Dose dense chemo and then surgery, for triple negative?

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BanR
BanR Member Posts: 289

Hi all

I have been recently diagnosed with triple negative grade 3 cancer. the size of the lump is a little over 1 cm. the line of treatment suggested is dose dense chemo( interval of 2 weeks, 8 times), followed by surgery to take out the dead tumor tissue, sending it to pathology lab to check for complete inactivity and if complete inactivity is found( that is PCR achieved), hence you can be assured that it wont recur.

i believe "recurrence" and "metastatis" is the key feature for triple negative.

the other line of treatment recommended is the traditional one, get the surgery done, take out tumour, check for lymph nodes, then followed by 6 times chemo, at the usual 3 week interval, followed by radiation.

wanted to know, is it true ..that the first line of treatment is the new protocol for triple negative cancers?

your help will be appreciated.

also, if i can get information from someone about the chemo drug used in stage 1 triple negative cancer. 

thanks

Comments

  • gillyone
    gillyone Member Posts: 1,727
    edited September 2013

    Hi - I don't know if chemo first is the new protocol, but we are certainly hearing more about it on the boards. I suggest you post this question on the thread calling all TNs as it is a very active thread.

  • BikerLee
    BikerLee Member Posts: 355
    edited September 2013

    Good morning!

    I think it is true that chemo before surgery is becoming more and more the norm.  It is also what I had.  I apprecaited having chemo first for a few reasons. One - you are getting whole body treatment as soon as possible, which means rogue cells are getting treated sooner...  Two - you have TIME to work out your surgical plan.  Three - you get to know the response of the cancer to the chemo (I - happily - did have the PCR - phew!).  

    I am a little bit of a special case since I was enrolled in a clinical trial called ISPY2.

    I received 12 cycles of weekly taxol, with carboplatin added for every third cycle.  I also took an experimental drug during this time.  The experimental drug made my counts drop lower, and so I had three delayed weeks...  

    After that phase, I had the typical dose dense AC - four cycles - once every two weeks.  No delays during that phase.

    After that, I had scans and then surgery.  I had a sentinel node biopsy, which was negative for cancer cells and a bilateral mastectomy. Happily, the pathological report concluded that I had a complete pathological response. This means my risk of recurrence is very low.  What a relief!

    I hope this is helpful. 

    Good luck!!!!

  • BanR
    BanR Member Posts: 289
    edited September 2013

    Thanks for the quick replies, gillyone and BikerLee!!

  • jenjenl
    jenjenl Member Posts: 948
    edited September 2013

    i wish i would have done chemo 1st for the reason's bikerlee mentioned.  i will never know if i had a PCR. 

  • Gramof2boys
    Gramof2boys Member Posts: 194
    edited September 2013

    I'm having chemo first also, then surgery. I do think that's what they do at MD Anderson now. I don't know if it is just with TN or not. I hope that I am getting up to date treatment as the center is affiliated with MD Anderson.

  • winnieg
    winnieg Member Posts: 14
    edited September 2013

    Hi I too had chemo first then surgery. After AC x4 and Taxol x12 my tumor had shrunk by half Felt good to know that the chemo was working. It also felt good to know that I killing any cells that may have travelled out of my glands while awaiting surgery .Good luck with your treatment.

  • encyclias
    encyclias Member Posts: 302
    edited September 2013

    My center here in Pensacola is affiliated with MD Anderson, my MO certified by them.  I did chemo first (A/C x 4) and then surgery.  The chemo completely wiped out the smaller tumor (2.3cm), left only 3mm of the larger one (2.7cm), cleared the involved lymph nodes.  I was a very happy camper.

