Neoadjuvant Chemo - If the Chemo Works, Why Not Take More!!!

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Meggy
Meggy Member Posts: 530

Sisters, I wish I could have written this post for myself while I was doing chemo.  I've had a lot of time to think about this so I'm offering my opinion.

When we do chemo before surgery, we often have so much info on whether a particular chemo drug worked even before receiving the pathology report for the later surgery.  Time and time again sisters talk about their tumor collapsing or disappearing while on a particular chemo drug.  We can feel with our fingers that the tumor is nearly gone even before the mastectomy. 

For me, after just 2 rounds of AC, my tumor collapsed.  By the end of 4 rounds of AC, my tumor could no longer be felt.  DUH....AC was my wonder drug.  My oncologist followed statistics and switched me to Taxol after the 4 rounds of AC.  Now taxol may have also worked but with no palpable tumor, there's no way to be sure.  We did what studies say to do, swich after 4 rounds of AC.  But why not think about ME as a study...my most important study.  We had such wonderful information that AC worked so well on my particular tumor yet we did nothing differently even though we had this "personal study result."

Even though AC has serious issues, I wish I had been given at least a 5th round of AC...actually I wish I had 6 AC before switching to Taxol.  I ended up taking two more AC after surgery but with the break for surgery, I'm sure it was not as effective as if it had been continuous. 

Here's another example.  I think it was Twink who told me that she took AC first (neoadjuvant) and it did not effect her tumor noticibly.  Then she took 4 Taxol and she could feel her large tumor dissapear under her fingers.  She had found her wonder drug in Taxol (it might have been the other Taxane Taxotere).  I wish she had been given round 5 and round 6 of the Taxol before surgery. 

My point is that in neoadjuvant chemo, we get the benefit of knowing that one or more of the drugs is working really well to kill off our particular cancer and its not the same drug in every person.  I feel that once we have that info, we should have the opportunity to chose to keep hittting the cancer with that same drug for a little longer before surgery.  When the oncologists say its too toxic...its too much, I say, "Well how much chemo will you be giving me if I get recurrent cancer?"  Wouldn't it be nice to give me two more hits of this drug and avoid chemo in the future?

Then, after surgery, if we find we did not get pathological complete response, there is a chance to take more chemo.  I've been told though that the up front chemo with no break for surgery does more.  But if Taxol or Taxotere was the drug that made your tumor nearly dissappear, consider taking the other taxane as your follow up drug with carboplatin. 

I think about Twink all the time.  It was one of the taxanes that nearly destroyed her tumor.  Upon surgery, I believe she had a tiny bit of tumor left and micro mets in 3 nodes.  (I hope my memory is right).  Then she did more chemo after surgery but it was just carboplatin.  Since one taxane had been so effective for her for her particular tumor, I wish the oncologist had advised her to take carboplatin with the other taxane (Taxol or Taxotere).  

These two taxans work differently.  It is not like repeating a chemo that the cancer has already seen.  They are different enough that you are hitting the cancer in a new way.  They are similar enough, though, that if one worked, its reasonable to think the other would work also.

I ended up taking 2 more rounds of AC after surgery but I'm sure they would have been more effective if all 6 were taken continueously without any break for the cancer to learn to resist it.  AC was my wonder drug.  Taxol may have also worked.....it may have been the drug that got rid of the micro stuff because I had no invasive left in my breast at all and just 1 mm in one node.  That 1 mm makes me dang nervous however.  Because the Taxol may have also worked, I took the other taxane, Taxotere with Carboplatin, as my follow up after surgery.

I just think the neoadjugent setting gives us such wonderful information...why not use it to add a little more up front of whatever worked for us.

I'm not saying everyone should take as much chemo as I did.  I'm just saying that if we bother to do neoadjuvant chemo, 1 or 2 more doses AT THE TIME, of the drug that is clearly wiping out the tumor seems like a smart thing to do.  I wish I had done it and I wish Twink had also.  

