Calling all TNs

FloreneB

I'm learning so much!  Had never heard the term LVI - (or had not paid attention to it) I looked at my path report and it does say LVI - Present - so I'll ask my MO about this next visit.

My first chemo was last Wednesday and I have had very few symptoms (no nausea, but some fatigue) - is this normal?  Just want to be sure they're giving me the full dose - certainly don't want the SE, tho.  Do the SE get worse as tx progress?  I am wanting to keep my little great grandson and have been told that I probably won't be able to do that.  Does anyone have an opinion on that?  I know everyone is different, but he is so good for me - makes me laugh!!!

Anonymous

MBJ- yes, the vertigo lasted about 36 hours and then gradually switched over to a generalized dizziness for another few days. Crappy stuff, but better this week. Still have to be careful bending over & righting myself though, so I took my little photographers stool out with me to sit on while I weeded.

Our pool area is big and spring clean-up is quite a chore. If we don't get going with it hundreds of frogs will have to pack their bags when the cover comes off. Trying to stay ahead of "the crowd".

MBJ

Heidi:  Hundred of frogs?  Oh my!  I am glad you are doing better-your home sounds like paradise.

Fighter_34

I weeded and planted flowers Saturday. So relaxing!!! I love gardening because the plants don't talk back and they are wonderful to watch and grow.

Truly sounds like a tropical paradise Heidi....

TifJ

Florene- just because you have very few SEs does not mean it is not working! Be thankful you are having a relatively easy time. I had 4 tx total and numbers 1 and 4 were the worst for me. We all react differently to the same drugs sometimes!! As far as your great-grandson, please be careful. Your immune system is very comprised right now and any little bug or virus that he may have will put you at risk! Ask you doctor, what he/she suggests. Hope this was helpful!

Anonymous

MBJ- I'd say at least a hundred were on the cover last year: bullfrogs, pickerels, leopards and green frogs. Also have peepers and tree frogs. The cats like to go "frogging" in the little ornamental pond we have located in a corner of the yard once we open the pool and they no longer have the option of hanging around on the cover. I have a sign by the pond that reads: "Frog Parking Only... all others will be Toad"

slcst12

Hi ladies!

MBJ: I have joined the hair hair hair thread...that one moves pretty fast! Hard to keep up!
Titan: Thanks it's good to be done with chemo. I hated every minute of it.

Some questions for you ladies:
1) Biotin--I bought some at target, it's 1000 mcg, did you all just take one of those per day?
2) Rads--I have to get my port out before they will let me start (my port is on my bc side and the RO is a little torqued off that it's "in her field" of radiation...)  have you all heard of this?

3) Oncotype--I thought TN could not get this test done? That it would not be meaningful? I will ask for it if it's something useful
4) PET scan--I never had one...wasn't offered one. Should I ask about this?

5) Being declared, "NED" --who makes this declaration?  The MO? What are they basing that on?  Just the fact that you finished chemo and surgery and they assume you are all good? i'm asking b/c i kinda feel like the MO just "cut me loose" after my last chemo...and I won't see her again until July...

Thanks!!

Titan

Oh Florene..your chemo is working..don't freak out if you aren't having alot of SE'S...alot of us don't..some of us do...you just never know..My only SE"s were from the Neulasta shot and it just lasted one day..besides that I was pretty much good to go...

I don't understand why you can't keep your grandson...There are women on here who have little children and still take care of them during chemo.  If anything he will help you get through it.

I have a new little grandniece..she is 9 days old..I absolutely love her and her big sister (age 3)...it is amazing the love you feel for those little ones isn't it?  It is such a wonderful feeling with all the crap we have all gone through or still going through.

Hey ladies..it is early..but I need your help..I have a mammo on Monday...I need your good vibes..please, please...I hate this anxiety.

Babs37

Titan- Sending you good vibes. Lots and Lots of them!!!!

Today my friend who has BC (calcifications) had her path report from her second surgery and it was good. They took out 4 nodes and all were negative and no LVI. She will begin Tamox. tomorrow. She still has 4 little dots of cancer in her breast and because her case is rare, her doctor will meet with the board of doctors to see if she should do chemo and/or rads. She is soooo relieved that it didn't spread to her nodes. I went to see her friday and she was so sad and scared. She was fearing that she had cancer elsewhere. I couldn't tell her not to go there because I know we all go there in our heads when we learn of our cancer (and still do sometimes.......). I could just listen to her and confort her the best I could. We got talking about lots of things and it finally put a smile on her face. When I left she was ok and I was glad. And today, she is happy again. She is ready to face the music if she needs chemo. That made my day!!! I was sending her good vibes today all day long so Titan, I will be sending you the same good vibes on monday.