  • BanR
    BanR Member Posts: 289
    edited September 2013

    The size of my lump is 1 cm, and hence here there are 2 views. If I get chemo first, then perhaps there will be nothing left to take out post surgery and they they will never know what the thing exactly was and they will never be able to do the sentinel node biopsy. Also, there is a 60 percent chance of getting a Pcr, which means you have a very very low chance of recurrence, but what if after all this ordeal, I don't get a Pcr! Do I live with the constant fear of getting it back for the rest of my life! What I understand is , if the size of the tumor is large, then get the chemo first to reduce its diameter, and then surgery becomes easier. But I still don't understand the concept of dose fence chemo, over traditional chemo!

  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited September 2013

    Dose dense chemo is given once every two weeks vs once every three.  It has been proven to be a bit more effective, and now is possible because you can get immune system support.  Your body doesn't get a chance to completely recover between cycles, but neither do the cancer cells!

    I did 12 rounds total, and I am just fine 4 years later.  Good luck! - Claire

  • BetterDay
    BetterDay Member Posts: 116
    edited September 2013

    Hi there, BanR.  I'm also grade 3 triple negative and am doing chemo first.  I'm doing weekly Taxol x 12 (started on September 16) followed by AC every other week x 4.  I think starting AC first is more common based on what I've seen on these boards, though there are those that start with Taxol.  So far no major problems with the Taxol for me after two treatments.  Really hoping it stays that way!  Good luck with your decision and treatment!  Keep us posted.

  • knightzoo
    knightzoo Member Posts: 171
    edited September 2013

    I am also doing chemo first, and taxol first.  My center follows Mayo protocol and says that's what they do.  I started weekly taxol 9/13 so my 3rd infusion was yesterday.  Very few SE.  I'm driving myself crazy with feeling my mass and if it's shrinking.  I've been combing the boards to look for any experience - if you have any - please share!

    I read somewhere that the dead cancer cells can form scar tissue, so no change is not necessarily bad.  I do sometimes notice tingling like the neuropathy in my fingers in the tumor site, so I'm hoping that's the taxol at work! As much as I would love the lump to be cut out and gone, I find reassurance in that I'm attacking my whole body first and potentially reducing lymph node involvement as well.

    My surgeon says this is becoming more common and has been very happy with results.  She says she sees new cases weekly where she removes the markers placed during biopsies and there are no remaining cancer cells.  Fingers crossed this works for us!

  • slv58
    slv58 Member Posts: 1,216
    edited September 2013

    Knight zoo, try and relax, although I know that is sometimes hard to do. I just want to reassure you, I was the same as you with regards to feeling my mass. I had a different chemo than you, however my tumour grew to 3.2 and was quite hard. It was also very sore and it was a constant reminder that it was there--or so I thought! My MO kept assuring me that it was getting smaller, which I could also feel, but the twinges of pain were always there. When I completed chemo and just before surgery, I could still feel "something" and was almost certain that I would not achieve PCR (to the point of researching what my next options were). Well after 3 weeks of unbearable waiting, I was astounded to learn there was absolutely no evidence of tumour and I had indeed achieved PCR. I guess what I could feel was scar tissue. My MO tried to assure me that the discomfort I felt prior to surgery was normal and quite indicative that chemo was working.

    I hope this assures you a little, wishing you the best!

  • knightzoo
    knightzoo Member Posts: 171
    edited September 2013

    Thank you!  How long did it take to feel the change? I'm only on day 16 of a 20 week treatment, so it is early...yet I obsess!

  • slv58
    slv58 Member Posts: 1,216
    edited September 2013

    I did FEC D chemo (pretty standard here in Canada) and I could feel a softening by my second FEC treatment. It didn't feel smaller to me, but softer. My MO said that I would feel a marked change when she switched me to the D (docetaxol=taxotere) part-she was right, after the first D treatment, it definitely felt smaller to me but even after chemo was done and I was waiting for surgery, I could still feel something.i did 3 tx of FEC every 3 weeks then 3 tx of D every 3 weeks. Apparently what I had is called "high dose" chemo as opposed to dose dense.