Side note:  AC has serious toxicity issues but I had only had 240 ccs before surgery (60 ccs per round).  So by the end of two more taken after surgery, I still had taken only 360 ccs.   It does make me a bit nervous but my Stanford cardiologist said he wasn't worried so I'm just putting it out of my head.  He said it was 400 or 450 where he gets concerned...I can't remember the exact number.  (I did so much chemo because I'm a single mom and their dad is out of the picture and my youngest was only 7.)

I love all of you and I want us all cured.  I just think we have to be creative and tweak things a little to our advantage.  

-Meg

Comments

  • onesickboob
    onesickboob Member Posts: 19
    edited August 2009

    Hi Meg! 

    Thanks for the post.  I just passed the halfway mark of the chemo portion of my treatment and I needed a little reminder.  I am participating in a clinical trial and the plan is 4x taxotere (done!) and 4x A/C.  My tumor is shrinking with each treatment and I hope that it will be gone by the time I have my bilateral mastectomy. 

    When we get neoadjuvant, it gives us and our doctors an opportunity to see how our cancer responds to chemo.  Not only wonderful information as you pointed out, but I know that my outlook improves with each report from my oncologist that my tumor is shrinking.  We KNOW that the chemo is working!  That is good news in tough times.

  • London-Virginia
    London-Virginia Member Posts: 851
    edited August 2009

    What a fascinating set of questions - you raise some very interesting points.

    best wishes to all -

  • NewportLori
    NewportLori Member Posts: 67
    edited August 2009

    I am getting neoadjuvant TC and my onc scheduled me up front for 6 cycles instead of the 4 many women get, but then I have both multifocal diseease and a very large primary tumor.  I'm 6 days into my second cycle and am tolerating the chemo reasonably well.  I will be getting an MRI next week to see if there has been appreciable shrinkage of the tumors, but I can already tell that my primary tumor seems a bit smaller.

    Neoadjuvant chemo seems to make so much sense and is delievered through an in-tact vascular system.  It surprises me that it isn't used more often.  I suspect it could eventually become the standard of care in more situations.

  • scoutmm56
    scoutmm56 Member Posts: 22
    edited August 2009

    I was rushed into the neoadjuvent chemo 4 ac 4t .  It was only after the fact that I started reading things questioning if tumor shrinkage equated with an increase in overall survival...the chemo to me was so toxic with lingering side effects that I would need proof that tumor shrinkage meant that I was going to live longer.

  • cwrightrn
    cwrightrn Member Posts: 242
    edited August 2009

    Meg--our chemo regimens are very similar.  I had dose densing neoadjuvant AC/T. 4 cycles of AC every 2 weeks followed by 4 cycles of Taxotere every 2 weeks.  After 2 of the AC we could no longer feel my primary tumor (it was large). At the end of chemo I was clinically (the Dr could feel nothing) and radiographically (PET/CT scan was negative) responsive to chemo.  I then had a bilateral mastectomy and did have some residual at the time of surgery....it was less than 1cm (PET/CT's only see to 1cm).  So what to do now?  A 2009 May ASCO article says that after neoadjuvant chemo with residual cancer at the time of surgery, the recommendation is to do NOTHING.  WHAT?!!  Believe it or not that is the recommendation.  I didn't agree with this....just sitting around waiting for the cancer to pop up somewhere else.  My Dr was going to do Xeloda (pill form) with rads but I didn't like that answer...I felt that it only hit the cells at one phase of their cycle and I wanted combination therapy and to go back to IV. After battling insurance, i was approved this week to now do carboplat and taxatere with rads (starting in the next few weeks....I need another chest port--they took mine out with my mastectomy in June, ugh!).  Gemzar and avastin are miracle drugs for triple negatives but are only approved for stage IV which I am not....so I have to wait for those drugs. I am very surprised Meg that they did more AC because of the toxicities.  I know my Dr talked to me about toxicities and I told her I would rather be ALIVE than worry now about possible renal or heart failure in the future.....there is always dialysis or a mechanical heart but what is the option to LIFE?  Thankfully my oncologist was on my side but that isn't always the case.  I just had to come to the point where I know that if this recurs in the future that I did EVERYTHING in my power NOW to kick it!  I want no regrets....

