Carboplatin/Taxotere/herceptin, I am calling it quits..

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VioletKali
VioletKali Member Posts: 243

You guys, I just cannot take it anymore. My body hurts all of the time, I feel like I have the flu. Blood transfusions constantly because my hemoglobin dips to 5 and 6, the fatigue is INSANE. My hct dipped to 13!! I am 32, and my physician states that he has not seen someone so young have such a massive drop.. I made the extreme choice to discontinue chemotherapy, but continue with Herceptin.

The doctor mentioned a few sessions with weekly Taxol, BUT it is still chemo, a taxane, and I am just done with the pain and fatigue, and nausea. I cannot function.

They say Taxol is "gentler", but I am reading some stories and it seems just the same... sigh..

I have had 2 chemo delays already, including one this past Monday. I am just DONE.

I needed to vent, sorry.

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Comments

  • CassieCat
    CassieCat Member Posts: 1,257
    edited December 2014

    VioletKali, I'm so sorry to hear it's been so hard on your body. I hope you will be able to find a treatment plan that works for you, and peace with whatever decisions you need to make. Maybe the Taxol will be more tolerable?

  • 208sandy
    208sandy Member Posts: 2,610
    edited December 2014

    You're allowed to vent - I encourage venting - bc is a crappy disease! I too am wondering if the taxol may be a little more tolerable - also you need to sit your onc down - or maybe your PCP would be a better choice and find a solution to the nausea - there are many, many drugs on the market to combat this now and you shouldn't be nauseated all the time - any chance you can get Emend with your next treatment - it is quite pricey but I was able to get it on my insurance plan six years ago when it was quite new - it is indeed a wonder drug - hope this helps - sending hugs your way. S.

  • KBeee
    KBeee Member Posts: 5,109
    edited December 2014

    Did they try decreasing your dosage? I am sorry you had such a horrible reaction. I remember the oncology nurse telling me that people who are on the thin side tend to get "overdosed" (as she called it) because dosage is based on body surface area, not weight. I hope your counts rise quickly and that you get to feeling better.

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited December 2014

    Dear Violet,

    It's so discouraging isn't it to be more sick from the chemo than cancer. I remember a few weeks when I couldn't take Emend, and I was ready to chuck the whole chemo thing entirely. I agree with the ladies above that maybe there is a nausea drug that will work. In any case, once you feel better, then you can revisit your decision to go off chemo. Your decision doesn't have to be forever.

    BTW, my chemo that I was ready to chuck has made me NED.

  • VioletKali
    VioletKali Member Posts: 243
    edited December 2014

    I do receive Emend as a pre chemo drug. Emend, Pepcid, Decadron, and benadryl are what I am infused with. I also have 8mg Zofran to take at home, as well as phenergan and compazine.

    It really is just too much for me. The cognitive factors are terrible too.

    The doctor did say he supported me, and that he felt that 4 rounds would be sufficient. I am continuing with Herceptin for sure!

    He has been amazing. He did say that sometimes patients can only handle 4 or 5 rounds of the 6, and that studies show no difference in survival between 4 and 6. I was so scared he would be mad at me for wanting to stop the "hard core" chemo, but he was not.

  • VioletKali
    VioletKali Member Posts: 243
    edited December 2014

    I can revisit it later, which is a good thing. He did mention a PET scan too. My tumor was 1.8 cm, and no node involvement.

    I guess I would be considered "thin". I have a big butt :P But I am thin otherwise..Lol

  • CassieCat
    CassieCat Member Posts: 1,257
    edited December 2014

    No node involvement is great, and you've had surgery already I can see. 4 rounds is still great!

  • 208sandy
    208sandy Member Posts: 2,610
    edited December 2014

    With no node involvement and the fact that the chemo hit you so hard even with all the anti-nausea drugs I'd say you're going to be o.k. - my BFF crashed after the very first chemo and went in and told her onc. - not gonna take it anymore and they lowered her dose - she's still NED 11 years later. Frankly, it's about quality of life IMHO.

  • formydaughter
    formydaughter Member Posts: 213
    edited December 2014

    violetkali - I too only had 4 rounds. I am in my continued Herceptin. My MO said that 4 rounds was enough for me - given my toxic rxn to it . I was hospitalized multiple times from it. And my premed list was the same as yours.

    There was a study published last Dec. showing that early stage patients were 98% disease free at the 3yr mark after having only Taxol. My MO said that my 4 rounds of TC gave me more than that. So, don't feel like you failed chemo. You didn't! When it was too toxic for me, my MO said he wouldn't give me any more even if I asked for it. I couldn't fathom asking for more. It was bad and I understand how you feel. The good news is that it gets better and you likely got more than enough. Check out the study - they presented in San Antonio last year. Your stats fit right within the test group posting the great results.

