Calling all TNs

mags20487

thank you Heide...I finally laughed on a morning I have done nothing but cry.

Maggie

Fighter_34

(((((((((((((MAGGIE)))))))))))))

jazz3000

Well Obxk - I always say if your going to do something do it right, and it sounds like you did just that. Wishing you well in prayer and thought. Hopefully it works to get your dishes done and your floors vacuumed while you supervise. LOL

mccrimmon324

Hey Ladies, just a quick question for you.  I'm sure this belongs on the chemo thread but I'm pretty sure everyone here has been thru or going thru chemo.  I've got my last chemo next thursday, so I'm still in treatment.  On Monday I had a fever or 100.5 and called immediately, they put me on Cipro, other than the temperature I feel fine.  It hasn't gone up that high again (taking tylenol) but I called the nurse again today because it remains in the 99.??  range without the tylenol.  She said it's just my body fighting something off and just keep taking the Cipro, it will run its course in a couple of days.  Now, I was sick last week, tummy and diarhea issues, I assumed from treatment but I guess I could have caught something and my numbers were good last week, due again tomorrow to get checked.  Anyway, I guess I'm just freaking out a little bit, I'm not used to having fevers or temperatures.  Sorry I rambled, I tend to do that all the time.  Also, could this have anything to do with chemopause, my hot flashes and night sweats are horrible.  They seem to have gotten worse over the past couple weeks.

Thanks for any input.

jazz3000

Well I had my pre-surgery consult today and will have my right breast removed friday. I was under the impression I had one tumor in the breast and she said no there were three. She also told me the intent is to remove at least ten nodes from under my arm but not more than 20. Say what?  Guess the pathologist will determine to what extent the cancer has traveled and though the biopsy of the node that is swollen didn't show any cells they are pretty sure the cancer is there.  Okay...but why 10 nodes or more?, if only one is inflammed? I'm not to use my arm for 2 weeks, and then I go to physical therapy and to another specialist on lymphadema?  I will then have a 6 to 8 week reprive and begin 2 kinds of chemo. AC and something else. ( Still catching up and am unsure as to what the other one was.)  I asked if I was this triple negative and it had no hormone receptors if it was possible to use hormones? NO! Okay I'm confused?  This type of cancer is not caused by hormone therapy but it's a bad idea to use them anyway. as other types of cancer are. I think I get that. Add another cancer to the list and I am really in trouble.  Just waiting and cleaning house and preparing for the oncoming invasion to my body.The surgery and loss of the breast doesn't scare me but the thought of the chemo after is starting to sink in.  Okay mine is not curable but it is treatable. Hmmmm??? LOL well I have to say I admire all of you at the otherside of this as I 'm knowing you've been here and done this. God bless and keep you. Keep on keepin on.

mccrimmon324  - I'm sorry your going through all of this worry and concern. Your in my prayers and thoughts, and here's hoping it is just a bug that's setting you back this week. We do get sick on occasion. Did you ever think you'd be happy hearing, "You've got the flu." Feel better.

riley702

Jazz, have you already had a sentinel node biopsy that came back positive and that's why they're taking more nodes? Otherwise, I got nothin'.

As for the 'curable' vs 'treatable', I think that's the 'new' tendency in terminology. Some docs still use the word 'cure', others refuse to because BC doesn't conform to the 5-years-without-relapse-and-you're-considered-cured mantra so common with other cancers. You can be cruising along at 10-15 years out and suddenly find out you have mets. Triple-negative BC is more likely than hormone-receptor positive BC to pop back up as mets than as a local recurrence as well.

It scared the bejesus out of me when my BS told me that they didn't like to use the term 'cured' for BC any more, and that if this thing kills me, it will be mets that do it, not the tumor in my breast. He went on to explain that my odds of a recurrence or mets continue to go down the further out I get from diagnosis, but that there aren't any guarantees and he didn't want to give me false reassurance that I'd never have to worry about it once I got to the 5-year mark.

Also, if a TN tumor does recur, it usually happens in the first 3 years from diagnosis. And after 5 years, our chances for a recurrence drop below those with hormone-receptor positive tumors.

One more thing - TN tumors are overwhelmingly grade 3 aggressive, but that also means they are more susceptible to chemo as more aggressive tumors tend to absorb the chemo better than slower-growing tumors.

