Where are the tri-negs!

Hi all... although I do not post often.. I lurk everyday (stalk is probably a better word)... I'm going for my first 3 month check up next week and I'm really nervous.  Please say a prayer for me.  I got an e-mail this morning from Triple Neg foundation informing me of a free telephone workshop they are having on June 4th.  Several docs will be discussing different treatment options, clinical trials,follow-up care, etc.    Anyone else heard of this?  Anyway, I'm glad to see this site getting some activity.  Best wishes to all. 

Good morning girls,

I go for blood work on tuesday and onc appointment then 2nd ac treatment on wed. My mind gets to workin over time couple a of days before and shall use ativan the morning of to relax a bit. I have been feeling pretty good but am always really tired about 7:30 pm. I have been doing my running and eliptical but don't seem to accomplish what I used to. I am grateful that I had a relativelly easy time my first round and hope that for my second as well as anyone else who has to have another go.

happy trails mmc thinking of you. Happy trails everyone

laurel 

Hi Everyone,

I am 2.5 years out and feeling great, great, great!!  My 3 year anniversary is June 13th.  How is that for positive thoughts?   You girls who are just getting out of chemo, just hold on, it will get so much better!  My hair has grown out, all my achiness has gone away and I don't really feel tired anymore.  I used to come to this site all the time, but now just occasionally.  I guess bc is getting more and more out of my mind. 

Shannon

p.s.  MMC - I live in Austin, now but I am originally from Lufkin!

Hi !!

Another triple neg here.  Don't post much but check in daily.  I finished chemo on Oct. 1st and am feeling great.  Hair is back, tho still real short.  And gray, what's with that??  I wouldn't care if it were purple !!  I've seen my onc real regular since Oct. and he has just bumped me up to every 2 months.  My CEA marker has been giving me fits since Nov.  Had a colonoscopy, all was well, and had a PET the first of this month just to make sure all was ok. And it was. Doc said a number of things can cause a higher CEA and we'll keep an eye on it.  The hardest part has been trying to keep my head on straight.  My Doc said it's like having post tramatic stress.  And I believe he's right.  But each day is a little better and I don't think about it 24/7 like I used to.  Only when it gets close to another blood test or dr. visit!!  I'm trying to live my life every day and pray, pray, pray. God, my family, friends and medical team have held me up.  Hang in there everybody.

Hugs and blessings to all,

Marilyn

Hi fellow trip negs

I am 20 months past dx and still dancing with NED!!! Was stage 3A at DX.

Fatique has finally lifted. Am back to work full time. Still having neuropathy pain in my feet but it is improving on Neurontin. Am even planning on doing the Komen 3 day in Tampa in Oct.

Still dealing with fear but that too is getting better.

To all those still in treatment hang in the it does get better.

Sue

Hello All- Another STALKER here. Just wanted to give you all some encouragement and to tell you I just celebrated 5 yrs cancer free this month! I was Stage 3 when diagnosed and I feel so blessed that I have been able to raise my five yr old into the perfect angel he is!!!!! I am with all of you in spirit and I will say a prayer for all of you tonight! Dunner

Hi all, Took a much needed vacation to FL for some sunshine and rollercoaster riding.  It's amazing how much better I felt. My cough also went away (my 9yr old son had told me FL would do me good).  Had my 2nd Taxol treatment today which had to be stopped due to a severe reaction.  Onc thinks it may be that I had taken dexameth the night before when we did the 1st treatment w/no side effects.  So i will be taking them again before the next treatment next week.  I am on the down slope as my Doc says....10 more taxols to go along w/the trial drug (avastin).  Then a month off and radiation.  I am feeling better (then when on the A/C every 2wks). I am feeling some tiredness but as you can see I am not sleeping the norm either after taking lorazapm this evening.  I am happy to get up in the morning and go to work because its another day.  I am glad to see more postings esp w/Florida lady keeping the flow going! Thanks!  It really helps me to stay focus on what's important. Keep the faith! 

Well, I'm still here and (unfortunately) still fighting the lung mets (since Jun 06).

Latest news: I just flunked the PARP Inhibitor trial in December, and have since switched oncologist (who hopefully pays better attention to triple negatives).  I underwent restaging for the cancer in January (re-biopsy with chemo-sensitivity assay testing, re-scan, ran CTC).

Now I am on Navelbine+Xeloda.  Just finished the first cycle and now on the "free drug week", but got the flu.  Rats!  This is a rip off.  I thought I was going to enjoy the sunshine and be out and about.