  • Meggy
    Meggy Member Posts: 530
    edited August 2009

    Wow cwrightrn, we are so similar.  My former (wonderful) standford breast oncologist Alice Guardino, recommended carboplatin with taxotere after surgery.  I think it is a good follow up move.  I felt the same way about the toxicity, my kids are so young and my ex-husband is totally terrible and if he were to get them, he might take them out of the country to his countries (Somalia and Saudi Arabia).  I felt that I had to take the extra blows to my health now if that meant securing my kids future long enough for him not to get them.  I will emancipate each of them at age 14 to remove his claim on them.  Yippie...only a year and 9 months to go for my daughter...no Saudi Arabia for her dang nabit!!!!!

    I've heard there are some studies (never read them..anyone have a link?) that chemo after surgery, after neoadjuvant chemo was not proven to help.  Well, they'd have to have a study showing it doesn't ever work on any triple negative including one named Meg for me to buy it.  My guess is that those studies did not distinguish triple negatives.  I think we are very different from the other breast cancers who probably were the bulk of the study (just my guess).  I think that many of us have a special relationship with chemo in that it works so well. Maybe it did or maybe it didn't help...at least I did my best.

    I sort of took a crazy amount of chemo...not for everyone....but I just had to.  But a couple extra rounds of the one proven to work all in a row taken before surgery...might be something for people to consider unless the person really suffers from chemo.  That is what I wish I had done. 

    I should mention that the extra AC I took after surgery was done without my regular oncologist to talk to. She was away...getting treated for melanoma.  The wonderful young oncologist she left me with did not want me to take the extra AC due to toxicity.  I just begged till she gave up.  I have no idea if it worked given that there was such a break...really would have been better taken up front before the switch to Taxol..  

  • metroplex
    metroplex Member Posts: 16
    edited September 2009

    My mom appears to be HER2+ and estrogen-, Stage 3 IDC, and it might have spread to her liver. There was a spot in the ultrasound so they're going to look at it. What is this "A/C" you're referring to? I've been doing research on all the types of chemo drugs she may have to use, and her oncologist said that she'd need about a year's worth of treatment: 6 rounds of taxotere and carboplatin, and herceptin throughout. She didn't mention any other neoadjuvant chemotherapy treatments or the A/C, but it seems that the A/C is working well for everyone in this thread.

     Is AC = Adriamycin cytoxan? If so, her oncologist recommend AC only if the Her2 was negative. Does that make sense?

    How much did it cost for each treatment? My mom doesn't have health insurance other than the AARP plan, so we're going to have to pay out of pocket or find some financial assistance.

  • Tabatha00
    Tabatha00 Member Posts: 133
    edited September 2009

    I just finished my first A/C and other than some pretty miserable tummy issues I've been doing o.k.   I'm having 4 A/C (every 2 weeks) and then 12 weekly Taxol treatments.   I'm doing this neoadjuvant (sp) because the surgeon is going to do a skin sparing bilateral mastectomies after I finish chemo.    I had a biopsy of a lymph node before I started my first A/C on September 3 and it showed microscopic cells which isn't what I would have wanted but I'll take microscopic over fully involved any day.  The radiologist said I had a completely normal looking lymph node (it was on the large side) but said the chemo would get the microscopic cells in the lymph node so I am reassured by that.

    I'll be doing radiation as a precaution as well after surgery.    I have my next A/C on September 18 and hope to have my stomach issues ironed out by then.    

  • Meggy
    Meggy Member Posts: 530
    edited September 2009

    Metroplex, I just don't know anything about what works for HER2+, except that herception is used.  Seek out the women with HER2+ cancer, I hope they can help.

