Triple Negative Stage 3

NannaBaby

Let's share our treatment plans/goals...  I'd like to compare the standards of care in different areas...

I started with 4 AC then 4 Taxotere every 3 weeks

Left modified radical mastectomy with partial chest muscle removed.

25 Rads with the TomoTherapy machine.

Next is Navelbine and Ciplatin chemo. Because 4.5 cm residual cancer and chest wall involvement.

lissette80901

I started with 4 AC every three weeks.  Tumor did not respond.

Had a Mastectomy.

12 weekly Taxol.

Exchange surgery,

30 Rads

Suze35

This is a great idea.



I started with 4 DD AC and then 12 weekly Taxol/Carboplatin.



I had a BMX with left node removal.



Will follow up with Cisplatinum and another drug to be determined in two weeks due to residual cancer in my breast and nodes. I had two tumors, each over 4 cm. One of them was completely gone, the other was 3 cm after chemo. I had 4 nodes postively biopsied, and ended up with 5 still positive, but with obvious chemo effect. We think I had regrowth at the end of my chemo as my initial response was clinically very good.



I will do this for 4 months, then take a break for 30 rounds of rads, and then do 2 more months of chemo.



I had a clear PET scan before I started chemo, and will have another next week to make sure all is still clear. We are hitting this very hard and I am doing my best to be hopeful!

crabbiepattie

Thanks for this thread!

My initial diagnosis was stage IIB so I had a lumpectomy and axillary dissection of 11 nodes. Although my after-surgery stage assessment was IIIA, the margins were good so my surgeon didn't recommend more surgery. Clear PET scan, then 6 TC (taxotere and cytoxan) at 3 week intervals. Then 33 rads (28 whole breast and underarm, 5 boosts). No BRCA testing done. My med onco does tumor markers but no routine scans. My rad onco has prescribed an MRI in August.  I'm in my 50's.

Mom2Tots

This thread is a good idea.  I have been reading through other threads trying to review some of the treatment plans.  I am struggling with how much surgery to have.  I appear to be responding very well to the chemo.  There wasnt a palpable lump after the 2nd cycle of chemo.  I get the strong sense that my BS and onco recommend lumpectomy whereas I have been leaning toward a Bi-Mx.  They dont want me to decide anything definite until after I complete chemo.

Neoadjuvant chemo therapy: 4 cycles DD AC and 4 cycles DD Taxol, just completed cycle 6.

Otherwise my treatment plan includes surgery, radiation, and reconstruction.  No specifics yet.

Anonymous

3 x FEC, 3 x Taxotere

Mastectomy

35 rads.

Came back after 9 months.

bobsgirl

2 x TC, then 4 x TAC for 6 total treatments--neoadjuvant

My onc started with TC while waiting for more testing for HER2 (equivocal).  He then added the A after I had a port placed since I could not have Herceptin.

Lumpectomy 

Pathologic Complete Response!

33 rads (completed 10 so far; I'll be done on April 20)

lululani

4 X DD AC then 12 X Taxol

Mastectomy with 24 axillary lymph nodes removed

33 rads (last 5 were boosts) of chest, axillary, and supraclavicular regions

The doctors could not initially find my occult tumor even though they took images with a mammogram, ultrasound, MRI, and PETscan.  I discovered my bc myself in two large axillary nodes, together the size of a circus peanut.   

After surgery, my small tumor was found, 4 mm., with cancer in 8 axillary nodes. 5 nodes were grossly positive (could be seen).  

I often wish I had had neoadjuvant chemo so I could know how my type of TN responded, and if necessary, received more chemo.  I also think I should have received platinum-based chemo with my Taxol.  (I later received a 2nd opinion from an onc. at USF who concurred with my onc. about not doing platinum-based chemo.) 

bobsgirl, congratulations on your pcr.  NannaBaby, thank you for starting this thread.    

NannaBaby

SUZE35 - sounds like we r similar! I had some regrowth after chemo, prior to surgery   It wasn't palpable around the time my chemo ended. But one week before surgery, it felt like a golf ball    I am starting Cisplatin and Vinorelbine tomoro.  Vinorelbine days 1 & 8 and Cisplatin only on day 1, 3 weeks cycles.  Please keep updated re: what drug will accompany ur cisplatin.  We can share SE tips!  I am praying that I don't get oral thrush this time! And hopefully only hair thinning....

