Chemo or No Chemo?

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  • 12345678
    12345678 Member Posts: 81
    edited April 2012

    Hi, Mary!  I'm refering to a number of clinics in Germany that use alternative treatments not allowed here in the US, as the only FDA-approved "standard of care" treatments are surgery, chemo and radiation.  You may remember hearing of Farrah Fawcett's last-ditch efforts in Germany after her anal cancer returned following chemo treatments here in the US that did not work for her.  Unfortunately, her cancer was too far advanced when she got there, so they really couldn't help her.  But, she went to a place called University Clinic, I think, in Frankfurt. There are many such clinics there.  Glad to hear you seem to be recovering well after all your treatments!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    Kathy, at 8 and a half months past diagnosis, you've pretty much already decided against doing the chemo by default.

    There are studies showing a significant decline in the results if adjuvant chemo is started more than 12 weeks after surgery.  I don't understand why you are in the position of making this decision so long after diagnosis, but I suspect that if your surgery was delayed enough that you are still near that 12 week post surgery window, whatever considerations caused the delay in the surgery may affect the decision about chemo as well. 

  • 12345678
    12345678 Member Posts: 81
    edited April 2012

    PatMom - To clarify, I was part of an NIH, national clinical trial from the date of diagnosis last July to the date of my surgery in January, taking anastrazole to reduce the size of the tumor. I am only 7 weeks out now from surgery and still on the hormone therapy.  My understanding is there is an approximate 12-week window in which to start an effective chemotherapy regime.  Both my SO and MO are on top of this. My MO recommended a "second opinion" which is coming up next week; and then I will have to decide whether or not to go with his chemo recommendations at that time. I know it's confusing as it isn't typical due to the clinical trial taking so long. Hope this helps! 

  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited March 2012

    Nope, no exageration :)  I did all the hair prep, hair cuts from most of the way down my back to a short boy cut.  I started chemo at Thanksgiving, and it was so slow to fall out (no cold caps) I just decided to see if I could keep it for Christmas with pictures with my baby :)  I know, vanity, but it happens.  Then it became a battle between me(my hair) and the taxol.. I won!  Woot.  FAC is much more difficult for me.  BUT the emend has made it more tolerable.  I have a buddy I met on the forums (named Phyllis) and she is on the same program as I 4 days ahead of me.  Its really nice to talk to someone who is on the same timing as you.  Sh lives in the southwest somewhere and I'm in KY but its great to chat about our doctors and stuff.  We have the same MDA onc :)  For both of us, the first week is tough but its better with emend.  She has been getting the neulasta shots and she is going to see if during this round she feels better faster without it, without sacrificing her WBC.  I haven't had the neulasta shots, been ok so far.  Again, whatever you decide I'm here to make the journey with you.  I hope that you find a treatment you are comfortable with.  Being only 28 , 27 at DX with one lil man who needs me.  The 6 mo of chemo, multiple surgery and rads are worth and added time I can get.  I deal with all the other crap when it comes.  I also have an amazing support network of people who travel to help us and our son.  We transplanted to KY 2 years ago.  Keep us updated with the info from your 2nd opinion MO :)

  • 12345678
    12345678 Member Posts: 81
    edited April 2012

    Also, both the SO and the MO (and I) were extremely surprised to find 10 more out of 10 axillary nodes show up and test positive during the mastectomy on Jan. 30th, even after a CT Scan and Breast MRI showed nothing.

  • 12345678
    12345678 Member Posts: 81
    edited April 2012

    MiniMacsMom - I just get more impressed the more I read.  What a trooper you are!  I'm sure your son will one day realize what courageous sacrifices you made for him.  What a legacy!  Where in KY did you relocate and from where? You can send a Private Message if you want to keep it private.

  • Momine
    Momine Member Posts: 7,859
    edited March 2012

    LuvR, that is a good point about there being meds for almost all the SEs, except fatigue. But even the fatigue can be alleviated somewhat with regular exercise, according to one study. I walked daily through chemo, for at least 45 minutes, but often much longer. I also had some tiny free weights that I did a little upper body work with every day. It helped the fatigue some and it definitely helped my mental state. My mother started going to the gym during chemo, at 67 years old, and ended chemo in the best shape of her life.

    I took an iron and vitamin syrup and that also helped some in keeping my red blood counts close to normal range. I got neulasta all the way through for the white blood counts, and although my blood counts over all were low, they were usually only slightly below normal range or else on the low end of normal.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012
    Kathy ~ I'm wondering if the reason why those 10 nodes didn't show up on the scans....was because you are on the AI's...making the cancer cells less "active"?   It will be interesting what information comes out of the results of the trial you are in. 
  • 12345678
    12345678 Member Posts: 81
    edited April 2012

    Susan - Exactly! That idea was even proposed by my SO -- that it's very likely the Arimidex shrunk the nodes so as not to show up on any scans or even with the blue dye during the SNB I had done in December. Good news, right?



