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Red Devil survivors, please

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wrsmith2x
wrsmith2x Member Posts: 127

This is my second breast cancer, a recurrence, in 4 years.  My first was treated with Taxotere and Cytoxan every 3 weeks for 4 times.  Because the tumor returned, my age and the size, grade and receptor status they are recommending the Red Devil and Taxol this time....eight times for a total of 16 weeks.

First of all I'm pissed.  Because I did Lumpectomy, chemo and rads last time my chances of recurrence were supposed to be around 7%.  This time they tell me without chemo the chances of recurrence is around 30%....even if I have the BMX I am planning on having.  WTF?  I didn't even want chemo the first time.  Chemo is poison and the more I read about it the more I hate it.  And now they want me to do the worst one there is!

Talk to me ladies.  Anyone who has had the Red Devil that has lived for a while past it.....5 years or more?  Any long term side effects?  What about during it?  How did that go?

I am understandbly Verklempt!

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  • sewingnut
    sewingnut Member Posts: 475
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    My Aunt is an 18yr+ surviver that did AC tx. She had 13 of 16 positive nodes. She does have a bundle block on her heart and is on heart meds. Her cardiologist is saying it was the Adriamycin. She had a very fast growing cancer. Opted for MX, no reconstruction. She is living her life and enjoying all her grandkids.

  • granuaile
    granuaile Member Posts: 24
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    Hi WR - not a longtime survivor, but I did A/C, and then Taxol/Herceptin last Spring/Summer. I have to tell you, I had a really hard time with the A/C (blurry vision, jitters, everything tasted bad, nausea, exhaustion), and have neuropathy (fingers and toes) from the Taxol. It seems like a really potent combination, but I'd definitely be looking at mitigating SEs. I'm so sorry to hear about your recurrence. I'm just waiting for it to happen too, being Stage and Grade 3, and Her2 positive - just had some enlarged chest nodes show up, so that could be because of the cold I have, or a regional recurrence! I'm sure plenty of others will be along to share their experiences, and I absolutely will be thinking about you.

  • thenewme
    thenewme Member Posts: 174
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    Hi WrSmith, it sucks that you're going through this again!   I see your tagline says "unsure of hormonal activity."  Does that mean they're not sure whether it's TN this time?  I had Adriamycin-combination chemo (AC/T) about 3 years ago and am doing fine.  The AC combination was tough, and there's no doubt that it really is poison, but that's why it's effective.  My best advice is to be very proactive with side effects and to ask for extra fluids the day after, even if you think you're drinking a lot!  Don't wait until you feel nausea before you take the anti-nausea meds.  At least for the first few days, take the meds faithfully and consistently.  I didn't at first, and it was much harder to rein in after I felt nauseated.  They'll probably do a MUGA heart scan to check your cardiac function before you start, just to monitor.   Especially for young and otherwise healthy patients with normal heart function, the side effects are mostly temporary.  As of now, I don't know of any lasting effects I had from the Adriamycin.  Did you have a lot of bone pain before with Taxotere?  I did, and needed pain meds to deal with that, and I had some pretty severe neuropathy, but it's all pretty much resolved now. 

    I hate that you're in this situation, but it sounds like you have a good plan.  You can do this.  When do you start?  Please let us know how you're doing!  

  • BelaT
    BelaT Member Posts: 44
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    I did one Taxotere and cytoxin and did numbers on my colons - now they want to change to adriamycin and I am scared

  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793
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    I did SIX of each (AC+T) as part of a trial and I am fine.  Extremely minor symptoms which I would not have if I had done only four.  It was not fun, but it was not the end of the world either.

    I was extremely fit going in, and was able to exercise throughout.  By "exercise", I was able to cycle every weekend, but not at the pace I normally would.  I ate normally too, although craved salty food at the end of AC.

    I did take adidopholous tables throughout, and I think they helped with digestion.  I was also given Neulasta shots, so never got neutropenia, nor did I get any viruses.

    This was two years ago, and I am more than fine now.  I would do it again, if I needed to.

    Good luck!!  I looked upon chemo as my friend in extirpating the beast.  I still think that.

    As for hair loss, I was overdue for a new look anyway.  A bit drastic, but LOVE the way I look now.

    And there is nothing I can't do now that I could do prior to diagnosis.  NOTHING. - Claire

  • BelaT
    BelaT Member Posts: 44
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    Thanks Clare for this post. Its good to hear from people who has been thro. I will keep you guys in loop.

    Bela 

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
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    Almost 5 years since I volunteered for a Clinical Trial, and drew the "A/C" card.  Worst SE for me was the crash after the 3 days of steroids.  Buzz cut my hair, so losing it wasn't a big deal - made quite a canvas for Face Paint crayons ( it was summer, and yes, the ones I had did drip in the sweat)- not to make light of it, but I was surprised it wasn't nearly as bad as I feared. Still wear my favorite canvas bucket hat: No Hair Day even tho it's grown back just as it was b4 - thick & curly.

    Mugascan b4 starting, blood tests b4 every infusion (dose dense, every 2 weeks), and Neulasta kept the white blood cells reasonably happy.

