Neoadjuvant chemotherapy - Triple Negative

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QueenKong
QueenKong Member Posts: 154

Hi, I'm new here. I'm receiving neoadjuvant chemotherapy and am looking to connect with others who have BTDT (been there, done that) or are currently in treatment at any stage. Neoadjuvant is chemo before sugery for those who don't know.

My chemotherapy treatments are set for eight (8) weeks, every other week; four (4) doses of AC (Adriamycin, Cytoxan) first, then four (4) of Taxol followed by surgery and eventually radiation. My fourth treatment on Wednesday will be the last of the AC.

The Taxol scares me. Any advice on handling it? The surgery scares me more. I am wondering how to prepare myself, what I should look for in a surgeon? and then the radiation?

I've been having a hard time emotionally and I'm worried it will effect my treatment. I've been exercising have lost a little weight but more needs to be done. My toenails on my big toes are starting to hurt and I keep getting blisters. The cutiles on my finger nails hurt. I think it's all from the chemo. I have a bad cold with laryngitis that feels like it might turn to bronchitis

My oncologist confirmed at my last chemo treatment that the chemo is working and the tumor is smaller, it's a thickening now. I want a MRI to confirm but she said to wait. I am so happy it is working but wondering what will happen after chemo. 

Comments

  • kiddy
    kiddy Member Posts: 7
    edited October 2012

    The taxol for me was so much easier than the a/c. The only side effect of the taxol was a little fatigue and that is it!

  • QueenKong
    QueenKong Member Posts: 154
    edited October 2012

    Seriously? I am hoping I am so lucky. I am reading the side effect list. The neuropathy concerns me the most.

  • kiddy
    kiddy Member Posts: 7
    edited October 2012

    I had no neuropathy whatsoever. I worked my regular schedule when on taxol. You will do well. :-)

  • BikerLee
    BikerLee Member Posts: 355
    edited October 2012

    GLUTAMINE! This can be purchased as a powder... Swirl ten g in water - drink up - three tmes per day for the first four days after each taxol. It has been shown - in clinical trial - to reduce the incidence of neuropathy and mouthsores and so on.... So, consider adding that to your routine for the taxol phase....



    And good luck - I had a longer regimen, but having chemo before surgery is awesome because you have tme to make decisions... And know whether the chemo is working... I ended up with a complete pathological response... Which was awesome.



    Good luck.

    Lee

  • Hopex3
    Hopex3 Member Posts: 397
    edited October 2012

    Hi, I was just diagnosed about two weeks after you and it seems I am following the same treatment plan as well. I have my last AC on Thursday and then will have Taxol for the last four. I too read all the horror stories about Taxol but my Oncologist said I will probably not be as tired on it. She said it is actually easier on you. The only negative thing she said is the chemo session will be longer. I have done well with the chemo so far. I have changed my eating habits. Nutrition and exercise if your up to it, seem to be very helpful as you fight this disease. I bought a book Fighting Cancer with Nutrition and it gave me some good tips. I also have a cough. They did a chest x-ray and my lungs were clear (thank God) so, My doctor put me on a five day antibiotic and a cough syrup called Deslyn. I feel so much better. My oncologist also told me that my tumor seems to be smaller but now I feel another one and my armpit hurts all the time. No one understands why as they did a dye test and it didn't show any active lymph nodes so I don't know what is going on. It scares me though. They won't give me an MRI either. I hate going through all this but I try to remain positive.

  • kiddy
    kiddy Member Posts: 7
    edited October 2012

    I would insist on an mri. It's your body and you have to be the one looking after it the most. Be persistent and don't give up.....

  • moe0279
    moe0279 Member Posts: 200
    edited November 2012

    I also had Neoadjuvant chemo...Taxol first 12 weeks, one a week...this was the easiest one for me...I only had a little neuropathy, I did take Glutamine daily...I truely believe that helped! I worked throughout the 12 weeks!  AC was much more difficult and it was the "red devil" for me!!!!  I was out many days and felt horrible with AC...You are halfway there...My hair even started growing back with Taxol...Good luck!  

    Chemo, Surgery and then Rads...

  • placid44
    placid44 Member Posts: 497
    edited November 2012

    I've completed 4 cycles of dose dense neoadjuvant AC and 2 weeks of dose dense taxol and the tumor does not seem to have shrunk much. I'll have MRI after six weeks of taxol to check. I had been optimistic about shrinkage, or of course pathological complete response, since my tumor is grade 3 and ki 67 of 70 percent. But I've read that a subset can be resistant.



    I know achieving a pcr is a minority of women, but I've read so many other posts of women with my stats who have done it. I've also heard from surgeon - and read posts - that say the remaining "tumor" can end up being just scar tissue/dead cells when they do path at surgery, or that tumors "blow up" before they die, but it seems like it should be shrinking rapidly on chemo. I am having trouble waiting for mri without some other sign of what is actually going on.