BernieEllen

Hi to everyone, haven't been well lately.  Feel like i've been hit by a bus, reaaly run down and so tired. Is this normal three weeks after last chemo?

Maria_Malta

Hi BernieEllen,

 Just read your post...Taxotere made me extremely tired and by the 4th cycle SEs dragged on for ages..and now after 4 weeks out, although I'm generally well, my legs still feel really heavy and I climb up the stairs or walk uphill as though I was at least 100 years old!  What chemo are you on?

Anonymous

BernieEllen- heck, I'm two years out from tx and didn't feel like I had sustainable energy until about 18 months post tx. Frustrating, but it will get better.

As for "cure"... my Sloan-Kettering BS used that word, but my (local) onc defers to a 10 year time-frame. He agrees with the 3 year recurrence consensus, but likes the 10 year to feel totally reassured.

Let's face it, every year you continue to live is a win-win... who needs time-frames?

Maria- that's exactly the way my legs felt too--- like they were made of lead.

jazz3000

Thanks Riley. I had 3 biopsies. The first showed cells, and I was sent to a surgeon within 15 minutes after the patholgist did the aspiration.  The surgeon put me on a table and did a series of 12 core samples. They told me to come back in the next day as the radiologist had to do another series of small needle aspirations and sure enough she did with the help of the ultra sound tech. She pulled me into her office and said we've found cancer and your to be here in 3 days to meet with our team and the surgeon who will help you from there. In that three days, I had a series of blood tests and a nurse who did a scan of my heart with a speciaal dye. The diagnois I put on my profile was the first biopsy they did and it's results?
I met with the surgeon, the oncologist, the radiologist, a social worker who specializes in BC and two nurses in their surgery department. (Everyone of these specialists are women), and they gave me a load of info and a surgery date.

Yesterday was the first one on one I had with the Doctor and she explained all of the info I shared on my previous post. I asked about being TN and she confirmed it, and said there are many unknowns with this type of BC but what they did know was it was invasive and they would hit it with everything they had and if it pops up somewhere else we would deal with that as well. She didn't leave me feeling hopeless, but more so aware this isn't going away any time soon and that the diease may not be cureable but my life would be extended because it's controllable within limits. How I chose to live that time was up to me, but they would be there.

I'm still trying to catch up with and  piece together the change in vocabulary this all brought on.  Terms I've never heard and how they fit this particular cancer would take a six month course in college. I went from metaplastic to Triple Negative in a few weeks and am hoping after the surgery tomorrow I'll have the time to process it all.

I think all the women in this team have connected with each other because they've all been touched by or had BC. As I was passed from one to another it was like they tagged each other and moved me through a medical system that usually requires days, weeks and months to get through. They were so well syncronized that I'm left going what just happened here. Haven't had a lot of time for self reflection or fear. I don't understand it all but I feel very sure their doing what they collectively feel is what will give me my best shot at future health. They were familiar with this site and happy I was here, 

I get the feeling Bette Davis said it best with her famous, "Fasten your safety belts, it's gonna be a bumpy ride." , line.

Still and yet the carpet cleaner is on his way so my carpets are clean and all is sterile on my return from the beginning of this "Great Adventure". Very very grateful for you all and your guidance and direction in all this. Women are a wonderful species. 

Maria_Malta

mccrimmon, just read your last post....after my 2nd and 3rd Taxotere I had diarrhoea for a few days, and also temperature of about 100 F for one or two nights after about one week after having taken chemo... didn't have an infection and am pretty sure it was a SE.

BernieEllen

Thanks for the support, Dr advises stop work and rest.

mccrimmon324

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? 

Luah

Jazz3000: Sounds like you're in excellent hands!

Teka

jazz3000,

Titan

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...

Teka

Laurajane,

Good luck tomorrow with chemo port placement.

Teka

inmate4232010,

I hope you're doing OK with new chemo treatments.

Teka

belleeast,

I hope the bactrim ds is mopping up the infection and you'll have chemo port placement next week.

belleeast

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!

Teka

belleeast,

NPO

jazz3000

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. 

Teka

jazz3000,

You'll be resting comfortably this time tomorrow night.

lwarstler

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? 

Maria_Malta

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!!!!

mccrimmon324

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.

Maria_Malta

mmcrimmon hello,

Good luck with xrays, finger crossed you're ok for chemo next Thursday...antibiotics will probably do the trick!

mitymuffin

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

mitymuffin

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.

MBJ

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!