Take care ladies! Thanks for complimenting my thread idea   Triple Negative is a beast we can kill!

mamaof3bugs

4 DD AC

12 weekly Taxol

36 rounds of rads (final 6 were boosts)

Unfortunately I did not have neoadjuvant, I would like to know that my treatment actually worked.  I found my golf ball sized tumor myself.  I had a lumpectomy with 12 nodes removed, I had just turned 37 two weeks before diagnosis.  Angi

GuyGirl

I had a lumpectomy and a sentinel node biopsy, only 1 taken and it was clean.

I had 4 Dose Dense Adriamycin and Cytoxen and then 4 Taxol followed by 33

radiation treatments, 8 which were boosts.

chinablue

I had a uni-mx and 24 lymph nodes removed along with diep reconstruction Aug 2009.  Next, I had 4 DD AC, 12 weekly Taxol, and 32 radiation treatments. After all that I had a tissue expander placed under my diep breast and a lift to my natural to balance the girls out. I should be done with reconstruction by July 2011.  Oh, I was also on a Zometa clinical trial and just decided to stop.

Here is a question for all of you beautiful TN Stage 3 gals, what is your follow up schedule (i.e. mammo, onc, bs, gyn, etc.)?

dlcw

This thread is a great idea.  I am coming up on the last round of the Gemzar/Cisplatin/PARP inhibitor trial and am starting to think about follow-on adjuvant chemo.  My tumor has shrunk down to just barely 1cm on clinical exam, started at 4.5.  One enlarged node that biopsied positive has returned to normal.  I am not daring to hope for a complete response to this trail so am gathering info on what others are doing that don't get a complete response neoadjuvantly.  I will have mx, and nodes removed in May and hope to start adjuvant in June.  Am leaning to DD A/C plus 12 weekly Taxol but may do some research on Taxotare/Cytoxan b/c my oncologist at Stanford likes that combo better than ACT - did anyone do Taxotare Cytoxan?

Radiation will follow my adjuvant chemo, then 4 months or so to recover from radiation, then reconstruction.....still a year out from being done but am hopeful that with neoadjuvant plus adjuvant our odds have to be better than what's out there for prior patients that maybe didn't get both neo and adjuvant.

I don't have a follow monitoring schedule that's been discussed yet but the breast surgeon mentioned I would MRI's at regular intervals to image the chest wall where they won't be able to remove every bit of breast tissue.

YES bobsgirl- congrats on the complete response!!

dlcw

Suze35

Nannababy - it does sound like we've had similar situations. I had been really hoping for clear nodes, but it wasn't in the cards.



dlcw - your action plan sounds very aggressive, and I agree that having both neo- and adjuvant will improve our odds. The way I view it, many TN women have surgery first, then have to go on blind faith that their chemo works. We are now armed with more information, knowing the first round of chemo wasn't as successful as we'd like, so we are taking a second shot at it.



I also wanted to add that I have completely shifted my diet to an anti-inflammatory, low-glycemic one, and am going to really try and stick with it during this round of chemo. Last time, I ate whatever I wanted, stopped taking my Vitamin D, and didn't even try to exercise. I know diet/exercise alone won't cure me, and I'm not going as extreme as Dr. Block recommends, but I think it can help. For 2 years prior to my dx, I was off and on Atkins, very high fat and not enough veggies. I believe it, along with stress, provided the environment for my tumor to grow. I hope to change that for down the road.

NannaBaby

Hi Ladies!

I had my first Navelbine/Cisplatin infusion on Wednesday.  So far so good.  I am taking stoll softners am and pm to avoid the dreaded navelBIND!  I feel some nausea... they gave me emend, zofran and stemetil AND decadron!

Suze35

Nannababy - I'm glad to hear so far so good! I'm worried about the Cisplatin, as I know it can be rough on your stomach. Keep us posted!

DDG1

I was diagnosed May 5, 2010 after finding the lump myself...2cm.  I opted for the clinical trial at Stanford with GEM/CARB/PARP but had to stop before completion due to tumor growth.  I had the upper right quadrant of my breast removed and 11 nodes tested...all negative.  Stage III grade 3 at surgery with tumor at 6.5 cm.  Clear margins.  The doctors believe the PARP could have pulled the cancer back out of nodes as they expected cancer to be there and change in consistency of nodes.  Went on to have 4 rounds DD AC followed by Taxol weekly for 12 rounds.  I was allergic to Taxol and had Abraxane instead.  Also did 33 rounds of radiation concurrently with the abraxane.  Finished all in mid-February.  Now fear cancer is back in breast.  I've been on antibiotics for a week and go back in Monday and expect a biopsy will be scheduled.  Experiencing swelling and redness in breast, hot to touch, now have 2 scaly spots as well.  No change with antibiotics.  Frustrated to think it may be all starting back up again.