Hi Everyone,

Just finished my last A/C and will begin taxol weekly x12 on mar 10th.  I also am doing a clinical trial with Avastin.

I asked my doctor...shouldn't have but I did....what my percentage was that I would have a reoccurrence...50%.  I knew it would be kind of high because of the pos nodes but I didn't think it would be that high but he told me not to dwell on it because its just a number and I'm not.  true. 

Teresa

Steph-b  I did feel numbness weeks after my bi lat mast. Im now in my 4th week after surgery and still a little numb! My surgical oncologist said thats normal and should feel back to normal at the 6 wks mark! I felt side effects from Taxol for about 3 weeks after I was finished and than all of a sudden it stop! Im sending you healing powers I hope you feel better soon please hang in~

Hi. I am new to this site. I am 36 and was diagnosed in December, had mastectomy in early Feb, and starting chemo next week. I am triple negative, no family history, awaiting genetic test results as well. Recently divorced too, with an amazing precious three year old girl. I think God tosses alot my way in one spurt so that whe I beat it it will be all the better!!!!

Hi, I still have neuropathy in my hands and feet, finished chemo on Dec. 5, 2007.  Second time around, had b.c. 18 years ago, too, then found out last March that I'm BRCA-1, triple negative, two months later, MRI found breast cancer.  NOT a recurrence.  Stage 1, grade 3; had dbl mastectomy on June 28, didn't know I'd need chemo until path report came back.  3 FEC/3 Taxol, ended up 6 days in hospital w/neutropenia during Taxol treatment.  The neuropathy is very debilitating and I'm going to try to get neurontin and see if it helps.  My oncologist said neuropathy can last 6-12 months after chemo ends and if it doesn't go away then, it'll probably NEVER go away.  Had ovaries out two weeks ago due to BRCA-1 diagnosis.  My daughter, age 33, also found out she's BRCA-1 and will likely have prophylactic dbl mastectomy/ovary removal after she has children.

Hi sisters,

I am a tri-neg lurker, too. I post regularly on the Chemotherapy-Jan. 2008 thread and read the Triple Negative postings often-- you're right, FLlady, don't wanna miss anything!

Learning that I was TN was not a high point, although my onco seems to be up on the latest research. I think we spent an hour going over all the different chemo regimens and discussing the pros/cons and my risk of recurrence w/ each. I had done a lot of reading and had a long list of questions to ask... he answered every question b4 I asked. I ended up choosing the old AC, T. I have 3 ACs under my belt and have #4 tomorrow if my blood counts are good (see my onco this afternoon). Start my 4 rounds of Taxol in March, then rads.

My chemo is manageable so far. Day 3 after AC is a total loss, Day 4 is better, but hard to get myself moving, and I'm back to work by Day 5 latest. The nausea meds are great--very little problem there. Thanks to my readings on the Chemo threads I was ready for all the other SE. I hear Taxol is a bit easier than AC, so looking forward to that!

One of the things that scares me about my treatment is that I had my tumor yanked out so soon after biopsy that we didn't have the final pathology (my choice--I was off for Christmas break and wanted it all done). I've noticed that many TNs do chemo b4 surgery so they know that the chemo is working... I don't have that option and the peace of mind it would bring to know that I've chosen the right chemo cocktail.

But, I'm normally a positive person so I don't dwell on that too often. My dh had a type of brain cancer that is usually fatal (50% die within 1 year, 80% within 2 years). He is 21 months out now with NED. Next MRI for him is March. Our experience with his cancer has definitely helped me deal with mine.

It is great encouragement to hear from the many TN survivors on this site. I am sooooo thankful that those of you who are years out from BC are popping in here to encourage us.

Paula

I am Patty, I am 54 years young. I was diagnosed on Dec. 15,2003. Stage IIA, Invasive Ductal Carcinoma(atypical medullary) 2.8 cm,,er, pr,her2 all negative,grade 3, no nodes involved out of 23, no vascular invasion. Four days later had a lumpectomy, with clear margins. Then in Jan. 04,started chemo 4XAC every three weeks, and then 4 X Taxol every three weeks, and then did 33 radiation treatments. So far all good reports. In December 2007 had a routine followup appt with my onc. I requested a breast mri, I have dense breasts, and a chest ct scan, both were normal. All bloodwork, mammo, tumor markers were normal. I am over four years out from triple negative, there is hope. I don't post much but read daily. They are doing alot of research on triple negative breast cancer.

Hugs

Patty