    Hoping anyone facing the Red Devil has a good ride too....any other Winnie-the-Pooh fans here, who remember Christopher Robin telling Pooh: " Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think."  A.A. Milne

  • thenewme
    thenewme Member Posts: 174
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    LOL, I'd love to say I'm in fantastic shape like Claire but.....umm..... nope!  Rest assured, though, chemo is doable even if you're not, and even if working out during chemo would NEVER have crossed my mind!  Laughing

    Sunflowers, hahahaa - I'd have loved to see your bald head all decorated!  Got pictures?  

  • my2boys
    my2boys Member Posts: 124
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    It hasn't been 5 years for me, but I was diagnosed in 2008 and went through 6 treatments of TCH only to have recurrence in early 2010.  I was immediately put on A/C TH.  4 A/C and then 12 weekly Taxol with Herceptin every third week.  I was also on Tykerb with the Herceptin.  I have to say that I found the A/C TH much easier to tolerate than the TCH.  I had much more energy and exercised my way right through it.  I didn't experience the fatigue and shortness of breath that I felt with TCH.  Other than a little nausea and a lot of dry mouth, nothing to complain about.  My heart is checked every three months and the cardiologist says it looks just fine.  I'm on Herceptin and Arimidex now and I feel great!

    I never thought of the chemo as poison, just strong medicine.  If I had never had it, I might not be here today.

  • Mardibra
    Mardibra Member Posts: 194
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    Just finished 4 rounds of AC every two weeks.  Moving onto Taxol tomorrow.  AC wasnt all that bad for me.  Days 4, 5, and 6 fatigue was the worst but I managed to work through the whole process.  Totally doable.

  • Ellie1959
    Ellie1959 Member Posts: 73
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    I did TAC six years ago too with no residual heart damage. I've had multiple surgeries and have had tests on my heart with no issues. No chemo is fun but I can't pinpoint any issues on it going forward - take care, Ellie

  • CharB22
    CharB22 Member Posts: 87
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    Thank you all for your words of encouragement. I'm about to have AC #2 tomorrow, then 4 T. I'm an otherwise healthy 47 yo with only seasonal allergies. So I'm hoping to come out of this with no long term effects. Thanks!

  • reesie
    reesie Member Posts: 413
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    It's only been a year for me (and no problems) but you should consider that Adriamycin is one of the oldest chemos around. So there would be plenty of people with long term experience with it with no problems.

  • Curlylocks
    Curlylocks Member Posts: 61
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    Sorry you have had a reoccurance...that truly sucks!

     I am a 6 1/2 year bc survivor....did 4 a/c in Dec 2005...I feel amazingly well..started running 1.5 years ago (have never run in my life)...can now run 5km...no problems with breathing etc.

     A/C is a hard chemo but the poision has worked and kept me here for my family and friends.  I felt extremely tired and slept like I was in hibernation while on a/c.

     All the best!

    Michele

  • vivirasselena
    vivirasselena Member Posts: 51
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    RIght here, dude!  Red devil survivor

  • amyK
    amyK Member Posts: 7
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    Hi there,

    What a bummer! So sorry you're going through this a second time! It hasn't been as long for me as you're asking, but I did A/C and Taxol. I was diagnosed in October 2010 right after running my first half-marathon. I had a mastectomy followed by chemo and rads. It was a long hard winter and there were definitely days when I didn't do much, but I managed to stay relatively active. By summer, while on rads, I was swimming, running, and biking, and feeling not too shabby. (I documented my experience on my blog and in videos, here's a link if you're interested.) And I ran the same half-marathon this past October, improving my time by about 12 minutes! It sucks but you can get through it.

    Best wishes,

    Amy

  • Titan
    Titan Member Posts: 1,313
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    Hey wrsmith..I'm a 3 year survivor of Adriamycin (almost)..seriously don't let it freak you out...it really wasn't that bad...The reason it has a bad rep is because it is a strong drug!  Don't you want that??? It wasn't bad at all...Taxol bothered me more because of the bone aches...adriamycin was more of a quirky type feeling...no body aches.

  • wrsmith2x
    wrsmith2x Member Posts: 127
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    Good news!  They have backed off the chemo recommendation for now.  They think that maybe this might be a new primary....I don't think so but what do I know....and if that is the caase then the last chemo did its job.  They won't say chemo unless they find lymph node involvement during BMX.

    Personally I don't see how it can NOT be a recurrence....it is in same place, it is same ER, PR, Her2 status, it is sam type cancer....DUH!  Whatever.  I'm just glad no chemo, at least for now!  WOOT!

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
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    Good news - have you ever had the Oncotype DX test done?  Don't know if it can yet be done with a 3N?     Here's hoping the BMX does all you need!  Good luck.

  • TAPPY
    TAPPY Member Posts: 39
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    I will Ditto what Titan said..... I had fatigue and nasuea with AC - but it was managable.  I even worked part time.  The main thing is - stay well and stay away from sick people at all cost.  Your white cell count and immunity taking a beat with this.  I did not go grocery shopping ot Christmas shopping and avoided large crowds.  It is a pain, but they can manage the side effects.