NannaBaby

So far so good on Cisplatin/Vinorelbine side effects.  I do have dark urine and nausea and mild ringing in the ears, but nothing compared to AC or Taxotere!  The nausea is lasting a long time! But is controlled with Zofran and Stemetil.  I feel good and don't have any mouth or taste issues! I LOVE food!  I get vinorelbine "booster" tomoro.  It's a short 15 min. infusion

NannaBaby

Hey Ladies!

You won't believe the bad luck I've been having!!!

1 - I sprained my right arm and it hurts like crazy!

2 - I've got a pulmonary embolism! Which caused the worst chest pain I have EVER felt!

3 - Chest and arm lymphedema!

The PE is a blood clot in my lungs. They think it's from chemo (probably Cisplatin). Now I need to give myself a needle everyday for 6 months of Fragmin. SUCKY! I am sooo glad that I have health insurance! the Fragmin costs $1200 a month!

NannaBaby

so far so good

Suze35

NannaBaby - I'm glad to hear all is good!  I'm starting my rads tomorrow, then will move on to chemo, either a clinical trial or Avastin with Cisplatin/Gemzar.  So I'm glad to hear it isn't so bad!

nastazia_s

Does any of you have zometa for osteoporosis prevention?

bak94

I am far behind all of you! I started my first ac. I will have 4-6  treatment of slow drip ac in the hospital. and do 4 or 6 depending how I tolerate it, then it is off to 12 weekly taxol(actually trying to convice doc abraxane due to past allergy) and carbo. Then double mx. then rads. I have positive mammary nodes, and one node is in deep, that isa sp scary but my doc keeps saying that it is still considered local and treatable so I am haninging on to that. Other than that I have no other suspected lymph nodes positive

I am scared to know what stage I am reallly in. I asked doc and he said I am not stage 4 because it is not proven? What does that mean? All my scans were clean.  but does this deep internal mammary node make me stage 4? Or is it 3c or 3b.

tibet

bkj66

Is any of your internal mammary node positive? Even if, I think it for sure won't be stage 4. I don't know which stage the internal mammary node account for though. Maybe other wise ladies can offer their knowledge here. But I am sure it is not stage 4. 

NannaBaby

BKJ66 - I had an enlarged intercostal lymph node and had my internal mammary nodes radiated. I am stage 3a. 

My chemo is half way done! I am starting to feel the accumulative effects though... fatigue and nausea bother me for the first week after Cisplatin.  But, the vinorelbine I get on day 8 is easy!  I feel positive that I will be ok!  Deep down I am feeling that the cancer is gone! I still have my hair.

bak94

What is an intercostal node? All these nodes are so confusing to as where they are located. I might have one that is located under the mammary chain, but they aren't really saying it is part of the mammary chain? I am so confused and sometimes I get too scared to ask for clarification! What was you original neo chemo? Was it AC?

NannaBaby

I am still not exactly sure where the intercoastal node was... I know it means between the rib cage.  Don't be shy to ask for clarification! I understand that mine wasn't as far as the internal mammary chain...???

My neo adjuvant chemo was Adriamycin and Cytoxan X 4 every 3 weeks, then Taxotere X 4 every 3 weeks.  I had moderate-good response

gillyone

Lumpectomy.

A/C DD x 4

Taxol DD x 4

rads x 30ish - can't quite remember now!

Almost 2 years out from dx.

(Of course going through all this was not so simple as seeing it laid out as bare facts )

bak94

gillyone, can I ask you a question? What made you stage 3c? Just the number of nodes, or where they were located? I have mammary nodes positive but not auxillary, and something in the mediastinal area that the docs do not think anything about, just mentioned it because one is ever so slightly larger than the others. So they haven't told me a stage. Doc said no evidence of being stage 4-what an answer, huh? They say it is still all local/regional and can all be radiated ofter chemo to clean it up.

tibet

I read somewhere internal mama node are accounted for as stage 3. Don't recall where read it. You should ask your doctor.

gigix4

I am stage 2, bilateral mastectomies, power port being placed on June 1st, will start 6xTAC on June 7th, should be done in September.  1/13 nodes, am seeing rad onc for consult tomorrow to see if I need rad tx's.