To Continue Chemo or Not (x posted)

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Lifeisbeautiful
Lifeisbeautiful Member Posts: 36

I had my first AC on January 8th and have had spiraling troubles ever since.  The last of which I was treated for what they thought was a blood clot in my leg last Friday.  Thankfully that wasn't what caused my leg to turn red and swell up and turn hot.  It's still mildly swollen but getting better.

My second treatment was supposed to be on the 22nd but I opted out because of how horrible the side effects of the AC were.  I went in expecting the worst and got dealt more than that.  Nothing could have prepared me for what that stuff did to me.  I'm not naive and I'm not a lightweight either.  That stuff knocked me on my butt and I could NOT get up.  

 Every time I try to explain it all to my oncologist he either doesn't listen or tells me it's all normal.  I find that hard to believe.  Catatonic is normal?  Anyway, I won't go into all the details of the side effects but I'm still dealing with them DAILY.  

Now, I have a nurse that calls me once or twice a week.  They're really sticking the pressure to me now.  I saw my regular doctor last week who wants me to see a local oncologist and I'm trying to get in to him, having my files transferred.  I asked my current oncologist if there was another treatment option besides the adriamycin and he said no.  He won't give me the cytox without it because "there's no point in half treatment because you set yourself up for failure".  So every woman gets adriamycin?  What if you can't tolerate it?  Then what?  He dodges and keeps telling me "you did fine".  NO I DIDN'T!  And why won't they listen to me??  My husband was scared to death that I wouldn't come out of it.  

The nurse tried to tell me that my blood clot scare and nightly flu symptoms aren't related to the chemo and that if I don't complete my treatment that there's a 100% chance the cancer will come back and kill me.  ONE HUNDRED PERCENT?  I never knew anything in life was 100%.  She gets frustrated with me and fetches the oncologist.  He gets on the phone and says 70% chance it comes back and he doesn't think my problem is seeing an oncologist closer to home, he thinks I just need to come back up there and get treatment.  

Hummm.  I feel more and more like a statistic every single time I talk to these people.  Each meeting, whether it be on the phone or in the office I'm left in tears.  Absolute shambles.  No one listens to me!   This is the same onc that told me in November that he could cure me.  Then it went to 30% chance of recurrance with chemo to 50% chance without to 70% chance without.  I hate mind games.  I really do.  Oh, and it has medullary features which he says means nothing.  That's not what I've read so I don't know what to believe anymore.  I'm thinking I need to see this other oncologist.  There has to be something that can be done with the adriamycin or an alternate.  I hate to sound so ramblish and all over the map.  Forgive me.

What would you do?  

Comments

  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited February 2010

    Find an onc that is willing to use platinum drugs.  There is a lot of evidence that they are the best for triple negative.  My first time with bc, I was Her2+ so did carboplatin (one of the platinums), taxotere and herceptin.  With my recurrence, I am TN so am doing cisplatin (another platinum) and gemzar along with zometa.  There are a lot of combinations out there and plenty to try other than adriamycin.  Dr. Dennis Slamon -- famous for Herceptin -- is so opposed to adriamycin under almost any conditions that UCLA doesn't even use it any more for breast cancer since he is the lead researcher there.

  • js37
    js37 Member Posts: 77
    edited February 2010

    fire him.  hands down.  my first onco was like - always using scare tactics, not listening to me, telling me "not to worry about it"  i have a new onco that i love.  listenst to my concerns, has me on a treatment that i'm doing great with and that works for me & that we both believe in, doesn't dismiss side effects...truly, you need to have an onco that makes you feel POSITIVE.  i think that is so important, mental health is a huge part of this.

     fire him. just tell him the next time they call that you are changing doctor's and someone will be in touch about your records, then stop answering the calls.  i didn't start chemo until 2 & a half months after my initial diagnosis (and almost 2 months after my lumpectomy). he's obviously using scare tactics with you with those recurrence rates - no doctor should EVER do that.  they shouldn't be doctors, in my humble opinion.  

    try to stay positive.  truly, from personal experience, once you make the decision to change docs (and i did before i even found a new one) i felt so much better.  