Suze- Glad to hear that rads are doing their job!!! Go! Go! Go! Kick that cancer's butt!

I didn't start my rads yet.... I have my simulation thursday and I start my rads friday morning. 5 weeks of that and then............ Florida, here I come!!!!!!!!!!!!!!!

Have a good night everyone.

Sugar77

Lots of good viiiiiiiibes are on their way to Ohio for Titan as I type this!!!!! All will be good.

Babs your story of making your friend happy today put a smile on my face, too. 

I don't think mine had LVI. I specifically asked my onc at the tail end of one of my first appointments.  He had already closed his file but he said he didn't recall there being anything additional that I didn't already know about.  That was good enough for me.

Good evening ladies! 

Anonymous

Titan- my rad onc, whom I saw in March, was saying how local recurrance with TN is only @ 5%. That means you have a 95% chance of a BRAD 2 mammo (B9/clear).

I'd take those odds and run with them!

Huskerkkc

Titan, Remember the song..."Good, good, good....good vibrations" Keep that song in your head...Nah, nah, nah, nah, nah...nah, nah, nah...

Anonymous

Phophetic, don't you agree?

Youwearpink

Hello All,

I have not been on this site in sooo long. I am not sure if that is a good or bad thing???lol  I can't remember all of my drugs and specifics anymore. I used to have it all memorized like it was part of my identity (I totally blame my memory issues on Chemo). I was dx when I was 26 years old, 10 days after my daughter was born. I am a TRi-Neg and BRCA 1 & 2 positive. GUESS WHAT LADIES.... I WILL BE 9 YEARS CANCER FREE IN JUNE!!!  Wow, It has been a long road, but I am still hear to talk about it!! I just finished all my reconstruction last year...Oh, had Tram flap reconstruction with initial diagnosis..  then had a complete hysterectomy at 30 then prophilactic Mast. on the other breast with TUG reconstruction with Dr. Joshua Levine in NYC.  I had 6 treatments. Could not have the real strong stuff because it is my second time around with cancer. I had a previous unrelated cancer my Senior year in high school. They did not want to Max my lifetime toxicity or something like that (truly having memory issues).  But, I can't remember my exact treatment reg. but I loved to see/hear someone being as far out as I am now. I had a lot of obstacles and hurdles but I am so grateful to be here to share my story and help others.

Lynn18

Youwearpink:  Thank you for posting it's so encouraging to hear from someone 9 years out.  And you were only 26 when dx?  So young!  How nice to be all finished with reconstruction!

Sounds like many of us had LVI, that makes me feel a little better, sounds like it's pretty common.  My vitamin D level was 20, I will be retested this week, hope it has gone up!

slcst12:  Good questions, is biotin for your hair?  I have never heard my doctors mention "NED" but I hear a lot of people talk about it, I hope I am! 

cmksocal

Dancing with NED, so far.  Had my first, 6-month post surgery mamo today, it was clear.  Along with my good blood work tests every 3 months, (my onc doesn't do PET scans as a diagnostic tool, he'll do one if the blood work shows something is out of range), the news has been good so far. 

But boy does 5 years out seem like a hella of a long time.....

Colleen

riley702

slcst12 - I take 1,000 mg of Biotin daily. I started taking it while bald, but have kept up with it because I think it helps my nails, too.

My port was on the non-BC side. From what I've read here, that seems to be fairly common, but others have had it on the BC side or even under their arm.

As for getting an Oncotype, I was told it's not routinely done on TNs as most of us will be advised to get chemo. We have more limits on treatment (no anti-hormonals) and most TNs seem to have aggressive, fast-growing tumors, so chemo and lumpectomy/mastectomy seem to be the norm now.

I had a bone scan, but no PET scan. I'm not sure, but I think I read here somewhere that some docs think PET scans have too many false positives, so don't routinely order them.

NED - not sure what the criteria is for this; maybe clean mammo, clean MRI, etc.?

MBJ

youwearpink:  Thank you soooo much for coming here and telling us you are 9 years cancer free!!!  Being diagnoses so young and yet you are still here--well that is just a wonderful story that we all like to hear!  Big hugs to you!!!

Titan:  My thoughts are you will be fine!!! Sending many good vibrations your way.