    I would be interested in others' experiences: Is there any (non-path) signal when it is scar tissue and not invasive disease? Info about incidence of chemo resistance among those with my stats? When in the twelve-week taxol cycle wouldstud tumor shrink, IF it's going to shrink?

  • BikerLee
    BikerLee Member Posts: 355
    edited November 2012

    Hi there

    So...  I had the taxol first, with 4 cycles of carboplatin with the taxol and an experimental drug called abt888 (ISPY2 clinical trial).  Then, I had the AC.  I had an MRI after the 12 cycles ... and I definitely could still feel a lump, although it was definitely smaller - not a lot smaller tho. The MRI showed just the tiniest amount of enhancement in contrast.  The oncs told me they would have sent me home if that had been my original MRI.  I asked, so maybe I don't need AC?  They weren't keen on skipping the AC.  There was definitely a loss of that wee bit of enhancement on the MRI after the AC, but the lump never really changed shape that I could tell during the AC part of treatment.

    It was on pathology post-surgery that it was clear that I had the complete pathological response.  It had all be converted to scar tissue - I recall the phrase - "cholesterol bridges" and some other language.  Music to my ears. 

    That's all I know.  I did ask whether I could do additional drug therapy if I did not get the complete pathological response.  And they had some ideas about things to do...
    Metformin, for one.. some other drug that I cannot remember the name of....

    Good luck.  I hope your tumor is all scar tissue!!!!!

  • hmessenger
    hmessenger Member Posts: 5
    edited November 2012

    BTDT!!!!  I am triple negative (40 years old), diagnosed in March.  Just finished chemotheraphy Sept 6.  4 doses of AC, then 12 weekly Taxol treatments.  I had bilateral mastectomy with reconstruction on Sept 28, now dealing with different opinions on whether or not I need radiation...extremely frustrating. 

    I have learned over the past several months that reactions to chemotherapy are different for everyone, and it will be different for you.  I can only share my story and hope that it will bring you comfort in some way or fashion. 

    The AC treatments were horrible...there were days that went by and I didn't even know my name!  But...it was over and done in a few days.  With the weekly Taxol treatments it was much different.  I started off with minimal side effects, but as the weeks went by the fatigue crept up on me.  I managed to work through the first 4 months of chemo, only taking a day off now and then.  The taxol finally got hold of me and I was unable to do anything the last 4-5 weeks of treatment.  I tell others, I feel like my soul had been sucked out and left me with nothing but a shell, my physical being.  I would get my kids off to school, sleep all day, and then get up just long enough to help my husband get dinner cooked, kids fed, homework done...then I was back to bed.  I never had any neuropathy, but did experience extreme joint pain and intermittent muscle pain. I also struggled, mentally, from losing every hair on my body, gaining 20 pounds, to the point where I didn't recognize myself in the mirror.  My oncologist was terrific in providing medication to help me tolerate the side effects.  Took me about 3 weeks to start feeling better after the last Taxol treatment...just in time to head into surgery.  The surgical procedure itself was a lot to digest.  I woke up surprised at how disfigured I looked.  But about the time the drains were removed (10 days) and my plastic surgeon began filling the expanders, my hair started to grow, eyebrows started to reappear and I began feeling like the old me.  My confidence and energy levels have returned. 

    I did have an ultrasound after the four rounds of AC and the tumor did show regression, with an MRI at the end of treatment.  However at the time of surgery it was determined that the tumor had only shrunk by a little over a half and I did not have a complete pathological response.  The great news is, by the tumor shrinking, I was able to undergo a skin and nipple sparing mastectomy.  My girls look better than ever and I am only halfway through the expansion.

    The entire process is very scary, and I dealt with many emotions while I lied in bed day after day.  You will be through it soon, even though it feels like it may never end.  Mentally, I am stronger today than ever.  Physically, I am about 80% but getting stronger every day.  Hang in there...you can do this.

  • placid44
    placid44 Member Posts: 497
    edited November 2012

    Thanks so much to you both! Fingers crossed.

  • QueenKong
    QueenKong Member Posts: 154
    edited December 2012

    Hi, It's the OP. 

    After my 5th chemo treatment which was changed from Taxol to Abraxane, I was sick (sinus infection, laryngitis, etc.) My symptoms weren't addressed by the new "team" of PA's that had taken over when my oncologist left Roswell. I ended up hospitalized twice. Once at the local hospital and the second time I was admited for 8 days to Roswell with pneumonia. Pneumonia is worse than chemo. My chemo is now delayed because of it as I am still recovering. 

    The good news is that I had an MRI and my tumor has dissipated to the point that it is no longer visible in the MRI imaging or palatable.

    I fled Roswell as soon as I could and am now in NYC. I am going to have surgery at Weill Cornell on Friday and depending on the pathology of my tumor, we'll decide what will happen next. Likely, back for more chemo and then radation. They were going to see what came out of the Oncology convention in San Antonio last week. 

    I'm still weakish, but getting stronger everyday.  

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