    To me Taxo was worse because of the bone pain...but everyone is so different.

  • ruthbru
    ruthbru Member Posts: 46,930
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    I did AC almost 5 years ago. I did dose dense with Neulasta shots (so I didn't really worry about infections etc.) I felt like I had a mild case of the flu the whole time; but was able to work full time, kept up with light exercise, went to all DS's school events, a family reunion....everything that I had to do and most of the things I wanted to do too. I am fine now. No lasting SEs other than a slightly low platelet count. 

    If you do end up needing chemo; remember that chemo is NOT the enemy. The chemo drugs are working FOR you, like Navy Seals, killing the real enemy.... terrorist cancer cells.

  • drwendy
    drwendy Member Posts: 3
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    I'd be scared NOT to do chemo...I feel like it's my best weapon.  I'm in the middle of every 3 week Adria/cytoxan/taxotere treatment, just finished 4/6 treatments.  I ran and walked half of a marathon 5 days after treatment 3 with my oncologist's blessing.  I'm not fast, but I did it and Disney gave me a medal anyway!  I'm tired and sick sometimes but I work full time and it's manageable.  If they want to do chemo, LET THEM...do you really want to hear from this AGAIN?

  • diana50
    diana50 Member Posts: 253
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    i am 10 years out with TAC combination.  it has worked great for me.  i believe in chemo and so far so good.  i was in a clinical trial back in 2002 because of 10 encased lymph nodes...full of cancer.  the drugs often times do their job.  tough but for me; i think worth it.  red devil has been around for a long time and has proved itself to be a cancer killer.  hang in there

  • PlantLover
    PlantLover Member Posts: 132
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    Oh don't we all wish that there was a silver bullet?  Don't we all wish chemo would forever kill the cancer and we would NEVER hear from it again? Don't we all know that, unfortunately, it's not that simple?

    wrsmith2x ... I hope all goes as well as possible with your BMX.  It's all one day at the time, as you know.  Enjoy your good news! 
  • ruthbru
    ruthbru Member Posts: 46,930
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    This is how I look at it: I have done all the recommended treatments and made all the recommended lifestyle changes. This has greatly reduced my chances of ever having to deal with cancer again. Of course, it does not reduce my risk of recurrence down to zero, just tips the odds in my favor. But if it ever comes back, then it is fate.....not something that I had control of. It gives me quite a bit of peace of mind to know that I will never have to say, "If only I would have ______ (fill in the blank), maybe this wouldn't be happening."
  • bak94
    bak94 Member Posts: 652
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    I did ac 9 years ago and it was pretty easy on me. I did it again this time around and it was a bit more difficult and I had a heart function test with each treatment and it stayed the same all through out. I found ac a bit eadsier than the taxols! Glad you don't have to do chemo. but I don't think that ac is as bad as some other chemos, at least for me. I know we all handle them diffferently.

  • fredntan
    fredntan Member Posts: 237
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    I did AC dd x 4, now I have 4 taxols left.



    The taxol is a breeze for me. Vision is a little off. Had very little tingling. I actually have more energy now than ever. I think its my antidepressant-celebrex? I walk fast daily.



    The A/C wasn't as easy. But thinking back, I think a lot of my problems were caused by my anxious attitude. I was horribly constipated. Had no appetite. Wouldn't eat for days. Lost 25 lbs between the surgery and Ac. But I had already lost my appetite before the ac. I think I was so scared. And depressed. Didn't start the antidepressant until after Ac. I had more mouth issues. Soreness.

    Wish I had started probiotic much sooner. I have championship bowels now. Never thought I could be so excited about crap.



    Most of my early issues were made worse by my im so scared attitude. My doc too said 30%she chance of reaccurance. (My phone adds strange words sometime)



    I wish I had gotten one of those cds to listen to about guided imagery.heard there is a good one by bella Ruth?



    Im going to cut that % down by running and eating better

  • Sassa
    Sassa Member Posts: 98
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    I did 4 AC + 1 year herceptin.  I am 5 years out (5 year CT/PET scan next week).

    I found the effects of the AC to be cumulative.  Each chemo took me a while longer to bounce back from. 

    While I did not have a problem with funny tastes in my mouth, I did lose my appetite through the AC and herceptin.  I lost 60 lbs because I forced myself to eat well, but didn't eat much. I needed to lose the weight in any case.

    I have to say that 5 years later, I am probably in the best physical condition I have been in for years.  I started exercising during chemo and have kept it up.

  • Jojobeans31
    Jojobeans31 Member Posts: 1
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    I am almost 6 years out since having the Red Devil. Doc gave me same dose. Had mastectomy 16 rounds and no recurrence and I am a triple negative. Have some stomach issues but that's the worst I can report.

  • lrscott2649
    lrscott2649 Member Posts: 3
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    Red devil was rough. I had fluids giving to me following each treatment and I still got so sick were I had to go to the emergency room after each treatment. It was treacherous. I have had severe migraines for months now. Constant contraction in chest.