Is chemo working?

CaNatalie
CaNatalie Member Posts: 70

Hi all,

I am just starting to really stress here! I was dx 8/31/07 IDC triple negative 2.1 by 2 cm. I decided to do chemo first and then surgery to ensure my tumor responded to the chemo. I have had three treatments of taxotere and carboplatin and wonder if it is even affecting my tumor. I have lost my hair and my periods so I know it's affecting something.  Part of the problem is after my biopsy the area where my tumor is swelled and felt much larger than the MRI reported size. At my last MD visit she said it felt "less pronounced". But how do I know that is not just the swelling subsiding? Being triple negative puts so much emphasis on finding the right chemo regimen.  Should I be feeling a difference by now?

My main question is....for those who did chemo could you feel a difference in your lump and if so after how many treatments? Any info or input would be much appreciated.

Thanks,

Natalie

Comments

  • Sadie-Rose
    Sadie-Rose Member Posts: 222
    edited December 2007

    Hi CaNatalie,

    I had a sentinel node biopsy first and then I did chemo therapy so we could note which cocktails were working on my tumor. I had three rounds of AC and my tumor did not change size. We had checked its dimensions by a MRI scan. We changed my cocktail to T and Carboplatin and the tumor shrunk enough to tell the chemo therapy was working. My surgeon had hoped it might disappear before surgery, but it didn't shrink that much. My lumpectomy was larger than we had hoped. I don't remember it changing much before surgery. I worried that the chemo therapy didn't do enough. My surgeon said it did enough to show that it was working. I am not three years out from treatment and all current screens are coming by good.

    Sadie

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited December 2007

    Hi,

    My first bc site was in my right breast.  I had a large 7mm tumor that was treated with ACT.  First chemo no response, 2nd shrunk 50%, 3rd grow and by 4th cover my whole breast. The orginial site died and it moved to bottom half of breast.  1st mast surgery 25/27 notes positive.

    My bc was so aggressive I could tell the doctors when it was growing and when chemo was working. (And I also could tell when it went to other breast.)  I ran a high fever the night I got the 50% reduction. My breast was smaller the next morning.

    For me this was the first sign I was going to be chemo resistant. And 7 different chemos and 25 tx it still does not work except on the second tx of the new drug.

    Living in hope,

    Flalady

  • CaNatalie
    CaNatalie Member Posts: 70
    edited December 2007

    Hi Sadie and Flalady,

    Thanks for the responses. It helps keep me calm to hear your experiences. Flalady- what was the new drug in the second tx?

    Thanks again,

    Natalie

  • Negative3Grade3
    Negative3Grade3 Member Posts: 111
    edited December 2007

    Natalie,

    I had a similar scenario with yours.  My tumor was clinically assessed as 3x4 cm but the MRI measured it as 1.8 x 1.8 x 1.9 cm which was close to the US and mammogram (there was a lot of inflammation and internal necrosis due to the high grade).  After 3 treatments of AC, the oncologist and the surgeon couldn't feel a thing, so clinically they said there was nothing left.  I requested a mid-treatment MRI using as an argument that the tumor was rather small to begin with and there was a lot of inflammation when it was felt, and I shared with them some of the research on MRI that is being done at UCSF in addition to what I had found out from Sadie and others in the network.  The response that I got is that usually they go with the clinical evidence (palpation) unless one is interested in using MRI for research (like UCSF does).  The oncologist, though, did agree to order one and the insurance covered it. The tumor had shrunk 1.2 x 0.8 x 0.7 but it was still there.  I'm now done with AC and have moved to taxotere (second dosage out of four due this coming Wedensday).  I hope that by the time I finish some further reduction may take place (post-treatment MRI to be scheduled soon).      

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited December 2007

    Natalie,

    My second set of chemos were: Avastan, Carboplatinum, Gemzar

    Than I went to MD Anderson Houston did trial for Aroplatinum alone.

    FlaLady

  • CaNatalie
    CaNatalie Member Posts: 70
    edited December 2007

    Hello,

    I saw my onc yesterday and she said that when I first came in my lump felt like 4-5 cm and now it feels like 1-2 cm. I should be so excited yet instead I feel skeptical. Is this normal? I can't even judge for myself anymore due to the fact that I feel like I have become a hypochondriac who is losing their mind. When my onc asked if I felt a difference I told her I didn't know because I have become to emotionally attached to it. She paused and then we both had a good laugh about how incredibly bizarre that sounded.

    My next big hurdle is coming up this Friday. Last August when I did my initial pet I had two nonspecific lesions on my lungs (one was 4mm and the other 5mm). They think they are scarring from past infections (I had pneumonia) but ordered a follow up in 3 months to ensure they are not mets. Well....here I am 3 months later and going in for the CT. I am so nervous. I can't eat. I cry at the drop of the hat. I was doing so well and now I am just a bundle of nerves.