  • angelsabove
    angelsabove Member Posts: 363
    edited February 2010

    You are NOT rambling.....WE KNOW OUR BODIES.....If it is not doable then I too would be concerned. I did 12 weekly Taxol....Then did the FAC combo....4 of those TRI-WEEKLY.....It is Five fu and Adriamiacin and Cytoxin....think that is right....I DID HAT THE Adriamiacin.....We are all DIFFERENT....Some people have little effects and some have GREAT side effects. I was told 60 to 80% chance of it returning WITHOUT chemo.....and was told Chemo gave me a 30% advantage....I did the math and said OK....... 50/50.....I dont know if that is correct but who knows. 

    I continue to drill in my head (I AM NOT A STATISTIC) which is HARD to do......

    THERE MUST BE MORE OPTIONS....I think that it is VERY important to have a good relationship with Oncologist. Ya know considering we will be with them FOREVER....I would recommend if YOU have doubts about him....GIRL GET ANOTHER ONE.....

    I saw you are 37......I am 36.....PM me if you need to talk.....I have just completed all my treatments as of today......COMPLETED RADIATION......still trying to figure out the NEW ME....REAL NERVOUS TOO.....again FIRE HIM.....

    May God Bless Us All 

  • ruthbru
    ruthbru Member Posts: 57,235
    edited February 2010

    Either make an appointment to talk this out with your oncologist (and bring someone with you for support), or find someone else who will work WITH you (which sounds like a better option from your description); but whatever you do, you do need to act quickly. Good Luck!

  • Nordy
    Nordy Member Posts: 2,106
    edited February 2010

    I would personally get into another oncologist. Because, quite simply, there are other options. Epirubicin is very similar to adriamycin, but with less harsh side effects. I had the 12 weekly Taxols followed by AC x 4 every other week and this regiman nearly obliterated my tumor. (I had my chemo prior to surgery). I think if I had had issues w/the AC, my doc would have tried the epirubicin - they usually give that one w/cytoxin and the 5-fu. PS - I was also 37 when I was diagnosed and am coming up on 5 years here in a couple months... You can totally do this - you just need an onc that is on your side. Hang in there.

  • Lifeisbeautiful
    Lifeisbeautiful Member Posts: 36
    edited February 2010

    I'm going to fight with all I've got tomorrow to get into this other onc ASAP.  If there's something else out there that will be effective, I want it.  If I have to stay with the red devil, then I will, but at least it will be with someone closer to home.  Hopefully he will listen to me and not treat me like another patient coming down the conveyor belt.  At least if I have more serious issues I won't have to drive 3 hours to have myself taken care of.

    God bless and keep all of us safe. 

  • Babyface
    Babyface Member Posts: 91
    edited February 2010

    Omg your post brought back memories(ones I'd rather forget). In Aug 2004 I had been diagnosed with TN metaplastic BC. Surgery was in Sept, and in Nov I began dose dense(every 2 weeks) AC which was to be followed by Taxol. After my 1st AC I was sick...and I dont mean just standard chemo sick, I mean I was throwing up 10-15 times a day from the day I got treatment until about 10 days later...I had to be helped just to walk from room to room. I of course explained all of this to my onc. who Im sure thought I was exxagerating just how bad it was so on I went to AC # 2.....well of course it got worse and I truly understand the almost comatose comment ...I also started developing little blisters on my feet....again told the onc how bad things were, and that I knew there was something wrong....on to AC# 3...now I have huge blisters on my feet and the onc is telling me it has nothing to do with chemo and is wondering"what I've been doing"...hmmmm, lets see,,,lying on the bed, the floor or the couch since I cant do anything else.