    Hugs!

  • GrammyR
    GrammyR Member Posts: 702
    edited December 2014

    What type of pain are you having. My only pain was after Neulasta shots.I did better with Neupogen. Also Epogen for red cells-it us unusual to need transfusions. Taxotere varies in SE. I got them all but many do not.

    Rest up and watch movies or listen to music. Drink lots of fluids to help w/the the energy.Many hugs and prayers coming your way.



  • VioletKali
    VioletKali Member Posts: 243
    edited December 2014

    208sandy~ Yeah, my nausea was BAD. I even resorted to trying some 'herbal' rememedies because I was desperate!! Did not touch it. But I toughed it out for 4 rounds....

    Formydaughter~ Thank you for that! I am already on treatment for bi polar depression, I have been stable 15 years, but the chemo/cancer thing has thrown me for a huge loop. I have crying episodes, episodes where I want to break something, it is awful. I will look into that study. I believe 4 is enough for me. He mentioned not doing the weekly Taxol because I am so young, and we wanted a more aggressive approach.. I think I have had enough aggression.

    GrammyR~ My RBC count took a HUGE hit every session. Iy dropped 2 points per round. :/The pain was flu like symptoms. I did not have Neulasta until my 2nd treatment. My entire body hurt as if I had the flu.

  • mpike42
    mpike42 Member Posts: 1
    edited December 2014

    Please don't quit. I went thrust the same thing with the cytoxin/adramycin. After a week in hospital with severe infection then 10 days twice a day visits for IV antibiotics I finally got back to chemo regimen. However it was the taxol weekly instead. Much milder impact on wbc and rbc counts. Still achy but nothing like the other chemo.

    Give taxol a try. Its milder because dose is smaller.

    Please. I'm in week 6 now So I know you can do this too.

  • Moderators
    Moderators Member Posts: 25,912
    edited December 2014

    Welcome mpike42 to our community, and thanks for sharing your experiences.

  • VioletKali
    VioletKali Member Posts: 243
    edited December 2014

    Thank you mpike42. Asking to move forward with Taxol only is something that was on my mind. The side effect of neuropathy scares me though, because my job requires my ability to use my hands well. I am a Nurse, so I insert IV's, draw blood, etc.. This is not an easy choice, for sure.

  • VioletKali
    VioletKali Member Posts: 243
    edited December 2014

    Oh, and I AM taking the Tamoxifen! That is one thing I 100% will do. I am also not stopping Herceptin!

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2014

    Violet,

    Only you know what your body can take. While your cancer is Grade 3, you caught it at stage 1, so maybe four rounds is enough. I did weekly Taxol for 12 weeks. In some ways, it was gentler than AC. But, I did have some mildly annoying SEs, like mild diarrhea (which I treated with Immodium AD), and dulled taste buds. I did not get neuropathy, though, other than some mild tingling in my fingertips/toetips. That seems to be fading, now that I've finished Taxol.

    Good luck!

  • AKJ
    AKJ Member Posts: 190
    edited December 2014

    Violet, I think your decision is totally reasonable. If there's no evidence that more chemo is going to be better, why do it?

  • VioletKali
    VioletKali Member Posts: 243
    edited December 2014

    I already have constant diarrhea from the TCH, so I am thinking I am *done* with the "hard core" chemotherapy. I did have a mastectomy, I am on herceptin, and I will do Tamoxifen, so I feel good about my choice. I actually do feel at peace.

    IF I have a recurrence, I will deal with it, use chemo, and fight the good fight. 6 rounds cannot guarantee me anything, even my physician said so.

  • rozem
    rozem Member Posts: 1,375
    edited December 2014

    Violet - here in Canada 4 rounds of TCH is actually quite common for stage 1.  I was offered this option but because I was borderline stage 2 (due to the size of my tumor which was just over 2 cm) I opted for a more aggressive chemo (Fec D).  I struggled too - landed in the hospital 3x and begged my onc to quit.  They lowered my dose of taxotere on the last 2 rounds and I felt much better, not great (its chemo after all) but I was able to get through it

  • april25
    april25 Member Posts: 772
    edited December 2014

    If your MO is saying that 4 rounds should be OK, then don't worry. They are just trying to hedge their bets with more rounds and if you'd rather not because of how badly it's affecting your body, it's entirely possible what you got is enough. I wish you all the best in the world!

  • VioletKali
    VioletKali Member Posts: 243
    edited December 2014

    Rozem~ Thank you for that. As I am reading, it appears that 4 rounds is very common with stage 1. I know my oncologist wanted to be aggressive due to my age, but I think that just because I am younger does not mean it will be easier. Some people do have a more difficult time than others. He supports me, which is great.