    Any words of wisdom or advice I would love to hear.

    Thanks,

    Natalie

  • Sadie-Rose
    Sadie-Rose Member Posts: 222
    edited December 2007

    Natalie,

    I don't have any wise words or advise.  I just know what you are going through is sooo normal.  When I was in treatment I was given a season's worth of the West Wing series.  I found reading for enjoyment just didn't take my mind off of my thoughts and concerns, but West Wing did.  We also watched comedies. 

    I did yoga, imagery and relaxation tapes.  One trick a friend taught me was to play music as you fall asleep.  Then when you need to relax during the day, play the tape.  The body remembers the relaxed feeling of fallin asleep and can help you relax during the day.  Just don't play the tape in the car!Foot in mouth

  • Jodian72
    Jodian72 Member Posts: 109
    edited December 2007

    Hi. I will just put in my two cents here. I started chemo on 11/13 and just had my second round yesterday. I go every three weeks for treatment. I am doing the 'AC' chemo right now. Two weeks after the first chemo my onc said that my tumor was 'softer'. I know I'm feeling much better. The pain is certainly decreased. I can get around much better now and seem to have more energy. I'm so positive it's working. I also feel like I can sometimes feel it and then I mentally talk to the 'drugs' and say, "Kill it, kill it, kill it." I know that might sound kind of morbid, but we do what we can to keep our sanity and positive attitude.

    Good luck to you & cheers, Jodi

  • CaNatalie
    CaNatalie Member Posts: 70
    edited December 2007

    Hi ladies,

    Thanks for the words of support. They had to re-schedule my CT to next Friday. Yuck....more waiting!

    Jodi- I read some of your posts...that is wonderful news about the baby doing well and the chemo working. I was laughing when I read the "kill it, kill it, kill it", part because I say the same thing! I actually look forward to chemo because it feels like the most proactive thing I can be doing.

    Thanks again for the lift Jodi, Sadie and Fla!

    Natalie

  • linda447
    linda447 Member Posts: 6
    edited December 2007

    Hi Natalie

    I just wanted to say that i've been out or treatments since October 2006......triple negative double mastectomy and doing just fine...Hope this helps.....Best of luck on Friday

    Linda

  • Negative3Grade3
    Negative3Grade3 Member Posts: 111
    edited December 2007

    Natalie,

    I think you should be very excited that the tumor is responding.  This is great.  See if your oncologist's would allow you to do an MRI where you could easily see how much it has shrunk for your own morale booster.

    As for the CT scan, don't worry for the time being.  Think positively, although I know that sometimes it is hard...I recall that I when I drove myself to do my PET scan at 6:15 a.m. since it was the only slot available, I kept saying to myself, I'm glad I live 5 minutes away and it is a short drive.  I had images of me crashing into another car (thank goodness not many cars were around at 6:00 a.m.! in my small town); and when I was actually taking the test, I thought they could see my heart leaping outLaughing.  You'll be fine, you'll see.  The good thing is that you're having a strong protocol and it seems to be responding very well so far, so that is the news you want to focus on.

  • twink
    twink Member Posts: 1,574
    edited December 2007

    Natalie,

    I was diagnosed last January, IDC, triple neg., 3.5 cm (est).  I started with AC with little effect.  The tumor seemed to become less 'dense' according to my surgeon, but dimension-wise, it stayed roughly the same size.  After one Taxotere, I could feel a difference but by then I'd decided to proceed with a bilateral mastectomy.  I carried on with Taxotere and had my surgery.  The tumor was negligible at the point of surgery (path report measured it at less than 2 mm).  By then, though I had three positive nodes (post surgery path report showed micro mets).  I followed surgery with a full axillary node dissection and a course of more chemo -- carboplatin this time.  I have no idea whether the carboplatin whacked any remaining cancer cells and was convinced (by the rad oncs) to cap this whole year off with 33 radiation treatments to the area.  So...AC, Taxotere, bilateral mastectomy, axillary node dissection, Carboplatin, Radiation...  I think I've done what I can.

    Good luck to you.

  • CaNatalie
    CaNatalie Member Posts: 70
    edited December 2007

    Hi all,

    Thanks for the encouraging words, it really does help. I know I am still in the beginning of this whole process so sometimes it is hard to see the light at the end of the tunnel. This journey just seems so long and never ending! My CT is in three days so I am trying to stay busy and preoccupied until then. I guess the rest of my life will be filled with tests so I better figure a healthy way to cope. This website is definitely a good start. As well as Sadies ideas of relaxing music.

    Neg3- I like your idea about the "morale booster" so I will talk to my onc next time about getting one set up.

    Thanks again for chiming in and I will hopefully be reporting back with good news from my CT!

    Natalie

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