Heidi:  ...will be toad, LOL!!!

slcst12:  I take 5000 mcg 3 x a day or 5 mg (same thing).

kelben

youwearpink, thank you so much for posting, we all needed to hear that.  Nine years yippppeeeee.

I was out on Saturday and got very sunburned.... how stupid was that??   I just didn't think... my nose blistered!!!!    It won't happen again, but still I feelsooooo dumb.  We live on a lake, but have big umbrellas along the dock for shade, that will be where you'll find me for the better part of this summer, I can't wait.

TifJ

Titan- not just good, but the best vibrations coming your way!! I had a mammo on my good breast 3 months PFC and was scared silly, but all was good!

I was hoping to have a PET scan somewhere along the way, but my insurance denied it. They would only approve it if I was having neo-adjuvant chemo which I didn't.

Youwearpink- Thank you! We all need a little encouragement now and then!

Fighter_34

Sending special vibes your way DIVA!!!!! All will be well.

JenC

Titan - good vibes comming your way from the Northeast. 

Fighter_34

Youwearpink: THANK YOU!

Luah

youwearpink: So glad you came back to post - thank you!

Titan: Does instinct count? I just feel like all will be fine for you! 

FWIW, I had my 18-mo mammo. about a week ago. Yesterday I called to check on results. Happy to say, all is good -- and even the suspected microcalcifications that led to a 6-month follow-up mammo have "resolved." Just normal post-treatment changes. I wasn't too stressed as an MRI in January was okay, and to be honest, I worry a lot more about distant recurrence. Still, it's nice to get an all-clear. Second anniversary can't come soon enough! 

cc4npg

Re LVI.. my path report said "negative", so none was found.  No node involvement either.  I truly believe my small 3 mm IDC had just started because the only thing found after mx was done was all DCIS and it was small too.

Florene:  Many of us had very mild SE's after the first treatment.  Some of the SE's do build up... some people have greater SE's as they go... some don't.  There is a thread called "Anyone on Just Taxotere and Cytoxin" that you should read, if that's what you're getting.  Let's hope your SE's stay mild...

Titan:  Praying for a clean scan!

Youwearpink:  SO happy to hear from you!  Especially being BRCA+!!  Thank you for posting... it helps us in so many ways!

RE Biotin... I take 15,000 mcg a day, or 15 mg.  Been doing this for a few years now and yes, for me I've noticed a difference.  Omega 3 is also extremely beneficial from what I've been told.  Been taking it ever since I was told to do so before Lasik surgery.

Suze35

Drive by posting!

Titan - all of my positive thoughts headed your way!  I think you'll be fine !!

Re: Oncotype - it typically isn't done for TN for reasons Riley stated, but for some reason, my MO wanted it.  My cancer stopped responding to the chemo I was on, and she thinks this may give her more info.  I have no clue why, lol, so was just seeing if anyone else had one done.

timekpr

Sorry for the slow reply - saw my Onco today.

Couple people said no chemo, no rads was "-playing with fire."

Treatment protocols don't recommend radiation for stage 1 with mastectomy. With a lumpectomy its a completely different story.

Yes, we tried to run the Oncotype DX test....and they were unable to even run the test! It can't be run if you are ER- it seems so that's of no help. It did confirm the ER-, though, about as definitively as you can get.

 Today had a CA-15-3 drawn, along with  CA-125 for ovarian cancer and a test for circulating tumor cells. 

 So, its the chemo question...there's two things that would be a maybe, boith of which I'm not a particularly good canidate for (history of neuropathy, liver trauma, ect.)

 I'm OK with the idea of just kinda hanging out. Its a strange little gray area where the benefit of chemo is about equal to the risks. Should have my BRAC test back soon, and if that is positive the ovaries and my right breast will be removed.  I'm going to eat right, get my exercise, and try to catch my full 8 hours of sleep. 

Anonymous

 Good info here:

http://lbbc.org/Learning-From-Others/Ask-the-Expert/2011-04-Triple-Negative-Breast-Cancer?tr=y&auid=8267812

Unfortunately, the one thing I kept hearing during these two audiopods was *five* year window for recurrence rather than the 1-3 I typically read/hear. Don't like that at all.

Teka

Titan,

Mammogram and ultrasound OK.   Cyst.   I am sure you'll hear good news.

lrr4993

Question for those of you doing post treatment mammos.  My first is in three weeks.  My breast is still sore from radiation and has a large lump of scar tissue.  I am in fear of the pain from the mammo and I question that it is even worth while with the scar tissue.  Any thoughts on this?  I am doing an annual MRI as a back up, but that is not until later this year.