  • ssimmons66
    ssimmons66 Member Posts: 51
    edited December 2014

    Violet-

    I stopped after 4 rounds of chemo as well (was suppose to do 6)... but of course finished my herceptin. Like you, I couldn't take being sick ALL the time. I felt like the chemo was killing my body way more than the cancer! I was scared of lasting side effects.

    My family and friends all argues for me not to stop but I explained to them IF the cancer came back... I have been at complete peace with my choice.

    Here I am 5 years later, still cancer free! Praise GOD!! I made the right choice with a lot of prayer.

    Find peace with it and go with your heart!

    Praying for you!

    Sherri

  • GrammyR
    GrammyR Member Posts: 702
    edited December 2014

    ssimons- YEP I know the feeling, I wanted to stop after 4 rounds AC and got talked in to 4 rounds Taxol which left me w /permanent neuropathy of my feet . Then after 6 years it came back anyway. I had RADS last year which seems to be holding me for now but neuropathy bad in my right hand as well now. Still I keep sewing. God is good.

    I love St Simons- used to vacation there a lot .Blessings to all for a peaceful and pain free holiday

    Violet - I was much older than you so your case is much different. Mine is the hormonal type. Big hugs to you.ThumbsUp

  • frenchiegal
    frenchiegal Member Posts: 11
    edited December 2014

    Violet I totally understand the nausea issue. We tried every drug under the sun to help with my crazy nausea during A/C. It was completely debilitating. Emend took the edge off (sometimes) but I was ready to throw in the towel as well. I remember crying in the bathroom after my 2nd infusion thinking there was no way I would be able to endure anymore A/C because I was sick every single day. Long story short I stuck it out. I am now finishing up Taxol and it has been night and day for me. Nausea is pretty much gone. Still having a little fatigue and that's about it. Sending you good thoughts! :)

  • floaton
    floaton Member Posts: 181
    edited December 2014

    Violet, stopping chemo is such a difficult decision to make, so I'm glad your onc agrees and you've found some peace with it. I'm another youngish thinnish one who had a terrible time with chemo nausea and fatigue. I'm allergic to emend, so no help there, but none of the rest did much either. I stopped my taxol after only 2 doses due to difficulty feeling my feet and fear re: long term ability to walk, use my hands, and think. My onc waffled at the last minute and offered me more, but it was her idea in the first place to stop and I'm still glad I did. Similar to yours, she said 2 was probably nearly as good as 4, but doubted anyone would be willing to do the study. It hit me so hard it's taken me a year to reasonably recover fatigue-wise (still not where I was pre-chemo, but at least no longer sleeping 14 hours a day!) and now that I can do more I'm realizing that still if I stand or walk too much my feet hurt. Basically wanted to just say you're not alone, and sometimes you just know how much you can take and what you can't.

  • april25
    april25 Member Posts: 772
    edited December 2014

    I've just been admitted to the hospital a week after my first TCHP chemo session!

    I couldn't keep anything in (diarrhea like you would not believe). No working tastebuds... meat tastes like cardboard.... Stomach aches and burns. This is not a good start!

    I'm totally dehydrated. Kidney function and potassium too low...

    I'm not sure what's going to happen. They may need to wait longer cycles so I can recover a bit before the next. Lost 20 lbs this month.. but some of that was the stress of getting diagnosed. I thought things might settle down once treatment started... but no.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2014

    I think it sounds like you made a good decision for yourself.

    As you said you have Herceptin and Tamox, so that is targeting your Her2 and ER.

  • raspysqueen
    raspysqueen Member Posts: 8
    edited December 2014

    Hello all! So I went in for my 3rd round of TCH on Dec 19, but ended up having a blood transfusion instead! My RBC, hemoglobin, & platelets were too low. I went back today for treatment and they informed me that my doctor is removing the carboplatin for at least this treatment and #4 as well. They also told me I would not need the neulasta shot tomorrow. Has anyone ever heard of doctors removing drugs from a chemo regimen? Or not giving a neulasta shot? If so what was the outcome? Thanks :)

  • VioletKali
    VioletKali Member Posts: 243
    edited December 2014

    I am so sorry to hear that! I had a lot of those same symptoms, but I went back in office for fluids a few times. Yeah, NOT fun at all.

  • GrammyR
    GrammyR Member Posts: 702
    edited December 2014

    raspysqueen- The blood transfusion brought up your hemoglobin ,RBC and probably platelets. Also your WBC was probably much better and since they are holding the Carboplatin this lessons the need for Neulasta shots. Hang in there. Hugs coming way.

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