  • Sunris
    Sunris Member Posts: 120
    edited September 2009

    My tx plan was to do Taxol x 12  then FAC x 4 .   My Taxol was halted after the 9th one due to neuropathy, however I will say that the tumor was no longer palpable.

  • taj72
    taj72 Member Posts: 50
    edited October 2009

    Hello all!   My mom was diagnosed with BC (Stage 3B, Triple Neg) in April.  Because of the size of her tumor and chest wall invasion, it was determined that she would do neo-adjuvant chemotherapy to try to shrink the tumor prior to surgery.  She was selected to participate in a clinical trial of a new drug (Sutent) along with weekly chemo which started in May.  She did 12 weekly treatments of Taxol along with daily Sutent for those 12 weeks.  The tumor responded very well to the Taxol and shrunk from the approximate size of a golf ball to  practically undetectable to the touch.  Then about 6 weeks ago my mom began phase 2 of the trial and switched from Taxol and Sutent to weekly Adriomycin and daily, oral tablet dosage Cytoxan.  She was scheduled to do 15 weeks of that, instead at last week’s chemo we learned that her monthly ultrasound showed that she is failing to respond to this chemo and the cancer has restarted growth.  It is now detectable to touch again and approximately the size of a marble.  She has been removed from the clinical trial and we meet with the oncologist tomorrow to see what our next course of treatment is.  Most likely the next step is surgery and then radiation.  However, what is really scaring me is that, based on whatever the onc saw on the MRI he ordered to confirm the ultrasound results, he has now ordered a PT scan which makes me question whether the cancer has spread.  I am very scared for my mom, since she is triple negative, if 12 weeks of Taxol didn’t stop it and Adriomycin and Cytoxan are ineffective, what else is there?  Also, my mom is unlikely to do any more chemo after six months already that haven’t been successful.  Please, any thoughts/advice would be appreciated.  Thank you.

  • Faith316
    Faith316 Member Posts: 2,431
    edited October 2009

    taj72 wrote:  "I am very scared for my mom, since she is triple negative, if 12 weeks of Taxol didn't stop it and Adriomycin and Cytoxan are ineffective, what else is there?

    I took 4 rounds of AC followed by 12 weekly Taxol with concurrent Herceptin for my initial dx of IDC.  Apparently none of that worked as in the midst of all of this I was dx with inflammatory breast cancer.  They switched me to Tykerb (which is for HER2 postiive) and Xeloda and I have had a wonderful response.  After one dose of both (they are oral drugs instead of infusions) my IBC rash started going away.  After 3 weeks, I could no longer see the rash at all anymore.  I have now been on Tykerb and Xeloda for nearly 4 months and will be for a bit longer before I have more surgery.  All of my PET/CT scans show no spread.  I have another scan on Nov. 2.  Hopefully it will also be clear.

     AC and Taxol are powerful drugs and work great for some people, but not all.  There are other drugs out there.  If your Mom didn't respond to AC and T, don't give up hope.

    (I have to note, that I am not triple negative.  I am ER-, PR-, and strongly HER2 +.  I realize that all types of BC are different and some respond differently than others to particular drugs.)

  • Faith316
    Faith316 Member Posts: 2,431
    edited October 2009

    I had AC and Herceptin both and did not have heart problems.

  • taj72
    taj72 Member Posts: 50
    edited October 2009

    Faith316-  Thank you so much for your input.  The onc is recommending surgery and then 3 more months of chemo with Abraxane (weekly) and Avastin (every 2 weeks), followed by radiation.  Will ask about Xeloda for Triple Negs.  Thanks for your help!  Good luck with your treatment, I hope all is clear on Nov. 2!

  • Meggy
    Meggy Member Posts: 530
    edited July 2011

    Still feel very strongly about this topic.  If your chemo works like crazy during neoadjuvent chemo....I'd ask the doctor for a little more of that chemo drug than is standard.  The evidence that we get on how well it is working should be used to improve our odds. 

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