     Well I do my last AC...I started throwing up repeatedly while I was being infused.....withing 2 days my hands become bright red, by day 3 so do my feet and legs, by day 4 my hands arms and feet have swollen so much and my hands were unrecognizable as hands.....long story short I ended up on prednisone , I got an apology from my onc. , I became a lab rat for the medical school for my cancer center since I had a"1 in 10,000 toxic reaction to AC", my taxol was cancelled because as my onc said"Im not going to kill you to cure you" and my rads were delayed until the swelling went down(oh and the 10 layers of skin and all my nails that I lost had to improve 1st too).

    I won't bore you with the details of what this all caused long term(lol....no recurrence but nothing could have survived in my body )  but suffice to say...if you know you are having a significantly bad reaction, then scream it at the top of your lungs to your medical team. My onc. was very honest with me in that there were other chemos I could have done had they caught the reaction in time....if you are in fact having a toxic/allergic reaction it is highly unlikely that your medical team has ever dealt with it before and may not recognize some of the signs. I know it was a first for my onc. and he is a well renowned breast specialist in Canada.

  • thenewme
    thenewme Member Posts: 1,611
    edited February 2010

    Oh wow, Lifeisbeautiful - I'm so sorry you're dealing with this! Hopefully by now you've gotten in to see another oncologist!  It sounds like you're not getting any answers to your questions and getting conflicting information from the doctor, which is unacceptable.

    I'm not sure if you'd be eligible for any of the platinum drugs at this stage, but surely they need to be considering what to do differently for you!  Different drug/combo?  Preventive steroids?  Help with side effects? 

    Did they say what DID cause the leg issues?  Did they see you when you were so sick?   It sounds like your reaction was especially extreme.  Whatever you decide, don't let them blow you off. If you have those kinds of reactions, go to the ER if you have to, to make sure they see that you're not exaggerating.  Don't leave until your concerns are addressed.  Talk about it with your husband ahead of time so he can be prepared to fight for you, in case you're not feeling up to a fight.  

    Although I didn't have anything like what you're describing, one thing that helped me was going back in the next day for extra IV fluids.  I thought I was drinking a lot, but the extra IV fluids did wonders, I guess to help flush out the chemo.  It's something you may want to ask about, but definitely get some better answers to the other stuff before you decide how to proceed.

    Hugs to you and please keep us posted!

    Babyface, so sorry for all you've been through, but congratulations on 5 years !  

  • Babyface
    Babyface Member Posts: 91
    edited February 2010

    thenewme

    Thanks for that.....every time I feel sorry for myself, I remind myself that hey its been 5+ years, and things could be a whole lot worse as evidenced by these boardsFrown

  • hope2
    hope2 Member Posts: 73
    edited February 2010

    please see below, alot of tnb gals get tc now instead of tac, the net if full of studies. There is less side effects improved survival rates and less risk to the ticker. i am not a medical professional but this was the chemo i was put on  with the avastin trial for stage 11b and stage 111(a) breast cancer,  i looked up the net when the oncolgist told me and there are lots of studies supporting this.

    Dec. 13, 2005 (San Antonio) - Results from a trial that compared nonanthracycline adjuvant docetaxel/cyclophosphamide (TC) to standard doxorubicin/cyclophosphamide (AC) as adjuvant chemotherapy for women with operable breast cancer show significantly superior disease-free survival and favorable overall survival with the adjuvant TC regimen.

    According to lead author Stephen Jones, MD, who presented the data here at the 28th annual San Antonio Breast Cancer Symposium, these results show that "TC should be considered standard nonanthracycline adjuvant regimen for operable breast cancer."

    These final results were based on a total of 174 events, up from the 105 events reported in the interim analysis in 2003.

    In the study, between June 1997 and December 1999, 1016 patients with operable breast cancer were randomized to receive either standard AC (doxorubicin 60 mg/m2 plus cyclophosphamide 600 mg/m2) or TC (docetaxel 75 mg/m2 plus cyclophosphamide 600 mg/m2). Each regimen was administered intravenously every 21 days for 4 cycles, and given prior to radiation therapy if indicated. All hormone receptor-positive patients received tamoxifen after chemotherapy. Patient and disease characteristics were comparable between the 2 treatment groups. Overall, 71% of cancers were hormone receptor-positive; 48% of patients had node-negative disease, 41% had 1-3 positive nodes, and 11% had 4 or more positive nodes.

