV, ER-/PR-, HER2-, mets to liver and lungs. I have been on abraxane and avastin. It has helped so far.
From Hawaii, went to MD Anderson for second opinion they said Honolulu Doctor is doing what they would recommend. So I can stay home for further treatments.
0 -
LRM- that was an interesting read. Wonder why it did not provide any type of conclusion though? OK--- false positive.... what then? Seems to be saying it's OK to have these cells?0
-
So waves..you went from Triple Postive to Triple Negative? How weird is that?
I wonder about this sometimes..not sure if this has been addressed much..but ok..here we go..alot of us TN's are premenopausal...we are diagnosed with TN..ok...the treatments put us through menopause..so now we don't have alot of estrogen left..right??? So..if we have a reocurrence or mets..and it comes back er or pr positive..how does that happen??? I guess it would be good thing because there are more treatments available but what the heck? And a first time a person is triple positive then comes back triple negative..how does that happen?
Ok..why is the sky blue and the grass green..?
Kelben..hang in there! Do you think they will just radiate the area??? Hopefully that is it...when I had some calcs. in my "good" breast a little over a year ago I was told the treatment would be rads only....hopefully that is all you will need to kill those suckers.
Good for you Kitty...glad you get to speak out...you will do a great job representing all of us!
0 -
Heidi:
Danged if I know - but the fact that it said that cancer cells found in a seroma oftentimes cause a false positive for active cancer is what interested me and thought might be of interest to Kelben. I could find very little about anything that really addressed cancer cells found in seroma fluid. I kind of got from the article the same conclusion you did - that perhaps it's not as alarming as one would originally surmise it to be? Who the heck knows, everytime I read something of interest or importance, it seems the more I read it or try to understand what it's actually saying, the less I comprehend! Just hoping that Kelben doesn't have to go through anymore crap than she already has. This disease sucks - big time.
0 -
Titan- I think the answer to your question above has to do with the fact that our bodies produce estrogen & progesterone in different ways (or something like that). I had it explained to me once and whatever the explanation it made sense. Just can't remember the details.
I feel stoopid...
0 -
TexasKaren: So sorry to hear about your recurrence and thank you for emphasizing the importance of diet, nutrition and excercise for us triple negs. I would go to the best dr's you are able to and expecially someone who speciallizes in BC mets. At least get 3 opinions--I saw my friend tonite who has mets and is stage 4 and she got 3 opinions and 2 out of 3 said the same thing so she is being treated by a dr. close to home who happens to be a specialist in this.
Titan: My friend who is stage 4 mets was not initially TN and now she is. Who knows, it just all sucks!
0 -
kittycat: Congratulations! I am sure you will do great!
0 -
beccad - my hubby found the song on I-Tunes. Look it up under Zac Brown Band. I'm not into country music, but I really like this band.
kelben - UGHHH!!!! I am seriously going to say prayers for you! This brings back bad memories from last year when I got my 2nd dx. Waiting is the worst part. Hopefully it is just something they can zap with rads! (((hugs)))
My onco told me that even though I an TN, I could get a new primary that is ER or PR positive. My sister and I have the same BRCA1 gene mutation and she is ER+. I was told to avoid soy and I will get my ovaries out.
I am going to be more focused on myself this year. I need to heal, physically and emotionally, from all of this. I've been taking my supplements and I got some of those walking shoes that are supposed to help you "work out" - can't remember what they're called - chemo brain is still there.
Hang in there sisters!!!!!!!
0 -
thanks for all your good wishes guys. I was told I only needed chemo because I had mastectomy, no rads. It's weird that before I found out about all this new stuff, I felt pretty good. A few aches and pains, alittle SOB , but I just thought "don't be a baby you aren't getting any younger and suck it up" Now, I feel EVERYTHING and starting to put on that "get tough" face again, which had all but disappeared.
0 -
Kelben: I'm so sorry to hear you're dealing with this. I hope you get answers to this confusing situation and that treatment is pretty easy and very effective. I hate this evil beast.
MBJ: I was thinking of having fun with the wig thing. Maybe I could go red on Mondays and brown on another, I've been a blonde all my life, so why not?! lol
I'm riding a new wave of fear this morning, since my onc. called yesterday to say that my baseline bone scan showed something "incidental" - in my head. Whatever it is, its sort of behind my nose. I had sinus surgery (tubinectomy, etc.) in 2001 so I'm hoping this "incidental finding" is just that I had tissue/bone removed from that area. I have no weird symptoms, so could it be mets to skull or brain? The crazy thing is that the stress since the phone call has caused mild headache and nausea - I got my kids off to school this morning and am now immobilized by sadness and fear.
Onc.'s office is calling today to schedule an MRI to get a better look at this area. She told me "not to worry" because it "doesn't seem related to the breast cancer" -- apparently I am unable to not worry. All this kind of puts my breast tumor in perspective, that's for sure.
Thanks for listening/reading, I just have to vent some of this worry.
0 -
I am sorry you are facing this again. Geeeez I hate waiting when they find something, they should be able to fix it today... just me,
0 -
Kelben: When did treatment end for you?
MBJ: Yes, the importance of diet is stressed everywhere I read about us. Oh well, I have to cut back on my occasional snack.
TexasKaren: We are hear for you!! Work hard at becoming NED again. Join us on the take 10 pounds off challenge, and roam around the natural boards.
0 -
fighter: I finished on Sept 15/10
0 -
Kelben: Just know that there are still many treatment options for you if needed. Hang in there and try to take a few very deep breaths every time your mind goes to a dark place. Sending you much light and love your way! Big, big hugs!
Michelle: If they said it isn't relatied to your BC it probably is related to you having surgery there--they are just being extra thorough! Same as above--deep breaths! I am about to loan my 3 wigs out and I say, yes, a blond one day, brunette the next--why not? Hugs.
0