  • knightzoo
    knightzoo Member Posts: 171
    edited September 2013

    That's a good explanation of what I'm feeling - softer.  And your second FEC would have been like day 22 right, if you went every 3 weeks?  Thanks for sharing.  I'll keep monitoring and trying not to stress! I see the MO for a physical eval on week 5, so 2 more weeks.  Fingers crossed!

  • slv58
    slv58 Member Posts: 1,216
    edited September 2013

    Yep! As long as your MO is happy with your progress, try not to stress! Mine was very p,eased that she could feel a change by day 21, but again to me it was not a size change ( it felt just as big) but it didn't seem to be as hard. For me, I was more worried about the pain/discomfort I felt in the tumour. This may sound dumb, but ill share-I had it in my mind that I was feeling pain because the tumour was getting a blood supply and was "alive", so if I still felt pain-to me it was still "alive". My MO explained that what I was feeling was probably due to the tumour being attached to muscles and it was pulling those muscles as it was shrinking.

  • placid44
    placid44 Member Posts: 497
    edited September 2013

    Banr,



    They can do the sentinel node biopsy before chemo starts. I did. (I did MRI, sentinel node biopsy, chemo, BMX, radiation.). I did not get a pcr...it shrunk 77 percent. It is unusual to get a pcr, but more common with grade 3 tumors than others. I was obsessed with pcr and disappointed, but lots of people who don't get a pcr still do fine/no recurrence or metastasis. Also you are stage 1, so pcr is less important. Also circulating cells are easier to kill than the tumor, so even if you have some residual tumor, you can still kill all the circulating cells. Of course it is possible that tumor does not respond at all, or much, and that is not good.

  • BanR
    BanR Member Posts: 289
    edited October 2013


    hi everybody..


    Many thanks for participating in this discussion


    What I understand, if you achieve Pcr, then your chances of recurrence is around 10 percent, and if you don't get Pcr, then chances of recurrence is a little more. It's all about probability and wen it comes to cancer nothing can be said for sure, and for triple negative the first 5 years is the most crucial


    The size of my lump was 1.2 cm and lymph nodes not affected as per pet scan and MRI . Went for surgery first and hence take the thing out of my system in the first place ( psychological Pcr!). Surgery done on1st October, surgeon says, margins clear, lymph nodes negative, but IDC triple negative. Normal lumpectomy performed with chemo port insertion.


    Now I begin with. Dose dense chemo on 29th, fec at 2 week interval, 4 times and then taxol at 3 week interval 4 times and then radiations.


    Hope dose dense chemo won't cause long term side effects for us. It's a new concept.


    All the best to all of you and so happy to hear that all you ladies are doing good...

  • BikerLee
    BikerLee Member Posts: 355
    edited October 2013


    Good afternoon! As I'm reading the responses... one thing I would like to suggest is adding glutamine as a supplement - this has been vetted out in clinical trials to reduce neuropathy... and not interfere with the effectiveness of chemo. OF COURSE - ask your health care team, but avoiding neuropathy is a good good thing. I used glutamine - three times per day for the first several days after each infusion. 10 g swirled in water (that's about a rounded tablespoon full, for the non metric folks)... drink up. Doesn't taste like much - helps keep that hydration going... Start day after infusion... and do for 3-4 days... I had a very mild amount of neuropathy in two toes and just the very very tips of my fingers, which was much much less than what folks around me had. Either I was simply lucky or the glutamine helped me out. Based on what I've learned about glutamine, I think the glutamine helped....


    Anyway - when I read your post- Knightzoo - that was the first thing that popped into my mind. Ask your health care providers, just in case they don't like the idea... But it seems to be pretty widely supported, using glutamine as a supplement during chemo...


    Good luck everyone!

  • slv58
    slv58 Member Posts: 1,216
    edited October 2013


    I also used l glutamine, 3 x a day while going through treatment. My MO said it was fine. I still take it 2x day as I have neuropathy in feet and hands. My hands are much better, but I still have quite a bit in my feet. I've gotten use to it and am hoping more will diminish with time. I also took B 6 as this is also suppose to help.

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