    At a median follow-up of 66 months, patients treated with TC had significantly improved disease-free survival compared with the AC-treated patients (86% vs 80%; hazard ratio [HR], 0.67; P = .015) and a favorable overall survival outcome (90% vs 87%, HR, 0.76; P = .13).

    An exploratory analysis that plotted the hazard ratios for disease-free survival of the major subgroups, including age (<50, 50 years or older), hormone-receptor status (ER-negative/PR-negative, ER-positive/PR-positive), and nodal status (negative or positive), showed that the treatment effect is consistent across subgroups, Dr. Jones said.

    Toxicities were different between the 2 treatment arms, with significantly more grade 3 or 4 febrile neutropenia in the TC arm and more grade 3 or 4 nausea and vomiting in the AC arm.

    "This is another study that adds to the evidence that taxanes should be a part of adjuvant therapy," Robert Coleman, MD, FRCP, from Weston Park Hospital in Sheffield, United Kingdom, told Medscape. "This study differs from other adjuvant taxane studies in that it demonstrates that you can omit anthracycline, which is beneficial because anthracyclines are highly toxic and can't be used with Herceptin," he added.

    At the end of the presentation, Dr. Jones reminded the audience that this was the 30th anniversary of the publication of the first AC paper that he and his colleagues published, and he highlighted the progress that has been made from those early studies on AC to current research with the introduction of docetaxel in the 1990s.

    "Today at the 2005 SABCS, TC replaces AC as a better adjuvant chemotherapy regimen," he said.

    28th Annual SABCS: Abstract 40. Presented Dec. 11, 2005.

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited February 2010

    Hope2 - I just completed TC chemotherapy last week and it was doable.  I had no major problems.

  • Luah
    Luah Member Posts: 1,541
    edited February 2010

    I wonder what role the taxane played in that study, however. I'd like to see a study comparing AC-T to TC. I'm not sure if that's out there or not.

  • Morgan513
    Morgan513 Member Posts: 664
    edited February 2010

    Luah--google the topic.  I know there is a study out there comparing the two.

    Lorrie 

  • Lifeisbeautiful
    Lifeisbeautiful Member Posts: 36
    edited March 2010

    Thanks ladies, for chiming in.  I FINALLY got into this new oncologist today and after looking over my labs from the other cancer center, he said he was going to start me on EC instead of AC.  He believes my reactions were extreme and that I had to have been bleeding somewhere because of my counts.  I told him I had red diarrhea around the second and third days and maybe a little on the fourth but I was told it was the adriamycin.  He said no.  He said there's no doubt the AC was of benefit but he sees no reason to not continue with EC instead.  He said he used AC for years but has come to like the EC regiment better.  He's also going to use Taxotere instead of Taxol (personal preference again I guess) and possibly a platinum.  I like this guy.  He talked with me for over an hour and actually listened to me instead of treating me like I was a number.  He also said that while a second round of AC probably wouldn't have killed me, he said my body was nowhere near ready for it and I would have no doubt been extremely ill and there's just no sense in that.    

    Thenewme - They didn't even want to discuss my leg issue.  When I told the nurse what happened with my leg swelling and turning red, I informed her that I'd had a doppler study to rule out a blood clot.  Then I told her that the ER doc said that it has to be something related to the chemo but he wasn't sure because he's not an oncologist.  She LAUGHED at me.  That's right.  SHE LAUGHED.  She said "oh, that chemo has been out of your system for two weeks or more now."  Yeah.  we can all attest to how long chemo side effects linger.  She was unprofessional and it was all I could do to hold my tongue. 

    Babyface, I can completely relate to you.  My leg is still red and swollen but the swelling IS better.  I showed my current oncologist my leg and explained everything to him and he said "I don't know for sure what that is, but it's related to the chemo in some way".  I'll tell him what your findings were and see what he thinks.  Thank you so much for that information. 

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