    My you are all such Super Sleuths putting this all together!

  • 12345678
    12345678 Member Posts: 81
    edited April 2012

    I did the clinical trial because the SO said it was either 4+ mos of anastrazole to shrink the tumor prior to surgery or immediate chemo.  We both thought it was a "no brainer".  And, luckily, it did shrink my tumor in half.  They watch you closely, especially in the first two weeks and take a second biopsy to prove it is shrinking before they let you chance being on a trial that long without a treatment that is known to work, fortunately.

    As for the trial, I'm sure you already know you can easily look it up on clinicaltrials.gov.  It is trial Z1031.  Unfortunately, there are no study results posted and are not expected until August 2019. 

    Also, the doc told me it seems to work much better on IDC than ILC.  Many of the IDC's had it shrink to almost nothing, so it definitely looks promising...and no terrible side effects!!

    Thanks for asking! 

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2012

    Kathy - I know you are scared of chemo, but please listen to your doctors not others promoting alternatives - there is no proof they work and in your situation with so many positive nodes, you really need professional advice. There's no reason why you can't do complementary things and chemo and be healthy through out your journey.

  • nfranklin
    nfranklin Member Posts: 119
    edited April 2012

    How long after mx did anyone begain their chemo?

  • jancie
    jancie Member Posts: 2,631
    edited April 2012

    Ritalin works for fatigue!  I was sleeping 12-14 hours a day until the doctor gave me some ritalin.  Didn't mean I got anything done - just that I started to sleep only 8 hours a day.

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited April 2012

    Nfranklin - I started chemo 9 weeks after my BMX. 

  • nfranklin
    nfranklin Member Posts: 119
    edited April 2012
  • 12345678
    12345678 Member Posts: 81
    edited April 2012

    mfranklin - Both my SO and my MO suggest that chemo treatments have about a 12-wk window for starting after MX to be most effective. They usually wait until you are healed after MX and have the heart and no comorbidity issues before administering, but they also like to do it sooner rather than later within that 3-month window.  Hope this helps!  Your doctor should be able to tell you for sure in your particular case.  

  • camillegal
    camillegal Member Posts: 16,882
    edited April 2012

    Of course I am always impressed by the knowlegde that these topics amass. It's like all Drs. talking.  But I'm going to put my 2cents in anyway--but like I say talk to me like i'm a 4 yr. old and that's how I explain things.

    OK I had chemo 4 months before surgery and then picked up again after for almost 2 yrs, rads and herceptin--I would definitely go the chemo route--It has SE but nausea was not one, like it used to be and it all very doable--and I'm in my 60's so I would without a doubt do the chemo route. (with a port) LOL I would rather have the port wine but whatever.

  • calamtykel
    calamtykel Member Posts: 1,187
    edited April 2012

     I'm extremely chemically sensitive - I am very sensitive to all medications as well. I did fine on chemo.  the only issue I had with nausea was the first time and that's because I did not take my anti-nausea meds.  I did not think I needed them as I got meds through my IV.  STUPID.  Never made that mistake again.  

    It's not a walk in the park for sure, but it's do-able!

  • financegirl
    financegirl Member Posts: 114
    edited April 2012

    I had a LOT of node involvement and I am also stage IIIc.   Chemo is never a walk in the park but I found it manageable.  I had 4 DD A/C and 4 DD Taxotere infusions.  I never looked at it as to how it'd affect me.  Instead I concentrated on getting thru it. The A/C took my hair and caused nausea but when I called the doctor I was prescribed Zofran and Decadron which helped tremendously.  Taxotere was much rougher IMO.  I had been given a pretty high dosage and after my first infusion my hands swelled twice their size, and cracked and bled.   The doctor cancelled and rescheduled the next infusion for a week later and dropped down the dosage slightly.  I lost all my fingernails from taxotere but gee, the nails grew back much faster than the hair!.  Even as bad as the taxotere was, decadron took care of most of the side effects from it for the last 3 chemo sessions.  

    I am now on Arimidex which causes bone/joint pain.   I choose to look at it as the side effects mean the drugs/pill are working.  I am in the testing phase to see if it all worked and so far so good.  I had bone scan and colonoscopy and both came back clean.  The mammo/ultrasound are scheduled for the end of this month. 

    Hoping you find the answers you are looking for. 

  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited April 2012

    anyone else concerned with what happened to kathy. She just disapeared... we had started to chat via pm. Now i am worried since she asked what city i lived in. Do you think this was for real.

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited April 2012

    It looks like she changed her screen name and deleted her posts.  Nothing more we can do.  I do think it was real but we'll never know for sure.

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