To carbo or not to carbo

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hawkvand
hawkvand Member Posts: 34

I just finished up my last round of AC chemo and am super excited to be about halfway done with my chemo regimen. I’m gearing up for my taxol and asked about carbo In addition to taxol and ended up with quite the choice on my hands.


My MO has given me the choice as to weather I want to add carboplatin to my regimen every 3 weeks or not. She says data is pretty 50:50 on whether it is recommended but would hesitate since it may cause me to miss taxol infusions if the side effects are too much. Is anyone here on carbo as well as taxol that can share your experience with me? I've had no real noticeable symptoms on AC beyond hair loss but this may be because I'm pregnant (there is a theory that it's almost a weird protective from chemo) and I won't be when I start the taxol. I've got a little while to decide on the carbo and will be reading a lot of articles but any input would be appreciated. Part of me is tempted to go beast and try to add it on, but part of me is worried that if I add carbo now and have a recurrence that it will be one less weapon in my arsenal. That is probably a weird way to think of it though.

I truly expected my MO to have an opinion one way or another and was super thrown off by her response. She seemed to lean against it but said she would do it if I wanted. I would like to add that I have sought out several second opinions and this is not an option right now due to covid so this is truly up to me to research and choose. Thanks for any inipt

Comments

  • NinjaMeow
    NinjaMeow Member Posts: 41
    edited April 2020

    Not to sound strange but it may help to write out pros/cons on paper then bring it back to you MO for more conversation. I don’t think there is a silver bullet answer but whatever your decision is knowing you made the best based on info at the time. There will always be a “what if” when it comes to cancer.

  • SoulShine1969
    SoulShine1969 Member Posts: 3,047
    edited April 2020

    hawkvand-

    I would strongly recommend Carboplatin. I am TN and BRCA1 positive and I added Carboplatin to my ACT. Five years later I’m still here. Granted I wasn’t pregnant when I went through treatment, but I believe I’m still here because I threw everything I could at the cancer. I hear what you’re saying about keeping it for later if you need it. My thinking is try to kill it all now. I lost my sister and a close friend to TNBC; they both had ACT without Carboplatin.

    I know you probably just want to be finished with chemo as quickly as possible, I really get it. But please please pretty please consider throwing Carboplatin at this too.

    If you need anything or have questions I’m here for you. You can do this.

    Love and Hugs,

    Rebecca


  • Beesy_The_Other_One
    Beesy_The_Other_One Member Posts: 274
    edited April 2020

    I think your very young age should be a major factor in your decision, and this study addresses that very issue: Adding Carboplatin to A/C + T

    Hawkvand, I think I remember reading that Rebecca, above, added the Carboplatin to the end of the Taxol treatments. It would extend the time of your treatment (which we all agree is a bummer) but it would also not overload your body all at once and make the treatment more tolerable.

    I'm with Rebecca, but you already know that because of my PM. 😉

  • hawkvand
    hawkvand Member Posts: 34
    edited May 2020

    thank you for your reply. I think you’re right and I’m just going to do it. Can you tell me how they worked the carbo into your schedule? I think my MO would do it every 3 doses with the taxol. Did you get neulasta with your carbo treatments? And no worries about pregnancy since I’ll have delivered before I start the taxol.

  • SoulShine1969
    SoulShine1969 Member Posts: 3,047
    edited May 2020

    I’m pretty sure I had Carboplatin at the end by itself. Yes, I gave myself Nuelasta shots a few days after chemo so I wouldn’t have to go back to the treatment center (easy enough). I had a few delays due to low WBC, treated with blood infusions but no major setbacks.

  • hawkvand
    hawkvand Member Posts: 34
    edited May 2020

    how would you compare the side effects of carbo vs ac if you can remember? Do you remember how long the carbo regimen was? I’ve not had any real issues to speak of from the ac so I’m hoping I can handle the carbo. I’ll have to talk to my MO and see if there is any flexibility on how she’d be willing to order the carbo with or at the end of the taxol. Thanks again for your encouragement.

  • SoulShine1969
    SoulShine1969 Member Posts: 3,047
    edited May 2020

    If I’m remembering correctly, I believe I had four rounds of Carboplatin every two weeks. Although, I think it was more like every three weeks due to blood counts. As far as side effects, I don’t recall Carboplatin side effects being worse than Adriamycin. Throughout all my rounds fatigue and shortness of breath stand out to me now as what I recall most. It wasn’t too bad.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited May 2020

    My advice is to go for the max right now. and get the carboplatin. Effective chemo is your best shot to be around for many decades. Do whatever integrative therapies make sense, on top of all the chemo that makes sense. Personally I thought the SEs from Carboplatin /Taxotere were pretty doable-- other than the fatigue that hit me mostly in the last month. I did all I could to lessen SEs and those practices (fasting, exercise, icing, etc) stood me in good stead.

  • hawkvand
    hawkvand Member Posts: 34
    edited May 2020

    thanks for the encouragement. It’ll be nice to be able to exercise more easily and have fasting as an option once I deliver and start the carbo/taxol. I WAS able to talk my MO into a status check ultrasound after a couple of requests so I’ll know the status of my tumor a bit better before I start everything. I’m thinking they’ll give me neulasta when I get my carbo doses as well to make sure my counts don’t drop too low. So far with AC and neulasta they’ve been staying up pretty well.

  • SoulShine1969
    SoulShine1969 Member Posts: 3,047
    edited May 2020

    I agree with everything Santabarbarian had to say. Give it everything you can. In a year from now you’ll be in a much better place. Keep us updated, we’d all love to hear how everything is going.

    Keeping you in my thoughts and prayers.

  • Sam0623
    Sam0623 Member Posts: 110
    edited May 2020

    I pushed my doctor for Carbo as well, and her response was very similar to yours. She was ok with me doing it, but wanted to make sure it didn't impact my schedule for Taxol. I was supposed to get it every 3 weeks(4 total), but it messed up my WBC so much I only ended up getting 2 doses (of which the 2nd was a reduced dose). It started to delay my Taxol which my doctor was just not willing to do. I will also say I never really got sick throughout chemo, other than right after my first Carbo infusion (I actually threw up at the cancer center and most of that night). But do I regret trying it? Not at all. As others have said I believe it's best to do as much as you can in the beginning. I was young like you (31 when diagnosed) and had 2 young kids at the time. I got several 2nd opinions and honestly I felt like so many of them didn't know what to tell me to do- You have to do what you feel most comfortable with. I ended up having no real response to chemo, which for me means it probably didn't work anyway, so if I need to go into treatment again, I now know that wouldn't be a good option.

  • hawkvand
    hawkvand Member Posts: 34
    edited May 2020

    Sam, thank you so much for your reply. I’m hoping it won’t delay my taxol at all but I’m okay with ditching it if I need to. I haven’t had any big side effects from ac so I’m hoping I can handle this as well. Fingers SUPER crossed! I got my first wbc below 3 the week after my last ac treatment. They’ve been trending a little lower each time so hopefully they can buck up for the carbo! I hate throwing up so much! It is one of my least favorite things so hopefully they can dose me really well with anti-emetics. Did you ice your hands and feet during treatment at all

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